Melanoma in Brain

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4/2/2014 4:53pm
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Replies: 6

Hi,

I am 27 Year old Indian living in Germany. End of Feb 14, I had consulted a Neurologist (due to Headaches). Neurologist happened to see a 1.7 cm lesion in Brain MRI. I was referred to Neurosurgeon, who did a Stereotatic Brain Biopsy (in Mid of March). Biopsy results : Metastatic Melanoma. As of now I am undergoing Radiation Therapy called Brachytherapy.

Last week I also met the Dermatologist. Body examination did not reveal any Melanoma. CT scan of Thorax, Abdomen and Neck has not found any other Metastase. Dermatologist thinks its Melonama in Brain. (According to her, its quite rare.) As i have only headache, Doctor wants me to wait till end of May. (End of May she wants to do : PET - CT scan, MRI for spinal Cord and other Blood tests).

a. Does anyone have information about this type of Melanoma?

b. What do you guys suggest?

1. Should i wait till end of May?
2. Should i consult another Dermatologist?
3. Or was the Biopsy result wrong in the first place?

(My Neurosurgeon and Dermatologist are one among the best doctors in Germany)

POW - (4/2/2014 - 7:03pm)

I seem to recall hearing about at least one other case of melanoma confined to the brain here on the MPIP. There may be others. Even so, it is rare. If you are uncomfortable with the diagnosis, you could always ask for a second opinion on the pathology report. 

Are you going to a melanoma specialty clinic? You may well have some of the best doctors in Germany now, but being Stage IV (which you are) you really should at least have a consultation at a melanoma specialty clinic before you decide on a treatment plan. Things are changing so quickly in the melanoma field that it's difficult for general oncologists to keep up. 

When they biopsied your tumor, did they test it for BRAF or any other mutations? Assuming this brachytherapy works, you will essentially be Stage IV NED (No Evidence of Disease). Many doctors do not order any type of systemic treatment when patients are Stage IV NED because the treatments themselves are so toxic. You need to give the radiation time to work so you would probably want to wait at least 1 month after your radiation treatments before you get a brain MRI. Waiting 2 months after brain radiation is not unusual. If you develop new neurological symptoms, you could discuss getting a follow-up MRI sooner than that. 

 

 

ilikepralinen - (4/3/2014 - 3:25am)

Hello POW,

Thanks a lot for your Reply.

Yes. I have a Appointment coming up. I will ask them once again regarding the Pathology Report.

 

My Dermatologist treats patients who has Melanoma. As of now, I dont know any other Melanoma Speciality Clinic. Thanks for that info. I will try to see if there is something nearby.

 

Yes. They tested for BRAF mutation. Thats how they concluded it is Malignant Melanoma.

( Mutation in BRAF gene : c1799T > A (P. v600e )

 

My Dermatologist wants to wait until the radiation starts working. Morever as i dont have any other Neurological symptoms, she thinks My condition is not that serious.

 

 

 

 

Bubbles - (4/2/2014 - 9:17pm)

Dear ilikepralinen,

Sorry you have been confronted with such a sudden and difficult melanoma presentation.  Unfortunately, melanomas (in a variety of locations) with "no known primary" (as they are called) are NOT uncommon.  Melanoma often metastasizes to the brain and lung...whether you know of the primary lesion or not. I am not an expert on what options are available to you in Germany.  However, there are many systemic treatments for brain mets as well as specific radiologic ones like stereotactic radiation.  In the US we tend to use stereotactic radiation more often than the brachytherapy that you are getting...but I'm not saying one is better or worse than the other.  Additionally, there are certainly treatments available for NED patients.  I had mets removed from my lung (surgically) and my brain (via radiation), was rendered NED and spent 2 1/2 years in an anti-PD1 trial (as did over 30 of my peers) and remain NED today.  Ipi is being studied in that fashion and some physicians in the US are providing it for those patients since it is on the market, though sometimes insurance will not pay for it in that case, because it was not approved as an "adjunct" treatment.  SO....sometimes you have to be in a trial for medications (other than interferon...which has little effect) when you are NED.  Many of those treatments, like anti-PD1, have minimal significant toxicities.

For some general information, here are some links of articles I have posted:

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/01/ipi-and-radiationa-good-combo-for.html   Reports on ipi when combined with radiation on melanoma, and brain mets specifically.

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/02/overview-of-treatments-for-melanoma.html  An overview of treatments for brain mets generally.

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/02/braf-inhibitors-for-melanoma-dabrafenib.html  An overview of BRAF inhibitors in general with specific info about the effect in the brain....therefore, it would be important to know if your tumor is BRAF positive or not, so that you could know if these medication are an option for you should you ever need them.

Wishing you my best.  Celeste

 

 

chaoticallypreciselifeloveandmelanoma.blogspot.com

ilikepralinen - (4/3/2014 - 3:31am)

Hallo Bubbles,

Thanks a lot for your reply and for the link.

I will go through them.

 

ilikepralinen - (6/5/2014 - 1:43pm)

Hello Everyone,

I am bit confused now about this Disease.

Last weeks i got the results of couple of scans.

1.  MRI - Spinal : No Primary Tumor  detected.

2. PET - CT :No Primary Tumor  detected.

3. Blood : No signs of Metastatic Melanoma.

4. MRI - Head - Necrosis has began.

 

As of now, doctors unable to find  a Primary site.

 

Is the Initial Diagnosis wrong ?? (Metastatic Melanoma in Brain).

 

 

My Skin specialist feels that its only there in the brain. Skin specialist wants to wait and see the results of Brachytherapy (Radiation).  As there is lot of side effects with the medication, Skin Specialist wants to begin it only when it is required. (dabrafenib +  trametinib).

 

Has anyone more info on Primary Melanoma in Brain??

Can you detect  Melanoma in Blood?

Does having brown skin influence BRAF V600E test results?

Has anyone used the combination of the following Medicines? (dabrafenib +  trametinib)

Thanks a lot in Advance

 

 

 

RJoeyB - (6/5/2014 - 2:13pm)

A couple of thoughts for you...  I don't have any specific information on a primary melanoma in the brain.  I suppose it's possible or I think there's also a good possibility that it started as microcopic disease at a more common site and then metastasized to the brain, with the microscopic disease still being present or perhaps even being successfully attacked by your immune system without any "help" from any treatment agent.

I don't believe there is a blood test specific to melanoma.  As far as the diagnosis and pathology, there are several markers that are used to test for melanoma.  My understanding is that both MART-1 and HMB-45 are highly specific for melanoma, i.e. they're not going to be present in other kinds of tumors.  And I think S-100 is a protein that is present in all melanocytes (whether normal or malignant).  A positive stain for S-100 isn't itself proof of melanoma, but the presence of melanocytes in tissue where it's not normally found, combined with a positive stain for MART-1 and HMB-45, increases the likelihood.  I recently had a bone tumor resected - according to my orthopedic oncologist, the tumor was almost completely black, which is consisent with the presence of a large concentration of melanocytes, which aren't normall found in the middle of a bone.  During the procedure, they perform a "frozen section", it's a biopsy that is tested during the operation.  This tumor had previously received radiation therapy, so much of it was dead and therefore didn't stain strongly for melanoma.  There was some new tumor growth (which is what lit up on my PET scan and is why I had the surgery), however, and in the "permanent section", the biopsy tested after the operation, some of the samples tested for MART-1 and S-100 (as I understand it at least).  Again, S-100 wouldn't necessarily be cause for alarm, except that this was for tissue in the bone, where you wouldn't expect to find a concentration of melanocytes.

Finally, and this was something that just came up in conversation within the past few months with my medical oncologist and is my understanding of what he mentioned.  Mutated BRAF itself isn't a marker for melanoma.  They believe that a significant percentage of the population who have a large number of moles or dysplastic nevi, most of whom will never develop melanoma, would test positive for a mutated BRAF gene.  The mutated BRAF can then be used as a target for the BRAF inhibitors (vemurafenib, tafinlar), but by itself isn't a test for melanoma - just like a large number of moles or dysplastic nevi isn't a test for melanoma.

I hope that helps.  I would certainly suggest talking with your doctor specifically about your pathology report and ask for an easy-to-understand explanation.  If you're not comfortable with the explanation, seek a second opinion, if only to find someone who can explain it in a way that helps you understand.