Home Forums Melanoma Diagnosis: Stage IV NYTimes article on severe immunotherapy side-effects

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  • #69613
    Catherine Poole
    Keymaster

    I think being tired is probably normal after your rough time. I am happy the disease is NED. Try to rest up and get some relaxing things done like a massage (for both of you) Let us know how you are doing.

    #69614
    Sara252
    Participant

    So turns out the latest round of tiredness is caused by a new condition to add to the list: adrenal insufficiency! Oncologist DOESN’T think this is caused by the Nivo. Waiting on an appt. with the endocrine guys but on steroids to manage that & looks like it’s going to be on-going. Feeling much better since started on the steroids. On the plus side, just had my second “liquid biopsy” – have any of you come across those? Basically a blood test to measure the level of the BRAF cells (because everything about my experience has been rare/unusual, including mutant melanoma cells!). Unfortunately this wasn’t even available when my journey started 2 years ago but since the first test in September levels dropped from 73 to 4, which is great. Obviously hoping for “undetectable” next time (in 4 months).

    #69615
    Anonymous
    Guest

    Sara, very good news and please tell us more about this BRAF blood test.

    Jeff

    #69616
    buffcody
    Participant

    Sara,

    I’m just returning to the Forum after a few weeks’ vacation. I, like Jonathan, am most interested in the liquid BRAF test you mention. I will pass on the info as you have it here to my most competent oncologist and see what he knows about it. If you have more info, I would appreciate that as well.

    Your course and my course of reactions/responses to the immunotherapies (ipi 2012, ipi-nivo 2016 for 1 combination infusion in May 2016, June till now and ongoing with nivo) are certainly parallel. With only the ipi ‘to blame” my pituitary ended in hypophysitis in 2014 with consequent need to be on steroids with adrenal insufficiency, Grave’s Disease followed by Hashimoto’s ending in now-to-be-lifelong hypothyroidism, frequent bouts of pancreatitis and hepatitis since April 2016, though the cause of these are a combination it seems of side effects of my abdominal tumor and, probably, the immunotherapy, diabetes (life-long too) in October 2016.

    Today my liver counts were in the hepatitis range so my scheduled nivo infusion was called off. I continue to prefer the fact that my tumor is shrinking, at least it was about two and a half months ago on the last CT scan than not having the immune side effects, but I sure wish the god of nasties would stop sending another one in my direction. I’m sure you and your husband do too.

    Frank

    #69617
    Sara252
    Participant

    Jeff, Frank, thank you for your comments.

    The biopsy on my primary melanoma (March’15) came back positive for V600E mutation of the BRAF gene. This was a bit of a double edged sword. Worsened my prognosis but meant I would be eligible for certain drugs/treatments that were only for patients with this mutation. Even in March last year when I first started the immunotherapy because the metastasis were no longer respectable this liquid biopsy wasn’t available. My oncologist was telling me all along that even when the scans were clear there was probably still microscopic disease in my blood stream & now this blood test can detect it. I had the first test in September ’16 at which point I believe it had only been available maybe a month or so. This returned a level of ’73 copies/ml plasma’ (which was deemed low to mid-range). This latest one had a level of 4. Would’ve been interesting to know where I started out but anyway. Oncologist says even if/when it comes back undetected there’s so little data it will be a guessing game to determine treatment moving forward. I’m in Australia & there’s only one lab that does the test & they’re called Genomics for Life. It’s not covered by Medicare or anything & the results take a couple of weeks. Even when it does get to undetectable I’m not sure if that’s considered a cure or just remission.

    Frank, you’ve certainly had & are continuing to have a rough time. I’m sorry your infusion was called off. Hopefully you’ll be able to get back on track soon.

    My husband & I are feeling quite positive now after 2 years of wondering what on earth will be thrown at me next.

    Hope the info re the liquid biopsy is a help (& apologies if I’ve told you things you already knew).

    #69618
    goldfidler
    Participant

    Hi Sara,

    I just wanted to chime in about the adrenal insufficiency. I too still suffer from an adrenal insufficiency. And thyroid too. I take daily meds to help with both.

    #69619
    Sara252
    Participant

    So is the adrenal insufficiency stable on the meds or does it fluctuate? I know you can find out about these things on Dr Google but I wanted to see what the endocrine guys had to say. The diabetes is still up & down but mostly up (so no hypos thank goodness). I got the impression in my brief phone chat with one dr the adrenal insufficiency could also be quite serious? Be good to hear from someone who is actually a sufferer. Sara

    #69620
    jacquesberther
    Participant

    Aloha,

    I’m NED for almost 2 year ( correction out of the trial 2 years NED 1 years) but have severe fatigue (adrenal insufficiency) one of the side effect from immunotherapy. Can do much sometime, I walk up with no energie, just spend time on the chair waiting next day.I’m 55 year old, feel like 100. Its happen in average twice a month but this week 4 days… The doc give me Hydrocortisone 20 mm but doesn’t help much. Wander if you have any other medication that can be considered for this condition. Mahalo Jacques

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