Newly Diagnosed - Brain Mets

lovingwifedeb

I always look forward to a fresh start, a new year, but 2011 had its own plan for my husband and I. My husband had his first retesting last week since his surgery in July - removal of tumor in groin/leg area and 18 lymph nodes that all tested negative (missing primary). Last week a physical, blood workup, and another PET scan, MRI - Results? He graduated from stage 3 to 4... with a tumor showing up in his brain. No other mets in his body though, looks like the melanoma decided to cross the blood/brain barrier and find another place to nest.

For the last couple of weeks my husband has noticed a difficulty in speaking, trying to get his words to work properly. We have always had difficulty in the communication department but it has been a little odd lately I have noticed but nothing to be alarmed about. Under the stress of looking forward to retesting and Christmas we both thought it was just the pressure but I guess it was more than that. Monday we have an appointment with a neurologist to determine the next step...

Looking up information on the internet scared the crap out of me, frightened my husband, so with breaking hearts and restless souls we wait.

I would appreciate some positive experiences for him to read if anyone out there has any to share.

Thank you,

Deb
lovingwife to Bob, newly diagnosed stage 4

klly0613

Hello
Deb,

I am so sorry to hear about your situation. I am having a similar situation, my mother was diagnosed this August and it turned out world upside down. I never imagined that I could lose my mother while still in my early 20s. She has multiple brain mets, three lung mets, one liver and multiple sub q's. I wish i would have found a site like this when she first got diagnosed as you have. My mom just began having difficulty finding the words while communicating as well and is frustrating her. The one thing that I have found to help is to educate myself and develop a plan of action.

She had whole brain radiation for 15 treatments followed by 2 rounds of chemo. With those failing she is on a compassionate use of Ipilimumab. And now i am researching other options. You have to be your own advocate and demand the treatments that you feel are the best options. Research clinical trials in that they are really the only promising things for melanoma at this time. Because he has brain mets alot of the trials he will not qualify for (EXTREMELY FRUSTRATING I KNOW) I know that I am far from an expert but I have done my fair share of research and somedays feel more qualified to treat my mother. I would recommend looking into radio-surgery to shrink that mets in the brain, they can only use it on about three or more mets that are relatively small in size, but is an outpatient procedure and only a one time thing that seems to be very effective for metastatic melanoma. They also just recently opened up a clinical of plx4032 specifically for melanoma brain mets!!!!!! Another option is also the ipi drug on compassionate use...you need to fail at some other treatment first but this drug does cross the brain blood barrier.

sorry to be rambling but i wish i had someone to help me. I will be praying for you and your husband. Enjoy every day....we all have an expiration date.

Kelly
Daugther of Lynda, Stage 4

lovingwifedeb

klly0613 said:

Hello
Deb,

I am so sorry to hear about your situation. I am having a similar situation, my mother was diagnosed this August and it turned out world upside down. I never imagined that I could lose my mother while still in my early 20s. She has multiple brain mets, three lung mets, one liver and multiple sub q's. I wish i would have found a site like this when she first got diagnosed as you have. My mom just began having difficulty finding the words while communicating as well and is frustrating her. The one thing that I have found to help is to educate myself and develop a plan of action.

She had whole brain radiation for 15 treatments followed by 2 rounds of chemo. With those failing she is on a compassionate use of Ipilimumab. And now i am researching other options. You have to be your own advocate and demand the treatments that you feel are the best options. Research clinical trials in that they are really the only promising things for melanoma at this time. Because he has brain mets alot of the trials he will not qualify for (EXTREMELY FRUSTRATING I KNOW) I know that I am far from an expert but I have done my fair share of research and somedays feel more qualified to treat my mother. I would recommend looking into radio-surgery to shrink that mets in the brain, they can only use it on about three or more mets that are relatively small in size, but is an outpatient procedure and only a one time thing that seems to be very effective for metastatic melanoma. They also just recently opened up a clinical of plx4032 specifically for melanoma brain mets!!!!!! Another option is also the ipi drug on compassionate use...you need to fail at some other treatment first but this drug does cross the brain blood barrier.

sorry to be rambling but i wish i had someone to help me. I will be praying for you and your husband. Enjoy every day....we all have an expiration date.

Kelly
Daugther of Lynda, Stage 4

Kelly - Similar Stories
Thank you for the information, I will pass your information on to my husband. I am very sorry about your mom, I know I am learning way more than I ever wanted to know about cancer.

My mom also has a tumor in her lung but refuses treatment... I've accepted her choice. She is on one of those air machines at home and still lives by herself. Although she has signed a DNR paper I'm sure it won't be long and my brothers and I will have to face the fact that she will not be able to take care of herself soon. It's all too much to grasp a hold of... mom and husband... some days are overwhelming.

You are very young to experience this yourself, it will color your world in a big way. I know there are several people on this site that are experiencing such heart wrenching stories so I try to keep my world in perspective. My heart aches but there are others whose hearts are aching more.

My only advice as a mother is to share thoughts and feelings as a daughter can.

Peace to you and your family.

Deb
lovingwife to Bob, stage 4

Grady Lewis

Brain & Lung Melanoma.
Dear Kelly- I have had multiple lung spots - largest 3 around 1 cm, that have been at least stable for 4 mths. with taxol/carboplatin/avistan. 1 1/2 wks. ago had new MRI- now have multiple brain involvement. I started SRS (gamma/cyber/novalis- knife) friday. will do WBRad too i suppose.
You mention a B-RAF "Clinical" that would be available for me- even with brain tumors at time? IF so could you Please tell me where??
I know i can get into an IPI compassionate use, but would sure like to know if a B-RAF (PLX 4032) IS actually 'OBtainable".
I am positive. ANY help would be greatly appreciated. If I can help you in anyway, please ask!
Love, Grady, Bonita, & Family.