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Brain Mets and Ipi/nivo advice needed
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Brain Mets and Ipi/nivo advice needed

› Forums › General Melanoma Community › Brain Mets and Ipi/nivo advice needed

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    • July 18, 2019 at 3:24 am
    Lea345
    Participant
      My 68 year old father was diagnosed with stage 4 back in April. He had 3 brain Mets and it had also spread to his lungs and lymph nodes. Since then, he’s had 2 srs treatments, a round of keytruda, and then switched to ipi/nivo because the cancer was quite aggressive and seemed to be spreading in his brain. (We’re currently up to 9.) He’s had two rounds of ipi/nivo and is due for his third soon.

      But over the past two months, he’s seen a huge decline in quality of life. And we’re just not sure if they’re side effects from the immunotherapy or if the cancer has spread even more. He’s so weak now and has to use two canes and even a wheelchair. And he can no longer make it up stairs on his own. He struggles with standing and says it’s mostly his thighs that hurt. He did originally have some slurring and dropping of his mouth, but that seems to have cleared up. His feet have swollen so much that he can’t wear any shoes. He moves so slowly because he’s so weak.

      I guess I’m just looking for some reassurance that things can get better. He’s starting to go through a dark period. He was always so active before. He and my mom own an amazing garden center and a Christmas tree farm and it was unusual for them to walk anything less than 10 miles each day. Before all this cancer stuff happened, his cardiologist was extremely impressed with his lifestyle and general health and well being. So suddenly being so weak is taking a huge mental and physical toll on him. But now he’s lost all independence and is starting not to eat properly. I think he’s getting depressed but he’s not ready to give up and I need some good news to give him. It’s hard to keep going when it all seems so bad.

      Has anyone managed to get to NED with ipi/nivo and brain Mets when their symptoms or side effects were this awful? We need some hope and I need some good news for him. We’re not ready to lose him yet. And the whole family is having a bad couple of days.

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    • Replies
        • July 18, 2019 at 3:01 pm
        sister of patient
        Participant
          Hi Lea – I’m so, so sorry that your father and your family are having to deal with mel but you have come to a great place for information and support!!! Melanoma is an ugly, demonic, formidable disease but it can be beaten and to answer your general question, yes, people are achieving NED status through all of the treatments now available regardless of symptoms and side effects. That doesn’t mean that they don’t need some additional medications to help or a break from treatment once in a while. A low dose steroid is often prescribed to combat side effects – you don’t say if your dad is getting any but if I was in your place, I’d ask about it and certainly any stronger pain meds they might be able to give him. The arthralgias are a well-known and well-documented side effect – pretty common.

          Moreover, if I was in your place, I’d be asking alot of questions about their plan for his brain mets now. Radiation combined with immunotherapy, simultaneously, is the best way to go if possible and, after 2 rounds of SRS, his brain met count has tripled, so that would be my area of focus.

          Many questions are coming to mind – if you can let us know a bit more information, it may be helpful to others in their replies to you. That info would include:
          – where is your dad located and where is he being treated?
          – is his treating oncologist a melanoma specialist?
          – does he have a team of doctors overseeing his care ? – for instance, my sister had her oncologist (dual speciality – melanoma and gastro-intestinal), a pain and symptom management doctor (who is an oncologist) and a neuro-radio-oncologist (sp.??) who treated her brain mets. Many facilities have a team of doctors that form a review board and every case is examined by all “eyes” – to me, that would be optimal!!!

          I wish your dad every success in his treatment and please believe that his current state can turn around (for the better) at any time!!! I’ll hold the best thoughts in mind for all of you – as will everyone else here!! Take care!

          Barb

          • July 18, 2019 at 4:06 pm
          MelanomaMike
          Participant
            Oh lea345, im so sorry about your Dad, bless his heart and bless his current treatment with the Mighty Ipi & Nivo! Them 2 drugs are powerhouses against the evil of Melanoma and im glad to hear hes doing it! I can only mirror our fellow sister, Sister Of Patient who just wrote you, side effects can and already should be managed. Ipi & Nivo has a GREAT response rate and im sure your Dad will be a part of those statistics/percentages!!…
            Just keep being his rock and take good care of him, be his voice when he needs you to be…
            • July 18, 2019 at 4:09 pm
            ed williams
            Participant
              Hi Lea345, there is more and more evidence that shows Ipi+ Nivo is the best way to go with brain mets in melanoma. Each year in Chicago all the key Oncology player come together and talk about the most recent developments in melanoma and other cancers. Here is a link to this years ASCO and a peer panel talking about managing brain mets in melanoma. Wishing your family all the best!!!Ed https://www.youtube.com/watch?v=gDu3x9xhH-U
              • July 18, 2019 at 5:45 pm
              marta010
              Participant
                Hi Lea – so sorry your family is going through this. If it helps, my husband has been battling since 2012 and is as near to NED as we think he will get, with just a shadow of an abdominal met left. He’s had 5 gamma knife procedures, 3 craniotomies and has bounced back from some pretty dire days. He is currently on Keytruda and Tafinlar (Braf drug). No new brain mets since his last craniotomy/gamma knife in March of 2018. He did have some memory and speech issues after a bout of brain edema but that has cleared up and his brain function tops mine most days! His primary complaint is joint and muscle aches and pains that restrict his mobility but not to the extent your dad is experiencing. He’s also had significant issues with adrenal insufficiency which can cause all sorts of trouble – If you haven’t done so, I’d meet with an endocrinologist to check his thyroid and pituitary function. We’ve also worked with Palliative Care to address some of his pain issues – they’ were a great resource. We take it one day at a time and try not to look to far ahead.
                Ann
                • July 18, 2019 at 10:17 pm
                Mat.in.Brooklyn
                Participant
                  Hi Lea. I’m sorry to hear that your father is going through this. The Ipi/Nivo combo can be tough but there are many people here who have benefited including me. I am stage IV and had 4 brain mets and a ALND and I am currently NED. Your father’s side effects sound very familiar and the loss of function can be disheartening. Barb has offered some good questions. Your dad’s difficulty getting up the stairs and his lack of energy are typical but if they are pronounced you may want to check his ACTH hormone. It’s usually not included in the routine blood work but a test will show if his hormone is low and therefore his adrenal function is compromised. On the Ipi I felt like I was wearing a concrete suit.
                  I understand the frustration in reduced activity- I have a dog walking business in NYC and walk 10 miles a day- I couldn’t on Ipi but once we moved on to the Nivo phase I was able to get back to it.
                  Hang in there, things CAN get better. Mat
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