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Immunotherapy Easier Than Chemo?

Posted by Treebyriver @treebyriver, Dec 3, 2018

Hi I am coming up on my fourth immunotherapy at MDA in Houston. I am finding that I am having to unlearn some of my expectations with experiences with chemo since immunotherapy is different and at this point easier.

I have had small skin rashes, another level of fatigue, and other minor side effects.
On the week that I had both ingredients, I had a temperature that rose and fell and an achey neck for about six days.
Overall, I am just not worn out as much as I was with chemo.

Interested in more discussions like this? Go to the Pancreatic Cancer group.

Hi treebyriver, I agree. I had 5 different chemos before I was put on immunatherapy. I had 27 infusions, I also had the fatigue and skin rashes. The rashes seem to get worse with the sun. I have been stable for two years now and get scans every 9 months. I will say that I have memory issues and I attribute that to the immunatherapy. I feel blessed I was able to get the immunatherapy. Lots of luck on your journey. Daisy

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WHAT TYPE IMMUNATHERAPY DID YOU HAVE? I HAVE BEEN DOING BCG FOR 4 YEARS AND NEARLY ENTERED A STUDY. IT WAS GOING TO BE EVERY 27 DAYS FOR ONE YEAR. SORRY I CAN'T REMEMBER THE NAME. IT IS ALREADY APPROVED FOR ADVANCED STAGE BLADDER CANCER, BUT NOT EARLY STAGE. I HAVE KEPT MY CANCER AT BAY SO FAR!

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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.

https://www.lungcancerfoundation.org/patients/news/new-lung-cancer-registry-launched-today/
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@dlwright

WHAT TYPE IMMUNATHERAPY DID YOU HAVE? I HAVE BEEN DOING BCG FOR 4 YEARS AND NEARLY ENTERED A STUDY. IT WAS GOING TO BE EVERY 27 DAYS FOR ONE YEAR. SORRY I CAN'T REMEMBER THE NAME. IT IS ALREADY APPROVED FOR ADVANCED STAGE BLADDER CANCER, BUT NOT EARLY STAGE. I HAVE KEPT MY CANCER AT BAY SO FAR!

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dlwright, I was on Keytruda. Daisy.

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@daisy62

dlwright, I was on Keytruda. Daisy.

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THAT IS THE STUDY I WAS GOING TO GET IN, BUT THE NURSE MESSED UP ON MY DATES AND THE NIGHT BEFORE I WAS TO START, THEY CALLED AND SAID I DIDN'T QUALIFY DUE TO A DATE ISSUE! THE NURSES FAULT, BUT I STILL DIDN'T GET TO GET IN IT! I GO IN FOR ANOTHER SCOPE THIS MONTH AND FROM THERE WE WILL SEE IF IT HAS PROGRESSED. IF NOT, WE WILL MONITOR IT AS OFTEN AS MY DR. NEEDS TO. TRYING TO SAVE THE BLADDER AT ALL COST!

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@leezza

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.

https://www.lungcancerfoundation.org/patients/news/new-lung-cancer-registry-launched-today/

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Thanks for sharing and letting us know about the lung cancer registry. The longer immunotherapy medications are used the more we are becoming aware of immune mediated side effects. Here is what we know so far.....https://news.cancerconnect.com/treatment-care/immune-checkpoint-inhibitor-side-effects-toxicity-more-common-than-reported-D_P6WXNPLEKZJ6TZubKxGw/
Best C

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@charles

Thanks for sharing and letting us know about the lung cancer registry. The longer immunotherapy medications are used the more we are becoming aware of immune mediated side effects. Here is what we know so far.....https://news.cancerconnect.com/treatment-care/immune-checkpoint-inhibitor-side-effects-toxicity-more-common-than-reported-D_P6WXNPLEKZJ6TZubKxGw/
Best C

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Thank you for this link. The main symptoms I have from time to time are fatigue, some small rashes that go away even better with a topical steroid cream, and some neck/ shoulder muscle soreness. I started treatment in Nov. and it is almost May.

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I know, it is such a roller coaster with many unknowns. I found trying to have few expectations eliminated many disappointments. I can't control the treatments or situation but I can control my response to everything. Hopefully, this will remain easier. Best wishes, MacLaurie

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@treebyriver

Thank you for this link. The main symptoms I have from time to time are fatigue, some small rashes that go away even better with a topical steroid cream, and some neck/ shoulder muscle soreness. I started treatment in Nov. and it is almost May.

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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.

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@harriet

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.

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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

https://www.mdanderson.org/patients-family/diagnosis-treatment/clinical-trials/clinical-trials-index/clinical-trials-detail.ID2017-1065.html

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.

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