Ipi/Nivo

Hi Tinktoo  I am new to this see my profile. No need to apologise  for your Rant..I think your more than entitled.

I am sorry I can't give you any useful advice as I have just been diagnosed recently. But I can wish you all the best and send you my hugs and prayers.

It's a pity we can't put pictures on as I am now wondering if I also have Superficial spreading Melonoma..I will find out next month after another Biopsy. Can I ask you for some advise please?.is there anything you would do differently  in relation to your treatment?  Please take care and stay safe.N

Be who you are and say what you feel, because in the end those who matter don't mind and those who mind don't matter.”

Ipi+Nivo is state of the art immunotherapy for melanoma and £30000 a dose. If you had it 2 days ago I'd say side effects kick in any time from now onward. They are very variable from person to person. You'd only be given ipi+nivo if you are physically strong, because most people have side effects and many have side effects so severe they have to stop the treatment after dose 2. Treatment is currently 4 doses.  The good news is that just one or two doses may be enough to have the desired effect (there is ongoing research into this). My husband only managed 1 treatment. Liver side effects prevented him continuing - though these were only detectable in his blood counts, he did not feel unwell. Many seem to have nausea or gastrointestinal side effects/colitis.

Hi TT

im not sure that I would have done anything differently - it seems that melanoma works differently for different people and the treatment regime seems to change. Although that is not a helpful answer, it’s positive in that the treatment options are improving all the time which is a great thing. I guess all that I would change, hindsight being a wonderful thing, is that maybe I would have had a total lymph node clearance in my groin sooner, when I had the original slnb that showed micro deposits. That being said, I think the treatment that I am on now may have dealt with the issue without having surgery…

pits such a scary situation to be in and not improved by the lack of certainty from the professionals but they don’t know how we are going to react to treatments so inner strength and positivity required! Keep in touch….

Thanks Mother of Boys

I am sleepy it seems and have a headache but so far so good. I’m hopeful that I can complete the treatment as I obviously want to give myself the best possible chance of getting rid of this for a long time. I can feel my current melanoma lumps so am hopeful that I can feel a reduction which would improve my moral. Am drinking lots of water, trying to eat well, walking my dog and resting when needed. I hope your husband is on the upward slope

That sounds par for the course. My husband moved from ipi/nivo to radiotherapy then prembrolizumab - which he is still getting every 3 weeks. No evidence of disease in his most recent scan. He continues to work and do hobbies, eating well and exercising - just the inconvenience of popping in to hospital for bloods, scans and infusions every three weeks... Hope it works out well for you, but remember that if for any reason you can't take the whole course you may still have received enough to work its positive effect over the coming months.

Hi Tink, thankyou for  post. It raises a question with me and I am not sure it would be feasible  to do..if the Sentinnel lymph node is infected, should they not take the next , and the next until they come up with a clear one..or do they just assume that if the Sentinnel  node has  been infected, all the rest will too.

Hi Tinktoo and I'm sorry you're back on here again due to recurrence of the blasted mm.  Never apologise for ranting, anything goes on here hon.

As for immunotherapy before surgery I know Australia are currently carrying out research into this, starting drugs as soon as diagnosis rather than waiting.  I guess docs have an idea about staging mm from the initial mole depth, type and local spread and financially it's being used on lower and lower staged mms SO the fact that you already have a diagnosis and have had previous treatment makes sense of their decision to just crack on with it.  Sensible decision from them, good oncologist you've got there.  

I can't offer any advice re your ipi/nivo as I was Braf negative so just had Pembro but I'm sure someone will pop on here with advice.  Good luck with the first treatment xx

Sorry to butt in here but just wanted to offer an answer to your question re lymph nodes.  The idea of testing the setinel node (which is the first node your mole/lesion drains to) is to ascertain if the melanoma has reached there.  This op is done using a radioactive injection (and maybe a blue dye) and a scanner/Geiger scanner.  So the sentinel node is removed plus a few others, each surgeon works differently.  They are sent off for testing and Braf gene status.  Research a long while ago into the negatives and positives IE: does the removal of all nodes in that area improve survival overall and outcome is no it doesn't and it often leaves the patient with debilitating lymphoma.  So yes the premise is that if the melanoma has reached the sentinel node then it could have travelled off round the body.  It's a tricky, sneaky disease sadly. Xx

Yes well that was the original thinking but the lymph node clearance has left me with moderate lymphoedema in my right leg and if the immunotherapy now is being used to clear the entire body of any residual melanoma, is the surgery required? I don’t know the answer but it’s worth asking your team if it becomes necessary. 

Hi Tinktoo,

I had the combined ipi/nivo treatment following a Stage 4 diagnosis back in 2021.  This comprised four combined ipo/nivo sessions, followed by a six weeks gap and since then four-weekly nivo-only sessions.

As mentioned on this site previously, I think I've been lucky in that I've not had many side effects at all.

Yes I've been a bit more tired than I was before treatment, but not enough to stop me from doing anything (I'm currently taking part in the Melanoma Focus 1,000 mile Challenge and it's been an ear infection over the last three weeks which has slowed me down, rather than immunotherapy!).

The one significant side effect has been damage to my adrenal glands, resulting in a need for steroid tablets every day, but that's a very small price to pay for the fact that the metastasized cancer in my liver & lungs is no longer radiologically evident on recent CT scans.

I know there have been some nasty side effects mentioned on this site, however I think it's essential that treatment decisions are based upon a full knowledge of how people have coped, and you do not just consider the potential (lengthy list of) side effects, as not everyone will suffer!

Hope his helps, and best wishes for the future.