› Forums › General Melanoma Community › Stage 4 melanoma brain mets
- This topic has 8 replies, 5 voices, and was last updated 4 years ago by
AmyM.
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- April 13, 2020 at 9:54 am
My 55 year old dad has just been diagnosed with stage 4 melanoma consisting of brain mets. He is awaiting ct chest abdo pelvis this week. Dad previously had stage 3b last year after groin dissection. The oncologist at present is saying targeted therapy consisting of encorafenib (Braftovi) & binometinib (Mektovi) is the only option. Due to supply issues with covid we have only had 2 days of tablets.
Dad is on steroids at present which hopefully will be weaned over the next 4-5 weeks & it would be great if he could get on immunotherapy thereafter. I was wondering is there anyone that had sterotactic radiosurgery for brain mets as I’m wondering would that be good while we are on targeted therapy?
The consultant said the prognosis isn’t good. My dad was working a few weeks ago and is a strong independent man so I’m trying to remain hopeful and try & make the most of treatment options.
Dad is BRAF positive.
Dad has 4 brain mets with 1 less than 2cm 1 less than 3cm, one which is just over 3cm and another which the consultant didn’t seem as bothered about is 4cm.
I was wondering if dad could even benefit from sterotactic radiosurgery on the smaller mets that are in the occipital partietal region. I’m going to discuss this with the oncologist but thought I’d post here for any useful advice / tips.
Thanks,
Amy
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- April 14, 2020 at 2:07 am
I was diagnosed with a brain met as a result of checking on my other, unrelated brain tumor. The Other brain tumor was finally stable and the melanoma was found. I had it a in few other spots in my body but my primary was in my neck and traveled quickly. It was new in the sense that it was not there three months before, but it had been growing rapidly.Anyway, I started the combo and then had surgery to remove after two doses. My original neurosurgeon really wanted it out because of sensitive placement. I then a single dose of radiation had radiation.. And within a week restarted immunotherapy. When I had the therapy break, I was hospitalized with a very Hugh fever for a week. At that point I started steroids and I have been on them sense. Many people take steroids during immunotherapy. And surgery and immunotherapy and radiation can be combined.
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- April 14, 2020 at 4:01 am
Amy, every situation is different but I can tell you mine and I hope that helps. I had 2 sub centimeter brain tumors that advanced me to stage 4. I immediately started on taf/mek therapy and had srs. Six months later the tumors resolved.
Please find your dad a large melanoma hospital that has plenty of experience with brain mets, targeted therapy and immunotherapy.-
- April 14, 2020 at 7:57 am
Thanks so much for all your help! Amazing hearing your story! We are based in Northern Ireland and with this covid situation it seems unlikely we will get to travel far soon. Have you heard of any melanoma specialists in the UK? I have reached out to a London doctor who does lots of research! I also seen a hospital in Dublin offers SRS but you need to be referred.
Amy
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- April 14, 2020 at 4:01 am
Amy, every situation is different but I can tell you mine and I hope that helps. I had 2 sub centimeter brain tumors that advanced me to stage 4. I immediately started on taf/mek therapy and had srs. Six months later the tumors resolved.
Please find your dad a large melanoma hospital that has plenty of experience with brain mets, targeted therapy and immunotherapy. -
- April 14, 2020 at 2:07 pm
Hi Amy,Sorry for all that you and your dad are dealing with. However, glad you reached out. As you can see there are many smart and caring peeps on this forum. Having a doctor who is specialized in melanoma, meaning one who is very familiar with current treatments and has treated many melanoma patients, is super important. I do recognize how difficult this can be given geography and especially with the added difficulty of restrictions due to COVID-19.
Here is a basic primer I put together regarding current melanoma therapy, with a link to a glossary of terms, that you may find helpful: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/08/melanoma-intel-primer-for-current.html
Here are a zillion reports on brain mets (scroll through for the most up-to-date reports): https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=brain+mets
As you scroll through, you will see that many researchers have found that while radiation alone is not that effective against melanoma, when combined with systemic therapy (often immunotherapy, but the same applies to targeted therapy – the combo the docs are starting your dad on) it can be more effective than either therapy alone. This report addresses that and has a link to a zillion other reports about combining radiation with systemic therapy: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2019/07/old-stuff-from-newest-asco-nlr.html
The good news is, like the other poster noted – for BRAF positive melanoma patients, BRAF inhibitors work well in the brain and the body. However, due to the frequent incidence tumor “work around” (though there are a fair number of exceptions who are maintained on targeted therapies for years) there needs to be a plan in place for what happens next.
Still, there is hope. I was Stage 3b in 2003. Advanced to Stage 4 in 2010 with brain and lung mets. I had SRS to the brain and surgery to my lung. Luckily, as none of the current melanoma therapies were approved and available at the time – the first coming on line in 2011 – I gained a spot in an Opdivo (immunotherapy) phase 1 trial late in 2010. With my last treatment in June of 2013, I have remained NED (no evidence of disease) for melanoma ever since.
Advocating for your father’s care is no small thing. He is lucky to have you. Ask more questions as you have the need. I wish you both my very best. Celeste
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- April 16, 2020 at 6:57 am
Thanks so much for the useful information & links Celeste. Your blog is amazing.
I have reached out to a few melanoma specialists so I’m waiting for a telephone appt next week. Dad still hasn’t received anymore targeted therapy drugs from the NHS although I’m chasing it. It’s difficult due to covid but shouldn’t mean that cancer patients should go without medication.
Thanks for all your help!
Amy
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- April 15, 2020 at 3:31 am
If one has up to 18 spots (smaller than 2.5 cm) in the brain, radiation oncologist would do it using a gamma knife. The neurosurgeon said that once the spots are greater than 2.5 cm, standard treatment protocol calls for surgery plus radiation. Radiation of the entire brain is used only as a last resort. Prior to starting my immunotherapy, my oncologist insisted on finding out if I had any brain mets. I think in your father’s case, they are hoping the target therapy would shrink the tumors sufficiently in order to use Gamma knife.
Best wishes
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