Christinad

Congratulations 💗

Great news! Congratulations!! 🙂

Congratulations

Hi! I read your blog….thank you for sharing. I read you still suffer from neuropathy. Just wondering if you’ve ever tried acupuncture? It helped me a great deal. My neuropathy is pretty much gone now and at one point it was excruciating pain to put weight on my feet. It continually improved after each acupuncture session. Coincidence or placebo, maybe, but I’m a believer now.

Great news!!

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.

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.

I too have multiple bone Mets. Fortunately, I don’t have pain other than mild aches here and there. So far I’ve only had one scan that showed an overall improvement in all areas. Next one is end of March. My oncologist said if I reach a complete response, I’d have to do immunotherapy at least another year before having a discussion about stopping. He also said I don’t have to stop treatment, I can continue as long as I want to. I think I would continue as long as I’m still tolerating the infusion well. Why not? Thank you for sharing your success to give hope to those of us in the midst of battle.

Thank you for sharing the video, Ed. I watched the whole thing. Interesting stuff! The only negative part for me was the OS predictor tool. I was reminded of my reality as I checked almost every box on the tool. I had to have a pep talk with myself and give myself the same advice I give my patients. We are all different and can beat the odds! Having you and Celeste to keep us educated is priceless as well as your success stories. Keeps folks like me motivated to keep fighting no matter what the statistics say.

Thank you both for sharing! My interpretation of both articles is combination ipi/nivo is still most effective based on the results.  Is that your understanding as well? Just want to make sure I’m still on the right track with my current treatment.