Wilma is a skin cancer specialist nurse, here to answer your questions about different...
I had stage 3c October ‘18 and had partial groin dx before starting on nivolumab.
6 months later I’ve had progression to chest and liver. Onco is suggesting ipi/nivo or dab/tram (as I’m BRAF)
However I saw the study (albeit retrospective) that said pro biotics reduced the effectiveness of immuno (by c70pc)...and I’ve been on strong ones. I’ve also started more side effects since March (tight chest/acid reflux).
So for these two reasons I’d like to stay on nivo for 5weeks and have a scan to be conclusive. I’ve come off the pro biotics and I’d like to investigate my gut bacteria.
Some questions, have any of you:
- been taking pro biotics whilst on immuno and if so what was the outcome?
- had your gut bacteria assessed?
- stayed on nivo after progression?
- had success on ipi/nivo after having progression with nivo?
I had monotherapy Ipi four years ago, before Nivo was available on the NHS. I was taking probiotics at the time and I was a complete responder. I have been NED (no evidence of disease) for three and a half years.
Five weeks is a long time to delay if you have progression. The probiotic studies are in a very early stage. Are you sure you aren't being distracted by them?
Tight chest and reflex were not on my list of side effects from immunotherapy. I had rash and diarrhoea. Then my anterior pituitary gland was damaged, which proved to be permanent. Worth it though as I am now living treatment-free except for replacing missing thyroxine and cortisol.
I know there have been people who had success with Ipi/Nivo or with Ipi monotherapy after Nivo. Personally, I have never had Nivo.
All the best
When I was diagnosed in 2015 with metastatic melanoma which was in many abdominal and pelvic lymph nodes back in 2015 being BRAF+ve, I had Dabrafenib, (the Dab/Tram combo wasn’t available then except on a trial ) but Dab made me feel better quite quickly as I was feeling very weak and nauseous at that time, and it gave me 9 months of time before it spread to my ovary, which was time enough for Pembrolizumab (a drug similar to Nivo) to become available on the NHS. Probiotics and gut bacteria were the talking point but I have not been tested. I had some probiotic yogurts not the drinks as the sugar content is too high for me, not every day, the pembro worked for me and I became clear in 6 months and came off Pembro after a year. A year off treatment melanoma returned to 3 lymph nodes and so I was back on Pembro, after 9 months one node grew back to the size it was before starting Pembro so they decided to remove it by surgery and after a break continue on with Pembro. I await my scan results so mainly I’m thinking the one area that was affected is gone and Pembro was working so it shouldn’t pop up anywhere else. A small part of thinks if Pembro couldn’t work on the node they removed, what’s to stop it coming back in one of the other nodes that were originally affected in 2015 with the same resistance, and could 5hat have been avoided if they had changed treatment, but that is a what if. My node that was removed and has gone into research, mel-resist to look into why people might become resistant to treatment, and to look back at blood samples to see if they can detect when/if a change can be detected, it can optionally take poo samples too to check gut bacteria, but they don’t feed back to you individually, they will feed back in a few years the research results for the anonymous participants.
It’s a very anxious time when you have a spread, you second guess if something is a melanoma symptom or a side effect or if it’s unrelated. You swing from positive to negative, to question what the oncologists are doing and as they sometimes give us choices, what choices are the best for us to agree on. It’s not always easy to ask the oncologist questions as the questions don’t always pop up in our heads at the consultation time but we have access to our keyworkers to put those questions again to them to discuss, and to arrange if necessary a phone call to the consultant to discuss.
It sounds like you are thinking that as you have made changes so feel that if they continue with Nivo that it will work again and a change of treatment might be unnecessary but the gamble will be it might not and you will have further weeks of progression, what is your attitude to that risk.
The oncologist is offering two changes of treatment but all changes have the risk the risk that they might not work as well as side effects, and the ipi treatment is best done when you are strong enough to receive it (which I wasn’t back in 2015). The ipi like Nivo and Pembro give the tantalising promise of a virtual cure, where as Dab/tram in my eyes gives an extension which can be months and can be years but it gives the further option of ipi after that if you react well.
I couldn’t answer your questions directly from personal experience and I am not a medic but I hope my insight from my own person anguish shows I understand where your at, I found it difficult to get my head around surgery surgery and continuing with the same treatment for me, as at a previous meeting with a different oncologist had been talking about a change to Dab tram for me if from being stable a progression was seen. What charmed me down was a very nice nurse who had been at the MDT and had listened to the 3 way discussion from two oncologists and a surgeon and what they’re reasoning was but it was equally important for me to tell her what my doubts were.
Your probably aiming to do all that though but wanted some person experience to be able to feed into that discussion, or if you can’t find it, to ask the ones if they have come across it before or taken into account your thoughts on risks and confidence in your oncologists opinions on what they are recommending and why they prefer one option over another, and to ensure that preference is best for not just a generic person, but for you taking your history into account. It’s important for your mind to be committed to the action that you have signed up for and to be ready to put the doubts away.
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