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Recurrent after 12 years, stage 4

Forums General Melanoma Community Recurrent after 12 years, stage 4

  • Post
    Mary
    Participant
      Hi – my dad was diagnosed with melanoma on his scalp 12 years ago and I found this board helpful then.  I’ve checked in and read posts over the years but haven’t been active.

       

      His initial melanoma was a mole on his head.  I don’t have the pathology bit it was fairly deep- .8 if I remember correctly – Breslow was stage 4.  He had a wide excision and sentinel node biopsy done at Mayo in Rochester and results showed no speed.  He then went to monitoring – eventually on an annual basis.

      In the past couple of months dad has not felt well, thought it could be a variety of things, finally had an abdominal ultrasound a couple of weeks ago and it was full of mets.  CT of chest and abdomen showed Mets to liver, peritinum tissues, lungs, lumbar and SI joint areas.  He is in and incredible amount of pain and things have progressed very quickly.  He is on Fentynal patches and oral hydrocodone and anitnausea pills. He has a hard time walking from the pain and is using a crutch as needed.

       

      He had new lesions removed from his chest and head 10 days ago or so and they are melanoma.  He also had a liver biopsy earlier this week and it was confirmed metastatic melanoma.

       

      We finally see oncology this Tuesday.  He is basically planning his funeral this point and miserable with pain.  Is there hope for stage IV recurrent? Or are the immunotherapies mostly for initially diagnosed stage IV?

       

      I do not know his BRAF status.  What else would you ask at this appointment?

       

      Thanks for any help!

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    • Replies
        Bubbles
        Participant
          Sorry for all you and your dad are facing.  If I understand you correctly, your dad had a melanoma lesion to his scalp 12 years ago with negative nodes and the completion of a wide excision to attain negative margins.  If that is correct, not that it really matters now, he would have been roughly Stage IIa and NED (having no evidence of disease) once the lesion was removed.  Most folks who advance to stage IV do not begin there.  Occasionally, a person ends up as Stage IV as their first adventure into melanoma world, but most do not.  Either way, treatment for Stage IV melanoma is treatment for Stage IV melanoma – no matter how you find yourself there.

          Melanoma treatment – and therefore outcomes – have changed a great deal since 2011.  It is not the death sentence it once was.   Here is a primer I put together regarding melanoma treatments that you may find helpful:  https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/08/melanoma-intel-primer-for-current.html  The most durable treatment with the greatest response rate currently is immunotherapy in the form of the ipi/nivo (Yervoy/Opdivo) combo.  However, targeted therapy (in the form of a BRAF inhibitor with a MEK inhibitor) can rapidly decrease tumor burden for most patients who are BRAF positive (about 1/2 of melanoma patients).  Surgery and/or radiation can also be a way to diminish tumor burden – and therefore aid the response to immunotherapy.

          For all that this is a miserable and scary time, tell your dad that planning his funeral just now may be a bit premature!!!  I was diagnosed with Stage IIIB melanoma (cutaneous lesion and positive lymph nodes) in 2003.  As there were no effective therapies at that time, much like your dad – I watched and waited.  I advanced to Stage IV melanoma with brain and lung mets in 2010.  However, after participation in a nivolumab (Opdivo) trial {the opdivo/yervoy combo is more effective than opdivo alone} phase 1 trial – I remain NED for melanoma to this day!!!  So – there is hope.

          Be sure your dad is seeing a melanoma specialist – or at least an oncologist who has treated many melanoma patients.  Ask more questions as you have the need.  This forum is filled with many smart, caring melanoma peeps.

          I wish you both my best.  Celeste

          Christinad
          Participant
            Hi Mary,

            I’m sorry you’ve had to come back to visit the board under these circumstances. I was diagnosed with stage III in 2014 and that was a whirlwind of emotion. As the years passed I thought I was in the clear and started not to worry about melanoma anymore. Earlier this year I started to not feel good with symptoms similar to a stomach bug. I knew something was wrong. I could tell something changed in my body but it seemed to happen overnight. It got to the point that I was miserable and went to the ER. An ultrasound confirmed lesions in my liver and spleen. After a visit with my oncologist, he order a pet scan which confirmed mets to the liver and spleen as well as bones and abdomen. Like your dad I initially lost hope, primarily because I felt awful and I couldn’t wrap my head around a stage IV diagnosis or the possibility of feeling better with as much cancer as I had in my body. I was ready to give up. I started ipi/nivo on May 31st and the symptoms started to get better the first month. Unfortunately after the second comb dose I experienced a tremendous amount of side effects, but was able to push through and continue all four doses. Now I’m on maintenance infusions and it is much easier and tolerable. Here I am 7 months later and still trucking along. I’m thankful these medications are available because without them my prognosis would be far worse. I can tell you this hasn’t been easy. I’ve had good days and really really bad days but I have no regrets and wouldn’t change a thing. I’m feeling better today than I did 7 months ago and am very grateful. Please tell your dad not to give up just yet. There’s still some hope to look forward to.

            Christinad
            Participant
              Hi Mary,

              I’m sorry your having to revisit the board. I was diagnosed with stage 3a in 2014, which was a whirlwind for me. As the years passed, I didn’t think about melanoma much and thought I was in the clear until May of this year when I was diagnosed with stage 4. I had symptoms similar to a stomach flu, but I knew something was wrong and it was more than that. I went to the ER where an ultrasound was done and confirmed lesions in my liver and spleen. Long story short, I saw my oncologist, had a pet scan done which also showed cancer in my bones and abdomen. I was absolutely miserable with nausea and abdominal pain and was ready to give up. I started immunotherapy (ipi/nivo) on May 31st and within just a few weeks I started to feel better. Second infusion I started having a lot of side effects from the immunotherapy, which was unpleasant, but my oncologist let me continue and I was able to finish the four combo doses. Now I’m on maintenance doses, which is much easier to tolerate. At this point my only symptoms due to side effects are mild fatigue and joint pain, although everyone has a different experience. This is not easy for some folks, but worth it in my opinion. I feel better today than I did before starting the treatment. I’ve had one PET scan since starting treatment that showed an overall decrease in the cancer, but I have a long way to go. I’ve learned to try to be patient and remain positive which is hard some days, buts it’s doable.  I’m very thankful and grateful that immunotherapy is even option vs the alternative. Hang in there. I’m keeping both you and your husband in my thoughts and prayers. Hugs to both.

              mrbill16323
              Participant
                I’m sorry your Dad is going through this. I am so thankful for your post and for those who have replied. I’ve learned alot from your sharing. I hope your Dad can be a candidate with immunotherapy to fight it.
                Mary
                Participant
                  Hello again – thank you so much to those of you who replied to my post.  I appreciate it.  Dad had his initial oncology visit.  The doctor said that he has the most cancer spread of anyone he has ever seen on an initial oncology visit (and this is not a young doctor).  He said he likely has almost as many cancer cells in his body as normal cells.   Dads liver biopsy showed he is BRAF negative.  Immunotherapy and targeted therapy was recommended and we also discussed hospice.  I’m not sure what dad will choose to do.  The doctor seemed to feel that therapy was a viable option to get his pain more under control and give him more quality and perhaps more quantity of life, however the significantly advanced state of his disease was mentioned many times.  We are proceeding with scheduling things as though he will start treatment but he is still deciding what to do.  He doesn’t want to prolong suffering and just continue feeling miserable.

                  We met with palliative care to get a better grip on pain management.  With the mets to his spine, liver, lungs, spleen, muscles, and skin, he is is an incredible amount of pain.  Further complicated by the constipation caused by opioids.  Hopefully the new pain regimen will give him relief and he will see the benefits of pursuing treatments.

                  Today he had a PET scan done, anxious to see those results.  I’m most curious and hopeful that he does not have mets to the brain, however I would not be surprised given how advanced it is.

                  They also mentioned doing some radiation to his bone mets, hopefully that would also help decrease pain.

                  I’ll try to stop by and update as time goes on, especially if he starts treatment.

                  Mary
                  Participant
                    Another quick update. My dad passed away on 12/26/2021. 9 days prior he had told me he didn’t think he would make it to Christmas. I feel like he decided that since he did make it to Christmas, he stuck it out one more day. Things went very fast. Thanksgiving he was taking pain meds and started using a cane, by 12/22 we had to admit him because his pain was unable to be managed at home, even on morphine liquid every 30 minutes. His biggest fear with his recurrence was having pain, unfortunately he had a lot of pain those last 3-4 weeks. Many of the things that happened during that time are still traumatizing for me to think of.
                    Bubbles
                    Participant
                      I am terribly sorry for what you, your family and your dad had to go through. I wish things had been different for all of you. It is clear that you were there for your dad in every way. That is a blessing to a patient more valuable than any other. May dear sweet memories that bring smiles soon replace more traumatic ones. celeste
                      Rocco
                      Participant
                        Mary –
                        I am so very sorry for your loss and all that you and your family has gone through.
                        May your loving memories of your Dad surround you and others during this difficult time.

                        -Rocco

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