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No Replies….Uncommon for this group!?

Forums General Melanoma Community No Replies….Uncommon for this group!?

  • Post
    jjk17
    Participant
      I posted something the beginning of this week about some elevated labs (kidney functions) and the way I had been feeling. Was reaching out to see if anyone had experienced this ect. I have not heard a thing and I thought that was way unusual for this group….

      I was to have #12 of Nivo last week, but withheld due to the way I had been feeling the last 2 weeks and my creatine level was increasing some. It is week 3 now with fatigue, no appetite, feeling cold, side pain off and on and just kind of full feeling. Oncologist wants to wait until next week for labs and a CT….Its been a long 3 weeks. I just want to feel myself again….Something must be going on for me to feel this way, this is NOT ME. I am usually on the go 🙁

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    • Replies
        SABKLYN
        Participant

          Hi,

          I am also Stage 3 (diagnosed in 2011) but have not been treated with Nivo.  However, I have gleaned from my frequent reading of pasts that the potential exists for a fairly wide range of ptential side effects.  I'm not sure I recall any effecting the kidneys, but my guess is, the potential is there.  Many on this board being treated with the new generation of therapies like Nivo, have needed to take breaks due to a variety of side effects.  Many restart them after a period of time.  Sorry, I can;t provide a more personal experience with the treatment, but that's what I surmise from what I read.

           

          Stan

          ed williams
          Participant

            Hi jjk17, read your other post but didn't respond because you were asking for anyone who has had elevated kidney #. You seem to have a good understanding of the process and I assumed someone who has similar experience would respond. I know it is a shitty feeling to reach out and have no one respond!!! I sometimes respond to  posts just for the sake of giving a response on a topic that I don't really have anything of value to add!!! When, I look back at your older posts there has always been a good response, so you might just want to chalk this post up to no one reading it that has had kidney lab issues!!! Best Wishes!!!Ed

            Bubbles
            Participant

              Much like Ed, though I saw your original post, I felt you were asking for specific personal experience with problems with renal funcion while on nivo…which I have not had…so did not offer comment.

              However, if you are looking for more general information – The list of side effects from immunotherapy is long, varied and covers about every part of your body.  (If you are interested in a zillion reports just enter "side effects immunotherapy" into the search bubble on my blog.)  Renal problems are not usually in the list of most frequently cause side effects, but they are definitely there.

              Here is a report (with my analysis at the bottom) that addresses incidence of renal problems on the ipi/nivo combo:

              Pooled Analysis Safety Profile of Nivolumab and Ipilimumab Combination Therapy in Patients With Advanced Melanoma. Sznol, Ferrucci, Hogg, et al.  J Clin Oncol. 2017 Sep 15.

              The addition of nivolumab (anti-programmed death-1 antibody) to ipilimumab (anti-cytotoxic T-cell lymphocyte-associated 4 antibody) in patients with advanced melanoma improves antitumor response and progression-free survival but with a higher frequency of adverse events (AEs). This cross-melanoma study describes the safety profile of the approved nivolumab plus ipilimumab regimen.
              This retrospective safety review on data from three trials (phase I, II, and III) included patients with advanced melanoma who received at least one dose of nivolumab 1 mg/kg plus ipilimumab 3 mg/kg every 3 weeks × 4 and then nivolumab 3 mg/kg every 2 weeks until disease progression or unacceptable toxicity while following established guidelines for AE management. Analyses were of all treatment-related AEs, select (immune-related) AEs, time to onset and resolution, and use of immune-modulating agents and their effects on outcome.

              Among 448 patients, median duration of follow-up was 13.2 months. Treatment-related grade 3/4 AEs occurred in 55.5% of patients; 35.7% had treatment-related AEs that led to discontinuation. The most frequent treatment-related select AEs of any grade were skin (64.3%) and GI (46.7%) and of grade 3/4, hepatic (17.0%) and GI (16.3%); 30.1% developed a grade 2 to 4 select AE in more than one organ category. Median time to onset of grade 3/4 treatment-related select AEs ranged from 3.1 (skin) to 16.3 (renal) weeks, and with the exclusion of endocrine AEs, median time to resolution from onset ranged from 1.9 (renal) to 4.5 (pulmonary) weeks, with resolution rates between 79% and 100% while using immune-modulating agents. Four on-study deaths were attributed to therapy.

              Frequency of grade 3/4 treatment-related AEs was higher with nivolumab plus ipilimumab and occurred earlier than historical experience with either agent alone, but resolution rates were similar.

              This study looked back on 448 patients who had been treated with the ipi/nivo combo in a traditional manner.  Again, more than 50% of the patients had Grade 3/4 side effects with more than 30% of those having to stop treatment.  Most common side effects generally, were related to skin and GI issues.  When looking at Grade 3/4 side effects, the most common ones affected the liver and GI tract (much like the prior study).  Onset of Grade 3/4 side effects took only 3 weeks for skin and 16 weeks for renal problems.  With endocrine side effects excluded, the average time it took for side effects to resolve was about 2 weeks for renal and 4+ weeks for pulmonary issues.  Resolution rates were between 79 and 100% with immune-modulating agents {read:  steroids or medicines like remicaid/infliximab and others}.  I suspect that side effects in the endocrine system, given the nature of that beast and the fact that they were "excluded" here, were NOT "resolved" with such immune-modulation, but rather required therapy for the duration of the patient's life, as treatment for diabetes and hypothyroidism is expected to be.

               

              There is also this:

              Association of Acute Interstitial Nephritis With Programmed Cell Death 1 Inhibitor Therapy in Lung Cancer Patients.  Shirali, Perazella, Gettinger.  Am J Kidney Dis.  2016 Apr 21.

              "Immune checkpoint inhibitors that target the programmed death 1 (PD-1) signaling pathway have recently been approved for use in advanced pretreated non-small cell lung cancer and melanoma. Clinical trial data suggest that these drugs may have adverse effects on the kidney, but these effects have not been well described. We present 6 cases of acute kidney injury in patients with lung cancer who received anti-PD-1 antibodies, with each case displaying evidence of acute interstitial nephritis (AIN) on kidney biopsy. All patients were also treated with other drugs (proton pump inhibitors and nonsteroidal anti-inflammatory drugs) linked to AIN, but in most cases, use of these drugs long preceded PD-1 inhibitor therapy. The association of AIN with these drugs in our patients raises the possibility that PD-1 inhibitor therapy may release suppression of T-cell immunity that normally permits renal tolerance of drugs known to be associated with AIN."  

              So, yes… renal issues happen with immunotherapy.  Like almost all the other side effects, treatment usually includes close observation, delay of infusion of treatment med if necessary, and/or administration of steriods.  

              Additionally, immunotherapy itself can cause significant fatigue.  And yes….we ratties have taught the researchers….effects are cumulative.  Meaning they can develop and even worsen over time.  Be sure, though I imagine they are, that your docs are following your labs regarding endocrine function as that is something that is, sadly, frequently affected by immunotherapy, and can cause fatigue and feeling cold.

              Hope this helps.  I wish you my best. celeste

              Mark_DC
              Participant

                Hi jjk

                I did not reply for the same reasons – I am on keytruda (Pembro) and have had high liver numbers (was put on prednisone and off treatment for 3 months) then back on treatment and never had this problem again.

                I have been on pembro now almost two years and am now on doses every two weeks which makes me more tired than usual. Like you have lost appetite (food tastes different and my stomach feels sensitive). Plus side is I have lost 20 lbs after gaining 10lbs before treatment. Am net down 10-15lbs which is actually pretty good! 🙂

                My only solution to fatigue is to keep doing things (like going to the office, being in discussions or working helps me to forget the fatigue) and not to be too down about going to bed early – at least then you feel less tired during the day the next day. Over time the fatigue will go or when we finally go off treatment. I feel too tired to go cycling but tomorrow I will force myself to if the weather is OK and once I get outside and started I will enjoy it.

                Sorry we could not reply, I just think not many of us have had kidney issues

                good luck and dont let this get you down, its probably just the meds and thats just how they work or the side effects they give us, we have to ride with it sadly. we could be on chemo (like celeste now) which is much much worse I think!!!

                Mark

                MelanomaMike
                Participant
                  Jjk17!! Hi, im Mike, im usually the GateKeeper or Greeter (self proclaimed that is!) when i can catch either Newbies post’s or brand new post’s that have gone up for our viewing..Sorry i didnt catch yours, im not one of the smarty pants here(hehe) to be honest, im fairly new to treatment except for years & years of surgeries (since 2008) for Melanoma pop ups!..
                  On the subject of Ghost Town MRF i to have seen a decline in member postings & believe its due to website errors & Technical difficulties such as Spam Trafficking & “reCAPTCHA” issues (the little dealy with the puzzle to prove your NOT a Robot from Bangladesh or North Africa)…its sad, this site has helped me immensely & wish its further existence! I use my Phone to get on MRF it helps! I can’t leave Post’s here if im on my home Computer…weird..
                  So dont despair, were here its just website issues are making it hard to log-in & stuff.. I to am taking Ipi/nivo im at #6(made it through the 4 Yervoys!)..some postpones here & there for Pituitary issues & Thyroid as well but, im back on track..pro’s & cons with Immunal drugs, just keep the faith & strive on..
                    jjk17
                    Participant
                      THANK YOU EACH AND EVERYONE OF YOU FOR REACHING OUT! Sorry, I wasn’t thinking anyone was ignoring me, but after reading so much on here I had figured someone maybe had experienced this. I know everyone is different and reacts to things differently. Two months ago I had to stop due to liver issues and now this. It’s crazy, during this whole journey I have never ever felt this way or have experienced any of this. Guess its just my turn! Thank you all seriously for just listening to me vent, rant whatever!! You are the best!

                      Much love,

                      Jill

                      MelanomaMike
                      Participant
                        Your most welcome Jill! Just stay strong thru through your treatment & follow your oncology team, they will see you thru your Ups & Downs and hurddles..hopefully…
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