› Forums › General Melanoma Community › Newly Stage 4 Melanoma – Brain Tumor
- This topic has 6 replies, 4 voices, and was last updated 6 years, 2 months ago by
Ridingaroundwith27Jennifers.
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- March 6, 2019 at 8:00 pm
Hello All!
my name is Jesse and in 2014 I was diagnosed with Stage 3B melanoma at the age of 29. At that point i had a wide local excision w/ clear margins but a positive sentinal node biopsy. second surgery was a complete lymph node disection in my right groin. This year was my 5th year of NED but a few weeks ago a tumor presented itself on my head. I just went through a crainiotomy about a week and a half ago. the pathology report was confirmed to be my metastatic melanoma. i know many of us here understand that melanoma really does what it wants to, in the context of showing up anywhere, but i want to be clear that my tumor was not in brain matter itself. the tumor was in the right temporalis muscle, had erroded through my skull, affected the dura but was pushing on my brain (much like a meningioma if you google it). By definition (and according to my onchologist) i am stage 4, but they were able to remove 100% of the tumor making me "technically" cancer free (and yes i know you're never "cancer free"). i will be undergoing focalized radiation where the tumor was, and after that the doctors are recommending me to take the drug Opdivo.
my question to the community is: is there anyone out there with a similar story? more specifically a metastasis with 100% resection, and have recently gone through radiation/opdivo treatments? it would be wonderful to hear your story. thanks everyone!!
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- March 6, 2019 at 9:14 pm
Hi Jesse – my husband had a craniotomy to remove a brain met in Feb 2018 followed by gamma knife to the resection cavity. He began Keytruda treatments shortly thereafter (in combo with Dabrafenib, which he had been taking prior to surgery). Successful results as his last scan in January showed no evidence of metastatic disease in his brain or body where he had had some activity in his neck and abdomen. Hope his experience provides hope and encouragement. He was initially diagnosed in 2012 and has been on one treatment or another since then. This was his first clean scan. Take care.
Ann
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- March 6, 2019 at 11:29 pm
The short answer is – yes. I was Stage IIIB in 2003 at the age of 39 and became Stage IV with brain and lung mets in 2010. Melanoma sucks great big stinky hairy wizard balls and thinks it can do what it wants. The good news is that we now have treatment options that were not available as recently as prior to 2011. Immunotherapy in the form of the Opdivo you are planning to take is one of them. After radiation to my brain tumor and removal of part of my lung I was enrolled in a Phase 1 trial for Opdivo from Dec 2010 to June of 2013. I have remained NED (that's the nifty term – no evidence of disease – that we get to use) for melanoma with no further treatment.
Here is a primer regarding melanoma treatment, with a glossary of terms at the end, that I put together that you might find helpful: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/08/melanoma-intel-primer-for-current.html
Additionally, we have found that when radiation and immunotherapy are combined patients respond much better than to either treatment alone. PLUS…there is no need to do one THEN the other. They can be done together with no ill effects. Here are many articles on the subject if you are interested:
https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=radiation+and+immunotherapy
Hope this helps. I wish you my best. Celeste
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- March 7, 2019 at 12:34 am
So, in case it wasn't clear….I was NED after SRS to my brain met and surgery to my lung and participated in the NED arm of the Opdivo trial I was in as a Stage IV patient. The other arm was of Stage IV patients with non-resectable disease. I hope you are being seen by a melanoma specialist. It can make a real difference. yours, celeste
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- March 7, 2019 at 5:55 pm
First i would like to thank you for the wealth of information and for sharing your story. second, i loved your discription of melanoma, i think we could be friends). I am being seen by a Melanoma specialist (who also specializes in brain tumors) at UCSD. He is the one who layed out this treatment plan for me. he actually used the term "im technically cancer free" (NED) becuase they surgically removed 100% of the tumor. but obviously puts you in the, catagorically speaking, higher percentile for yet again another reoccurrance.
how was your quality of life during brain radiation and opdivo infusions?
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- March 7, 2019 at 6:45 pm
The SRS or gamma knife process it seems that your doc is recommending is usually a one day, one shot thing. It is not fun, but it is not bad. I'm sure the surgery you already experienced will prove to have been much worse. My SRS experience was complicated by the fact that I had to have thoracic surgery 3 days later to deal with my lung met. Had it not been for that, I'm sure I would have been back to work much sooner than I was.
Opdivo has the potential for a variety of side effects that vary from person to person. The primer link I gave you goes into detail. Rash, joint pain and fatigue are some of the most common. I worked full time during my 2 1/2 years of Opdivo, missing only 3 days. I doubt you will take the Opdivo as long as I and the other ratties in my trial did. We were teaching/learning about it in those days. It is more likely that you will take it only for a year or possibly two, especially if you maintain your NED status.
Many here have taken Opdivo, as well as had radiation for melanoma, as Stage III and IV patients, and managed very well. Your case is actually more similar to the experiences of Stage III peeps than it is to Stage IV peeps with mets in vital organs. So that is a good thing!!! Opdivo was approved for adjuvant use in such cases (where the melanoma is removed via surgery and/or radiation, leaving the patient tumor free) in 2017. Had it been so approved sooner it may have prevented a fair bit of misery for us both…for you in 2014 and me in 2003. At any rate, we are both here!!! You can do this. Hang in there. And….we ARE friends! Yours, c
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- March 10, 2019 at 10:42 pm
Hi Jesse,
I also had a brain met which was resected followed by targeted radiation and Opdivo. My craniotomy was March 24th 2017 and I started radiation and Opdivo April 10th. My MRIs have showed some radiation necrosis but nothing else and that is stabilizing.
The radiation oncologist had said that the clinical data of radiation with Opdivo was very promising. In my case it certainly did the trick.
Good wishes to you,
Jennifer
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