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Things are getting interesting…AGAIN
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Things are getting interesting…AGAIN

› Forums › General Melanoma Community › Things are getting interesting…AGAIN

  • Post
    • February 25, 2019 at 8:33 pm
    Bradley75
    Participant

      HI everyone,

      I had my regularly scheduled PET and MRI last week.  I show progression in my neck, chest, abdomen and pelvis.  A total of 12 mets in all.  Highlighted by a C7 bone met that is compressing my spine.  I get to have another back surgery.  Last back surgery was a fusion of C7-T1-T2.  The T-1 vertebrae was pushing on my spine that time.  It sounds like I get more hardware back there, but it explains all the pain I have been in the past month.  All the other mets were a surprise. 

      After surgery treatment plan is to stop TVEC (I had one confirmed met that we were treating with this after my November 2018 scans), continue Pembro and add Taxol and Carboplatin. I am not well educated on chemo treatment in addition to Pembro, but the response rate sounds promising.  Anyone have experience with these chemo drugs?

      I forgot to mention I was NED for 9 months before the TVEC and all this damn progression.  Hopefully, me and my soon to be bald head get to enjoy NED again someday.  I will keep fighting no matter what.

      Brad

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    • Replies
        • February 25, 2019 at 11:39 pm
        mandyjill
        Participant

          You got this Brad.  Praying for you!

          • February 26, 2019 at 1:35 am
          Casitas1
          Participant
            Hey Brad, I did the low dose Carbo/Taxol back in 2015 after failing Ippi/Nivo due to progressing and side effects. At that time I had a golf ball size tumor in cheek and bone met in jaw. During the chemo a spot in cheek tumor became necrotic but was still growing. Right after chemo we started Pembro and bingo! tumors started melting away! My Drs. reasoning was to piss the tumor off and gain immune response with immunotherapy. Was declared NED six months later. The side effects with low dose chemo were minimal mostly hair loss (didn’t have much to start with). If you have anymore questions ask away! Good luck Brad. Best, Paul
              • February 26, 2019 at 5:38 am
              MarkR
              Participant

                Hi Brad / Paul

                I am expecting to be told that I have failed Ipi / Nivo on Thursday for what appears to be growth of some small lung mets.  I have to say I have been feeling pretty down about this over the last few weeks but you have given me a bit more hope.  Are you both BRAF + or -?

                Thanks 

                Mark

                • February 26, 2019 at 4:10 pm
                Casitas1
                Participant

                  Hi Mark, am BRAF neg

                  Best, Paul

                  • February 26, 2019 at 4:14 pm
                  MarkR
                  Participant

                    Thanks Paul – I’m also Braf Neg but having looked can’t see this as a treatment option in the UK but will discuss with the team on Thursday 

                    cheers

                    Mark

                    • February 27, 2019 at 1:44 am
                    Mark_DC
                    Participant

                      Hi Mark – am sure I tried to reply to your earlier post but failed because of the captcha and then lost my post 🙁 

                      One thing that confuses me is you write that youhave "failed" ipi/nivo but i am not sure you were given that many treatments. when was your last nivo treatment? I thought they took you off because of ipi side effects and then didnt restart you on nivo. If any spread is small then i would think nivo maintenance should be considered especially if you have been off nivo for a long time. 

                      then in yourlast post you did talk about possible clinical trials, so maybe that should be an option too. i think celeste replied to your last posts and gave good advice. my view is that i am not sure you have been on nivo long enough or continuously to say that it "failed". i would be looking to go back onto it or a trial

                      good luck on thursday

                      your fellow Mark

                      • February 28, 2019 at 6:10 am
                      MarkR
                      Participant

                        Thanks Mark – I really appreciate your continued support

                        I’m off to the Marsden this afternoon to discuss options.  At my last consult I asked about Nivo maintenance and he felt it may not be the best course of action.  He was talking about referring me to their Drug Development Team for a more personalised approach.  After my last surgery I consented to my tumour being included in their research and I believe they will use biomarkers to look for weaknesses and available drugs to try against them, but these would be phase 1 trials and I’m not sure I’m ready for that yet.

                        Ideally I would like to start back on Nivo and see what happens, but I asked them to develop a strategy for treatment so will see what this afternoon brings.  I will be glad when this afternoon is over and I have some sort of plan – it’s been a tough couple of weeks; although a weeks skiing in Austria with my kids really helped to pick me up!!

                        Cheers

                        mark

                      • February 26, 2019 at 2:21 pm
                      Bubbles
                      Participant

                        Hey Brad!  So very sorry for this report.  However, I am going to have fingers ccrossed that your new treatment plan will give you the response you need!  Hang tough!!  Yours, celeste

                        • February 27, 2019 at 1:49 am
                        Mark_DC
                        Participant

                          Dear Brad,

                          Sorry for the not so great news. Can I ask though why are they going to take you off TVEC? How many treatments did you have? on my first couple of treatments i my tumour worsened but then it started shrinking after about six weeks so that after three months i was back to where i started and from then on more shrinkage.

                          i know you are going through a lot, including surgery, so TVEC may be a bit of a pain post surgery, but am not sure you had many injections. so as long as you dont catch herpes (am trusting Julie in SoCal is OK please!!!) isnt it still an option? although your doctors plan may be good / better too

                          good luck

                          Mark 

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