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My Update & a Question to you..
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My Update & a Question to you..

› Forums › General Melanoma Community › My Update & a Question to you..

  • Post
    • May 13, 2018 at 2:58 am
    MelanomaMike
    Participant

      Hi Family, well, as i stated, i started my first round of Ipi & Nivo yesterday 5/11/18 and so far so good, today im experiancing minor aches, pretty much my legs, mild, a bit "run down" but thats to be expected soon after a dose at the Juice Bar.After my last bag of Pembro {#7} my legs began to swell & knees where achy, i was prescribed Naproxine & man ol' man! that stuff is amazing for not being a narcotic, thank god cuz it was out of control with the achyness… I pray this Ipi/Nivo works {Pembro did not} cuz somethings gotta give, i need some good news right about now!

       Okay, now my question, can any one give me 1 good reason some folks here at MRF choose to be Anonymous? i dont  reply to them cuz i dont know which Anonymous im replying to..Please better inform me, im a little taken back by this choice….

       Anyways, to all my extended family {Anonymous'es included} be well, keep an animal {or 2} near you at all times, as well as  humor & music close by, it works for me….Mike

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    • Replies
        • May 13, 2018 at 3:39 am
        Coragirl
        Participant

          Hi Mike, I have been thinking of you today because I knew you were starting your new treatment Friday. My husband started opdivo Thursday. He is feeling a bit tired and achy but nothing major. I would like to tell you about a musician that helps my husband and me feel a bit better. His name is Frank Turner. Listen to Get Better on the album Positive Songs for Negative people.You are in my prayers.

          • May 13, 2018 at 10:55 am
          BillB
          Participant

            Mike Good to hear you’re tolerating the first dose well. Keep us posted.

            Bill

              • May 13, 2018 at 3:33 pm
              Coach2u
              Participant

                Hey MIke, glad you are giving updates. I am the one starting tomorrow as Keydruda did not work for me either. I did not have any side effects at all after four sessions but maybe cause it wasn’t working. I am also the guy who is supposed to go out of country on river cruise next week. You said before go but now what do you think? I will make a decision later this week. Also getting second and third opinion this week. Third opinion is about what to do if Opdivo and Yervoy don’t work. I will share any info. He said something about t-cells find out more Wednesday. Good luck to everyone. MIke K 

                • May 13, 2018 at 7:53 pm
                Sharon93065
                Participant

                  i had to cancel my Viking River Cruise to Paris last Nov due to toxic liver numbers after 3rd combo treatment.  Trust i the opdivo/vervoy!!!  After my 2nd treatment the large lump on lower back was gone!  I had 6 tumors that were either shrunk, or gone-including lung mass after 3 combo treatments.

                  Worst side effects were the rashes, went to dermatologist and got topical steroid cream. Also aveena eczema soothing moisturizing cream with colloidal oatmeal. I found the Trader Joes Tea Tree Oil, Peppermint, and Eucalyptus body wash and shampoo, conditioner really helped. I really went those rashes, would wake up 1:30am with them.  Benadryl helps but makes you tired.  So with drs permission i started taking Allegra (non drowsy) every am and it helped.  Just saying…..

                  And the biggee, wiped out my thyroid, i have to take 125mg of synthroid daily now. Still fatigued. But feeling better than when this started a year ago.

                  Sorry i canceled my Viking Cruise.  But the good news is 11 of my family is taking the Alaska 10 roundtrip on Princess cruises in 2 weeks!!  Thank you immunotherapy!

                  Sharon

                  • May 13, 2018 at 8:28 pm
                  Coach2u
                  Participant

                    Thank you Sharon for your story, it gives me some hope as I begin this journey.  Thanks for the advice on the rash, I have heard gastrointestinal issues were the worst.  Anyway if is shrinks my 3 tumors, I will be thrilled. Since this will be my first and we will be back home before second infusion hoping the initial side effects will allow me to go. We are in a pretty bad place right now and getting away from the emotions might help.  Congrats on your improvements may they continue and have a terrific cruise. MIke K.

                    • May 18, 2018 at 3:57 am
                    Sharon93065
                    Participant

                      Mike K,

                      I know those cruises supply all the wine and beer you can drink.  My Dr, told me before my first treatment not to drink.  I miss my red wine.  But i did end  up with bad liver enzyme numbers so i am glad i did not drink.  So go have a good time, stay safe.  Let us know about the trip when you get home. Sharon

                    • May 14, 2018 at 5:13 pm
                    Mat.in.Brooklyn
                    Participant

                      Hey Mike.

                      I don't post much on here but I have been following your treatment and am always impressed with your attitude.

                      I'm happy that you are starting the ipi/nivo treatment. After two treatments my scans showed brain mets had gone from 4 to 3 and after finishing the next two and having a few nivo treatments I now have two "faintly punctate" lesions.

                      I hope you get some good news as well to point the way and that this stuff works well for you!

                      Best,

                      Mat.

                      • May 14, 2018 at 5:59 pm
                      KellyH
                      Participant

                        Hi Mike!!!  I Posted fior the first time to this site on Saturday. My 17 year old son was just recently diagnosed as Stage 3…he will be starting Opdivo adjuvant therapy in the next couple weeks.  I am really glad I joined..I  am not sure how my first post came across as anonymous…I did not intentionally do that..I agree with you…I’m on here to be the concerned mom that I Am and share info and support with fellow patients that understand this world we have been thrown into so unexpectedly!!!  I am so thankful for all the positive comments I have received so far!!!! I am looking forward to hearing all about your successful treatment in the months to come!!!!! You are right sometimes you just need that one bit of good news!!!!!       Kelly 🙂

                          • May 15, 2018 at 1:53 am
                          Ridingaroundwith27Jennifers
                          Participant

                            Hi Kelly,

                            I can't imagine being in your shoes.  I hope and pray your son has a good response to the treatment.  Stay strong.  I have two daughters and the oldest just turned 12.  Lord help me.  She is going to be a handful.  I am beating melanoma but might not make it through her teen years.

                            Jennifer

                            • May 15, 2018 at 3:54 pm
                            KellyH
                            Participant

                              Thank you Jennifer!!! This is truly the hardest thing I have ever been through….its a night mare you think you are going to wake up from and you don’t….it’s my child…I am so I erehrlmed at times….but the doctors are positive so I cling to that every minute of everyday!!! And you are right….the girl teenage years are tough…..I have a 19 year old daughter!!  Lol!!! Good luck with that !!!!!  Kelly 🙂

                            • May 15, 2018 at 1:49 am
                            Ridingaroundwith27Jennifers
                            Participant

                              Fear.  Plain and simple.  People are afraid and so they post as anonymous or their intentions are not good but I choose to believe that most people are good and so the answer is fear.  When I first joined this board I though about posting anonymously and then I put on my big girl pants and posted as myself.  Of course I defined myself by my tumor burden and stole a bit from Mike Doughty's song "27 Jennifers".  

                              I hope this treatment works for you.  It did wonders for me.  Good wishes to you.

                              Jennifer

                                • May 18, 2018 at 3:49 am
                                Sharon93065
                                Participant

                                  Jennifer,

                                  i just played "27 Jennifers" on you tube.  I wondered where you got the name.  Cute.

                                  Sharon

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