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#8 Pembro cancled due to desease progression..
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#8 Pembro cancled due to desease progression..

› Forums › General Melanoma Community › #8 Pembro cancled due to desease progression..

  • Post
    • May 4, 2018 at 3:30 am
    MelanomaMike
    Participant

      Hi MRF Family, im finally here, sorry i was MIA "again" and i know i said i would write more but, im just not having a good time like someone said i wouldangry….Current Status Report: started Pembrolizumab Nov 2017, had 7 infusions of it with 2 scans  showing desease progression, 1st scan was a bit better as i wrote about back when it happened but, last weeks CT w/contrast showed absolutley nothing to hip hip huray about, all tumors did get larger, no new ones, none shrunk, zilch, just got bigger, i didnt even ask the sizes, BIGGER is freakin still BIG in my book, all tumors are to big…

       Plan B is {what my Oncologist & i have called it} is,  the ol' Opdivo/Yervoy combo. This will began next week May 11th {Friday thank God} so, i know it comes with more side effects then Pembro {wich I had very little of except a 45.3  TSH Thyroid level {i know right?}…Screw it, bring it! Plan B has got to work cuz Plan C SUCKS! A week stay "In-House" treatment of IL-2  or whatever else they would plan on givin me…no no no…Ipi & Dipi  is Gunna Work!…theres my latest, now its time to browse and reach out to some new folks here since ive been on last…Take care ya'all, ill keep you posted…Warrior On Bro's & Sisters, Mike..

       PS: Anyone who has or is currently taking the Opdivo/Yervoy combo please reply, id like to get a heads up on effects…Thanx..

    Viewing 9 reply threads
    • Replies
        • May 4, 2018 at 1:26 pm
        tschmith
        Participant

          Hey Mike! I haven't been posting for quite some time…life got in the way.  But I'm back.  My name is Terrie, Stage IV survivor.  (Probably need to update my profile.)  I had various treatments including Yervoy, but not the combo.  Yervoy had to be discontinued after 2 infusions because of Pituitary issues.  Eventually I entered a clinical trial at NIH (gene transfer).  At first it was considered a fail but I soon started Pembro and the two were a big success (so far…3 years post treatment/remission in June.) So you never know, Mike!!!!  Possibly what you have done previously will combine with ipi/Yervoy to bring the results you want and need. I'll be looking forward to hearing more.  Good Luck!  t

          • May 4, 2018 at 1:29 pm
          gopher38
          Participant

            Hello Mike,

            Sorry the keytruda isn't working; hope the combo does better.  I wouldn't worry about the combo side effects until it really happens.  I can't say for sure if I'm doing the combo or nivo double dose (blind study), but whichever it is, it hasn't affected me like some others.  So I'd say bring it on. More important that it does it's job, so I'll have fingers crossed that it does.

            Warren

              • May 4, 2018 at 9:55 pm
              Edwin
              Participant

                I received Keytruda from November 2015 to March 2016.   Due to disease progression, I was switched to the Opdivo/Yervoy combo in April 2016  The side effects with the Opdivo/Yervoy combo were much worse than those with Keytruda, but this new treatment put my melanoma into remission.   With the combo treatment I lost too much weight and needed to stay close to a toilet for several weeks.

              • May 4, 2018 at 9:59 pm
              Mat
              Participant

                Mike, sorry to hear.  I "failed" pembro after a few treatments.  After a (then second) stint on BRAF-MEK, I switched to ipi/nivo in Jan 2016.  I had 3 combined infusions and then ~20 nivo infusions.  So far, I've been stable since.  I suspended treatment in May 2017 due to side effect issues.

                • May 4, 2018 at 10:56 pm
                doragsda
                Participant

                  My wife started Ipi/Nivo combo in September 2017.  She finished all 4 combo doses and then switch to Nivo alone every two weeks which she is still on.   She had two brain mets, one resected and both areas hit with gamma knife just before starting immunotherapy.   Her side effects were pretty mild – fatigue, some joint aching, and some itchy skin.  She has worked continuously while on the immunotherapy.   They have all tapered off since finishing the Ipi portion, though they are still there on occasion.   She is currently NED.   Good luck to you.

                  • May 4, 2018 at 11:23 pm
                  kcmtnbiker
                  Participant

                    When I started Yarvoy it was not yet approved for use in combo with Opdivo. However, I did go through a course of 4 biweekly Yarvoy infusions. After a month off I did 35 biweekly treatments of Opdivo. Then a year off. I am about 11 treatments of Opdivo into round 2. My only complaint has been fatigue. I have tolerated this stuff better than most. I refuse to let the fatigue win. I try to remain active and live my life. I hope you are as lucky as I have been.

                    • May 5, 2018 at 1:31 am
                    Mark_DC
                    Participant

                      Hi Mike, I hope Plan B works. I also hope the progression is not too large so can still be contained. Ipi/nivo sounds good and you have your Plan C too, but have you asked about possible clinical trials? That could be Plan C instead. Plan B seems a good one. Good luck and prayers too, Mark

                      • May 5, 2018 at 2:43 am
                      Ridingaroundwith27Jennifers
                      Participant

                        HI Mike,

                        I want to wish you well on the Yervoy/Opdivo combo.  I did two combo infusions and then had to stop because of side effects but I was really lucky.  The two doses worked wonders.  I'm not going to lead you astray I did have a brain tumor pop up while I was off treatment but surgery, SRS and back on Nivo and a year out I'm still OK.  Nothing new, everything else shrinking or completely gone.

                        Good wishes to you and stay strong.  You can do this!

                        Jennifer

                          • May 5, 2018 at 4:24 am
                          Ginsy
                          Participant
                            Hi Mike, My name is Gini and this is my first time posting on the site. I have read most of the posts here on the site beginning with the 2010 posts. Treatment with Yervoy/Opdivo combo is what I started off with in October 2017. I only made it through the first treatment then had to stop due to hyperthyroidism which later turned into hypothyroidism. Plus I got the rash pretty bad all over my body. After about 6 weeks I started treatment again with Opdivo only. I have had 10 treatments so far and my tumors have shrunk remarkably. My 2 brain mets shrunk enough that I was finally able to resume driving about 3 months ago. I was diagnosed as having 1 tumor on each of the following organs. Lung, liver, maybe Kidney, 2 on my scalp, one on the back upper portion of my spinal cord a big one in my jaw and a big one on my chest. I am a mess but the tumors are shrinking and my main side effects are fatigue and muscle aches, back pain, joint pain etc. I was given oxicodone for the pain. I am on thyroid medication also. Now that my thyroid is doing better I am not so wiped out all day and can finally get back to taking care of the things that need taking care of. Praise the Lord!! Anyway never give up Mike. We all must keep up the good fight. I will pray the combo treatment works for you. God bless you.
                            • May 6, 2018 at 1:50 pm
                            Ridingaroundwith27Jennifers
                            Participant

                              Hi Gini,

                              Just want to say congratulations on your first post and you are amazing!  Keep up the good work and the positive attitude.  

                              Good wishes to you.

                              Jennifer

                              • May 6, 2018 at 11:57 pm
                              CancerSpouse
                              Participant

                                Ginsy, thank you for posting. What you said above is an inspiration to all of us. I'm glad you shared your story. ~ Carol

                              • May 6, 2018 at 4:37 am
                              TexMelanomex
                              Participant

                                Big Mike, 

                                You already know I'm in your corner. I'm glad that there is a plan B and I suspect as you warrior through it you are going to put the hurt on the enemy. Not the news we were looking for this time, but stay in the fight brother, victory will be delcared. You are in my thoughts and prayers my warrior brother.

                                • May 6, 2018 at 12:06 pm
                                Bubbles
                                Participant

                                  Hey Mike, 

                                  Sorry pembro didn't do all you needed it to.  Hopefully, the ipi/nivo combo will indeed get you where you need to be.  As you probably already know and as many posters have already mentioned…side effects for all immunotherapy is pretty much the same set of things.  Ipi, unfortunately, is the bad boy of the bunch, but it varies a great deal from person to person.  On a positive note (also as other posters have mentioned!!) there is this:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/05/asco-2016-nivo-plus-ipi-checkmate-069.html

                                  Lot's of folks do really well even if they do have to stop ipi, and carry on with nivo alone, due to side effects!!  Wishing you my best!  Celeste

                                  • May 6, 2018 at 11:59 pm
                                  CancerSpouse
                                  Participant

                                    Mike, I'm sorry the Keytruda didn't do the job. Sometimes the "B" in Plan B stands for BETTER. Thinking of you! ~ Carol

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