Mucosal Melanoma

Hi,

 My husband is also going through treatment for mucosal melanoma. He was diagnosed in june of 06. He had two surgerys to remove melanoma from his sinus and then had 5 radical radiation treatments. The monster staayed dormant until November o7 when it was found in his lymph nodes. Again surgery to remove nodes and he just finished 30 doses of radiation.

 They have not offered him any chemo as they say there isn't any proven to help.

He is being treated at Dana Farber and at rhode Island Hosp. Cancer center.

The main thing we have found is to keep up on scans! We found his recurrence quite by accident! He was scheduled for a pet scan in Jan. 08 but I had seen a news report about knee pain may be a sign of lung cancer. My husband had been complaining of knee pain for over a week so I asked his Doctor's to move up the scan which ultimatly found the cancer was back.

 I know the frustration you must be going through as there is so little info out there.

 I have been researching "natural" remedies and have my husband on a few different things.

My prayers are with you and if you woluld like any info please contact me

Susan

On 2/19/2008 minrose wrote:

Rare type of cancer in the nose, please provide any treatment information of studies. tried Sutent, made me violently ill, has anyone been in this study?

Hi there,

My tumor was in the mouth (upper right gingiva), a sliver of dark tissue which turned out to be mucosal melanoma. I underwent a surgery to remove the primary tumor and 1.5 cms around it (basically 40% of my upper jaw and roof of mouth) followed by 4 weeks of neutron radiation to my upper jaw. Its been only 7 months since the discovery so cant say much about the effectiveness of the treatment. I don't think I've heard of Sutent and my doctors did not mention that as an option for me.

 Good luck and stay strong!

On 3/6/2008 memzio111 wrote:

Hi,

 My husband is also going through treatment for mucosal melanoma. He was diagnosed in june of 06. He had two surgerys to remove melanoma from his sinus and then had 5 radical radiation treatments. The monster staayed dormant until November o7 when it was found in his lymph nodes. Again surgery to remove nodes and he just finished 30 doses of radiation.

 They have not offered him any chemo as they say there isn't any proven to help.

He is being treated at Dana Farber and at rhode Island Hosp. Cancer center.

The main thing we have found is to keep up on scans! We found his recurrence quite by accident! He was scheduled for a pet scan in Jan. 08 but I had seen a news report about knee pain may be a sign of lung cancer. My husband had been complaining of knee pain for over a week so I asked his Doctor's to move up the scan which ultimatly found the cancer was back.

 I know the frustration you must be going through as there is so little info out there.

 I have been researching "natural" remedies and have my husband on a few different things.

My prayers are with you and if you woluld like any info please contact me

Susan

Hi Susan,

I am a cancer patient with mucosal melanoma too. I started in 2004 with it in my lymph gland with no primary source. I had bio-chemo and dissection node surgery of my neck in  2004-2005.

I went until 2007 and with ongoing bloody noses and I had major concerns. My ENT surgeorn did not do a biospy and led me to a 2nd opinion. I had the melonma return which was mucasol melanoma in my sinus' which was plain out missed. I have received bio-chemo again (which I feel kept my cancer from spreading the 1st time, and now radiation etc.) I head to MDACC this April for complete scans going on my 3rd month again.

If there is anything I can do to help your husband, I feel very confidant in the doctors I now have treating me.

I told my husband about 6 months ago that is seems harder for the spouses and caregivers sometimes then it is the patient. Please give me best to your husband and tell him to hang in there. It's not an easy road.

Keep your spirits up for your husband. I'm sure that is what keeps him going.

Chris