Ipilimumab and Nivolumab treatment - update

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An update that might encourage or reassure others contemplating this regime.

 I completed the initial course of four dual infusions in January and have now received three ongoing monthly doses of Nivolumab alone.  I was a little daunted by the list of potential side effects but in reality I have been fortunate indeed. My thyroid has left home in disgust without leaving a forwarding address and so I have to take Levothyroxine daily. It kicked in within two weeks and the fatigue and sluggishness of hypothyroidism has resolved. I get an intermittent mild rash that needs occasional antihistamine cream. I had an intermittent chesty cough for three months but that has gone. Importantly - the affected lymph nodes in my neck disapperared completely after just the second double infusion.

So all good so far. I'm over seventy with few other issues but I'm not blind to the ability of melanoma to rear back up like a Kraken from the deep. But I'm philosophical and grateful for the extra time. The glands in my neck threatened to become very inconvenient very quickly. 

If you are on the cusp of going down the immunotherapy route I hope it helps you to know that I have, so far at least, successfully navigated through a long list of potential side effects without pain, discomfort or too much inconvenience.

  • Thank you for posting as this is a route I am about to go down.

  • Thank you for your posting. I have to make a decision soon to either have Nivolumab or take a chance and have no treatment but have 3 monthly scans. The huge list of possible side effects has really screwed with my head. 

  • I wish you well, Teardrop. Three months on, three more treatments in the bag and I remain in very good shape.No-one can say what side effects might occur but my view was;- a) in my profession (veterinary sugeon) the threatened side-effects of any drug were indeed rare. b) Was I going to sit back and let this fricking melanoma take me without a fight? Absolutely no way. The cancer has to deal with ME - not me deal with IT!!

    "There is nothing as powerful as a made up mind"  - JASON SCHECHTERLE.

  • Thank you Siegfried, I’ll take on board what you have said. 

  • What an encouraging post to read! That’s great to hear.

    I’ve just had my second infusion of Nivolumab (I have it every 4 weeks). No side effects after the first treatment but my muscles and joints are quite achy after the second. I’m taking that as a sign it’s working. Slight smile Not sure whether that warrants a phone call using the number on my blue card to report it or not? I’m 45 so not usual for me. I’m managing it easily with ibuprofen. 

  • Hi teardrop, I am in exactly the same situation as you and read more horror stories-about side effects than positive ones. Can I ask what your dissision was..

  • Hi Daron, 

    after a lot of thought. I decided the treatment was not for me. I will have checks every three months. 
    I don’t know if this is the right decision but feel it’s right for me.

    good luck to you. I hope everything goes well for you.

  • Hi poppykatkat

    my wife unfortunately has advanced stage 4 melanoma, shes about to start immuntherapy next week. What were tour experiences of this if you feel like sharing i would appreciate but understand if not 

  • Hi, just thought I would add my experience.  Stage 4 melonoma, received the ipilimumab and the nivo, took out the cancer.  2 sets of clear scans.  The ipilimumab left me with colitis for a few months,  but now completely back to normal.  Still another 12 months of nivo ahead, no side effects on this.  Just back from skiing and 4 days hiking.