bitchslapped wrote:You have come a long way plastikos. Immunotherapy a BIG DEAL...a real success story thus far & @ a young age. I hope you continue to update regarding dosing frequency (not clear on that) & decision re: stent.
Sometimes I'm of the mind - If it ain't broke, don't fix it, however maybe you don't want to retire w/it.
Best Wishes
BS
stu wrote:Brilliant news and dilemmas of that nature are welcome . I am sure you are giving the surgeon much to smile about .
It has been fantastic following your story and seeing how far you have come .
Take care,
Stu
bitchslapped wrote:Sometimes I'm of the mind - If it ain't broke, don't fix it, however maybe you don't want to retire w/it.
plastikos wrote:Thanks BS. I get what you mean. But of course cost is an issue. Also I think everyone wants to be off treatment eventually. My onc and I are playing it by ear like I assume all other people on this treatment are due to the la k of definite protocols. Increasing dosing intervals by a week at a time now. Approaching 2 years on the drug. Will examine options then. Stop cold turkey? Half doses? Nothing definite yet.
henry123 wrote:Great news Plastikos,
Even my oncologist is increasing duration between fusions by a week every 3 months or so after a year of infusions every 2 weeks.
It started with once every 2 weeks. It is now at once a month.
plastikos wrote:henry123 wrote:Great news Plastikos,
Even my oncologist is increasing duration between fusions by a week every 3 months or so after a year of infusions every 2 weeks.
It started with once every 2 weeks. It is now at once a month.
Great to hear that Henry. Looks like we are kind of in the same boat right now. If it’s ok please do keep us updated on your treatment from time to time as well. The way I see it there’s really no right or wrong answer when it comes to how to stop or continue immunotherapy. I wouldn’t mind doing it indefinitely really if it weren’t for the cost of treatment.
Wonderfullymade wrote:plastikos wrote:henry123 wrote:Great news Plastikos,
Even my oncologist is increasing duration between fusions by a week every 3 months or so after a year of infusions every 2 weeks.
It started with once every 2 weeks. It is now at once a month.
Great to hear that Henry. Looks like we are kind of in the same boat right now. If it’s ok please do keep us updated on your treatment from time to time as well. The way I see it there’s really no right or wrong answer when it comes to how to stop or continue immunotherapy. I wouldn’t mind doing it indefinitely really if it weren’t for the cost of treatment.
I dont have internet access much lately, but lurk occasionally.
Signing in to give an update. I havent had treatment in about 15 months, and as of my last scan (2weeks ago) I was still NED. My onc is going to continue to scan every 3 months for now since she doesnt know how long it will last.!
Its a bit nerve wracking, but at the same time enjoying the respite.
Best wishes for all!
Wonderfullymade
Wonderfullymade wrote:plastikos wrote:henry123 wrote:Great news Plastikos,
Even my oncologist is increasing duration between fusions by a week every 3 months or so after a year of infusions every 2 weeks.
It started with once every 2 weeks. It is now at once a month.
Great to hear that Henry. Looks like we are kind of in the same boat right now. If it’s ok please do keep us updated on your treatment from time to time as well. The way I see it there’s really no right or wrong answer when it comes to how to stop or continue immunotherapy. I wouldn’t mind doing it indefinitely really if it weren’t for the cost of treatment.
I dont have internet access much lately, but lurk occasionally.
Signing in to give an update. I havent had treatment in about 15 months, and as of my last scan (2weeks ago) I was still NED. My onc is going to continue to scan every 3 months for now since she doesnt know how long it will last.!
Its a bit nerve wracking, but at the same time enjoying the respite.
Best wishes for all!
Wonderfullymade
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