Immunotherapy

Former Member
Former Member
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My husband has stage 3c nodular melanoma in his left arm which had spread to his lymph nodes. He had the lymph node dissection and his hopefully starting immunotherapy soon on pembrolizumab. I wanted to hear about other people's experiences of being on this treatment and how I could help him.

  • Former Member
    Former Member in reply to Amccl

    Hi Amccl,  he's doing ok the main side effect he has is tiredness after having the treatment. He sometimes feels sick but it soon passes. The only real problem he's had is it caused his thyroid to become overactive which then burnt out and has now become underactive but they spotted this straight away from his blood tests and have given him medication to hopefully balance it out. The thyroid side effects were much worse than any he had from the pembro. I hope your treatment goes ok and you don't have many side effects.

  • Former Member
    Former Member in reply to Amccl

    Hi @Amcci 

    Good luck for next week. It’s a daunting time. My husband has now had 5 cycles of Pembro. He is generally well, no gut problems or sickness but does get tired and has a snooze most afternoons. He has an underlying blood condition for which he is also receiving targeted therapy so makes it quite difficult to separate out pembro effects. He has had some quite severe migratory pains in his shoulder, ribs and back but we don’t really know if that is linked to the pembro and may be unrelated. 

    Hope it all goes well for you

    1. Thank you so much for this insight x the thyroid was mentioned by the doctor that I saw x 
  • Thank you for this info x such a daunting time I am terrified oh what lies ahead but also ready to get cracked on with these 9 doses every 6 weeks x 

  • Former Member
    Former Member in reply to Amccl

    I know the consultants have to give you all the possible side effects and we found that quite overwhelming to take on board. The feedback we had from the nurses is that most patients seem to tolerate pembro pretty well and you just need to be alert to the possibility that your immune system may go into overdrive. I’m sure you will feel more reassured once you have had the first infusion and there will most likely be a 24hour number you can call if you are worried by anything. Best wishes x

  • Yes the list was extensive…. It’s been a long process just getting to my first infusion so trying to have a positive mindset for Monday x 

  • Former Member
    Former Member

    Hi, I was on Pembro for 8 months after my stage 4 diagnosis (Braf+) and it reduced both my tumors signifcantly and Ive had no new ones for the past 10 months, so its definatley worked for me. I did get a very bad bout of Colitis (which I have a history off) and they stopped the Pembro due to this, but primarily because it worked. Best way to help him is do what you're doing and learn about the drug and keep an eye out for potential side effects. half way through my treatment I thought my Colitis was flaring up, but it turned out I had developed a Gluten intolerance and had to go Gluten Free for quit a while. Suggest you look at Melanoma UK as well for additional resources.