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ADVICE NEEDED: TAF/MEK -SEVERE SIDE EFFECTS FOR ME
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ADVICE NEEDED: TAF/MEK -SEVERE SIDE EFFECTS FOR ME

› Forums › Cutaneous Melanoma Community › ADVICE NEEDED: TAF/MEK -SEVERE SIDE EFFECTS FOR ME

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    • July 10, 2018 at 2:24 pm
    AndyZ
    Participant

      Dear members,

      I was chkecing my skin regurarly at a hospital that specializes in skin cancers and reassured me that everything was fine. I had a mole in my back which I scratched really hard and again they told me that is was nothing. I insisted and they removed it surgically but it split in half (they did not follow the protocol because they thought it was benign). They told me they could not see what it is because the mole was destroyed during surgery. Then they said it was melanoma but could not see the breslow depth. They finally said it was 1.2 with a 5-6 mitotic rate. I took it for a second opinion and they said it was 0,5mm with no mitotic rate.I had the sentinel node removed and said there was a minor inflitration. When I got the pathology report it said 2mm. I took everyhting to a melanoma specialist and her pathology report stated breslow the highest 1.1, 2-3 mitotic rate and ulceration due to scrathcing and not pathological. When she tested the lymph node she could not find any cancer cells but according to the hospital slide that made the initial biopsy on the sentinel node the maximum diameter was 0,2mm and not 2mm encapsulated. PEt scans, margins etc all clear.

      They decided againd complete node dissection and have taf/mek for a year. Within a week I had severe side effects and even after reducing the dose, after one and a half month, I was hospitalised with liver and kidney damages, crp 12, LDH 456, haematocrit 27 and almost a destroyed immune treatment.

      They stopped those drugs and now want to try an other adjuvant treatment.

      I am really afraid and considering the observation option. I have heard all the experts opinion but it would help me to hear your stories and experiences.

      Thank you in advance

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        • July 11, 2018 at 3:03 pm
        Bubbles
        Participant

          Sorry for your struggles, Andy.  It is hard to advise another what to do as most decisions regarding adjuvant treatment in melanoma, while based in science, is very personal.  A melanoma specialist is paramount, so I am glad you got there.  Any drug can have side effects…even (perhaps especially) tylenol!  So, side effects are always possible.  However, nivo (Opdivo) alone is generally well tolerated….except when it isn't.  I don't say that to worry you…but because that is simply the case.  Targeted and immunotherapy for melanoma in the adjuvant setting have been proven beneficial.  However, if your current melanoma oncologist really does not think there was metastasis to your node…then you may not really need more adjuvant therapy at all.  Passing on a CLND is now standard of care, by the way.  So…..I would have a real sit down, honest talk with your melanoma specialist.  Do they really think there was or wasn't mets in the node?  What option would they take for themselves (their son? their father?) were they in your shoes? I think either immunotherapy as adjuvant or 'watch and wait' would be reasonable options in your described condition.  I wish you my best.  Celeste

            • July 11, 2018 at 11:52 pm
            AndyZ
            Participant

              Dear Celeste,

              this post gives me the opportunity to thank you from the bottom of my heart for all your help with your responses and blog to melanoma patients. I-many times -and I am sure many many more patients or family members of a patients have found comort and/or very useful information in your posts. I truly admire you and once more your reply was helpful.

              PS. CLND is still standard of care in Greece (NOT for insurance purposes) . Now, there are a only a few of doctors that debate their supposedly beneficiary or therapeutic role and dare to rule against it when the tumor burden is very low.

               

              • July 12, 2018 at 1:46 am
              Bubbles
              Participant

                You are most welcome for the limited advice I am able to give.  Talk to your doc and I am sure you will be able to come up with a good treatment plan. Interesting about the way CLND is viewed in Greece.  (I have had two CLND's…before they were no longer de rigueur!)  Are you in Greece?  If so, you should know that I have enjoyed two very lovely visits there.  I wish you:  Kalinýchta kai kalí týchi.  yours, c

                • July 12, 2018 at 11:36 am
                AndyZ
                Participant

                  Standard practice in Greece is still CLND if the sentinel node is at all infiltrated. Really few doctors (as in 3-4) suggest the observation method and not CLND when the tumor burden is very small. Adjuvant treatment though is covered by the state even if not CLND is performed. 

                  I am delighted that your trips to Greece were lovely. If you decide to come back again please do not hesitate to contact me. I would be more than happy to provide all the info you need and, why not, even show you around 

                  • July 15, 2018 at 5:55 am
                  obtu.bt
                  Participant
                    Hi Andy, I have not known that you were in Greece. So hi to my neighbour. I am in Turkey. Do not hesitate to contact me in case you are coming to Turkey.
                    • July 15, 2018 at 8:57 pm
                    AndyZ
                    Participant

                      Hello neighbour! Thank you! you too when you come to Greece!

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