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Newbie: Getting perspective on my journey from the forum

Forums General Melanoma Community Newbie: Getting perspective on my journey from the forum

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      Hello, I am looking for a single forum that can help me better understand my melanoma journey which has been somewhat fragmented and only now am I coming to understand where I “think” I sit in the mix. I apologize if a new post is not where I should be writing this out….I tried asking a moderator by the email was blocked. I hope that by sharing my timeline and current status, I might get some feedback from people who have been in a similar situation and what to expect.

      . June 2021 biopsy on head showed nodular melanoma. Doc had taken a picture a year earlier so I know I had it for 18 months or so
      . Surgery April 2021 removed 7.2mm tumor. All margins and lymph nodes clear
      . PET showed 2x “very small” nodes 6x4mm on LL lung. “too small to biopsy”
      . Proceed as stage 2. No funded treatment. Placed in clinical trial 12 months. I was on Placebo.
      . Subsequent CT and PET show growth of lung nodules from 6.4 to 10×7 over 1 year
      . VATS surgery July 2022 removed nodules and subsequent PET is clear

      I have now started PEMBRO. After 2 sessions, I had significant joint pain and given 1 week prednazone plus 1 week taper. I hope to resume my PEMBRO next week. I will read online posts about PEMBRO and side effects.

      So, my perspective is that I was actually stage 4 at the outset but treated as stage 2. Maybe that is good as my placebo year was “normal” with no side effects to deal with.

      Any thoughts or insights on my journey so far? I am an optimistic person and because I have never actually been told “stage 4”, I have not really thought about the long term and am just beginning to feel the side effects of Pembro. My mind says that even if they had found the lung metastases at the outset, not much would have changed as there has been no further spread.

      Just babbling but doing this has helped me organize and piece together my health journey to date. thanks.

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          Sorry you have the need to be here, Marty. There are many smart and caring melanoma peeps on this forum. Unfortunately, it is not what it once was with some admin and site changes that did a lot to diminish the impact it once had. Nevertheless ~ welcome.

          All melanoma journeys are some kind of mucked up mess, unfortunately! Melanoma (and its treatments) refuse to play by any rules. Therefore, all journeys are a bit different. That said, here are some things that come to mind ~

          With lung mets, that certainly moves you to Stage IV. State of the art immunotherapy for Stage IV is the ipi/nivo combo. (Ipilimumab [Yervoy] combined with Nivolumab [Opdivo]) Nivo and pembro are both anti-PD-1 products that are pretty much identical with very similar response rates (about 40% as a single agent) and side effects (fatigue, joint pain, rash are pretty much a given, then there are others). Ipi has the same side effect profile except the incidence of those side effects are much greater. Alone, it has a fairly low response rate, but when combined with nivo that jumps to 50% plus.

          That said, I am a person who was diagnosed as Stage IIIb in 2003. None of the said immunotherapy products were FDA approved until 2011 and after. So, it was watch and wait after surgery. April 2010 saw progression to Stage IV with brain and lung mets. Brain lesion zapped. Right upper lobe of lung removed. Dec 2010, I was lucky to gain entry to a Nivo ONLY phase 1 trial. I remain NED for melanoma to this day with no further treatment for it. Point being – anti-PD-1 as a single agent can certainly work!!!

          Here is a post I put together covering current melanoma treatments, their response rates, side effects, etc. that may interest you: Primer

          The other important point at the moment is your BRAF status. It makes no difference whatsoever on your current therapy. But testing for it is standard of care – roughly half of melanoma patients are positive for it while the other half are not. However, it is important to know should you need to look to targeted therapy for additional treatment. I hope you don’t, but it is important to be prepared in melanoma world. Targeted therapy consists of a BRAF inhibitor combined with a MEK inhibitor and only works in BRAF+ patients.

          Here is the down and dirty on BRAF (a bit old, but still true) ~ What does BRAF mean?

          I hope that helps as a starting place. Feel free to ask more questions as you have the need. I wish you my best. Celeste

            Thanks Celeste! A very nice welcome and useful information to review. I would be interested in what chat/info sites you have felt to be the most useful over your journey.
              As an NP married to an MD, I have perused the research from journals I (and my husband) have access to. I know that is not an option for most and is a large part of why I created my blog. There, I have tried to post current data and information as time went by with my “take” or explanation written in red below the actual article or abstract. I think folks deserve to hear things straight from the horse’s mouth – not just someone else’s ranting and interpretation. Luckily, with the advent of effective FDA approved treatments, things are not as hazy in melanoma world as once they were. Still – knowledge is power. I believe patients deserve it and should seek it. No one will ever care about your life as much as you do! Feel free to use the search bubble there if you like.

              This forum has been a real boon for many. Another place, if you are on facebook, that is far more active and with pretty good scientific info as well as fellow melanoma peeps’ shared experience and support is this one: Melanoma Stage 4 Support group It is a private group and you have to request admission, but the admin are very responsive and helpful.

              Another rather irreverent and zany but supportive facebook group, is this one: Melanoma Support “Melahomies United”

              I find that Aim at Melanoma has some of the best basic information on their pages related to stages, treatment options, etc.

              Hope that helps. celeste

              Chris R
                Marty, sorry that you too are dealing with this. In 2019 I had a 9mm lesion removed from my head. Clear margins and a clear CT/PET scan at that time. In January of this year PET showed a 10mm spot in left lung that biopsy confirmed as melanoma. Boom, Stage IV. I went through 3 treatments of ipi/nivo before side effects hit…hard. First PET scan subsequent to treatment showed 80% reduction in size and very low SUV uptake. After 2+ months on prednisone, I was able to get back on nivo (Opdivo). PET scan last week showed no real change from previous scan, except another spot (8mm) with no SUV uptake showed up. This is just something to watch at this point.

                I am resolved to this being a roller coaster. Like a roller coaster, I am not in control. Thanks to Bubbles and others on this site distilling the immunotherapy info down into Cliff Notes form, I have read what I believe to be important and it has jived with what my care team has told me. That consensus gives me comfort.

                I recall reading that something on the order of 67,000 people a year are diagnosed with metastatic melanoma and 8,700 do not make it (about 1 in 8). That means 7 out of 8 of us are still around. There is reason to be optimistic!

                Hang in there and best of luck as your treatment goes forward.


                  Hello, Welcome to the board. Lots of top notch advice on this board. (The Facebook groups all seem to have substandard treatments going on.) 2B on neck, stage IV with large fast growing brain met but low tumor burden five years later. Combo, craniotomy, brain radiation, and completed immunotherapy. I had minor AE with week of fevers that kept me hospitalized. I used steroids for most of the time I was on immunotherapy. (Somewhat disputed treatment but my doctor is a big fan.) I have developed some necrosis where I had radio but no symptoms.

                  I do have a lot of issues, and remain disabled, but that is primarily because I had an unrelated brain tumor battle immediately prior to discovery of my brain met. Ironically, the same routine MRI that told me my brain tumor was stable found the brain met. Three months prior no brain met, which is how they knew it was so fast growing.

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