Immunotherapy Easier Than Chemo?

Hi Harriet,
I'm so glad to share any help I can with you.
I start my 7th month on the clinical trial tomorrow.
Here is the description

My last scan showed tiny progress-- 10% in six months-- and no new areas. This treatment is so much easier for me than Folfirinox/ Oxalyplatin or Gemzar/ Abraxane were.
I am a patient at MDAnderson's clinical trial program.

Jump to this post

I have stage 4 Non small-cell lung cancer and originally started with chemo which was carbo and pemetrexed that went well for a few months and I actually reached NEF, the first summer (2915). however, by Fall I had significant progression and was then put on to opdivo which had just been FDA-approved at that time for non-small-cell Ademi cancer. the first few infusions were fine but shortly after that I started having a variety of side effects started with really bad belly aches and GI issues that then later turned into a lot of nausea almost like a daily flu like feeling without a fever and horrible fatigue, later I had joint and muscle pain and ultimately developed low-grade pneumonitis which down the road is why they ended up taking me off Opdivo. because of the variety of side effects I did have from the drug I always found it much more difficult than chemo was I spent more time resting in bed than I did on chemo and felt worth many more days. I also took three treatment breaks while I was on it trying to resolve the pneumonitis another side effects but nothing really helped. I was taking off in August of 2016 and by then thankfully was stable and the best news is that I've stayed stable ever sent without any further treatment. I'll forever be grateful that up tivo work so well for me but will never forget the side effects either, it was definitely worth being stable but it was not an easy time.

I know many people find it much easier but for those who do suffer side effects and believe me mine were mild as compared to what some can be. It can be a challenging drug as can any of the immunotherapy drugs. Cancer is a tough battle to fight there is no easy treatment or choice you just do what you have to do to try and beat this nasty disease.

To this day I still have terrible joint and muscle pain and also relentless fatigue and I definitely feel it is still related to opdivo even though I've been off it for 28 months now. in some of the recent ads and studies they are now explain that side effects can come on at any time even after treatment has been stopped, I do believe that whatever it did to my immune system to keep me from having any new cancer also seems to indicate it still working and if that's the case and it makes sense that I would still have side effects from it as well?

Best wishes
Lisa

PS. I joined the Lung Cancer Registry on the Bonnie Addario Lung Cancer Foundation website to help and provide input for others who try or want to try immunotherapy I highly suggest that everybody check it out and share our experiences in the registry.

Jump to this post

Thank you for sharing your info. Is your trial for lung cancer or pancreatic?

Jump to this post

Hi tree by the river,
I am a 13 year survivor but another tumor appeared in my pancreas after 10 years so I guess I am a 3 year survivor of this 2nd tumor. I am participating in an immunotherapy trial that is at 25 major institutions sponsored by big Pharma, Hoffman- Roche. I am finding the side effects even more debilitating than when I was on chemo. I wonder if you could tell us the name of the drugs they are using in your trial. I am interested because you seem to be handling your treatment well. Have you had any scans and were the results encouraging? Might be worthwhile to travel to MD Anderson for treatment but I would need to know how to identify your trial to see if I qualify. Thank you and I hope you remain positive and continue to do well.

Jump to this post

HI Harriet, was your first tumor melanoma in your pancreas as well? I am a 10 year met melanoma survivor but my metastatic tumor was in my lung for which I had a lobectomy. Last week, I had my F/U PET scan of body and MRI of brain with good results. No changes from last couple years. Whew! Hope it lasts for the next few years. Wishing you the best. Marilyn

Jump to this post

While i found the immunotherapy easier as far as fatigue goes my rashes were not minor. They covered both arms , chest, sides and my lower legs. To top it off nothing stopped the itching. They put me a predisone to get rid of the rashes but that created another set of problems. I am hoping there is something they can do to keep the rashes from coming back. it is difficult to work on 3 hours of sleep. Good luck to those who are on this, i am pulling for you.

Jump to this post