› Forums › General Melanoma Community › Chances after recurrence? (10 mths Nivo)
- This topic has 9 replies, 5 voices, and was last updated 3 years, 1 month ago by Ekaterina.
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- March 5, 2021 at 6:25 am
Hi everyone 🙂 We have a strange situation now, so your experience is very important! Dont know what to expect..Little back-story:
In the summer of 2018, my mother had a melanoma mole removed. We started a course of interferon.
In March 2019, a metastasis was found in 2 lymph nodes near the left armpit. They were removed, after two months my mother began with Opdivo. The course lasted 10 months (twice a month), but it was interrupted in March 2020 due to a lack of medicine in the city.
Since March 2019, all PET / CT scans have been clean. However, 2 days ago (2 years after limf node removal) 4 distant mts were found on the scans:
– 1 in the root lymph node of the lung (1.5×1.4sm, SUVmax 5.4)
– 2 in soft tissues (1×0.9sm, SUVmax 3.8 and 0.8×0.6sm, SUVmax 1.67)
– 1 in the ilium (1.1×0.9sm SUVmax 4.2)
Doctors are now considering treatment options. Most likely it will be an ipi / nivo combo.
Im a bit confused and really need some info or your stories)
1. Can we assume that we have progressed on Nivo, and therefore now we have less chances with immunotherapy?
2. Does the SUV levels in metastases affect anything?
3. Do you know of cases when a person repeatedly applied immunotherapy – combo instead of mono – and then received NED status?
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- March 5, 2021 at 6:49 am
Ekaterina;I just wanted to say, I know that more knowledgeable members of the forum will pop in, but in reading many past posts, people who have had progression with one drug and have moved to the two drug therapy have had some success, so take heart!
Your mom sounds strong and able to take on this new challenge. She is lucky to have you. Good luck,
Ted
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- March 5, 2021 at 8:09 am
Hi Ekaterina, with immunotherapy drugs being given in the adjuvant setting for the last couple of years we are starting to get some data on what to do if the melanoma patient progresses while on therapy or after they stop. I will let you listen to ASCO 2019 video (2 of them) followed by one from 2020 which shows the information is starting to help oncologist understand best next steps. It is not 100% clear yet but data is starting to show that Ipi+ nivo is better than just ipi alone after progression on Pd-1 drug. One question that is still in debate is should patient just get pd-1 again by itself. https://www.youtube.com/watch?v=fiyfV2CvwLE&t=12s https://www.youtube.com/watch?v=fiyfV2CvwLE&t=12s https://www.youtube.com/watch?v=8A16UTQyIYk&t=3s-
- March 5, 2021 at 8:20 am
Thank you very match! Definitely will study this videos) We had 10 months of nivo, then nothing for a year. I cant even call this a progression because we didnt have any mets on nivo and long after it.. I guess – something left untreated and started to spread when effect of nivo ended. So its more of a recurrence a year after incomplete protocol of treatment?
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- March 5, 2021 at 8:40 pm
Hi Ekaterina,I progressed to stage 4 (4 lung Mets, 2 lymph nodes, 1 stomach and psoas muscle met) after 10 months on Nivo (One dose a month). My oncologist had me start on IPI only in June of 2020 (3 of 4 infusions..liver numbers went up so no #4). So far so good on just the Ipi. 3 of 4 of the lung Mets are gone along with the psoas, lymph and stomach Mets.  My oncologist said some folks progress on Nivo, some don’t. He said that once the immunotherapy is in your system, it’s in there for good.
I’m 57 and Braf wild type (negative). My lung Mets had pretty high pet scan uptake levels (around 17 ). It looks like your moms uptake is still pretty low which is good..The Ipi treatment for the first couple months was a bit brutal, but nothing us 50 somethings can’t handle :good:
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- March 6, 2021 at 12:29 am
1. Failing single drug immunotherapy does not mean that the combo will less likely work. A combo utilizes two different pathways, whereas single drug immunotherapy does not. So if one is not 100% successful the other drug may finish the job the first one did not. Furthermore, the more drugs and treatments melanoma patients try, the more success they will have in beating the beast. The effects of drug therapies are believed to be additive and make the results more lasting.2. Low SUV levels indicate low cellular activity of the tumor which is more beneficial than having high SUV numbers. The later would indicate high tumor cell activity which I suspect would lead to high cell multiplication and tumor growth. My understanding is that SUV of 2 or more is believed to indicate malignancy however values under two are considered benign. It is also important to be aware that some SUV values may be higher and this may be due to other reasons and not due to malignant tumors but inflammation, injury, etc.
3. Yes. A friend had melanoma on her leg which spread to her groin and lungs and eventually brain. I think she started with the combo but was done after one or two infusions. She had unsuccessful Gamma knife and then chemo for brain mets. Became NED all the while on Opdivo. 18 months later melanoma appeared in her abdomen, at which point she had surgery. She is continuing on Opdivo and has been NED again for the last 18 months. This is her 6 year battle with the beast.
The point is that melanoma is unpredictable and can recur at any time. The good thing is that there are numerous options which we did not have just a few years ago.
I hope the new treatment is successful and your mom becomes NED again.
Melanie
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- March 6, 2021 at 1:47 pm
Thank you very much for such a detailed answer! At first it seemed to us that a relapse after Opdivo drastically reduced the chances. But thanks to your answer and the help of other forum participants, I understand that everything is absolutely curable. Yesterday, our doctor also noted that both the suv and the size of the lesions are small – everything was caught at a very early stage, which improves the prognosis. We have a chance to get the first infusion in a week. I hope I can return to the forum soon with good scans from my mom 🙂
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