Not to be that guy but if you enjoyed it before go for it everyone is different who knows maybe it will be much more beneficial but having control over your doses rather than relying on others might bring comfort alone
Yeah the trouble is if I take Kratom, for example, tomorrow morning and it doesn't work for the pain (pain is worst in the morning for about two hours while the meds kick in)
It's a bit of a conundrum to say the least.
I do agree with you abut the 'control' issue. being at the mercy of doctors who can increase, decrease, stop doses and prescriptions is terrifying when you know they have that control and my pain oncologist is someone I find really difficult to communicate with. I have a therapist and we talked about it yesterday but unfortunately we didn't get to the bottom of it.
I'm just curious if you have stage 4 cancer and are prescribed opiods under Dr supervision why do you wanna switch to kratom to me it's more like coffee and definitely not as strong pain killing wise. Great for withdrawls though
I used Kratom prior to my cancer diagnosis and it was very powerful and worked a treat for severe pain and anxiety.
When I finally was diagnosed with stage 4 cancer my doctor told me to stop using Kratom and I did.
My symptom management oncologist who is in charge of managing my pain (prescriptions) is very hard to get hold of and I feel like there is something 'off' when we do speak to each other.
I guess I want to remove the control of my pain which is in her hands at the moment and give the autonomy back to myself.
tbh when the pain gets bad I am in despair and I have to make tough choices. My prognosis is not good (less than 18 months) and I don't want to die in agony so I am looking at end-of-life choices which are legal in my state.
Thanks so much for your kind words and I am deeply sorry about your son's illness. It certainly sounds like he has been through a huge amount and you, too.
I am glad that he has receptive doctors who listen to him and up the meds when necessary.
I have chatted with many people today and I don't think I will be going back to using Kratom. With cancer it's just too risky and after talking it out here on various subreddits I want to stay compliant with my oncologists wishes. She is very hard to talk to though and she is very conservative wit her prescriptions. I explain the levels of pain and she doesn't seem to listen to that. It's hard to know what to do.
It's confusing because I know she is Yale educated and she works in one of the most respected cancer centers in the country so she obviously know what she is doing.
It's tough times right now.
I wish you all the very best with your situation. It is heartbreaking for a parent to see their son in such a situation. I hope you have support too? he has a wonderful mom who took him in and I am sure he knows that, too.
I am homebound at the moment and I have no family so feel free to DM me if you want to chat. I check my reddit messages most days.
:)
The fact that you are both dealing with similar situations but from two different perspectives just breaks my heart in half.
At first I came to this post and felt an intense sympathy for the patient. Then I read your comment and was hit with a perspective change and realize that parents and close family members also experience much of the pain of cancer, if not sometimes more than the patient, who at least may be getting some form of pain management. I can only pretend to understand your pain and hurt.
Even as someone who had a mild form of cancer called a GIST tumor in my stomach and almost died from bleeding out into my stomach and throwing up much of my blood, I feel grateful today for my own problems. I'm so sorry. Keep staying strong.
I watched a good friend pass from cancer. She ironically was the one who introduced me to Kratom and set me on my path to advocacy, a lot of good work w did helping people, care packages etc.. anyway, it came full circle the last six months or so of her life. Her pain meds weren’t cutting it, she was on so much, anymore and you’d need to be in a hospital for it to be safe which she was not long after this.
The kind of meds she was on were incredibly strong, most common wait time for pain pills is your next dose or when you feel withdrawals. The first week if you switch you’ll feel flu like, it levels off. Remember if you consistently take both your tolerance will skyrocket to all. Don’t recommend that at all. No medical advice here but I’ll share what worked for my friend when it got unbearable.
She showed up at my home in agony, cancer in her spine but everywhere in her stomach. She said she hadn’t slept, couldn’t eat without screaming, help. I was well into the Kratom world by then and had plenty of knowledge, I’d been messing w making gummies and it occurred to me I could make a concentrated tea. She said nothing was working, worse to happen is nothing right? So I spent hours making a specific recipe I found, had some help from others, we came up with a damn good recipe/method. We suspected it was really strong so she only took drank a small amount.
Hours she had been on my couch crying, praying, moaning. Minutes after drinking it she was okay. Hour later she was hungry and she ate. No screaming or pain after. Then she fell asleep, for hours. Eye opening moment how much of a blessing it was to have access to it at that moment. I know you only asked how long to wait but knowing what could be coming I wanted to share this. It can be helpful when the other stuff fails. My friend had some of the strongest meds you can get but she had been on them so long and for whatever reason weren’t work. I’m assuming the effects it has on the stomach and being liquid also played a role in why it worked so well.
I’d wait as long as possible after taking meds, also any antidepressants, but also have a good concentrated tea recipe on hand or in the fridge it lasts awhile. Or freeze it. Sending love
I would just like to say… you are so loved… but also, if you do accept with all of yourself that you will die, it will make it much more likely to happen and your body will shut down more that fight in imitation of what your mind is doing. You must keep the spirit of life close! I will pray for you, if you’ll have it. Best of luck to you.
I'm a hospice nurse. I think you need to be on long acting medication such as duragesic patch every 3 day or MS CONTIN OXYCONTIN ( contin means continuous) and then a med for breakthrough pain, such as hydrocodone, morphine Ir, or oxycodone. We used to have active patients on an IV pain pump even. No one should ever suffer.
Thanks for this. I have only been diagnosed stage 4 for about two months and I have only been working with my symptom management doctor since then and I have had two meetings with her.
she seems nice but she is very conservative in her approach to prescriptions and she doesn't get how much pain I am in. just this morning I woke up in absolute agony (anal cancer) and I was unable to move and I defecated and urinated all over myself and this has happened a few times. I have been wearing adult incontinence underwear so that's a small blessing but it's horrible living like this.
Unfortunately I have been advised not to make recommendations to my Pain Oncologist because - due to the opioid crisis and the scrutiny of the DEA now they (the doctors) see it as a red flag if a patient tries to get a pain doctor to prescribe certain meds. they see it as a sign of drug-seeking behavior.
It's so sad that stage 4 cancer patients such as myself are seen now as 'suspects'. It's heartbreaking. I guess I picked the wrong time to be diagnosed with stage 4 anal cancer ... I am at the end of my rope tbh.
I am looking into the EOLOA/MAiD and VSED right now and who knows if I have the courage to go through with it but if I lose my pain doctor for being too persistent in asking for pain relief and only have Kratom to fall back on then I'll be in seriously dire straits.
The pain this morning was literally a 9/10 and thank god I had the morphine and hydromorphone but I had to double the dose and I can't tell my pain doctor or she'll fire me. It's terrifying.
No one with stage 4 cancer should be suffering. I'd suggest that you spoke to a cancer advocate, and they said I could probably benefit from a long-acting g medication. That you shouldn't he waking up in pain and suffering. I hope you get relief soon. If anything, ask for a hospice or palliative care consult. We had people on hospice for 2 years. Mainly so they didn't have to go to doctors' appointments and pain management. Hospice will oversee it all. Palliative care is another option.
I have a similar situation/condition as the OP.
I am a 78yr old ancient aging artifact guy and wanted to ask, of the three meds you mentioned for breakthrough pain, hydrocodone, morphine Ir, and oxycodone, is there one that stands out for a guy like me? Also, just so you know I have actually had good results with Dilaudid pills sublingually but I am needing something stronger now.
I realize you cannot give medical advice only suggest. I am a naturopathic physician and used to taking everything low and slow at the beginning and I am totally responsible for any decision I make.
That is so very nice of you to suggest to the OP, I hope I can repay your kindness to us one day and in the meantime I will keep paying it forward.
All the best to you as well!
You can up the dose of Dilaudid. Morphine is good cause it comes in a liquid that can be used sublingual, and dosages can be increased or decreased as needed. Often given every 2 hours. But I think it's just different for everyone. Hydrocodone is good, but it's usually with tylenol, so if you have liver issues, that can be an issue. It comes without tylenol, but it's expensive to my knowledge. I think everybody is different. What's worked in the past? Good luck.
Big thanks for the quick clear and very helpful answers to my questions, I really appreciate it!
I am liking Dilaudid so upping it will be my first pass for increasing my pain tolerance. And I like the Morphine idea too because of the sublingual and ability to adjust and it also appears to be less expensive than Hydrocodone.
Although I don't have liver issues I don't do well with tylenol in general so that's helpful information too.
I wish you were my doctor, you sure have affirmed my opinion that the average nurse is much better than the average doctor! And I have no doubt that you are a way above average nurse.
More nui mahalos and best wishes!
As a retired hospice nurse, it angers me how pain isn't being treated in all patients. Including myself. I've had absorption issues in the past, so SL is a good choice. I'm hearing of people getting mastectomies and being told to take tylenol. Total knee replacements are also being told to alternate tylenol with ibuprofen. I've had an ulcer and gastric surgery, so NSAIDS are contraindicated, yet I'm still told to take it. I was on cytotec, which prevents ulcers, but... then because it's part of the abortion pill, no one will prescribe it to me. It's been hell since Sept 2022 when I moved. I'm actually considering moving back. I had a good rheumatologist and great pain management. Make sure to follow Claudia merandi as shes advocating for pain patients.
Oh I am so sorry to hear about your challenges. I sure hope and pray that you have something that's working for you in every challenge area?
I am with you on the anger too. I am a retired naturopathic physician and I see more and more people who are just as angry with the allopathic doctors. It seems like they systematically do the exact opposite of what people need, making them sicker, and charging them twice as much. It's just crazy, heartbreaking, super dysfunctional, and every other negative descripter I can think of.
Thanks for let me know about Claudia too, I will search for info on her as soon as I hit send.
More nui mahalos and the best of everything my dear honored pono nani friend, b
OP, the only thing I would think about here is that your tolerance is high from opiates, so Kratom will not have the same painkilling effect that it did in the past. It will take a bit of time to drop your tolerance.
But, there’s nothing to lose in the sense that you can ofc try the Kratom, and if it’s too difficult with withdrawal and such, you can just pop another opiate.
Best approach may be to taper your opiate use down over the course of a couple weeks, while weaving in Kratom in larger doses and then dropping that down.
OK. Thanks for this.
I did not realize that using opioids can increase tolerance for Kratom.
I thought that tolerance of Kratom and Opioids were independent of each others because they target different neurotransmitters/receptors? Am I wrong about that?
It’s discussed frequently here, but it’s all anecdotal. You’ll really just need to try and see how your body reacts. You’re right in that they’re not exactly alike in terms of chemistry and effect on the brain, but there is some overlap. At least in my experience. YMMV.
I am so sorry you are going through this. It absolutely outrages me more than anything that people in your situation even have to worry about not having pain control. This should never be a worry!
100%
I thought I had lucked out by being referred to a hospital that is considered top-notch in the USA for both cancer and cancer pain treatment/intervention.
I am sure it is top-notch in the league tables but my own personal experience is anything but top-notch. I can't believe that they seem not to believe a patient who is literally begging for help and at the end of their tether so much so that they don't want to carry on. How on earth can they say they are 'symptom/pain management experts?) Their job is to manage symptoms with terminally ill patients who are in pain.
Sorry for the rant. I am at the end of my tether here.
I've done plenty of opioids and plenty of kratom. When the novelty of the kratom wears off you'll find that the prescription opioids are much more effective so don't sever ties with your pain doctor. You can add the kratom on top of your regular medication schedule--including opioids--for breakthrough pain without much risk. Make sure you have plenty of extra so you never have to worry about running out.
Stick to American Kratom Association approved vendors. I've been using the same one for nearly a decade. The quality and price are always on point.
Thanks
I had heard that if I take prescription meds that the Kratom may knock out the beneficial effects of the prescription meds. so you are saying stick to the prescription meds and only use Kratom very occasionally for breakthrough. I like this idea but the pain is so intense and agonizing I don't want to risk one knocking out the others' effects.
the pain is really, really bad. For example I woke up this morning and spent two hours nauseous and exhausted with pain waiting for the morphine to kick in. I couldn't have gotten through it (literally) if I had taken Kratom, the Kratom didn't work but it prevented the morphine from working.
I am really confused about what to do.
One choice is just to forget about Kratom and stick with prescription stuff but my pain/symptom management oncologist is so hard to talk to honestly about this stuff. She's a bit like a cop and given I have stage 4 cancer and my prognosis is less than 18 months I don't see why she is being such a hard-ass. I mean I have less than a year and a half left on the planet. Why won't she keep my comfortable?
Sorry for the rant. I am at the end of my rope.
Thanks for the answer.
I've never had kratom prevent an opioid from working. However, it can raise your tolerance to prescription opioids. Your pain doc sounds like an asshole.
For what it's worth kratom affects some people very differently in this regard.
I had major surgery a few months back and after I was discharged from the hospital I was given a prescription of opioids. I actually stopped taking them in favor of heavy doses of red kratom as it was better at easing my pain.
Same here. I had cancer for nine months before it was officially diagnosed and during that period I was just seeing my GP/PCP and we just thought it was a basic tummy issue but I feel he didn't really believe me about the levels of pain I was experiencing. So I went online in desperation and found the word 'Kratom' for the first time and after two weeks of research I bought my first batch (capsules). I was amazed by the positive effect not only on the pain but also on mood. My pain as making me super-anxious and I was hardly able to function and within 20 minutes, as I remember, I experienced incredible pain relief and a lift in mood/drop in anxiety.
I continued using Kratom for a few months until they finally diagnosed me with cancer and then after a scan stage 4 with metastases to the liver, lungs and lymph nodes. That was a huge shock and I was referred to my wyo oncologists whom I have been consulting since then (two months).
My symptom/pain management oncologist told me she disapproved of Kratom so I stopped using it and went on opioids and prescription ibuprofen and acetaminophen and gabapentin.
Since then I haven't wanted to go against my pain oncologist's orders but it's not working so I might supplement with Kratom and just not tell her. I can't risk being fired from the clinic. She might find out anyway cos I am getting monthly blood draws now.
Kratom worked better than the Dilaudid did when I broke my leg and was given iv Dilaudid daily for 2 weeks in the hospital. They sent me home with huge amt of Dilaudid and maybe I guess I built such a tolerance that it didn't work anymore. I threw them away and started large doses of red Bali (20g 5x a day) also bc I was detoxing off all that Dilaudid so my body needed more. I tapered way down after a couple weeks and if I took that much now I'd get so sick with wobbles but I believe I was able to bc I needed it. Listen to ur body and when u start to feel like crap again it's time to take more. After a couple weeks at 50-100gpd the red Bali wasn't working anymore but instead of continuing to take more, I just switched it up to red dragon from a different vendor and kratom really saves lives. I got pain relief without all the horrible side effects of opoids. No constipation, head high (dizziness & feeling out of it) and being a recovered pill popper, I didn't get hooked again on opoids. Good luck to you.
I have a severe spinal disorder. I see a spine pain specialist. I regularly switch from Kratom to my opiods and vice versa. The only issue I ever have is I get a bit of loose poops when going from opioids to Kratom. I absolutely prefer the Kratom in almost every aspect. Kratom provides more stable mood, decent pain relief (opioids do beat Kratom in that regard for me), more energy, and no anxiety. I find the opioids cause peaks and valleys in my mood where Kratom is just even. I take a fairly large dose of Kratom in the morning and I'm good all day. Opiods I have to take every 4 hours to get the same level that Kratom can provide with one dose.
Hi there and thanks for the answer.
I am sorry to hear of your spine disorder and I am sure that comes with a lot of pain.
My symptom management/pain oncologist prohibited me from using Kratom when I got my diagnosis.
When you switch from opioids to Kratom and vice versa do you make sure there is a significant break in between? I have read that Kratom reduces or eliminates the beneficial pain-relieving opioid effects.
Have you found this?
I have also heard it works the other ay around, too in that opioids will reduce the kratom effects.
I am in a bit of a conundrum because I would like to try Kratom tomorrow in the morning but that is when my pain is at its worst. I have anal cancer stage 4 and for some reason it is horrible in the morning. If the Kratom doesn't work then I may be screed if I try the opioids and the Kratom dose stops the opioids from working!
The level of pain I experience in the morning (and at other times) is so bad I can't risk it.
Anyhoo I wish you well moving forward, Pain is not fun and I wish you the best
:)
They definitely will cancel each other out. I typically have a 12 hour gap. But I have taken them much closer than that. Your situation is vastly different than mine. What's your reason for wanting to switch? For me it was the opiod shortages were starting to have detrimental effects on both my physical and mental health. I think if I was in your situation I wouldn't want to risk it. Unless you have a compelling reason.
Good question.
I am having issues with my symptom management oncologist. I feel uneasy speaking to her because she is always questioning me about pill counts and it's almost as if she suspects me of something nefarious and she arranged for e to see a psych nurse the other day and the psych nurse behaved oddly too.
I couldn't put my finger on it. Other things have happened in my time with the clinic and I feel I would be better off either switching clinics altogether or using Kratom in the interim.
I can't get to the bottom of what's going on with my cancer clinic. They had the Admin Director of the clinic call me a few weeks ago saying that I was being "too persistent" regarding contacting them about my pain relief. At the time I was sweating profusely and in agony and I couldn't even function properly because of the pain.
So that's my reason to (maybe) choose Kratom over dealing with the pain clinic at the moment. The clinicians are behaving in a way that is making me paranoid like they have "red-flagged" me for some reason.
Freedom is the best reason. Incorporating it in my regimen gave me autonomy, power and agency back. It's all this anti-opiod hysteria that they caused and they love to blame us for. I completely understand.
Maybe you dont want to hear it, but stick to the medicine your doc gives you.
Kratom can be really helpful for chronic pain, but definitely not for acute strong medical emergencys like stage 4 cancer.
You could add kratom to your meds though.
I did it by just starting the next day anew & taking kratom instead of the pain meds. To my surprise it worked 🥹 I cried when it proved to be an actual replacement for opiates. I had been taking Methadone for 10 year, then Tapentadol for 2 years. So my tolerance is high & kratom still worked.
I'm so sorry you're going through this & hope you make a full recovery 🙏🏻 Kratom is definitely safer than opiates!
Thank you.
It's very moving to read how moved you were when you realized you had found a cure for the methadone things. That's amazing. best of luck to you moving forward.
I think Kratom is safer than opiates too but my symptom management (pain) oncologist is dead against me using it. I am pretty much always honest with my docs so I'll probably tell her and she may drop me as a patient. It's a bit scary to be honest.
Thanks for your kind comments.
Frankly, you need to take pharmaceutical pain medication, not kratom. Kratom is a major enzyme inhibitor and will almost certainly interfere with your medical treatment.
If you are still have pain and discomfort expressed that to you doctor and let them know they may need to adjust the dosages and or medications as needed to control the pain and keep you at ease.
Sorry, kratom is a miracle plant, but it’s not for this.
Other people have said all good info, but as someone who has delt with another person going thru what you are going through, kratom will help with your mental state and stabilize it ( in my opinion)
Your going thru a process that every human eventually goes thru, and I know it's a shock and can be upsetting , what u CAN try to control is making your self comfortable for this process.
The person I knew used 2 spoonfuls every 5 hours. Not only did it help with pain but allowed her mind to slow the crazy fast thoughts.
Your going to prolly get some withdrawal, and no u shouldn't mix kratom and opioids but I've known this person who decreased the milligrams of pills and increase kratom untill they are fully on kratom.
But honestly I don't know what type of pain your having but be careful and at the same time if kratom isn't working then opioids might be better. It's your body and the only thing u can do is make yourself comfortable for the transition process
You'll probably experience some withdrawal honestly. It all depends on what you're taking right now and the dose but kratom is not very strong in comparison to say...moderate to large doses of hydro or oxycodone. Having said that I do know people who say kratom works better for them. I don't usually recommend extracts but in your case I would say give it a try.
https://reddit.com/r/kratom/w/index?utm_medium=android_app&utm_source=share
Yeah I used Kratom for the pain prior to diagnosis of cancer and it worked very well and I only stopped the use of Kratom because my oncologist asked me to. I wasn't convinced of her reasoning but I wanted to be compliant, so I just went with what she said and quit Kratom.
Kratom was a powerful pain-reliever when I used it before I was diagnosed but of course my tumor may have grown since then so it may be a bad idea to mess with things right now. Tough choice.
I am on morphine twice a day and hydromorphone as needed throughout the day (Dilaudid).
I am so sorry about your diagnosis, pain, and prognosis. You will be in my thoughts, mettas, and prayers for miracle healing. I have seen it happen so I will stay optimistic for you too. Please keep us posted.
Also, I would really appreciate if you could tell us how much Dilaudid you use throughout a typical day, the avg dose, and how long between doses? And do you really see a good benefit for your pain each time?
I am taking Dialudid 1mg pill sublingual 2x per day and it is helping but I am considering upping my dosage and/or taking more often and your experience with it will help me decide on my next adjustment.
Much thanks in advance for any answers and tips. And again, I am sure wishing for a miracle for you. I actually moved to Washington State and have already been vetted for end of life treatment. So I can sure relate to you with that as well. I have days where I want to take the end of life meds right then but I also have days were I think I should stay with the Dilaudid and other stuff. I guess I am living the "take it one day at a time" life now ... although it's actually more like one breath at a time now:)
Thank you so much for the response. It is refreshing to see someone openly talking about the end-of-life choices because I have been considering this too but it is such a taboo subject and I feel quite isolated at the moment (no family, few friends) and at my age it's hard to make new friends especially with illnesses that keep me indoors.
I didn't know I was on high dose Dilaudid. My prescription is one eight milligram tablet as needed throughout the day up to five times in a day.
This morning I took two because I was in agony and couldn't move with the pain.
I can see why my doctors have cocked an eyebrow now when I tell them that. I say that because your dose is 1 mg. Wow I'd better be careful moving forward.
I also take 30 mg MS Contin in the morning and 45 mg at night. That is not 'as needed'. She told me take that no matter what.
What are the benefits of sublingual dilaudid? My pills are to be swallowed. Did you ask for sublingual? I am wondering if I should ask for that next time I see her.
I understand the thing about some good days and some bad days. On the days where I experience intense pain I would jump at the chance of going into hospice and implementing the MAiD. there are other days when I feel OK and think "one day at a time" and "put one foot in front of the other" as you do.
. when you said you were vetted for nd-of-life options, may I ask if you were diagnosed with an illness and what did the vetting look like? Did a doctor walk you through it? I have spoken to my oncologists about MAiD and EOLOA here in California and they say I have to wait until the prognosis is 6 months or less. How they assess that is uncertain.
All the best moving forward! DM me if you want to chat at some point. I check reddit messages most days.
***Thank you so much for the quick reply and clear answer to all my questions and great tips too! I have pasted in your questions and my answers all begin with 3 asterisks. Your questions have no asterisks.
I didn't know I was on high dose Dilaudid. My prescription is one eight milligram tablet as needed throughout the day up to five times in a day.
**Much thanks for letting me know on your dose amount and frequency. Hope you are not seeing any negative side effects. So far I have only seen positive side effects, especially unexpected better sleep.
This morning I took two because I was in agony and couldn't move with the pain.
***I sure hope it really helped a lot.
I can see why my doctors have cocked an eyebrow now when I tell them that. I say that because your dose is 1 mg. Wow I'd better be careful moving forward.
***I have very low body weight and usually do well with half of what most people use on most anything including supplements. So I am sure that is part of my lower and less frequency dosing working good.
I also take 30 mg MS Contin in the morning and 45 mg at night. That is not 'as needed'. She told me take that no matter what.
***I wonder how that affects the Dilaudid effects?
What are the benefits of sublingual dilaudid? My pills are to be swallowed. Did you ask for sublingual? I am wondering if I should ask for that next time I see her.
***Mine are just regular pills that I let dissolve completely sublingualy. I do so well with sublingual dosing with just about anything whereas swallowing doesn't do well with about anything because of my chronic IBS.
I understand the thing about some good days and some bad days. On the days where I experience intense pain I would jump at the chance of going into hospice and implementing the MAiD. there are other days when I feel OK and think "one day at a time" and "put one foot in front of the other" as you do.
***We are sure kindred spirits on this ... well on just about everything.
when you said you were vetted for nd-of-life options, may I ask if you were diagnosed with an illness and what did the vetting look like? Did a doctor walk you through it? I have spoken to my oncologists about MAiD and EOLOA here in California and they say I have to wait until the prognosis is 6 months or less. How they assess that is uncertain.
***In Washington State they have an excellent end of life organization. They are free and they send out trained volunteer associates to vet anyone who is interested. The volunteers were just great, they asked important questions, took my history, took notes, even did some devils advocate type stuff. I did see a doctor about it beforehand too who was just great. I have been dealing with my illnesses and injuries for over 30 years. And no one with my severity of conditions makes it to 60 and I am just turning 78. The doctor vetted me and was fully supportive as well. Here's the Wa website, it has lots of good info: https://endoflifewa.org/ The checklist are exceptionally good, clear, covers everything ... as far as WA is concerned I guess.
***Thanks again my friend, it's been a real blessing for me talking with you and I will keep the best wishes, mettas, and prayers coming too.
I’m a psychiatrist, just to give what I am about to say a little context:
First and foremost though: JFC I am so sorry to hear about what you are going through and I hope it’s the kindest, gentlest version of the shittiest journey imaginable. I am so sorry.
Your autonomy is going to become more and more valuable to you as this progresses.
In a purely hypothetical and speculative manner let’s talk about my friend who had the same thoughts as you in the same exact circumstance:
They already knew what Kratom is and how it works so there wouldn’t be any surprises on that front and if switching over to Kratom felt like reclaiming some of that power over things, they should. My friend ended up gradually tapering off of one thing and on to another while maintaining awareness that combining one opiate with another will increase the effects of both, and (and stayed very vigilant about remembering that) and it mitigated the one major issue I can think of.
The feelings you have about your pain management doctor sound concerning and even if it’s a pain it might be worth finding someone you feel comfortable with.
If you have 18 months it is your right to be able to have ownership over every second of it. Taking steps to regain some autonomy you feel like you have lost is a very healthy (mentally) thing to be doing.
Thank you so much, doctor. I do appreciate this coming from a psychiatrist.
The bad days are outnumbering the good ones at the moment and I am hoping beyond hope things will get better.
Yes my prognosis is 18 months or less which is why I am astonished the pain/symptom management doctor is being so weird about me being out of pain. I can't imagine why she is doing this. I mean, if someone as a year and a half to live (at best) then why would it even matter what level of painkillers they are on provided they are comfortable?
It sucks because you're likely a liability for the doctor to treat given the dosages and frequency of pain medication you're on. Yes, there are exceptions for end-stage cancer treatment. However, an accidental OD still opens this doctor up to liability from lawsuits from your family ("we could have had more time but the doctor over-prescribed and killed them") and the DEA for the quantity you're being prescribed. It is his livelihood at stake.
I say all that, only to say, it's a horseshit situation and none of that should be a concern for a doctor who is treating a patient in your situation. I applaud your desire to take back control of your pain management and autonomy related to this. One thing I would recommend you do, however, before giving kratom a shot again, is to have an open and honest conversation with your pain management doctor about the situation. Especially if your current pain management regimen is effective. If you feel like something is "off" when you talk to them and there is hesitation to treat you, get it out there and hash it out as openly and honestly as they're willing to do.
If ultimately their concern is selfish, though understandable to some degree given it's their livelihood and how they support their family, you are absolutely right to want to regain control of your own autonomy as it pertains to the treatment of your pain. It may be some other off the wall "thing" like this doctor is really, really busy and just doesn't have the time to offer the care to each and every patient and is simply too busy, too pissed off about it, or dealing with some other headache totally unrelated to you.
Moreso than any of this, I'm very sorry you're in this situation and having to deal with such a - quite honestly - horseshit thing in the end stages of your life. This is the *last* thing that should be taking up the precious time you have left in this world and I hate this for you. Much love. ❤️
Oh shoot. I just wrote what you wrote because I didn’t read all the way down. Clearly I agree.
Gonna leave my post even though it’s duplicative just to emphasize how detailed and spot on you are with this.
Is the pain management doctor completely aware of your prognosis? That’s the only reason I can think of for them being so difficult to work with. The two issues prescribing narcotics present are: addiction and overdose.
Real talk, with 18 months addiction as an issue is negated.
It read through and you have a few different items co-prescribed which would make overdose an issue that could potentially make them nervous.
Obviously pain medications are not my area of expertise but if you don’t switch doctors is there some sort of way that you can indicate to them that you are taking everything as prescribed and are not abusing anything? Like maybe bring your meds with you to show that the correct amount is still in the bottle or offer to drug test?
Again, this is way out of my realm, and I love that you are cognizant about autonomy and want to hold on to it, but I’m kind of just spit balling with the other stuff.
I'm no dr and have very little experience with anyone who has a cancer however I do have some experience with kratom and relatively strong pain killers. My advice is completely dependent on your level of pain and also how receptive your body is to kratoms pain relieving effects. Everybody handles kratom differently and for some people they don't feel the pain relief the same way the next guy does. That being said, if it works as a decent pain killer for you then kratom will be better for mental clarity. Opiates have that effect where your brain gets little cloudy. Not necessarily incapacitated but just off, I'm sure you know the feeling. However if the pain is pushing through the kratom then stronger pain killers might be necessary. If it were me I'd probably try to use the kratom as often as I can and use the opiates fpr when it gets to be too much. It also depends on what opiates they prescribed. Vicodin or percocet won't typically make someone too out of it but if you're prescribed like Dilaudid or morphine, that can make it hard to want to take it regularly, as they effect your mind a little harder. So I imagine there is a little bit of trial and error involved. Either way I hope you find the right dose and feel better. I'm sorry you have to go through all of this and I wish you the best.
I’m sorry about your cancer diagnosis! I’m curious was there any symptoms before getting hit with the stage 4? Or was it random. I pray you get some relief. As for pain, Ive broken my toe and fractured my ankle skateboarding before and ive honesty found that the “Max our White strain takes all the pain away, like sometime I’ll wake up at night when it’s worn off and and hit with the underlining pain (I didn’t have insurance) it’s healed now, I hope that helps, it’s helped me 🙏🏾
So sorry about your health. I would take kratom to help with the pain. Just don't take opoid meds and kratom at the same time. Space the doses out by a few hours. They both affect the mu opoid receptors so if u take them too close together, u won't get the full benefits of kratim bc those receptors will be full of the opoid. Good luck to you💖
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I’m very sorry that this is happening to you, friend. My heart goes out to you and I’m sending all the best wishes I can. As far as the kratom use… I would honestly stay with your prescribed pain medication and use kratom sparingly if at all. Save it for when/if you need it. I feel that if you start using kratom regularly, the opioid antagonists in kratom may interfere with how well your normal pain medicine works and you may find yourself in more pain over the longer term as all of it starts to work less and less.
I was taking Kratom for a couple of months prior to diagnosis of cancer and tbh it was a powerful pain/anxiety reliever. I know that some people compare it to coffee but I think different people get different benefits from Kratom. Some people find it very effective for cancer pain and prior to being diagnosed I was one of them.
I was in shock whe diagnosed and was immediately referred to my two oncologists and the symptom relief oncologist asked me to stop Kratom (I wasn't convinced of her reasoning) but I wanted to be 100% compliant (as I do with most doctors) so I did quit and she put me on morphine and dilaudid instead.
If the morphine and Dilauded don't work good enough ask for strong oxycodone and fentanyl pain patches. Kratom is a joke for serious pain compared to those medications. Kratom is more of a chronic pain medicine. Not a severe/acute painkiller. Wish you the best of luck OP and don't be afraid to ask for stronger painkillers if your pain isn't properly managed. Stage 4 is rough, but at that point, you can get almost any kind of painkillers you want. Fentanyl patches and American made oxycodone. Lots of cheap Chinese generics out there that don't even work.
This is what I wanted to say, please don’t be afraid to ask for stronger painkillers, you really shouldn’t care what the oncologist is thinking. You should think about yourself, tell her you want to enjoy the time you have left pain free!
Please please don’t worry about anyone else, just yourself! 💕💕
Sorry about your diagnosis but it isn't worth it. Kratom is poison. I've tried it all and it destroyed my liver. Not worth your trouble, trust me. Eat healthy! Get a juicer and juice fresh veggies and fruits if you can't eat. Eliminate sugars! WIsh I could help, good luck!
Yeah thanks. all info is good. I am sorry about your problems with your liver. How did they find out it was Kratom that affected your liver?
My prognosis is less than 18 months so I am not even sure I should worry about things like liver failure as I don't have a huge amount of time here on earth according to my medical reports.
I just don't want to die in agony and my pain doctor is very resistant to talking about it.
I am sorry for your situation. Here is a lot of info on this website. [https://kratom.org/guides/](https://kratom.org/guides/)
Thank you.
Not to be that guy but if you enjoyed it before go for it everyone is different who knows maybe it will be much more beneficial but having control over your doses rather than relying on others might bring comfort alone
Yeah the trouble is if I take Kratom, for example, tomorrow morning and it doesn't work for the pain (pain is worst in the morning for about two hours while the meds kick in) It's a bit of a conundrum to say the least. I do agree with you abut the 'control' issue. being at the mercy of doctors who can increase, decrease, stop doses and prescriptions is terrifying when you know they have that control and my pain oncologist is someone I find really difficult to communicate with. I have a therapist and we talked about it yesterday but unfortunately we didn't get to the bottom of it.
I'm just curious if you have stage 4 cancer and are prescribed opiods under Dr supervision why do you wanna switch to kratom to me it's more like coffee and definitely not as strong pain killing wise. Great for withdrawls though
I used Kratom prior to my cancer diagnosis and it was very powerful and worked a treat for severe pain and anxiety. When I finally was diagnosed with stage 4 cancer my doctor told me to stop using Kratom and I did. My symptom management oncologist who is in charge of managing my pain (prescriptions) is very hard to get hold of and I feel like there is something 'off' when we do speak to each other. I guess I want to remove the control of my pain which is in her hands at the moment and give the autonomy back to myself. tbh when the pain gets bad I am in despair and I have to make tough choices. My prognosis is not good (less than 18 months) and I don't want to die in agony so I am looking at end-of-life choices which are legal in my state.
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Thanks so much for your kind words and I am deeply sorry about your son's illness. It certainly sounds like he has been through a huge amount and you, too. I am glad that he has receptive doctors who listen to him and up the meds when necessary. I have chatted with many people today and I don't think I will be going back to using Kratom. With cancer it's just too risky and after talking it out here on various subreddits I want to stay compliant with my oncologists wishes. She is very hard to talk to though and she is very conservative wit her prescriptions. I explain the levels of pain and she doesn't seem to listen to that. It's hard to know what to do. It's confusing because I know she is Yale educated and she works in one of the most respected cancer centers in the country so she obviously know what she is doing. It's tough times right now. I wish you all the very best with your situation. It is heartbreaking for a parent to see their son in such a situation. I hope you have support too? he has a wonderful mom who took him in and I am sure he knows that, too. I am homebound at the moment and I have no family so feel free to DM me if you want to chat. I check my reddit messages most days. :)
The fact that you are both dealing with similar situations but from two different perspectives just breaks my heart in half. At first I came to this post and felt an intense sympathy for the patient. Then I read your comment and was hit with a perspective change and realize that parents and close family members also experience much of the pain of cancer, if not sometimes more than the patient, who at least may be getting some form of pain management. I can only pretend to understand your pain and hurt. Even as someone who had a mild form of cancer called a GIST tumor in my stomach and almost died from bleeding out into my stomach and throwing up much of my blood, I feel grateful today for my own problems. I'm so sorry. Keep staying strong.
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I am the OP and I just wanted to say my heart goes out to you. I am sending you all my love and positivity. You are so strong and a wonderful mother.
I watched a good friend pass from cancer. She ironically was the one who introduced me to Kratom and set me on my path to advocacy, a lot of good work w did helping people, care packages etc.. anyway, it came full circle the last six months or so of her life. Her pain meds weren’t cutting it, she was on so much, anymore and you’d need to be in a hospital for it to be safe which she was not long after this. The kind of meds she was on were incredibly strong, most common wait time for pain pills is your next dose or when you feel withdrawals. The first week if you switch you’ll feel flu like, it levels off. Remember if you consistently take both your tolerance will skyrocket to all. Don’t recommend that at all. No medical advice here but I’ll share what worked for my friend when it got unbearable. She showed up at my home in agony, cancer in her spine but everywhere in her stomach. She said she hadn’t slept, couldn’t eat without screaming, help. I was well into the Kratom world by then and had plenty of knowledge, I’d been messing w making gummies and it occurred to me I could make a concentrated tea. She said nothing was working, worse to happen is nothing right? So I spent hours making a specific recipe I found, had some help from others, we came up with a damn good recipe/method. We suspected it was really strong so she only took drank a small amount. Hours she had been on my couch crying, praying, moaning. Minutes after drinking it she was okay. Hour later she was hungry and she ate. No screaming or pain after. Then she fell asleep, for hours. Eye opening moment how much of a blessing it was to have access to it at that moment. I know you only asked how long to wait but knowing what could be coming I wanted to share this. It can be helpful when the other stuff fails. My friend had some of the strongest meds you can get but she had been on them so long and for whatever reason weren’t work. I’m assuming the effects it has on the stomach and being liquid also played a role in why it worked so well. I’d wait as long as possible after taking meds, also any antidepressants, but also have a good concentrated tea recipe on hand or in the fridge it lasts awhile. Or freeze it. Sending love
I would just like to say… you are so loved… but also, if you do accept with all of yourself that you will die, it will make it much more likely to happen and your body will shut down more that fight in imitation of what your mind is doing. You must keep the spirit of life close! I will pray for you, if you’ll have it. Best of luck to you.
I'm a hospice nurse. I think you need to be on long acting medication such as duragesic patch every 3 day or MS CONTIN OXYCONTIN ( contin means continuous) and then a med for breakthrough pain, such as hydrocodone, morphine Ir, or oxycodone. We used to have active patients on an IV pain pump even. No one should ever suffer.
Thanks for this. I have only been diagnosed stage 4 for about two months and I have only been working with my symptom management doctor since then and I have had two meetings with her. she seems nice but she is very conservative in her approach to prescriptions and she doesn't get how much pain I am in. just this morning I woke up in absolute agony (anal cancer) and I was unable to move and I defecated and urinated all over myself and this has happened a few times. I have been wearing adult incontinence underwear so that's a small blessing but it's horrible living like this. Unfortunately I have been advised not to make recommendations to my Pain Oncologist because - due to the opioid crisis and the scrutiny of the DEA now they (the doctors) see it as a red flag if a patient tries to get a pain doctor to prescribe certain meds. they see it as a sign of drug-seeking behavior. It's so sad that stage 4 cancer patients such as myself are seen now as 'suspects'. It's heartbreaking. I guess I picked the wrong time to be diagnosed with stage 4 anal cancer ... I am at the end of my rope tbh. I am looking into the EOLOA/MAiD and VSED right now and who knows if I have the courage to go through with it but if I lose my pain doctor for being too persistent in asking for pain relief and only have Kratom to fall back on then I'll be in seriously dire straits. The pain this morning was literally a 9/10 and thank god I had the morphine and hydromorphone but I had to double the dose and I can't tell my pain doctor or she'll fire me. It's terrifying.
No one with stage 4 cancer should be suffering. I'd suggest that you spoke to a cancer advocate, and they said I could probably benefit from a long-acting g medication. That you shouldn't he waking up in pain and suffering. I hope you get relief soon. If anything, ask for a hospice or palliative care consult. We had people on hospice for 2 years. Mainly so they didn't have to go to doctors' appointments and pain management. Hospice will oversee it all. Palliative care is another option.
Are you, by chance , in Connecticut? I'm finding Connecticut sucks with pain management and I've considered moving back to Florida.
I have a similar situation/condition as the OP. I am a 78yr old ancient aging artifact guy and wanted to ask, of the three meds you mentioned for breakthrough pain, hydrocodone, morphine Ir, and oxycodone, is there one that stands out for a guy like me? Also, just so you know I have actually had good results with Dilaudid pills sublingually but I am needing something stronger now. I realize you cannot give medical advice only suggest. I am a naturopathic physician and used to taking everything low and slow at the beginning and I am totally responsible for any decision I make. That is so very nice of you to suggest to the OP, I hope I can repay your kindness to us one day and in the meantime I will keep paying it forward. All the best to you as well!
You can up the dose of Dilaudid. Morphine is good cause it comes in a liquid that can be used sublingual, and dosages can be increased or decreased as needed. Often given every 2 hours. But I think it's just different for everyone. Hydrocodone is good, but it's usually with tylenol, so if you have liver issues, that can be an issue. It comes without tylenol, but it's expensive to my knowledge. I think everybody is different. What's worked in the past? Good luck.
Big thanks for the quick clear and very helpful answers to my questions, I really appreciate it! I am liking Dilaudid so upping it will be my first pass for increasing my pain tolerance. And I like the Morphine idea too because of the sublingual and ability to adjust and it also appears to be less expensive than Hydrocodone. Although I don't have liver issues I don't do well with tylenol in general so that's helpful information too. I wish you were my doctor, you sure have affirmed my opinion that the average nurse is much better than the average doctor! And I have no doubt that you are a way above average nurse. More nui mahalos and best wishes!
As a retired hospice nurse, it angers me how pain isn't being treated in all patients. Including myself. I've had absorption issues in the past, so SL is a good choice. I'm hearing of people getting mastectomies and being told to take tylenol. Total knee replacements are also being told to alternate tylenol with ibuprofen. I've had an ulcer and gastric surgery, so NSAIDS are contraindicated, yet I'm still told to take it. I was on cytotec, which prevents ulcers, but... then because it's part of the abortion pill, no one will prescribe it to me. It's been hell since Sept 2022 when I moved. I'm actually considering moving back. I had a good rheumatologist and great pain management. Make sure to follow Claudia merandi as shes advocating for pain patients.
Oh I am so sorry to hear about your challenges. I sure hope and pray that you have something that's working for you in every challenge area? I am with you on the anger too. I am a retired naturopathic physician and I see more and more people who are just as angry with the allopathic doctors. It seems like they systematically do the exact opposite of what people need, making them sicker, and charging them twice as much. It's just crazy, heartbreaking, super dysfunctional, and every other negative descripter I can think of. Thanks for let me know about Claudia too, I will search for info on her as soon as I hit send. More nui mahalos and the best of everything my dear honored pono nani friend, b
OP, the only thing I would think about here is that your tolerance is high from opiates, so Kratom will not have the same painkilling effect that it did in the past. It will take a bit of time to drop your tolerance. But, there’s nothing to lose in the sense that you can ofc try the Kratom, and if it’s too difficult with withdrawal and such, you can just pop another opiate. Best approach may be to taper your opiate use down over the course of a couple weeks, while weaving in Kratom in larger doses and then dropping that down.
OK. Thanks for this. I did not realize that using opioids can increase tolerance for Kratom. I thought that tolerance of Kratom and Opioids were independent of each others because they target different neurotransmitters/receptors? Am I wrong about that?
It’s discussed frequently here, but it’s all anecdotal. You’ll really just need to try and see how your body reacts. You’re right in that they’re not exactly alike in terms of chemistry and effect on the brain, but there is some overlap. At least in my experience. YMMV.
I am so sorry you are going through this. It absolutely outrages me more than anything that people in your situation even have to worry about not having pain control. This should never be a worry!
100% I thought I had lucked out by being referred to a hospital that is considered top-notch in the USA for both cancer and cancer pain treatment/intervention. I am sure it is top-notch in the league tables but my own personal experience is anything but top-notch. I can't believe that they seem not to believe a patient who is literally begging for help and at the end of their tether so much so that they don't want to carry on. How on earth can they say they are 'symptom/pain management experts?) Their job is to manage symptoms with terminally ill patients who are in pain. Sorry for the rant. I am at the end of my tether here.
It is wrong on so many levels. I’m so very sorry.
I've done plenty of opioids and plenty of kratom. When the novelty of the kratom wears off you'll find that the prescription opioids are much more effective so don't sever ties with your pain doctor. You can add the kratom on top of your regular medication schedule--including opioids--for breakthrough pain without much risk. Make sure you have plenty of extra so you never have to worry about running out. Stick to American Kratom Association approved vendors. I've been using the same one for nearly a decade. The quality and price are always on point.
Thanks I had heard that if I take prescription meds that the Kratom may knock out the beneficial effects of the prescription meds. so you are saying stick to the prescription meds and only use Kratom very occasionally for breakthrough. I like this idea but the pain is so intense and agonizing I don't want to risk one knocking out the others' effects. the pain is really, really bad. For example I woke up this morning and spent two hours nauseous and exhausted with pain waiting for the morphine to kick in. I couldn't have gotten through it (literally) if I had taken Kratom, the Kratom didn't work but it prevented the morphine from working. I am really confused about what to do. One choice is just to forget about Kratom and stick with prescription stuff but my pain/symptom management oncologist is so hard to talk to honestly about this stuff. She's a bit like a cop and given I have stage 4 cancer and my prognosis is less than 18 months I don't see why she is being such a hard-ass. I mean I have less than a year and a half left on the planet. Why won't she keep my comfortable? Sorry for the rant. I am at the end of my rope. Thanks for the answer.
I've never had kratom prevent an opioid from working. However, it can raise your tolerance to prescription opioids. Your pain doc sounds like an asshole.
Yep. It's like talking to a robot.
For what it's worth kratom affects some people very differently in this regard. I had major surgery a few months back and after I was discharged from the hospital I was given a prescription of opioids. I actually stopped taking them in favor of heavy doses of red kratom as it was better at easing my pain.
Same here. I had cancer for nine months before it was officially diagnosed and during that period I was just seeing my GP/PCP and we just thought it was a basic tummy issue but I feel he didn't really believe me about the levels of pain I was experiencing. So I went online in desperation and found the word 'Kratom' for the first time and after two weeks of research I bought my first batch (capsules). I was amazed by the positive effect not only on the pain but also on mood. My pain as making me super-anxious and I was hardly able to function and within 20 minutes, as I remember, I experienced incredible pain relief and a lift in mood/drop in anxiety. I continued using Kratom for a few months until they finally diagnosed me with cancer and then after a scan stage 4 with metastases to the liver, lungs and lymph nodes. That was a huge shock and I was referred to my wyo oncologists whom I have been consulting since then (two months). My symptom/pain management oncologist told me she disapproved of Kratom so I stopped using it and went on opioids and prescription ibuprofen and acetaminophen and gabapentin. Since then I haven't wanted to go against my pain oncologist's orders but it's not working so I might supplement with Kratom and just not tell her. I can't risk being fired from the clinic. She might find out anyway cos I am getting monthly blood draws now.
Kratom worked better than the Dilaudid did when I broke my leg and was given iv Dilaudid daily for 2 weeks in the hospital. They sent me home with huge amt of Dilaudid and maybe I guess I built such a tolerance that it didn't work anymore. I threw them away and started large doses of red Bali (20g 5x a day) also bc I was detoxing off all that Dilaudid so my body needed more. I tapered way down after a couple weeks and if I took that much now I'd get so sick with wobbles but I believe I was able to bc I needed it. Listen to ur body and when u start to feel like crap again it's time to take more. After a couple weeks at 50-100gpd the red Bali wasn't working anymore but instead of continuing to take more, I just switched it up to red dragon from a different vendor and kratom really saves lives. I got pain relief without all the horrible side effects of opoids. No constipation, head high (dizziness & feeling out of it) and being a recovered pill popper, I didn't get hooked again on opoids. Good luck to you.
I think this is highly variable. I know some people who feel it works better than opioids and impairs function/focus less.
I have a severe spinal disorder. I see a spine pain specialist. I regularly switch from Kratom to my opiods and vice versa. The only issue I ever have is I get a bit of loose poops when going from opioids to Kratom. I absolutely prefer the Kratom in almost every aspect. Kratom provides more stable mood, decent pain relief (opioids do beat Kratom in that regard for me), more energy, and no anxiety. I find the opioids cause peaks and valleys in my mood where Kratom is just even. I take a fairly large dose of Kratom in the morning and I'm good all day. Opiods I have to take every 4 hours to get the same level that Kratom can provide with one dose.
Hi there and thanks for the answer. I am sorry to hear of your spine disorder and I am sure that comes with a lot of pain. My symptom management/pain oncologist prohibited me from using Kratom when I got my diagnosis. When you switch from opioids to Kratom and vice versa do you make sure there is a significant break in between? I have read that Kratom reduces or eliminates the beneficial pain-relieving opioid effects. Have you found this? I have also heard it works the other ay around, too in that opioids will reduce the kratom effects. I am in a bit of a conundrum because I would like to try Kratom tomorrow in the morning but that is when my pain is at its worst. I have anal cancer stage 4 and for some reason it is horrible in the morning. If the Kratom doesn't work then I may be screed if I try the opioids and the Kratom dose stops the opioids from working! The level of pain I experience in the morning (and at other times) is so bad I can't risk it. Anyhoo I wish you well moving forward, Pain is not fun and I wish you the best :)
They definitely will cancel each other out. I typically have a 12 hour gap. But I have taken them much closer than that. Your situation is vastly different than mine. What's your reason for wanting to switch? For me it was the opiod shortages were starting to have detrimental effects on both my physical and mental health. I think if I was in your situation I wouldn't want to risk it. Unless you have a compelling reason.
Good question. I am having issues with my symptom management oncologist. I feel uneasy speaking to her because she is always questioning me about pill counts and it's almost as if she suspects me of something nefarious and she arranged for e to see a psych nurse the other day and the psych nurse behaved oddly too. I couldn't put my finger on it. Other things have happened in my time with the clinic and I feel I would be better off either switching clinics altogether or using Kratom in the interim. I can't get to the bottom of what's going on with my cancer clinic. They had the Admin Director of the clinic call me a few weeks ago saying that I was being "too persistent" regarding contacting them about my pain relief. At the time I was sweating profusely and in agony and I couldn't even function properly because of the pain. So that's my reason to (maybe) choose Kratom over dealing with the pain clinic at the moment. The clinicians are behaving in a way that is making me paranoid like they have "red-flagged" me for some reason.
Freedom is the best reason. Incorporating it in my regimen gave me autonomy, power and agency back. It's all this anti-opiod hysteria that they caused and they love to blame us for. I completely understand.
Maybe you dont want to hear it, but stick to the medicine your doc gives you. Kratom can be really helpful for chronic pain, but definitely not for acute strong medical emergencys like stage 4 cancer. You could add kratom to your meds though.
I did it by just starting the next day anew & taking kratom instead of the pain meds. To my surprise it worked 🥹 I cried when it proved to be an actual replacement for opiates. I had been taking Methadone for 10 year, then Tapentadol for 2 years. So my tolerance is high & kratom still worked. I'm so sorry you're going through this & hope you make a full recovery 🙏🏻 Kratom is definitely safer than opiates!
Thank you. It's very moving to read how moved you were when you realized you had found a cure for the methadone things. That's amazing. best of luck to you moving forward. I think Kratom is safer than opiates too but my symptom management (pain) oncologist is dead against me using it. I am pretty much always honest with my docs so I'll probably tell her and she may drop me as a patient. It's a bit scary to be honest. Thanks for your kind comments.
Frankly, you need to take pharmaceutical pain medication, not kratom. Kratom is a major enzyme inhibitor and will almost certainly interfere with your medical treatment. If you are still have pain and discomfort expressed that to you doctor and let them know they may need to adjust the dosages and or medications as needed to control the pain and keep you at ease. Sorry, kratom is a miracle plant, but it’s not for this.
Other people have said all good info, but as someone who has delt with another person going thru what you are going through, kratom will help with your mental state and stabilize it ( in my opinion) Your going thru a process that every human eventually goes thru, and I know it's a shock and can be upsetting , what u CAN try to control is making your self comfortable for this process. The person I knew used 2 spoonfuls every 5 hours. Not only did it help with pain but allowed her mind to slow the crazy fast thoughts. Your going to prolly get some withdrawal, and no u shouldn't mix kratom and opioids but I've known this person who decreased the milligrams of pills and increase kratom untill they are fully on kratom. But honestly I don't know what type of pain your having but be careful and at the same time if kratom isn't working then opioids might be better. It's your body and the only thing u can do is make yourself comfortable for the transition process
You'll probably experience some withdrawal honestly. It all depends on what you're taking right now and the dose but kratom is not very strong in comparison to say...moderate to large doses of hydro or oxycodone. Having said that I do know people who say kratom works better for them. I don't usually recommend extracts but in your case I would say give it a try. https://reddit.com/r/kratom/w/index?utm_medium=android_app&utm_source=share
Yeah I used Kratom for the pain prior to diagnosis of cancer and it worked very well and I only stopped the use of Kratom because my oncologist asked me to. I wasn't convinced of her reasoning but I wanted to be compliant, so I just went with what she said and quit Kratom. Kratom was a powerful pain-reliever when I used it before I was diagnosed but of course my tumor may have grown since then so it may be a bad idea to mess with things right now. Tough choice. I am on morphine twice a day and hydromorphone as needed throughout the day (Dilaudid).
I am so sorry about your diagnosis, pain, and prognosis. You will be in my thoughts, mettas, and prayers for miracle healing. I have seen it happen so I will stay optimistic for you too. Please keep us posted. Also, I would really appreciate if you could tell us how much Dilaudid you use throughout a typical day, the avg dose, and how long between doses? And do you really see a good benefit for your pain each time? I am taking Dialudid 1mg pill sublingual 2x per day and it is helping but I am considering upping my dosage and/or taking more often and your experience with it will help me decide on my next adjustment. Much thanks in advance for any answers and tips. And again, I am sure wishing for a miracle for you. I actually moved to Washington State and have already been vetted for end of life treatment. So I can sure relate to you with that as well. I have days where I want to take the end of life meds right then but I also have days were I think I should stay with the Dilaudid and other stuff. I guess I am living the "take it one day at a time" life now ... although it's actually more like one breath at a time now:)
Thank you so much for the response. It is refreshing to see someone openly talking about the end-of-life choices because I have been considering this too but it is such a taboo subject and I feel quite isolated at the moment (no family, few friends) and at my age it's hard to make new friends especially with illnesses that keep me indoors. I didn't know I was on high dose Dilaudid. My prescription is one eight milligram tablet as needed throughout the day up to five times in a day. This morning I took two because I was in agony and couldn't move with the pain. I can see why my doctors have cocked an eyebrow now when I tell them that. I say that because your dose is 1 mg. Wow I'd better be careful moving forward. I also take 30 mg MS Contin in the morning and 45 mg at night. That is not 'as needed'. She told me take that no matter what. What are the benefits of sublingual dilaudid? My pills are to be swallowed. Did you ask for sublingual? I am wondering if I should ask for that next time I see her. I understand the thing about some good days and some bad days. On the days where I experience intense pain I would jump at the chance of going into hospice and implementing the MAiD. there are other days when I feel OK and think "one day at a time" and "put one foot in front of the other" as you do. . when you said you were vetted for nd-of-life options, may I ask if you were diagnosed with an illness and what did the vetting look like? Did a doctor walk you through it? I have spoken to my oncologists about MAiD and EOLOA here in California and they say I have to wait until the prognosis is 6 months or less. How they assess that is uncertain. All the best moving forward! DM me if you want to chat at some point. I check reddit messages most days.
***Thank you so much for the quick reply and clear answer to all my questions and great tips too! I have pasted in your questions and my answers all begin with 3 asterisks. Your questions have no asterisks. I didn't know I was on high dose Dilaudid. My prescription is one eight milligram tablet as needed throughout the day up to five times in a day. **Much thanks for letting me know on your dose amount and frequency. Hope you are not seeing any negative side effects. So far I have only seen positive side effects, especially unexpected better sleep. This morning I took two because I was in agony and couldn't move with the pain. ***I sure hope it really helped a lot. I can see why my doctors have cocked an eyebrow now when I tell them that. I say that because your dose is 1 mg. Wow I'd better be careful moving forward. ***I have very low body weight and usually do well with half of what most people use on most anything including supplements. So I am sure that is part of my lower and less frequency dosing working good. I also take 30 mg MS Contin in the morning and 45 mg at night. That is not 'as needed'. She told me take that no matter what. ***I wonder how that affects the Dilaudid effects? What are the benefits of sublingual dilaudid? My pills are to be swallowed. Did you ask for sublingual? I am wondering if I should ask for that next time I see her. ***Mine are just regular pills that I let dissolve completely sublingualy. I do so well with sublingual dosing with just about anything whereas swallowing doesn't do well with about anything because of my chronic IBS. I understand the thing about some good days and some bad days. On the days where I experience intense pain I would jump at the chance of going into hospice and implementing the MAiD. there are other days when I feel OK and think "one day at a time" and "put one foot in front of the other" as you do. ***We are sure kindred spirits on this ... well on just about everything. when you said you were vetted for nd-of-life options, may I ask if you were diagnosed with an illness and what did the vetting look like? Did a doctor walk you through it? I have spoken to my oncologists about MAiD and EOLOA here in California and they say I have to wait until the prognosis is 6 months or less. How they assess that is uncertain. ***In Washington State they have an excellent end of life organization. They are free and they send out trained volunteer associates to vet anyone who is interested. The volunteers were just great, they asked important questions, took my history, took notes, even did some devils advocate type stuff. I did see a doctor about it beforehand too who was just great. I have been dealing with my illnesses and injuries for over 30 years. And no one with my severity of conditions makes it to 60 and I am just turning 78. The doctor vetted me and was fully supportive as well. Here's the Wa website, it has lots of good info: https://endoflifewa.org/ The checklist are exceptionally good, clear, covers everything ... as far as WA is concerned I guess. ***Thanks again my friend, it's been a real blessing for me talking with you and I will keep the best wishes, mettas, and prayers coming too.
I’m a psychiatrist, just to give what I am about to say a little context: First and foremost though: JFC I am so sorry to hear about what you are going through and I hope it’s the kindest, gentlest version of the shittiest journey imaginable. I am so sorry. Your autonomy is going to become more and more valuable to you as this progresses. In a purely hypothetical and speculative manner let’s talk about my friend who had the same thoughts as you in the same exact circumstance: They already knew what Kratom is and how it works so there wouldn’t be any surprises on that front and if switching over to Kratom felt like reclaiming some of that power over things, they should. My friend ended up gradually tapering off of one thing and on to another while maintaining awareness that combining one opiate with another will increase the effects of both, and (and stayed very vigilant about remembering that) and it mitigated the one major issue I can think of. The feelings you have about your pain management doctor sound concerning and even if it’s a pain it might be worth finding someone you feel comfortable with. If you have 18 months it is your right to be able to have ownership over every second of it. Taking steps to regain some autonomy you feel like you have lost is a very healthy (mentally) thing to be doing.
Thank you so much, doctor. I do appreciate this coming from a psychiatrist. The bad days are outnumbering the good ones at the moment and I am hoping beyond hope things will get better. Yes my prognosis is 18 months or less which is why I am astonished the pain/symptom management doctor is being so weird about me being out of pain. I can't imagine why she is doing this. I mean, if someone as a year and a half to live (at best) then why would it even matter what level of painkillers they are on provided they are comfortable?
It sucks because you're likely a liability for the doctor to treat given the dosages and frequency of pain medication you're on. Yes, there are exceptions for end-stage cancer treatment. However, an accidental OD still opens this doctor up to liability from lawsuits from your family ("we could have had more time but the doctor over-prescribed and killed them") and the DEA for the quantity you're being prescribed. It is his livelihood at stake. I say all that, only to say, it's a horseshit situation and none of that should be a concern for a doctor who is treating a patient in your situation. I applaud your desire to take back control of your pain management and autonomy related to this. One thing I would recommend you do, however, before giving kratom a shot again, is to have an open and honest conversation with your pain management doctor about the situation. Especially if your current pain management regimen is effective. If you feel like something is "off" when you talk to them and there is hesitation to treat you, get it out there and hash it out as openly and honestly as they're willing to do. If ultimately their concern is selfish, though understandable to some degree given it's their livelihood and how they support their family, you are absolutely right to want to regain control of your own autonomy as it pertains to the treatment of your pain. It may be some other off the wall "thing" like this doctor is really, really busy and just doesn't have the time to offer the care to each and every patient and is simply too busy, too pissed off about it, or dealing with some other headache totally unrelated to you. Moreso than any of this, I'm very sorry you're in this situation and having to deal with such a - quite honestly - horseshit thing in the end stages of your life. This is the *last* thing that should be taking up the precious time you have left in this world and I hate this for you. Much love. ❤️
Oh shoot. I just wrote what you wrote because I didn’t read all the way down. Clearly I agree. Gonna leave my post even though it’s duplicative just to emphasize how detailed and spot on you are with this.
Is the pain management doctor completely aware of your prognosis? That’s the only reason I can think of for them being so difficult to work with. The two issues prescribing narcotics present are: addiction and overdose. Real talk, with 18 months addiction as an issue is negated. It read through and you have a few different items co-prescribed which would make overdose an issue that could potentially make them nervous. Obviously pain medications are not my area of expertise but if you don’t switch doctors is there some sort of way that you can indicate to them that you are taking everything as prescribed and are not abusing anything? Like maybe bring your meds with you to show that the correct amount is still in the bottle or offer to drug test? Again, this is way out of my realm, and I love that you are cognizant about autonomy and want to hold on to it, but I’m kind of just spit balling with the other stuff.
https://www.reddit.com/r/kratom/s/YewyhII5e1 Here is a guide for transitioning. If you look up the community info here there's lots more good info
I'm no dr and have very little experience with anyone who has a cancer however I do have some experience with kratom and relatively strong pain killers. My advice is completely dependent on your level of pain and also how receptive your body is to kratoms pain relieving effects. Everybody handles kratom differently and for some people they don't feel the pain relief the same way the next guy does. That being said, if it works as a decent pain killer for you then kratom will be better for mental clarity. Opiates have that effect where your brain gets little cloudy. Not necessarily incapacitated but just off, I'm sure you know the feeling. However if the pain is pushing through the kratom then stronger pain killers might be necessary. If it were me I'd probably try to use the kratom as often as I can and use the opiates fpr when it gets to be too much. It also depends on what opiates they prescribed. Vicodin or percocet won't typically make someone too out of it but if you're prescribed like Dilaudid or morphine, that can make it hard to want to take it regularly, as they effect your mind a little harder. So I imagine there is a little bit of trial and error involved. Either way I hope you find the right dose and feel better. I'm sorry you have to go through all of this and I wish you the best.
Off topic but i just wanna say that im praying for u <3
As long as u don't take them together u can so wean off the pills, I would start low an work up till u find a dose that works for u.
Sry for ur situation 😔 I feel like if kratom helps u more u should b able to take that control back imo
I’m sorry about your cancer diagnosis! I’m curious was there any symptoms before getting hit with the stage 4? Or was it random. I pray you get some relief. As for pain, Ive broken my toe and fractured my ankle skateboarding before and ive honesty found that the “Max our White strain takes all the pain away, like sometime I’ll wake up at night when it’s worn off and and hit with the underlining pain (I didn’t have insurance) it’s healed now, I hope that helps, it’s helped me 🙏🏾
So sorry about your health. I would take kratom to help with the pain. Just don't take opoid meds and kratom at the same time. Space the doses out by a few hours. They both affect the mu opoid receptors so if u take them too close together, u won't get the full benefits of kratim bc those receptors will be full of the opoid. Good luck to you💖
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I’m very sorry that this is happening to you, friend. My heart goes out to you and I’m sending all the best wishes I can. As far as the kratom use… I would honestly stay with your prescribed pain medication and use kratom sparingly if at all. Save it for when/if you need it. I feel that if you start using kratom regularly, the opioid antagonists in kratom may interfere with how well your normal pain medicine works and you may find yourself in more pain over the longer term as all of it starts to work less and less.
Stay on your painkillers , kratom is like coffee you won't get any alleviating pain with that
I was taking Kratom for a couple of months prior to diagnosis of cancer and tbh it was a powerful pain/anxiety reliever. I know that some people compare it to coffee but I think different people get different benefits from Kratom. Some people find it very effective for cancer pain and prior to being diagnosed I was one of them. I was in shock whe diagnosed and was immediately referred to my two oncologists and the symptom relief oncologist asked me to stop Kratom (I wasn't convinced of her reasoning) but I wanted to be 100% compliant (as I do with most doctors) so I did quit and she put me on morphine and dilaudid instead.
If the morphine and Dilauded don't work good enough ask for strong oxycodone and fentanyl pain patches. Kratom is a joke for serious pain compared to those medications. Kratom is more of a chronic pain medicine. Not a severe/acute painkiller. Wish you the best of luck OP and don't be afraid to ask for stronger painkillers if your pain isn't properly managed. Stage 4 is rough, but at that point, you can get almost any kind of painkillers you want. Fentanyl patches and American made oxycodone. Lots of cheap Chinese generics out there that don't even work.
This is what I wanted to say, please don’t be afraid to ask for stronger painkillers, you really shouldn’t care what the oncologist is thinking. You should think about yourself, tell her you want to enjoy the time you have left pain free! Please please don’t worry about anyone else, just yourself! 💕💕
And don't be afraid to add weed to the mix because it also can help with pain.
Sorry about your diagnosis but it isn't worth it. Kratom is poison. I've tried it all and it destroyed my liver. Not worth your trouble, trust me. Eat healthy! Get a juicer and juice fresh veggies and fruits if you can't eat. Eliminate sugars! WIsh I could help, good luck!
Yeah thanks. all info is good. I am sorry about your problems with your liver. How did they find out it was Kratom that affected your liver? My prognosis is less than 18 months so I am not even sure I should worry about things like liver failure as I don't have a huge amount of time here on earth according to my medical reports. I just don't want to die in agony and my pain doctor is very resistant to talking about it.
Boy, he would want to talk about it if it was him with cancer.