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now stage 4

› Forums › General Melanoma Community › now stage 4

  • Post
    • July 21, 2021 at 4:13 pm
    Ellenb626
    Participant
      Long story short.  I was diagnosed with melanoma stage 3b in June 2019.  I was doing very nicely until now as per CT scans, MRI of brain and ultra sound of left armpit.  The melanoma decided to spread to my left lung.  Verified on CT scan done in June 2021 and a CT guided biopsy of the nodule also done in June.  The nodule is about half an inch in size and I am starting immunotherapy  with Keytruda on Monday July 26.  I am scared but I am determined to kick this baby out of the ballpark.
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    • Replies
        • July 21, 2021 at 7:51 pm
        ThinkingPositive
        Participant
          Hi Ellen, best wishes as you start treatment and win this ball game. To encourage you, I started pembro 8/25/20 and last month achieved complete metabolic response.  I am grateful for this technology and the grace of having many positive factors in my favor.

          Keep up your strong determination!
          Cindy

          • July 21, 2021 at 11:00 pm
          sing123
          Participant
            Ellen, hope it all goes well. Keytruda has been formidable for many.

            Best to you,

            Cindy

            • July 22, 2021 at 12:55 am
            JudiAU
            Participant
              I’m sorry to have you here but hope we can help. Immunotherapy works well for a lot of people. Best of luck and ask if you treatment questions.
              • July 22, 2021 at 4:55 am
              Patrisa
              Participant
                Hi Ellen,

                my father had a very similar situation, when he progressed to stage IV, he got many mets to his lungs and also a 10cm in diameter size lump on his back.

                he started keytruda and now for almost 5 years he is NED.

                I believe in keytruda, it did an amazing job for my dad and so many others…

                take care,

                patrisa

                 

                  • July 24, 2021 at 1:01 am
                  MelMel
                  Participant
                    Patrisa and Cindy that is absoultely wonderful!

                    Ellen best wishes and may you have the same result!

                  • July 22, 2021 at 3:42 pm
                  Ellenb626
                  Participant
                    Thank you Cindy, Judy, and Patrisa for your replies and encouragement.  I mean it in a good way. I will keep posting to let you know how immunotherapy is going and what side effects I am experiencing.  I read the patient forum every day but I don’t post often.  I am thinking positive thoughts. Thanks again for the encouragement and good words about Keytruda.  If other people are NED after using it, I can be too!
                    • July 26, 2021 at 2:52 pm
                    Marilyn Nolan
                    Participant
                      Hi Ellen,

                      I’m Marilyn, also a stage 4 melanoma patient of unknown primary origin.  I just recently was upgraded(downgraded?) from 3b to 4 after taking 5 -6 doses of Keytruda as adjuvant therapy.  I got some of the side effects; GI stuff was the worst and I had to add a biological ‘inflixumab’ to help with the colitis, now something spread to my L5 spinal disk and I had to have back surgery to remove a malignant tumor (they told me 80% of these kinds of tumors that show up on scans are benign, but not mine).  It all began with a lump on the back of my neck and I had 2 neck dissection surgeries (Aug 2020 and Jan 2021 – after they found another swollen lymph node in the same place deeper down where they already did the surgery).  So there were some delays starting the Keytruda, but it was all good for a while and since there was nothing to watch on the scans, they didn’t know whether or not it was working; but thought it must be.  Anyway, wrong and now 6 weeks post serious back surgery and 2 weeks of radiation – ending this week; I am waiting to see what the new treatment will be –  no doubt a combo of 2 immunotherapies which I hope will work.

                      I just want to reassure you that the Keytruda treatments were nothing to worry about and had I not gotten the colitis, I would have stayed on it, but because of all the interruptions in the treatments due to the side effects, I think the Keytruda didn’t get its chance to do its thing.  Remember to stay in touch with your onc team so they can treat any of these inflammations that crop up to keep you going with your immunotherapy.  Best of luck to you and keep on fighting.

                      Also, can you please let me know what your first treatment plan was, if you care to share – even though the ‘unknown primary origin’ type that I have makes it more difficult to treat.

                      -Marilyn

                       

                        • July 29, 2021 at 5:32 pm
                        Ellenb626
                        Participant
                          My melanoma was on my upper left arm.It was stage 2b and after it was removed it became stage 3b because it spread to the first sentinel node in my left armpit.  That was removed in June 2019.  I didn’t do any adjuvant therapy in 2019.  I went for regular scans CT and brain MRI and ultasound of armpit until this June2021 wen the nodule on my left lung grew to a half an inch.  I has a CT guided biopsy of the nodule and it came back as melanoma.Now I am stage 4. I had my first infusion of Keytruda on Monday and so far so good. I will keep posting and let you know how I am doing.
                        • August 1, 2021 at 12:32 pm
                        soonerjenn14
                        Participant
                          Best of luck to you! I was on Opdivo (similar to Keytruda) for 9 months and had an amazing response for 9 months until my body decided to change its mind. I hear the side effects are similar, so be prepared for rash and probably vitiligo (which is a good sign it is working). My oncologist gave me hydrocortisone cream for the rash/itching. I had a near bout with colitis about 4 months in, but otherwise, I felt pretty good. Like others said, keep your care team updated with any side effects, the even mild ones.

                          Keep up the fight! You can and will beat this!

                          Jenn

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