brain mets

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2/10/2014 2:31pm
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Replies: 9

I have been to hospital this afternoon and have been told that i cannot have gamma knife radiation cos the brain mets i have are smaill in mass. Am i right in thinking this is better than having large ones or am i just in denial? 

thanks 

 

Sal

NYKaren - (2/10/2014 - 2:52pm)

Hi, are you being seen at a melanoma center of excellence?

i had 17 and 14 mets removed in 2 separate gamma knife  procedures. (One was a recurrence because I wasn't taking my meds properly) They were all small except for one; it took a long time to plot them, and one procedure kept me over an hour actually being gamma-knifed. Time consuming, yes. Worth it, yes. 

I hope you'll get a second opinion from a great neurosurgeon. 

Take care,

karen

Don't Stop Believing

POW - (2/10/2014 - 4:45pm)

Hi, starletwoman-

One of the bad things about melanoma is that it tends to bleed. Tumors anywhere in your body can bleed at any time. If a tumor in your brain starts to bleed, that is a stroke and that can cause additional brain damage. So any and all brain tumors should be treated as quickly and aggressively as possible. The type of treatment your doctors use (neurosurgery, radiation surgery, or chemotherapy) depends on the particulars of  your case.

Please complete your profile on this forum (click on your name and then click the "Edit" tab). Tell us what you can about your original lesion and pathology report. Also, how many brain mets do you have and how big are they?  Do you have other tumors in your body? Where? Do you have the BRAF mutation? Are you now or have you been on some type of melanoma treatment? Where do you live?

If you complete your profile, it will help us help you now and in the future.

POW - (2/10/2014 - 4:45pm)

Hi, starletwoman-

One of the bad things about melanoma is that it tends to bleed. Tumors anywhere in your body can bleed at any time. If a tumor in your brain starts to bleed, that is a stroke and that can cause additional brain damage. So any and all brain tumors should be treated as quickly and aggressively as possible. The type of treatment your doctors use (neurosurgery, radiation surgery, or chemotherapy) depends on the particulars of  your case.

Please complete your profile on this forum (click on your name and then click the "Edit" tab). Tell us what you can about your original lesion and pathology report. Also, how many brain mets do you have and how big are they?  Do you have other tumors in your body? Where? Do you have the BRAF mutation? Are you now or have you been on some type of melanoma treatment? Where do you live?

If you complete your profile, it will help us help you now and in the future.

Pink - (2/10/2014 - 5:43pm)

I had 4 lesions done 3 weeks ago one was 5.9mm and they did that one in 3 fractional treatments. The other 3 were very small and they did them all at once. I think they were 2mm and less

Bubbles - (2/10/2014 - 7:25pm)

Sal,

Sounds from your two posts that you are being hit with a lot of information at once.  To answer your next question first...I completed 2 1/2 years of anti-PD1 (Merck's Nivolumab) this past June 2013 and remain NED.  This is after two melanoma primaries and mets in my lungs, tonsil and in my brain (treated with SRS at 3 mm). If interested in reading my blog of all my melanoma experiences you may google "chaotically precise".  Since you are asking about brain tumors...once a melanoma patient gets there...your prior history is rather inconsequential. 

Regarding brain mets.  Sounds like you need a new opinion from a melanoma treatment specialty center.  Stereotactic radiation (gamma knife or cyber knife) may be used on one or multiple brain mets measuring as little as 2-3mm.  The sooner and smaller the better.  Any risk of bleeding or radiation necrosis is MUCH diminished the smaller the lesions are when they are treated.  So don't let folks scare you about that!  The resolution of an MRI allows a good radiologist to note lesions as small as around 1mm...though at that size there may still be some question as to whether what they are seeing is a met, artifact, or a vessel.  However, at 2mm or greater...especially with a history of melanoma...the fact that the lesion is, in fact, a brain met becomes very clear....and VERY TREATABLE!!!!

Please seek a second opinion if your lesions meet this criteria.  I'm very sorry if it is something you have to face, but SRS is very doable and many of us here have done it and are here to tell the tale!!!

Wishing you the best, Celeste

chaoticallypreciselifeloveandmelanoma.blogspot.com

Brent Morris - (2/10/2014 - 7:44pm)

Dear Sal,    Brain mets are scary and rightfully so. There is a lot changing in the treatment of brain mets in melanoma. New ways include SRS which is stereotactic radiosurgery. There are a number of ways to do this. The choice depends on the equipment available and the expertise of the doctor. Waiting for the size of the tumor to get bigger to match the equipment and the skill of the operator is the wrong way to go. The sooner you treat the better, the smaller the better.Metsw as small as 2-3mm are treatable with SRS. This improves the chance of response, reduces the dose of radiation and reduces the risk of complications like bleeding and radiation necrosis. Please seek a second opinion from a bonifide radiation therapist who has experience and is up to date about melanoma.

Systemic treatments also treat brain mets. This includes ipi and the braf inhibitiors (one more reason knowing your BRAF status is important). Once you are at stage 4, your initial profile has little clinical relevance and no bearing on your planning.

                                                                                                                        Brent Morris

BMorris

kylez - (2/10/2014 - 10:06pm)

Hi Sal,

How small are they? Small enough and few in number can still be treated with Gamma Knife. Too much larger (either separately or in total volume) and you may need neurosurgery (I received a single and double craniotomy -- 2010 and 2011). 

The two smallest brain mets I had in 2011 were treated with Gamma Knife alone. They were 6mm and 3mm in size. The 3mm one was probably nearly as small as they were able to detect on their MRI. 

I agree with Karen. If I had been told that (what you were told), and I had known then what I know now, I would also get a 2nd opinion, ideally from a good neurosurgery department or if that is hard to find, a good (possibly large and/or academic) medical center.

Best, Kyle 

Thank you to everyone able to post non-anonymously, it helps add to the sense of community!

Patina - (2/11/2014 - 12:50am)

Hi,

My Mom was diagnosed with melanoma in early November. We found out that she had brain mets the night before Thanksgiving. It was a surprise to everyone. If we had not gotten a 3rd opinion and if he had not looked at her MRI...we would have chosen the wrong treatment. Like others here have done, I urge you to find a melanoma specialist and find another radiologist.

The day she had the gamma knife radiation she had 9 brain mets, up from 3 only 3 weeks before. She had Yervoy 4 days later.

She has responded very well to the Yervoy. She had 18 tumors, some larger that a quarter on her head and one on her neck the size of my thumb. She has only have 2 infusions and we don't know if she will have more because she has colitis. Today, only 3 tumors remain that we can see or feel.

Her doctor thinks she won't need anymire treatment because of her response. She is very lucky and we hope that we will find out Wednesday that the resultss of her brain scan are good.

kylez - (2/11/2014 - 9:06am)

Sal, hope you see Patina's post.

Also a list of the other Gamma Knife locations in the U.S. / North America is one useful list of places to go to ask for a second opinion. See here,

http://www.elekta.com/patients/treatment-information/treatment-centers/leksell-gamma-knife/north-america.html

 

Thank you to everyone able to post non-anonymously, it helps add to the sense of community!