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When to stop immunotherapy

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When to stop immunotherapy

Posted By
caman
9/11/2020 8:49pm
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Replies: 13

Hi everyone, after 4 months on immunotherapy I finally got to remove the lymph node for the biopsy. I'm happy to report I got a complete response. Pretty amazing!!.. Just wondering how much longer should I stay on the drug. Anyone have any experience with this or have some knowledge on this topic? Thank you!

tkoss - (9/12/2020 - 6:13pm)

i read your bio and lymph nodes were on neck? i am 3c with 6 months nivo, and NED first and only CT scan. Never the less docs insist I finish out regime of 1 year, as prescribed. As long as insurer is paying I am participating. My LN were axillary, aka armpit. i would assume LN in neck are more likely to affect brain or does it not work that way, meaning closer to brain easier to get brain MET.

i cannot advise you what to do, but if someone is paying i would slurp up every last drop of whatever drug your getting.. I have not read any thing about negative consequences of immo except a minor risk of cardio vascular problem. (thanks mel for initiating that discussion)

i would like to hear from others because i have 5 more months, and whilst damned inconvenient , i haven't given any thought to long term side effects, if any, of a year's treatment's vs 6 months.

Edwin - (9/12/2020 - 7:37pm)

Immunotherapy sometimes damages the endocrine system. I developed a thyroid problem where receiving immunotherapy. I take a 0.025 mg pill of levothyroxine each morning and will probably need to continue the rest of my life. This is a very minor problem. A few people have developed type 1 diabetes while receiving immunotherapy. Immunotherapy has killed a few people.

TKoss,
I was 3C. My first scan after 6 months on Nivo showed NED. A chance MRI for an unrelated issue was done 3 months later (9 months after Nivo started). They saw a small spot on a muscle. PET scan showed Mets to lungs and lymph nodes. If I were you, continue with the Nivo for the full course. If you continue on the Nivo and remain NED, then it was worth it.

Bruce

tkoss - (9/13/2020 - 9:36am)

well that shot my day to hell Bruce. LOL.

this entire thread constitutes about 3000 more words than my docs have spoken on the topic. they simply repeat "standard of care, standard of care'. You remind me, as well as melmel that we have to be very pro-active in our treatment. i will absolutely work your experiences into my next discussions with Doc.

thanks.

tkoss - (9/12/2020 - 6:23pm)

I would be remiss it I didn't mention my greatest concern about immo and that is the enhanced effects it may have with covid infection.. Bubbles offers a very comprehensive review of the data and science on this question in the thread entitled "i repeat the question" right before your post.

i can control my contact with the outside world, so the critical idea for me is to get as much nivo as i can for as long as i can.

caman - (9/13/2020 - 12:25am)

Thanx, I'm assuming you removed your cancerous lymph node before starting on the immunotherapy? I took the neoadjuvant therapy route by taking the immunotherapy first for about 5 months then I followed that with the removal of the lymph nodes. The biopsy of the lymph node indicated a Complete Response. I was very fortunate. The verdict is still out on how long to continue the Immunotherapy for those that get a Complete Response. No one really knows, this therapy is very new. That's why I was asking.. Obviously if i got a partial or no response they would of likely added a second drug to it.

tkoss - (9/13/2020 - 9:40am)

yes , they did a SLNB prior to any immo. 4 axiallry LN's removed.

so i don't miss anything you are saying?

is there any reason you did the reverse? Immo then excision?
when you say "Complete Response" what do you mean?

Tkoss, google "neoadjuvant" and "OpACIN- neo trial" and " Dr. Christian Blank" as well as PRADO Trial or you can watch the following videos that explain neoadjuvant trials and treatment research going on in melanoma. https://www.youtube.com/watch?time_continue=1&v=7ToM-Fht5YE&feature=emb_... https://www.youtube.com/watch?time_continue=1&v=GCNqonvrPj0&feature=emb_...

caman - (9/14/2020 - 4:59pm)

Tkoss, yeah i did the reverse. But it wasn't considered the SNLB which I attempted to do unsuccessfully 2 years ago. I became stage 3 two years later after my primary was removed. Considered a regional metastasis and likely my sentinel nobe. In any case, I chose to take the drug first before removing because I feel this will be the new standard of care in the near future. It was regional, small and figured i could use it as a guinea pig to see if immunotherapy would be effective on me plus some feel you can sensitize the your T cells which then can attack any future lingering cancer cells. If I took out the nodes first then the drug I would never know if the drug is working or not plus i didnt sensitize my T cells. After taking the Keytruda for 5 months they removed the nodes and biospy result was PCR ..PATHOLOGICAL COMPLETE RESPONSE..meaning zero sign of cancer with zero residual cancer cells in those lymp nodes removed. That's something you can't perform with a Pet or CT scan. So my question still remains, how much longer should I stay on Keytruda knowing my next infusion can give me a non reversible side effect, not mentioning killing my present stamina and quality of life. Who knows? the doctors are spilt with this, right now Im too chicken to stop and I'm listening to the doctor that knows the most who saids to stay on it, but no one knows for sure

Mark_DC - (9/14/2020 - 10:55pm)

Thanks Ed for posting the videos and this trial - I dont fully understand the results but I Think neoadjuvant could be promising
Thanks for sharing these

Summer S. - (9/16/2020 - 3:32pm)

Hi camen,

I do not have a previous experience with that,

But I noticed you are now NED and that is fantastic news!

This is just awesome, and am so happy for you

Love,
S.

I was stage 4 no surgery. tumors in lung, pelvis, lymph node, about 7 in all. I had yervoy/opdivo combo. After 2nd treatment bump on my lower back above waist gone! Only was able to have 3 of the 4 combos treatments 3 weeks apart due to toxic liver. After 5 months of prednisone, liver perfect. Then 2 years of opdivo maintenance every other week. 30 minute IV. Petscans every 3 months.
I had to go 7 months this time because of COVID. Cancer has not reappeared. My Kaiser oncologist said it has not reappeared in his other patients treated the same as me. Initially side effects, fatigue, rashes, I still take 125mg of thyroid meds. But I'm alive! I have had 5 brain mri's in the 3 years. It did show some spots after the prednisone and no treatments for 5 months then they went away.
Have faith. Also i received lots and lots of prayer. I was only given 90 mg of opdivo for 2 years. Oncology nurses said i received the lowest dose they gave to any patient. Thank you all for this forum. Many of you helped me 3years ago! Sharon, Simi Valley, CA

Sharon, Simi Valley

I was stage 4 no surgery. tumors in lung, pelvis, lymph node, about 7 in all. I had yervoy/opdivo combo. After 2nd treatment bump on my lower back above waist gone! Only was able to have 3 of the 4 combos treatments 3 weeks apart due to toxic liver. After 5 months of prednisone, liver perfect. Then 2 years of opdivo maintenance every other week. 30 minute IV. Petscans every 3 months.
I had to go 7 months this time because of COVID. Cancer has not reappeared. My Kaiser oncologist said it has not reappeared in his other patients treated the same as me. Initially side effects, fatigue, rashes, I still take 125mg of thyroid meds. But I'm alive! I have had 5 brain mri's in the 3 years. It did show some spots after the prednisone and no treatments for 5 months then they went away. Sharon Simi Valley, CA
Have faith. Also i received lots and lots of prayer. I was only given 90 mg of opdivo for 2 years. Oncology nurses said i received the lowest dose they gave to any patient. Thank you all for this forum. Many of you helped me 3years ago! Sharon, Simi Valley, CA

Sharon, Simi Valley