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Update and a Q for the Brain Trust here

Forums General Melanoma Community Update and a Q for the Brain Trust here

  • Post
    Julie in SoCal
      Good Afternoon, Friends!

      The last few weeks have been a whirlwind (or a dumpster fire on a train wreck).

      But first the good news: All cancer in my body (minus head) is gone! This is a better than hoped for response. The chemo hell has worked!

      Now the bad news: I have numerous tiny (5mm is the biggest) brain mets and cancer in my spinal fluid. At this point we know it is Larry the Lung Cancer, and that I am an EGFR Register (targeted therapy didn’t work very long).

      The current plan is to get a plan. I’ll have a full spinal MRI (Atavan take me away!!!) and a meeting with the expanded brain trust at St. John’s on Tues. I also should have the results from my second (technically third — one missed) spinal tap.

      As I understand my options, they are:

      1. Whole brain radiation
      2. Chemo poured directly in my brain via a port.
      3. Immunotherapy. (I’m currently on the ipi/nivo combo)

      I am not a fan of whole-brain radiation. At this point in time, I don’t have any neurological deficits that are apparent, anyway. WBR would leave me with some. I have no earthy idea why I would do this at this point in my life.

      Chemo poured directly into my brain makes sense, but it’s kind of forever, and I have to imagine that my quality of life is going to take a significant hit. But, if I understand it right, if it works, it works fast. I’m just not sure about the math. If I spend 6 weeks in chemo hell again what does that buy me? 6 months of good life? 3 months?

      I am a big fan of immunotherapy. This is probably my melanoma bias. I know it crosses the blood brain barrier, and I know it works in the brain and CSF. And I have tolerated it fairly well. It’s not hell and it’s manageable. So life would be reasonable. But I also know it takes a while to work and that it may make things bigger before getting better. This doesn’t sound like what is currently needed. Also I’m not finding anything on immunotherapy and lepto disease in NSCLC. I suspect this is because brain involved peeps don’t make good ratties.

      So, friends. Am I thinking right? Talk to me.

      Peace to you!

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    • Replies
          Oh, Julie!!!! Damn! Dumpster fire on a derailing train in the middle of a hurricane during a monsoon on the Sahara!!!! I am so sorry. BUT!! I am glad that the rest of your precious self is good! Now for that pesky head attack! The legitimate knowledge I have about NSCLC is pretty much none. However, here are my thoughts –

          1. Shit fire.
          2. You are under really good care, so this is probably a non-starter – but have you had a complete genetic evaluation of your cancer? Both of them? I keep reading about the value of this in folks who have not responded to typical therapy and always think of Maureen’s husband who has done so well with drugs most often used for HER-2 breast cancer for his melanoma – the use of which was instigated by such testing.
          3. 2020 sucks hard.
          4. I am with you on the whole brain radiation. I have had SRS to brain mets, but it is hard for me to think I would do whole brain radiation. It is a very personal decision and if folks want to do it, they absolutely should. My problem with it is the lack of efficacy for the potential deficits. So, I hear you.
          5. My sweet Julie doesn’t deserve this shit!
          6. This is anecdotal – I have worked with kids – most with leukemia – who were given intrathecal chemo of various sorts. It is an unfun procedure to be sure, but they were pretty snowed for the process. Afterwards, there was certainly a risk of headache and other misery, but oddly enough – the stereotypical side effects of that sort of chemo were not experienced (if that is what you were thinking about) as the chemo was rather trapped WITHIN the BBB. Of course, your docs would be far wiser as to what side effects to expect, but there is that. I do have some IT articles/posts on my blog – but I don’t know that they would be of any import here as they are relative to melanoma.
          7. You have the biggest heart and the best attitude and are so loved by ever so many.
          8. Like you, I have done chemo and immunotherapy. I would take immunotherapy hands down and twice on Sundays if I had the choice between the two. I am hopeful that you can gain good effects from your current ipi/nivo or perhaps some other sort?

          I guess that’s all I got. I know your docs will be working toward a plan. Keep us posted if you can. I am happy to research anything they come up with for you if you like. Any little thing you can think of I could help you with I will do gladly! I mean, I still got extra butt cream and an Animals Farting coloring book that my dear ones sent me during my chemo incarceration that I would be happy to send your way! HA!!! Though you should probably develop your OWN special diversions!!! Open to any and all requests!!! Much love and hugs my sweet friend. Love, les

              Jeepers. That is tough. So – judging by what you wrote – I guess they told you that chemo to the brain wouldn’t be a “long-term” solution? I guess I’m always going to go with whatever could give me the longest good period, even if the odds are worse. If treatment X had a 10% chance of working, but might give me 5 good years; and treatment Y had a 60% chance, but normally only lasts a year, I’d go with X. I know things are never that clear, but that’s what would be in the back of my mind. Sounds like maybe that would be more immunotherapy, in this case? I’d also factor in the support situation. Six months ago, when they were suspecting spread to spinal and brain fluid with me, the doctor mentioned briefly that WBR might be the next step, I was thinking that at least I have a couple people nearby right now that would definitely help – pretty much without limit – if I was seriously diminished. The thinking would probably be different if I was living alone in a city. WBR definitely sounds scary (as does your option 2, though), but I know there’s at least one person on this forum who has posted that, although she too was put off by the prospect of WBR, she thought it saved her life. Funny, but when I had my gamma knife, the topic came up very briefly with the radiologist, and she said WBR has a worse rep than it deserves (easy for her to say).

              I had that full spine MRI too. My god, took forever, and I have an enlarged prostrate. Had to stop about two-thirds through to go to the bathroom, which made the techs very unhappy, but – jeez – everyone has a limit.

              Good luck with the decision making and I mostly hope you come up with a plan you feel “good” about, given the shitty choices.

              Oh, Julie, I was so, so sad to read this update. I don’t know you, but I’ve always followed your posts and have appreciated your good nature and kind heart. You somehow make managing two cancers look like a breeze!

              I really don’t have advice to offer on this one. If it were me, I’d be considering what would buy me the most time. So, if I could start with chemo, then maybe shift to immunotherapy and save WBR for when things really got shitty, that’s what I’d do. I’m not saying that the wisest approach, but my goal has always been the long game. I have a 2-year old, so that’s why the long game is especially important to me. Although, I’ll admit that I’ve been dealing with some uncomfortable melanoma crap these past two months and I’ve certainly started to think more about quality of life!

              I’ll be thinking about you and sending you light as you make this next decision.

              Hugs to you.

                Your thoughts look reasonable to me. For myself I would not consent to whole brain radiation for melanoma, even if it was the only treatment available. If I had another kind of cancer in my brain, I would ask how well whole brain radiation works for that kind of cancer. I hope your treatment is successful.
                  This really sucks but you are strong and a fighter. It ain’t over until it’s over!
                  Here are my suggestions:
                  1. Avoid WBR until the end. Do SRS instead.
                  2. Look for mutations

                  KRAS G12C

                  3. Look at these FDA approved treatments

                  Look at possible trials. I saw a number at MD Anderson but I am sure there are others.

                  4. I would also look outside of the box. I know I will be chastised by Bubbles and others but when it comes to life and death at the 11th hour what exactly do you have to lose? At least inform yourself and decide together with your oncologists. Here are some I came across and personally I use Essiac and know many people who do.
                  1. Essiac
                  2. Milk thistle shows promising results
                  Preclinical studies show that silibinin is highly effective in targeting the migratory and invasive characteristics of cancer cells, demonstrating anticancer effects in vitro and in vivo.4,5 In 2016, Dr Bosch-Barrera and his team reported positive brain responses to an oral supplement containing silibinin in two patients with non-small cell lung cancer with no other treatment options.

                  Silibinin use resulted in the significant clinical and radiological improvement of brain metastases with poor performance status that progressed after whole brain radiotherapy and chemotherapy.1 The patients experienced a 70–85% reduction in the volume of their brain metastases. The treatment procedure for one of these patients is outlined here by way of example



                  4. Then I came across this. I am aware that it says breast cancer but who says it’s just specific to breast cancer? Sometimes nature provides us with medicine and we are not even aware.


                  Honestly, I am not a lunatic but there must be a way! I wish you the best regardless of what you choose.


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