Hi all. I was just wondering whether anyone has had immunotherapy and not had any side effects? I am petrified of committing to having this treatment as I feel so well at the moment. My diagnosis is stage 3b with a positive SLNB.
I was diagnosed stage 3b nearly a year ago and was offered 12 months of immunotherapy (Pembrolizumab). Like you I was well and was worried about possible side effects (and I’m incredibly squeamish and hated the thought of needles, blood tests, etc etc). But I was also terrified of the cancer spreading. I was told immunotherapy would increase my chances of not having a second melanoma from @52% to @70 so I decided to have it.
I think most people have some side effects, but the type and severity differ massively. I have certainly had some; there are times I wish I’d not agreed to immunotherapy, although I quickly change my mind about that. And my side effects haven’t been as bad as lots of people’s. They have been:
a knackered thyroid - I’m on tablets for that for the rest of my life. Well, so is my brother and he’s not had cancer. It’s not a major drama
oral thrush - I’ve had it for months and can’t get rid of it. Bicarb is the only thing that seems to keep it in check
carpal tunnel syndrome - it took a couple of months to get better (after seeing an osteopath a few times) and it’s still not gone altogether
shoulder bursitis - not sure my oncologist agrees the immunotherapy has caused this but I’m pretty sure it has. It only hurts when I raise my arm, but that’s really restricting and it’s probably my worst side effect.
I have three more infusions to go (I’ve had six) and I hope after that the side effects will subside. The treatment itself is painless and only takes about 45 mins every 6 weeks. You, of course, might have been offered a different treatment.
It’s a difficult decision as to whether or not to have it - just thought letting you know how I’ve found it might help. Best of luck and if you have any questions about how I’ve managed the treatment I’d be happy to try to help.
I suspect you'll struggle to find anyone who hasn't had some degree of side effects, however I think you need to consider the upside as well as the downside of immunotherapy.
(I can only comment based upon my experiences and I accept some people have much worse side effects than me).
I was diagnosed as Stage 4 back in 2021, followed by 24 months of immunotherapy (combination Ipi/Nivo followed by Nivo). My prognosis without treatment was 9 to 12 months....
Fast forward to late 2023, and I was told I was in remission.
Yes there were side effects (my adrenal glands have failed meaning I need two small tablets each day, and my skin is drier than it used to be with a few blotches), however I always put these issues in context with my original diagnosis.
There was a bit of fatigue during the early days of treatment, however nothing that a 30 minute doze couldn't sort out!
As I've said elsewhere on this forum, the side effects seem a very small price to pay!
Ultimately it has to be a personal decision on whether to proceed with immunotherapy, however in my opinion the potential benefits far outweigh the problems, based upon my experiences.
I was diagnosed with melanoma skin cancer 23 Sep 23. Later it spread to lymph nodes in neck and became Stage 3c
I started immunotherapy in May 24 - combination drugs nivolumab/relatlimab. At the time this was a relatively new treatment but early indications of trials were very positive.
After four treatments I had my only serious side effect in Aug 24. This affected my adrenal glands and I needed up in hospital for three days. Fortunately, the problem was quickly diagnosed as adrenal insufficiency and this has been corrected with lifelong hydrocortisone medication - only four tablets per day.
Since then I’ve had no other problems with side effects - just mild fatigue which usually disappears after a day or two of the treatment.
To conclude, I would say, In the words of the inimitable Bob Marley, “Don’t worry ‘bout a thing, ‘cos every little thing’s gonna be alright.”
Worrying never helps - stay positive and live your life. Good luck with your treatment.
To you all who have replied. Thank you so much for the advice. I feel better about things today and obviously depending on whether I have the mutant gene BRAF, will give me a choice, as it stands the plan is for me to have Keytruda, every 6 weeks. there is just one other thing I was wondering. So my SLNB was positive but there is no way of knowing whether it has travelled as far as the next lymph node, is there such a thing as a needle biopsy to find out. It’s just that I am thinking that if the cancer was in the SN. and had gone to the next lymph node then what is stopping it from still travelling around my body. Probably just over thinking things but it is a worry.
I don’t know of any needle biopsy option. I presume you have been offered 3-monthly MRI and CT scans? That is to identify any tumours that might develop if cancer cells have travelled further than the biopsied lymph nodes. I also get 3-monthly skin checks to identify any moles that start to change, and 6-monthly ultrasound of my groin lymph nodes (where cancer cells were found). The aim of the immunotherapy is to help your body kill off any cancer cells that remain.
It’s only natural to worry that the cancer has gone beyond the lymph nodes. I was convinced that they would find tumours as I’d had the melanoma for some time before I was diagnosed (the lesion was on the sole of my foot and I thought it was a blood blister that hadn’t healed - who knew you could get one on the bottom of your foot? Sadly not me). Thankfully, I haven’t had any and the medical surveillance should identify any quickly.
Keytruda is the one I’m having - it’s also known as Pembrolizumab.
Hi I am on opdivo and am due to have another infusion next week . To be honest it is wiping me out somedays with fatigue but besides that its not to bad . Good Luck to All X
I had also had mine for a while but I don’t know how long, it was on my back so I just didn’t notice it. I probably look at the sole of my foot even less, so it could be easily missed. I think they only removed 1 lymph node so that’s why I’m worried. I will probably know more after my 2 scans, I have 2 booked for the 27th March - a CT scan with contrast on chest and abdomen followed by an MRI on my brain. Happy days!!!
i had a needle biopsy, known as FNA (fine needle aspiration) which detected that my cancer had spread from my scalp to a lymph node in the back of my neck. The biopsy was fundamental to the decision to proceed with my immunotherapy treatment. So far the treatment is having the desired effect and the affected lymph nodes lesions are reducing in size. I’m now on 3 monthly CT scans to keep a check on them.
Hi Paul. Is this something you asked for or was it part of your diagnosis? I haven’t got another appointment until after I have had my scans. Apparently they like to start immunotherapy within 12 weeks of WLE. I am 6 weeks already and my scans are due on 27th of this month and I will then have to wait for those results. I am so worried that I might already have metastasis already as I think I had the melanoma for sometime before I went to the GP. How long did you have to wait for your scan results? I suppose it depends on where you are in the country, I am in Surrey so I am seen at the cancer hospital Royal Marsden. This is so unnerving.
The waiting is horrible. I got my first scan results back within two weeks - like you I was sure the cancer must have spread beyond the lymph nodes but fortunately it hadn’t. You will most likely get the results at the oncology appointment you have scheduled - they don’t tend to phone you with the results. Hopefully you will have similar good news. I’m in Surrey too but I’m being treated at St George’s in Tooting. Just waiting to have my three monthly ct and mri scans this morning…
Best of luck - I won’t say try not to worry because it’s really hard not to. Maybe try and keep busy so you are not thinking about it 24/7.
