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Malignant Melanoma

bnlarsen
Posts: 2
Joined: Jan 2009

I'd like to communicate with folks that have had: wide & local surgery; Adjuvant Interferon - 1 month 5Xwk high dose IV, followed by 11 month 3X wk injection. I'm a "Clark Level IIBT4a"

wseward
Posts: 3
Joined: Feb 2009

In Nov. I had surgery on my left chest for melanoma. Also, one lymph node was removed. The Dr. felt there was no further need for testing. I feel at least I should have had a ct scan or pet. The only test was a lymphoscintography prior to the surgery. The lab diagnosis was stage 2 or pT2bNOMX. I still have a great deal of swelling under my arm and around the surgery.

hollyberry's picture
hollyberry
Posts: 176
Joined: Nov 2008

I have been battling this beast for 18 months now and the docs didn't think I would make it this far.
I went through the excisions (4 in rectal area) and interferon; the cancer then metastasized to multiple sites and organs. I was put on Carboplatin, Pacltaxel and Avastin. This kept me stable for 7 months but caused some wicked side-effects, including neuropathy in the feet and legs that may never go away.
Now, I am in a clinical trial of Gleevec (4 pills, once a day) and am having some early success. I haven't had my second CT or MRI yet, but my palpable tumors have shrunk considerably. I had one on my chest wall that was the size of an apricot and is now the size of a mosquito bite- not bad!!
I had to have genetic testing of my tumor to see if I qualified for this trial and I was a match. It seems you have to have the C-kit protein mutation to try the gleevec. It is something worth asking your docs about. They are having some amazing early results, so far. A 79 year old woman had multiple mets and at 9 months had many shrink and the rest are stable; this is the first drug to actually push melanoma into remission. I am very hopeful about my case and would just urge all of you to at least ask about it.Like I said, not everyone will match, but if you do it could bring dramatic results.
Dana-farber and Harvard are running this study and you can get more info from the dana- farber site.
Best to all,
Hollyberry

zonabaseball
Posts: 1
Joined: Apr 2009

I read your "about me" page, thank you very much for sharing your cancer diagnosis and treatment experience. I will pray that the cancer treatment (Gleevec) does indeed put your cancer in remission. You are so brave to share you story. You also sound very strong and have the loving support of a great family.

I was diagnosed with a malignant melanoma in October 2008. I am fair complected and a strawberry blonde with lots of displastic nevi all over my body. I have been diligent about my skin care and have been seeing a dermatologist since I was 14 years old. Unfortunately, even though I have consistently screened and payed very close attention to my skin most of my life, I did finally get that dreaded diagnosis. So far I am very fortunate, it was less than 1mm in thickness on the breslow scale and a class III on the Clark scale. It was not an ulcerated tumor either. I have seen an oncologist and I have already had two full body exams since my diagnosis. So far, the cancer has not re-occurred anywhere inside my body or on my skin.

But I still fear that re-occurrance and I am finding that I have a very hard time dealing with that fact.

So, I came here tonight. I am very glad I did, because you, hollyberry, are a true survivor and I really appreciate reading your story. I hate to say it, but I was taking life for granted before my diagnosis. Now, I am just trying to live each day with new appreciation.

Take care of yourself and I wish you the best possible outcome.

Sincerely,

Zonabaseball

hollyberry's picture
hollyberry
Posts: 176
Joined: Nov 2008

Zonabaseball,
Thanks for the kind words; it really does help to have a support system and this is one of the best you will find. I'm so glad that they got your melanoma early and you are so far "clean". Be ever-vigilant with those nevi; I ,too, am a redhead with fair skin. I also have blue eyes, which ups the chances of having a genetic predisposition to mucosal melanoma. I wore SPF 50 when outdoors and was always the one looking for the shady spots, but I got the nodule in a place where the sun don't shine, if you know what I mean. It is still important to stay on top of every change, though, and I try my best.
There have been quite a few people who, when they heard my diagnosis, said " it's only skin cancer. what's the big deal?" Some people don't understand how deadly melanoma can be and I would advise you not to let that get to you. It's not a cancer that most people are familiar with and it's really up to you whether or not you want to educate them or just let it go. I don't let other people's ignorance of this disease bother me. Hopefully,by the time they do understand it, there will be a cure.
I wish you all the best and thank you for your kindness. Please remain vigilant about your other moles and even if you just "feel" something isn't right, get it checked. My appointment after surgery was for 6 months and I'm so glad that I didn't wait that long to go back or I don't think anything would have helped by then. So trust your gut, go to the dermatologist whenever you see changes; even if your o.k., at least you will know for sure.
Be well, Zonabaseball!!
Much love,
Hollyberry

JR1949
Posts: 230
Joined: Jun 2009

Hi, Zonabaseball & Hollyberry,
I confess when my wife, a redhead and fair skin, was diagnosed with melanoma (skin cancer) in 1991, I too did not realize how serious it was until she told me what the oncologist told her. My wife and I can also vouch for early detection of any mole or unusual "thing" on your skin. She had a small mole no larger than a pencil eraser which was removed by dermatologist. Biopsy revealed malignant. 1 inch area around mole was excised and lymph nodes from her ear to her chin were removed. She faithfully returned for followup visits and was cancer free until June 2009, 18 years later. She had tumors on her trachea, lungs and behind her lung that were melanoma stage 4. Doctors tell us it is very rare for melanoma to return after such a time period. She is currently undergoing chemotherapy with interlukin 2 (IL2). To date she has had 2 rounds of chemo therapy of the IL2 which is administered intravenously for 5 days, 3 times a day every 8 hours. CT scan is scheduled for October. Hopefully by the grace of God we will get a good report that chemo is working and reducing the tumors.
Keep a positive attitude,
JR1949

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