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Re: Adjuvant immunotherapy
Posted: Mon Apr 15, 2019 5:49 am
by FindTheBestHelp
plastikos wrote:I am MSI-H as well. Did FOLFOX + Erbitux as well as FOLFIRI as adjuvant chemo after surgeries. Had recurrences after both. After that I was put on Keytruda and I am about to hit my 2 year mark on the drug. I have been NED for almost the whole time on immunotherapy. I know it’s useless to think about it but if I had to do it all over again I probably would’ve preferred to get immuno instead right after my first surgery. It would’ve probably saved me from 1 major surgery and 28 rounds of chemo. But the data for immunotherapy wasnt there yet during that time so I dont think any onc would’ve recommended it as adjuvant with confidence.
Glad Keytruda has been working for you. I don't recall if you ever mentioned, but was Opdivo discussed by your oncologist as an equivalent alternative? Or Opdivo + Yurvoy as a dual therapy? I read somewhere that Opdivo + low dose Yurvoy is being considered as a first line treatment option.
Re: Adjuvant immunotherapy
Posted: Mon Apr 15, 2019 5:51 am
by FindTheBestHelp
Wonderfullymade wrote:I am also msi-h and 2 different types of chemo failed me as well! See my sig!
Wonderfullymade
Was the DVT/PE a result of the immunotherapy?
Re: Adjuvant immunotherapy
Posted: Mon Apr 15, 2019 5:55 am
by FindTheBestHelp
Wonderfullymade wrote:I think it was about 18 months of treatment before the colitis began. It was treated successfully with prednisone. Although I still have lights bouts of it kinda daily, nothing that stops me! It is not why I stopped. I hit the 2 year mark and had a clean PET and CT scan. It took almost 2 years though for 1 node to go away! 1 evaporated after the first scan. I don’t really know if the 2nd one was just a dead thing or not...
I have another scan in about 3 weeks. Im praying the trend continues!
Wonderfullymade
Eta :my onc got thedrug off label through my insurance co as a matter of life or death. He was a pretty remarkable Dr.
Did you get the prednisone in a low dosage while keeping the immunotherapy going, or did you stop immunotherapy while on the steroid?
Re: Adjuvant immunotherapy
Posted: Mon Apr 15, 2019 5:58 am
by FindTheBestHelp
Majaelisestrand wrote:Thank you everyone. Such great stories! I was just months from being treated with immunotherapy in the first line setting... But, I’m so greatful for being NED. Just wish I could have immunotherapy now, not wait for it to show up again...
Are you still on folfox or stopped at 5 cycles? i sometimes wonder if it's better to get some immunotherapy after NED thru chemo just as another measure to take to kill off what possibly can't be scanned or indicated thru CEA.
Re: Adjuvant immunotherapy
Posted: Mon Apr 15, 2019 6:00 am
by FindTheBestHelp
Pyro wrote:Anyone get Keytruda on Medicare?
Yes. If you have any question about it feel free to ask, either in thread or PM in case I don't catch the update in thread.
Re: Adjuvant immunotherapy
Posted: Mon Apr 15, 2019 6:03 am
by FindTheBestHelp
I really wish that cancer treatments such as immunotherapies would be granted to all viable candidates, especially since it gives a relatively good chance of response and durability. It's a shame that cancer patients who already have enough to worry about would also have to worry about footing the bill with prices being as high as they are for these drugs.
Re: Adjuvant immunotherapy
Posted: Mon Apr 15, 2019 7:38 am
by Pyro
FindTheBestHelp wrote:Pyro wrote:Anyone get Keytruda on Medicare?
Yes. If you have any question about it feel free to ask, either in thread or PM in case I don't catch the update in thread.
Thanks but Merck covered it.
Re: Adjuvant immunotherapy
Posted: Thu May 02, 2019 9:56 am
by henry123
It is good that you got Merck to cover it.
Anyone have experience in Canada with Compassionate care from BMS , manufacturer of Opdivo .
Re: Adjuvant immunotherapy
Posted: Sat May 04, 2019 1:04 pm
by henry123
FindTheBestHelp wrote:I really wish that cancer treatments such as immunotherapies would be granted to all viable candidates, especially since it gives a relatively good chance of response and durability. It's a shame that cancer patients who already have enough to worry about would also have to worry about footing the bill with prices being as high as they are for these drugs.
Immunotherapy drugs can cause serious and life threatening side effects which can be almost impossible to manage. Also huge cost factor is an issue. It works in a very few cases which can be somewhat predetermined by genetic and tumor studies.
Patients are insisting on starting immunotherapy but it is till now not a panacea. But good oncologists do not take decision to start immunotherapy lightly.
Re: Adjuvant immunotherapy
Posted: Tue Jun 11, 2019 7:09 am
by plastikos
FindTheBestHelp wrote:plastikos wrote:I am MSI-H as well. Did FOLFOX + Erbitux as well as FOLFIRI as adjuvant chemo after surgeries. Had recurrences after both. After that I was put on Keytruda and I am about to hit my 2 year mark on the drug. I have been NED for almost the whole time on immunotherapy. I know it’s useless to think about it but if I had to do it all over again I probably would’ve preferred to get immuno instead right after my first surgery. It would’ve probably saved me from 1 major surgery and 28 rounds of chemo. But the data for immunotherapy wasnt there yet during that time so I dont think any onc would’ve recommended it as adjuvant with confidence.
Glad Keytruda has been working for you. I don't recall if you ever mentioned, but was Opdivo discussed by your oncologist as an equivalent alternative? Or Opdivo + Yurvoy as a dual therapy? I read somewhere that Opdivo + low dose Yurvoy is being considered as a first line treatment option.
Hi. Sorry if this reply is late. No I was only offered Keytruda.