Melanoma stage 3c, I’ve had a WLE with clear margins. Head and body scans were also clear. I’m due to start adjuvant Pembrolizumab immunotherapy, on Friday 20th March, every 6 weeks for a year. I’ve been told about all the possible side effects and I’m very anxious. Has anyone else had any experience of this treatment.
Hi Pricilla
I don't have any experience with pembrolizumab but I know that there are quite a few people in this group who are on this treatment. The most recent person to post about it is Euphoria so I've 'tagged' them into my reply to you in the hope that they'll pop on and share their experiences with you.
Wishing you all the best on Friday.
Anne
"Never regret a day in your life, good days give you happiness, bad days give you experience"
Hello I have had 7 out of my 9 adjuvant Pembrolizumab treatments for stage 3D melanoma. These are every 6 weeks. All my scans have been clear since the melanoma spread to my axilla lymph nodes (they were all removed). I have had minor side effects, nausea, upset tummy, sore mouth, skin irritation, my eyebrows turned white!
All perfectly manageable. How ever after my 6th treatment I became really ill and it was found that my pituitary had stopped producing Cortisol, I am probably on hydrocortisone for the rest of my life. As well as Pembro hopefully mopping up any stray cancer cells, it can attacked normal cells as well. You have to be made aware of all nasty side effects, but a lot of people only have minor symptoms. Best of luck!
Hi Pricilla
I am not a member of this forum as I don’t have melanoma, but I have been treated with Pembrolizumab for a different cancer. In considering the possible side effects, it’s worth understanding how the drug works. It’s a PD-1 inhibitor and it’s used on cancers that express PD-L1. I understand this as follows: PD-L1 on your tumour is binding to PD-1 on your immune system’s T cells and in effect putting up an invisibility cloak so your immune system can’t see your cancer. Pembro breaks the bind and therefore gives the immune system a chance of seeing the cancer and destroying it. When this works well it can work exceedingly well - I am a great example of this as I have metastatic TNBC and have had a stable remission since 2023 thanks to pembro, without need for further treatment.
The very long list of side effects is because the drug removes PD-1 throughout your body. Your body normally uses the PD-1/PD-L1 pathway to create privileged zones around critical organs. With pembro, those shields are down, so your immune system can sometimes go a bit rogue, doing “friendly fire” type damage. I also experienced this, with an acute kidney injury, thyroid and lung damage. I have read clinical studies showing this correlation between it working well and it working a bit too well.
My experience certainly wasn’t easy, as I became very ill and needed 9 months of high dose steroids to resolve the issues. The steroids themselves also caused issues. It was really my only option with a stage 4 diagnosis and a cancer with few treatment options, but I would do the same thing again in a heartbeat as it saved my life.
If you do accept the treatment your bloods will be monitored carefully. Do be aware that issues can come on very suddenly - as my kidney injury did - and that fast treatment with steroids is really important. The drug also has quite a long half life so issues can still crop up after you stop treatment.
Wishing you all the best.
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
I am a Macmillan volunteer.
