- June 27, 2020 at 2:57 pm
Summary; Metastatic agresive BRAF melanoma. 6 months of treatment with targeted therapy Taf-Mek, begun Dec 31 2019.
The good news are melanoma has shirnked about 70% in all my body (Met in liver, lungs, pancreas, kidney, cutaneous, etc. I was really f#$$ed up)
However after a MRI a couple of Indeterminate brain lesions, 2 & 4mm appears (cerebellum)….. Onc says we must to use radio surgery immediately…..Sincerely I’m not comfortable with situation but prefer wait and see again in 1 month with other MRI.
Any suggestions from someone with a similar experience?
Thank you in advance and keep safe.
gopher38ParticipantI have no particular medical expertize, but I have – like many other people on here – had the gamma knife surgery. I was uncomfortable about it at first, and then I thought about it, and – really – I think the chance that they “screw up” and zap anything outside the lesion is tiny. And the lesion isn’t useful brain tissue anyway. It’s not “partially functioning” brain, it’s crap that’s not supposed to be there. Whole brain would be a bit different (although still perhaps necessary), because then they are messing with functioning parts of your brain, but for gamma knife, I’d say go for it. That’s my layman’s thinking anyway.
- June 27, 2020 at 3:10 pm
Mark_DCParticipantI also don’t have expertise but if this is what your onc recommends (and s/he is good) I would go for it while they are few and still small so you can go for SRS / gamma knife. If you wait there is a risk it could get worse. Seems this approach has worked for many on this board.
- June 27, 2020 at 6:18 pm
If you have second thoughts I would seek a quick second opinion in case there are alternatives or, more likely, to confirm this approach.
Good luck Juan
- June 27, 2020 at 7:08 pm
I don’t have my own personal experience either, but have been researching this topic for the last two weeks. I believe if you have the option to do SRS, it is the appropriate best approach with your current imaging results and to do it now.. With low burden like you currently have and small amount of metastases (2) and small lesions , they want to agressively get those out now so possibly get rid of it totally with a much less invasive approach and more effective approach which is Gamma Knife/SRS. SRS is preferrable for melanoma and in general to Whole Brain Radiation. You will see people here that have had Gamma Knife/SRS with one or two brain metastases that did the trick and have been No evidence of disease for some time. Gamma Knife is fairly well tolerated and side effects tend to quickly resolve. A radiation oncologist usually only choose Whole Brain Radiation with larger number and spread and WBR has a more problematic side effect profile including memory loss and other cognitive effects and only chose WBR with a lot more spread and when they feel the cancer has seeded, they want to hit what they can’t see but think might be there when you have more spread in the brain. If you have the opportunity to do gamma knife now and have the chance to intervene quickly with a directed and effective approach, SRS has a far better side effect profile and much easier tolerated without the side effects that come along with radiating the whole brain for sure. In my opinion, I would opt for the immediate gamma knife being offered with a tolerable and fairly quick recovery. Of course, it is always your choice, you are the patient and absolutely have to be the one to drive this and it sounds like you want to wait to see if systemic drug therapy will shrink or stabilize these two lesions. However, as with all of this, so many unknown variables and no way to predict the path or speed of this at times. Had you had a previous MRI or is this the first brain MRI? As you know all too well, melanoma is an aggressive disease. Bubbles has a lot of information on brain metastases on her blog as well. These are tough decisions but would want to intervene quickly. Many wishes Juan, so sorry you have to go through this.
JudiAUParticipantBoth my neurosurgeon and melanoma oncologist were adamant that my Brian met needed to be treated quickly. I have had brain radiation to two separate spots, once for an unrelated brain tumor and then for a met. I read a lot of awful things online but honestly it was the easiest part of my treatment so far.
- June 27, 2020 at 9:44 pm
MelMelParticipantFrom what I know and have experience with, as well as the SRS radiologist and neurologist, brain mets must be treated ASAP. Brain is a crucial part of our body and the problem is that melanoma is a fast growing tumor. Basically, it can grow extremely quickly and become life threatening within six weeks. Any tumor that is larger than 2.5 cm cannot be treated by SRS so it needs to be zapped earlier than later.
- June 27, 2020 at 10:09 pm
Cerebellum is responsible for regulating motor movements which such as posture, balance, coordination, and speech, resulting in smooth and balanced muscular activity. Your tumors are presently small and you probably have no side effects. If you wait, chances are they will grow and you may experience problems with movement, balance, coordination or speech.
I strongly urge you to listen to your oncologist.
Best of luck,
sing123ParticipantJuan, I hope that you will consider jumping in quickly as others have advised. I am currently getting SRS for 3 tumors and have only experienced some fatigues which could be related to a number of things anyway. I will have 5 sessions total. Very best to you.
- June 27, 2020 at 10:22 pm
BubblesParticipantSorry for what you are dealing with Juan. I second and third all that others have written. Had SRS to a brain met myself in 2010 and remain here to tell the tale! You got this!!! If you are interested, Jackie was right! Here are a zillion reports on melanoma brain mets: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=brain+mets&max-results=20&by-date=true
- June 28, 2020 at 7:14 pm
I am so glad that targeted therapy is knocking things back!!! When you need help in a hurry, it can be the ticket! Sometimes, after the initial hurdle is achieved with targeted therapy, docs switch to immunotherapy like the ipi/nivo combo. Don’t know if that is something you have discussed with your docs. But, it is mentioned in a lot of the reports on treating brain mets, so just thought I’d throw that out there.
I wish you my best. Celeste
hxcadamParticipantI had 2 small lesions treated with SRS. From the time they did the MRI to the time they did the Brain Lab MRI they had grown .2-.3cm bigger. I believe it was about a month between the MRIs. From what I remember the radiation onc said they could do SRS as long as they were under 2.5cm but once you get bigger than that they might not be able to. My follow up MRI showed shrinkage in 1 and the other was the same size but had adema which doctors seemed to think was just treatment related.
- June 30, 2020 at 11:07 am
Tagged: cutaneous melanoma
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