Mucosa Melanoma

Hi Maria,

 I am so sorry I have not checked this site for awhile.. as you know these are trying times!  My husband went through 6 weeks, twice a week with very high doses of radiation. He is finally becoming his "ol self" as it takes time to leave the system.  The dr's say there is no chemo that will help, so they don't plan on any.

  He is being treated between Rhode Island hospital Cancer center in Providence, RI and Dana farber in boston. No one ever has any direct answers, and unfortunatly being so rare, not many options. He will have a new pet scan done in Feb. and all we can do is wait.

  We have taken to living each day to it's fullest and lots of prayers. I have him drinking pomegranite juice dailey, I am using cumin and lots of garlic while cooking and any and all veggies known to be "good for you", not much else I can do!

  I hope this finds you and your husband fairing well. If I come across anything I will be sure to pass it on.

 May God Bless and Keep You

Susan

I was diagnosed with mucosal melanoma (vaginal) in December. I have made 2 trips to MD Anderson, Houston for surgery. In 2 weeks, I start radiation. In my case, the doctors felt they needed to eradicate the tumor and get a 'clear margin', hence the need for the 2nd surgery. I was prepared for the radiation during the last surgery by having platnium beads implanted into the vaginal area. I have a great trust in the doctors at MD Anderson. Once radiation is completed (5 treatments in 2.5 wks), I will again consult with the melanoma doctor to discuss chemo. It is my understanding that melanoma does not respond well to radiation and chemo alone, but these are means to kill off the cancer cells. Keep a positive outlook and surround yourself with family and friends who support you. Do not allow any negative people around you or the cancer survivor. It's time to fight and fight HARD! This cancer is so rare that little information is out there. While at MD Anderson, my primary physician said that the odds had more than doubled since the last publication. I plan on beating the odds! I was reading one of the books Richard Block (H&R Block) wrote. He mentioned using the National Cancer Institute" website or phone 1-800-4-CANCER and ask for a PDQ. They may be able to give you some answers. Each cancer is different and each patient is different.

 

On 3/11/2006 Esther49 wrote:

I was diagnosed with malignant melanoma of the nasal cavity last fall and had surgery to remove the tumor in early October. There was no lymph node involvement and no cancer elsewhere. Surgery was followed by six weeks of radiation. A PET/CT scan two weeks ago showed that my system was clean, but now I need to determine if there's any followup treatment that makes sense. I've already decided that Interferon is too toxic but am considering GM-CSF, which isn't FDA approved for this condition. Because this type of melanoma is so rare, there is no proven treatment for it and there don't seem to be any clinical trials going on because there simply aren't enough people for the trial. What treatment has been recommended for your husband? And where is or was the melanoma located?

 

I have the cancer, not my husband. My pattern is the same is yours--it just happened in 2005 not 2006. Tumor removal in October, followed by 6 weeks of radiation, followed by GM-CSF. (I thought interferon was way too toxic, too.) No side effects from GM-CSF but it also didn't help, I guess, because I needed a modified neck dissection in August 2005 to remove melanoma in lymph nodes on both sides of my neck. The melanoma moved to right sinus six weeks later, followed by two more surgeries. PET scan in February showed two more (small) tumors--one above my collarbone, one in my right sphenoid sinus. I'm currently part of a National Cancer Institute clinical trial of carbo/taxol with placebo or carbo/taxol with sorafenib. Based on some nasty side effects, I believe (and my oncologist believes) that I'm on the sorafenib. He has had good results with two patients who are just on carbo/taxol and I think I'm benefiting from something because drainage is way down, I'm breathing easier and sleeping better. My oncologist also is participating in two other clinical trials through the Hubert Humphrey Cancer Center in Minneapolis, where I'm based. Worth checking out. I recovered well from all my surgeries and really have led my life pretty normally for the past two years until the side effects from the chemo. I'm just in the second cycle now though and my meds have been reduced, so hopefully the rebalancing will help in terms of the debilitating effects. The clinical trials are mostly aimed toward skin melanoma because there are so few of us with mucosal melanoma, but there seems to be some hope that the meds will apply to us, too. I'm somewhat hopeful. If this doesn't work, there are a few other options, like Temodar.

Sorry if my previous message may be confusing and repetitive....I was replying to a private message not shown here with a case similar to mine, but some of my followup to my own case might help someone else. There are actually some rather promising clinical trials happening.

 

On 4/7/2007 Esther49 wrote:

Sorry if my previous message may be confusing and repetitive....I was replying to a private message not shown here with a case similar to mine, but some of my followup to my own case might help someone else. There are actually some rather promising clinical trials happening.

 

My brother was diagnosed with mucosal melanoma in 2000, which started as a sore in his septum.  He had surgery to remove the septum, with radiation to follow.  It eventually came back in is lymph notes on his right side, wherein he had some resection.  Came back again, and had a more radical surgery, removing more lymph notes and a muscle into his shoulder.

 He was on Interferon at one time, and then was on interleukine (sp?) injections, which he now can't get due to a recall.

 In February, he developed a tumor in his right sinus, thus having to remove his right eye, cheek, and part of his upper palate.  He had reconstructive surgery by removing a stomach muscle to rebuild his cheek, and skin to rebuild is palate, with a vein removed from his leg for blood flow.  That surgery took place on February 20.  The surgery was unsuccesful, and my brother had to have the muscle removed.  The plastic surgeons tried it again by rebuilding his cheek with muscle from his arm, skin graft, from his leg.  It is successful and he's doing well.

 We now are looking at other treatments and don't know where to go.  We are located in Minnesota.  My brother is currently 46 years old, and has been living with this awful mess for more than 8 years.  Longer than expected.  But, he's been through a lot.  Looking for any ideas.

 

On 4/7/2007 Esther49 wrote:

Sorry if my previous message may be confusing and repetitive....I was replying to a private message not shown here with a case similar to mine, but some of my followup to my own case might help someone else. There are actually some rather promising clinical trials happening.

KScott,

I admire your brother's courage, I certainly would not have had the extensive surgery he had.  I am not taking any treatment, I do have a fairly large lympth node on the right side, as well as slow growth of the Mucosal Melanoma.  I refused radiation, and the study I was in (Sutent) made me very ill, so I stopped taking it.  I follow a healthy diet, and my appetite has returned, and I can function and perform household tasks, like laundry shopping, preparing meals and getting out in the car as much as possible. I will e 79 on 4/9, so I feel I have lived a good life and have many good memories, so whatever will be will be.  It has spread to the liver, but so far no pain or symptoms of that.

Is the Mayo Clinic a place to go and seek a 2nd opinion?  Not many people have this rare form of cancer, so it is difficult to make comparisons. All my treatment is at Mass General Hospital in Boston.  They have a Melanoma clinic there at the Yorke Center, which is well funded.  Please keep in touch I send my prayers and admiration to your brother for his courage. Jonesey