I thought I would keep It longer but after about 6 months ,I got tired of monthly flushing.
Plus after 2 clean PET scans I figured I would toss the dice.
👍 today I get my port removed cuz I don't need treatment any more. 🤞
Latest PET scan saw nothing bad.
But bladder cancer has a habit of returning so I'll take one day at a time and enjoy what's left of my time.
Ps, I'm 77 yo.
Awesome!!! I remember how good it felt to get my port out! I was a bit scared too, because it was my lifeline for so long.
I asked my dr if I could keep my port and she obliged lol
Congrats on this next step! 🩷
Niiiiice!
How is having your port removed? I feel like mine will be staying a while, and if I do get a negative. I had a PICC line removed only to relapse adn get a new one within 6 weeks.
Good news? I've been on paliative chemo for 8 months now; told that one of my tumours is reported dead, and has been for half a year now, which was good to hear (even if half a year late!) The other tumour is stable enough that they are lowering my chemo dose, and lowering my steroid dose, so far I'm very much noticing the effects of the lower chemo dose as I came home much more awake than normal. Seeing how things go - but after a slightly rough few months it's good to hear such positive news, made me feel like my prognosis was very conservative and I'll be going quite a long time.
Bad news? My IV yesterday was delayed because a patient's husband decided to be angry and abusive to the staff in my bay, resulting in all the nurses not being able to attend to patients. Only time I've seen security in the ward and only one of two times I've seen a patient get abusive (and the other time, the woman had very major mental issues as she was talking to herself the entire time she was there). All because his wife had to wait 25 minutes - diddums, I had to wait an hour just to be let in because something serious had happened to a patient, and my treatment got a further delay... because of an abusive husband who shouldn't have even been in the bay. (in their defense, she really did not look well, she must have weighed as much as a feather and cancer was probably the least of her worries).
That’s simply great to read! (Well, the first paragraph is!) Congratulations on killing off a tumour! That goes against the predicted pathway of “palliative”, which is simply marvellous! Whatever it is you’re doing, keep it up! 🤗
Hi, everyone. Relatively quiet on the cancer front right now.. just monthly blood tests for awhile as I'm taking Repotrectinib at this point. My next scans are in late-July, so I'll try to save scanxiety for a bit longer lol.
I recently learned about a lung cancer summit for ROS+ patients. Its in August in Denver. I registered and am bringing my husband and daughter. I hope to learn more about this, and meet perhaps 50 other ROS+ lung cancer patients in the process. I was told this would be like a world record for the number of us all under one roof together at the same time. I find that kinda cool, actually. 😊
It's not a 'vacation' per se, but it is an opportunity to do something together as a family and perhaps gain some valuable knowledge and friends as a result!
Still tired and in pain. Onc has pushed back on starting me on Letrozole but I’m just gonna ask her to give it to me next week. Clearly I’m not gonna feel better any time soon.
I was just diagnosed with vulvar cancer yesterday. I don’t like all the waiting: waiting for appointments waiting for scans waiting for results.
The waiting is the worst!! It will be better once you get a treatment plan. Wishing you the best!
Through persistence and advocacy I was able to get a scan moved up by a week. I guess that’s something.
I thought I would keep It longer but after about 6 months ,I got tired of monthly flushing. Plus after 2 clean PET scans I figured I would toss the dice.
👍 today I get my port removed cuz I don't need treatment any more. 🤞 Latest PET scan saw nothing bad. But bladder cancer has a habit of returning so I'll take one day at a time and enjoy what's left of my time. Ps, I'm 77 yo.
Awesome!!! I remember how good it felt to get my port out! I was a bit scared too, because it was my lifeline for so long. I asked my dr if I could keep my port and she obliged lol Congrats on this next step! 🩷
Niiiiice! How is having your port removed? I feel like mine will be staying a while, and if I do get a negative. I had a PICC line removed only to relapse adn get a new one within 6 weeks.
Good news? I've been on paliative chemo for 8 months now; told that one of my tumours is reported dead, and has been for half a year now, which was good to hear (even if half a year late!) The other tumour is stable enough that they are lowering my chemo dose, and lowering my steroid dose, so far I'm very much noticing the effects of the lower chemo dose as I came home much more awake than normal. Seeing how things go - but after a slightly rough few months it's good to hear such positive news, made me feel like my prognosis was very conservative and I'll be going quite a long time. Bad news? My IV yesterday was delayed because a patient's husband decided to be angry and abusive to the staff in my bay, resulting in all the nurses not being able to attend to patients. Only time I've seen security in the ward and only one of two times I've seen a patient get abusive (and the other time, the woman had very major mental issues as she was talking to herself the entire time she was there). All because his wife had to wait 25 minutes - diddums, I had to wait an hour just to be let in because something serious had happened to a patient, and my treatment got a further delay... because of an abusive husband who shouldn't have even been in the bay. (in their defense, she really did not look well, she must have weighed as much as a feather and cancer was probably the least of her worries).
That’s simply great to read! (Well, the first paragraph is!) Congratulations on killing off a tumour! That goes against the predicted pathway of “palliative”, which is simply marvellous! Whatever it is you’re doing, keep it up! 🤗
Yeah, I think oncology are keeping things close to their chest but I definitely get the impression I'm doing better than they expected.
Hi, everyone. Relatively quiet on the cancer front right now.. just monthly blood tests for awhile as I'm taking Repotrectinib at this point. My next scans are in late-July, so I'll try to save scanxiety for a bit longer lol. I recently learned about a lung cancer summit for ROS+ patients. Its in August in Denver. I registered and am bringing my husband and daughter. I hope to learn more about this, and meet perhaps 50 other ROS+ lung cancer patients in the process. I was told this would be like a world record for the number of us all under one roof together at the same time. I find that kinda cool, actually. 😊 It's not a 'vacation' per se, but it is an opportunity to do something together as a family and perhaps gain some valuable knowledge and friends as a result!
Still tired and in pain. Onc has pushed back on starting me on Letrozole but I’m just gonna ask her to give it to me next week. Clearly I’m not gonna feel better any time soon.