Malignant Melanoma Neurosurgeon and unconventional help
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Malignant Melanoma Neurosurgeon and unconventional help

› Forums › Cutaneous Melanoma Community › Malignant Melanoma Neurosurgeon and unconventional help

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    • April 20, 2018 at 3:42 am
    Reginateam
    Participant

      We are looking for:
      – recommendations on Neurosurgeons specializing in Malignant Melanoma lesions in the brain.
      – Any stories, advice, conversation about medical alternatives to a possibly inoperable brain tumor in Stage 4 Mailgnant Melanoma

      Ina nutshell:
      – perfectly healthy, energetic, health food eating, non-smoking 58 year old female loved one diagnosed with 3 lesions in her left brain, plus a few more in her lungs (thought to be primary) 14 days ago.
      – She needed emergency brain surgery to remove the biggest tumor in her left frontal lobe, leaving a smaller tumor in her left temporal lobe and an even smaller tumor in her left parietal lobe.
      – Her recovery was going well over the next week, a little speech, movement and even walking to bathroom.
      – She was receiving steroids to stop or reduce swelling, plus pain meds, anti nausea meds and anti seizure meds.  No cancer treatments at this time as we were waiting for the Oncologist to come and consult and they said treatment was not possible until the brain recovered a little (14 days).
      – The biopsy pathology report then told us that the primary was in fact malignant melanoma, meaning with lesions in her lung and brain this was Stage 4 – bad prognosis.
      – Unfortunately she declined and another CT Scan showed growth of both tumors and more swelling.
      – Neurosurgeon prescribed super booster steroid which has helped again.
      – The Radiation Oncologist said she was ineligible as her health and weak condition meant she could not withstand the therapy.
      – The Molecular/Medical Oncologist said she was ineligible again due to her health and condition as his treatment was mostly for the body not the brain and it takes 6-8 weeks to show results, time he did not think we had.
      – The Neurosurgeon and a second neurosurgeon have both said a second surgery is not recommended as it could cause more damage to a very important part of the brain and she has possibly already used up all of her body’s healing reserves recovering from the first surgery.

      Now, what we do??  It seems the doctors are saying there are no medical options available that will improve her chances.

      Luckily we are big believers in the Cancer Killing powers of Cannabis, namely CBD oil and humulene terpenes. We are simply afraid, if the swelling returns we will not have enough time for these treatments to work on the cancer and tumors.  We may need a neurosurgeon willing to do the second surgery to help us keep our friend alive long enough for our alternative options to kill off the cancer.  We are also open to any other options you might think of?

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    • Replies
        • April 20, 2018 at 3:54 am
        Bubbles
        Participant

          I am not entirely sure what you are asking and not sure I understand the position of the doctors your dear one is seeing.  In melanoma, even with brain and lung mets, (I have had both…simultaneously!) there are now legitimate and effective treatment options.  We have learned that radiation combined with immunotherapy provides benefits greater than either treatment alone.  Here is a basic primer of current melanoma treatment options: 

           http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/08/melanoma-intel-primer-for-current.html  

          I hope your loved one is in the care of a melanoma specialist as that can make all the difference.  I wish you and yours my best.  Celeste

            • April 20, 2018 at 4:12 am
            Bubbles
            Participant

              Additionally, your friend's tumor should have been tested to determine her BRAF status.  If positive, targeted therapy, with a BRAF inhibitor combined with a MEK inhibitor, can cause amazing and rapid destruction of melanoma tumors in the brain and body.  The only problem with this approach is that for most, the response only lasts 6-9 months (though there are those who have been maintained on these medicines for years!).  However, if you can use targeted therapy to lower the tumor burden, the patient feels better and can then be switched to immunotherapy (which does take longer to work, but has more durable responses) as it works best the the least tumor burden.

              The sad fact is that if melanoma is the thing causing your friend problems…those problems will only worsen if you fail to treat the melanoma.  If you and your friend think cannabis is the way to go and your docs are willing…there is no reason you can't combine it with some of these treatments.  

              For what it's worth.  c

            • April 20, 2018 at 6:21 am
            doragsda
            Participant

              Is your friend seeing a Melanoma specialist and not just a general medical oncologist?   This is critical.

              I would seek another opinion from a different radiation oncologist.   My wife had SRS (gamma knife) 8 days after a craniotomy to remove a fairly large tumor in the cerebellum.   They treated the resection cavity and one additional tumor they couldn't operate on.   With 3 brain tumors (one resected) I would think SRS would be a good option for your friend.   The therapy isn't that hard on the patient – my wife had a little nausea the next day but it passed in a few hours and no other hardship from the radiation.  

              I would rather have the most experienced neurosurgeon available to operate on my brain rather than one that specializes in melanoma, if there even is such a surgeon.   There are definitely parts of the brain that surgeons prefer not to go into due to the risks, so it sounds like SRS would be the path to pursue.

              • April 20, 2018 at 9:20 am
              Johnjk04
              Participant

                Back in my really tough days I was treated by Dr. Veronica Chiang at Yale – New Haven. She performed 3 Gamma Knifes and 2 craniotomies to my brain. Dr. Chiang was so knowledgeable and compassionate. I have been cancer free for 5.5 years.

                 

                • April 20, 2018 at 12:14 pm
                marta010
                Participant

                  Hi – my husband was diagnosed 6 years ago and just had his 3rd craniotomy and 5th gamma knife (SRS) treatment for melanoma brain mets.  As others have mentioned, I would definitely recommend asking about the possibility of SRS for the remaining brain mets. Take care.

                  Ann

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