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ipi niivo ,drug or melanoma side effects ? drenching sweats mid afternoon ?
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ipi niivo ,drug or melanoma side effects ? drenching sweats mid afternoon ?

› Forums › General Melanoma Community › ipi niivo ,drug or melanoma side effects ? drenching sweats mid afternoon ?

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    • March 17, 2017 at 8:17 pm
    debwray
    Participant

      Hello folks,

      Had dose 3 of IPI/ nivo 23/1/2017 and ended up with  raised liver enzmes on rechallenge after drug holiday and resolution to normal levels fpllowing drug holiday after dose 2 of combo.

      After dose 3 , liver number up again so dose 4 delayed and after that ended up with more sweats.not fevers but my hair and  back ends up drenched as though I've done a very heavy work our. Leaves me feeling exhausted,Could be side effects from the drugs, now on pregablin /Lyrica due to trapped nerves exiting spinal cord and morphine.Also still on steroid taper at 20 mg till next appointment. Could be menopause but this seems a bit extreme. Could be drug side effects- Could be due to secondary liver mets ? What ever the cause these have taken off recently

      Still officially waiting for more immunotherapy but Onc wants to hold off until ct scan results a week today as have previously shown progression in Jan / Scan same date as dose 3- and I think he wants to assess progression on liver before deciding if the harms of treatment beyond progression are likely to exceed any benefit- depending on what the scans show.. Two possible reasons to halt treatment- liver damage and again on rechallenge also no evidence to date of benefits.

      Had palliative radiotherapy on spinal nerve exits last Monday. New pain regime is working much better and so am a little bit more mobile. Although pain on crest of left hip is pretty extreme from time to time. Radiotherapy to pelvis planned in next  weeks.

      Also over last  two weeks have had some sore/ tender lymph nodes in breast bone area that showed reactivity / disease on last scan..

      Keep hoping progressive disease may turn stable or better at scan… but that seem a big ask given scary pace of spread to bones , lungs and lymph nodes whilst on interval CT scans

      Have heard of others in trial reports with delayed responses– anybody out there can report similar ?

      Am BRAF wild type and options here are limited as second line- Onc mentioned chemo at last review and talk is all about dealing with my pain.. treatment seems to be a no go area until scan results known..Not even sure he would go to nivo maintenance dose and skip dose 4 as no evidence of benefit but evidence of harms.

      Think things are not looking good .. but would be interested if anyone had similar sweats on the combo and if these were before a response or if this is just another symptom of this rotten disease. Sorry for long rambling post.. my news seems to go from bad to worse …and am worried that no further treatment seems the most likely next action even though being treated in a national research centre of excellence.

      All responses encouraging or otherwise are welcome. I just need to get my head round what is happening and  the afternoon sweats take away the little bit of energy / concentration I have left.atthe moment.

      Love and best wishes to all dealing with this disease and the uncertainties it brings.. 

       

       

       

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    • Replies
        • March 17, 2017 at 10:28 pm
        ed williams
        Participant

          Hi Anon, I try not to play doctor but let the doctors explain things, so with that in mind I have two recent videos with some of the best in the field talking about immunotherapy combinations and the situation that can come up. I hope they are helpfull. https://www.youtube.com/watch?v=VCOAk7i9kmU  https://www.youtube.com/watch?v=xxAlW8g8Tu4  Best wishes!!!Ed

            • March 18, 2017 at 12:45 am
            debwray
            Participant

              Thanks Ed. You are a wizzard at finding these videos. I know everyone's disease is different.. But get frustrated not being able to understand causal relationships and identify symptom of disease or drug side effects. In spite of frequent hospital visits I feel so unprepared when a melanoma related issue rears its ugly head and significantly impacts on my ability to walk… Huge pain from hip bones even on the drugs. Sometimes it feels like docs know from scans likely issues but only take action after it becomes symptomatic and then there are delays in  getting treatment scheduled.

              Wish I could show early response..rather than progression..

              Need to keep the hope alive but it looks like the drugs have an ever increasing number of targets to deal with..and the bone mets are very painful with such a sudden onset..from hip discomfort to having to move round on the furniture for support. 

              Thank you for taking the time and  trouble to post. I know I'm not alone fighting this.. It does help on some of the darker days.Long may you stay a partial responder and hope that last lung met canbe resected soon so you can join Anne Marie in Ned land…

              Best wishes

              • March 18, 2017 at 12:58 am
              LHiner50
              Participant

                Hello Anon

                I was on the ipi/nivo trial and made it through the four combo does and three of the nivo before I had pancreas and thyroid issues.  Was on steroids for three months.  Stopped treatment but did have a delayed response which lasted for eight months.  I'm now on Keytruda but starting again with pancreas issues and a rash (which I just had biopsied yesterday).  Will probably have to stop treatment until these two things are resolved.  I'm finding out that everyone responds so differently to immunotherapy.  Thanks for the videos Ed.  They were very informative.

                • March 18, 2017 at 10:29 am
                debwray
                Participant

                  Hi,

                  Thank you for the information on your delayed response and subsequent treatment. Realistically I have to wait for the scan and the judement call when all the info is in.

                  New pain regime seems to be kicking in so feeling a bit more upbeat this morning….

                  Hope the pancreatitis settles down soon

                  Ended up watchng Ed's recommended ones and stack of  others too

                  It all helps trying to understand .

                  Thanks

                   

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