I'm Looking For Survivors

My brother has recurrent melanoma.  I'm desperate to find survivors who can help me help my brother.  It's in his spine and lungs.  One of his nurses told us to find others who have survived and see what they have done for treatment.  If anyone has any information, please share it with me.  He is a 43 year old firefighter, and very much loved.

Thank you 

 

I posted you a private reply.

On 1/25/2008 Shibumy wrote:

My brother has recurrent melanoma.  I'm desperate to find survivors who can help me help my brother.  It's in his spine and lungs.  One of his nurses told us to find others who have survived and see what they have done for treatment.  If anyone has any information, please share it with me.  He is a 43 year old firefighter, and very much loved.

Thank you 

 

 

Hi,

 

There are many survivors out there.  A great resource for anyone seeking information about melanoma is the melanoma patient's information page (MPIP) - more specific for melanoma.  Is your brother working with a melanoma specialist (versus a general oncologist).  That seems like an important step.  My wife is stage recurrent metastatic melanoma.  She did interlukein-2 and is currently on carbo/paclitaxel/avastin.  

 

I know this may sound cliche, but don't give up hope and take things one day at a time.  There are many success stories, although the road in front of your brother may be a long one.

 

 

 

On 1/26/2008 Hope4u wrote:

Hi,

 

There are many survivors out there.  A great resource for anyone seeking information about melanoma is the melanoma patient's information page (MPIP) - more specific for melanoma.  Is your brother working with a melanoma specialist (versus a general oncologist).  That seems like an important step.  My wife is stage recurrent metastatic melanoma.  She did interlukein-2 and is currently on carbo/paclitaxel/avastin.  

 

I know this may sound cliche, but don't give up hope and take things one day at a time.  There are many success stories, although the road in front of your brother may be a long one.

 

 

Thank you so much.  I'm so confused and there is so much information out there.  When you say the MPIP, do you mean on this site?  Tim is with Group Health, which is a mixed blessing.  Lots of red tape, and some extremely poor case management, such as lost films, long delays, and multiple Doctors.  He was immediately referred to the University of Washington for the interlukein treatment when a routine xray of his lungs showed possible cancer, but when he met with the team, they had just received the results of his first lung biopsy from Virginia Mason (which took over a month), who provided the diagnosis that it wasn't melanoma.  At that point, U of W had to step out since he was referred based on Tim having a recurrent melanoma.  By the time Group Health scheduled the second biopsy (which also, according to Virginia Mason and or Group Health, came back inconclusive), the cancer had spread to his spine.  He's been in such extreme pain that they decided to focus their treatment effort on radiating his spine.  Meanwhile, we have no idea how widespread the cancer is.  We know the odds, and they are extremely poor for Tim, but we are not going to give up.  Tim is too sick now for the interlukein, and we need a miracle.  Thank you so much for your kind words and quick response.  I feel as if the clock is ticking at warp speed and that we are missing something that might save Tim.  God bless  you.

Shawn

tI'm not an expert - but I believe it is vitally important that you see a melanoma speialist at a major teaching or National Cancer Institute-certified hospital as soon as possible,  Your brother's primary doctor should be coordinating his care and making sure it happens. Go even if you can't get insurance approval or if it takes a long time - your brother may need to sign some forms but the approval process can take place retroactively - finances can always be worked out, the important thing now is to save his life!  Don't settle for second best; he needs immediate help now.  God bless - I'll be thinking of you.

 

On 1/29/2008 KerrySH wrote:

tI'm not an expert - but I believe it is vitally important that you see a melanoma speialist at a major teaching or National Cancer Institute-certified hospital as soon as possible,  Your brother's primary doctor should be coordinating his care and making sure it happens. Go even if you can't get insurance approval or if it takes a long time - your brother may need to sign some forms but the approval process can take place retroactively - finances can always be worked out, the important thing now is to save his life!  Don't settle for second best; he needs immediate help now.  God bless - I'll be thinking of you.

I've had malignant melanoma of the nasal cavity (mucosal melanoma) since August 2005 and am still around after six surgeries, radiation and participation in a clinical trial. The trial consisted of 8 months of carbopaxil/taxol/sorafenib every three weeks for several hours. I'm been on just the sorafenib (Nexavar) for the past three months. (It's possible I'm on a placebo in the trial but not likely based on the side effects I've experienced.My oncologist is sure I'm on the real thing.) My cancer has been pretty much in a holding pattern since March of last year, when the trial started, so that's a definite plus.

 

I was diagnosed with mucosal melanoma Dec '06. Tumor was on the vagina. Immediately went to MD Anderson Cancer Center in Houston. Surgery and radiation worked. 7 months later, cancer had metastasized to liver and lung. Chemo was Cisplatin, Temador and Nexavar. After 2 treatments, this didn't work so I was switched to Cisplatin, Temador and Gleevic. Still no success. I am now in a clinical trial using Ipilimumab. I have started and travel to Houston every 3 weeks for treatment. I won't know if it's working until May. MD Anderson is the best. Other cancer centers are Ketterling-Sloan in New York and Mayo's in Minnesota.

 

On 1/25/2008 Shibumy wrote:

My brother has recurrent melanoma.  I'm desperate to find survivors who can help me help my brother.  It's in his spine and lungs.  One of his nurses told us to find others who have survived and see what they have done for treatment.  If anyone has any information, please share it with me.  He is a 43 year old firefighter, and very much loved.

Thank you 

 

In December of 1999 I was diagnosed with melanoma. It had spread to 1/10th of one lymph node and I began injecting Interferon into my body January of 2000. By September 2000 the cancer had spread thru my lymph system and masses were found in my lungs and lower abdomen. I was then diagnosed with Clark Stage IV metastasized melanoma. My oncologist, Dr. Guillani at Kaiser in Riverside California, prescribed a bio-chemo cocktail (the mix I do not remember). I do remember going into ICU and having this dripped into my body for 8 hours with a 4 hour break. This was done 17 times. I went home for 2 weeks and then did it again. My body could only take 2 treatments the second visit. This cycle was repeated 6 times. By the end of 2001 I weighed 130 lbs. and stood 6' 4'', when I could stand up that is. I was given the same statistics your brother has been given. Many things have happened since that time...to many to write in this response. The short version is I am still here and not as a survivor but as an over-comer. I would be blessed if you would contact me so that we could encourage each other. I can be reached at

--Message edited by CancerCompass staff. For personal protection, phone number removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html--

. May you receive all of the blessings God has prepared for you.

In HIS care,

Vaughn J

 

On 2/8/2008 Cheech wrote:

I was diagnosed with mucosal melanoma Dec '06. Tumor was on the vagina. Immediately went to MD Anderson Cancer Center in Houston. Surgery and radiation worked. 7 months later, cancer had metastasized to liver and lung. Chemo was Cisplatin, Temador and Nexavar. After 2 treatments, this didn't work so I was switched to Cisplatin, Temador and Gleevic. Still no success. I am now in a clinical trial using Ipilimumab. I have started and travel to Houston every 3 weeks for treatment. I won't know if it's working until May. MD Anderson is the best. Other cancer centers are Ketterling-Sloan in New York and Mayo's in Minnesota.

My aunt (at age 60) was diagnosed with vaginal mucosal melanoma in Dec, 2005 at which time the mass was removed.  She then had an additonal surgery to remove more tissue around the original tumor site.  She began taking Interferon (5 days/week for 4 weeks - followed with 3 days/week for 8 months).  In October, 2006 the disease had metastized to the liver.  She was put on Temador from Jan 07 to Apr 07.  The next scan in Apr 07 showed the disease had spread to her lungs and the original tumors had increased.  She began taking Taxol and Avastin in May 07 and the tumors were decreasing.  She was on Taxol and Avastin from May 07 to Apr 08.  The April 08 scan showed the Taxol and Avastin was not decreasing the tumors anymore.  She was then put on Carboplatin and had 2 treatments.  The Carboplatin caused a severe decline in her platelets, resulting in 2-3 platelet transfusions.  Her WBC and hemoglobin suffered as well.  She missed treatments due to the side effects.  Her last scan was June 26, 2008 and her tumors had increased.  She has now been prescribed Gleevec, but the doctor doesn't seem to think it will work.  We contacted MD Anderson after she was diagnosed, they reviewed her medical records and said she was receiving the best care at UAB-Birmingham.  Therefore, there was no need for her to be seen at MD Anderson.  Any new info you can share?  Our prayers are with you.