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Metastatic malignant melanoma

jessicarhodes's picture
jessicarhodes
Posts: 15
Joined: Mar 2011

Metastatic malignant melanoma is what I have. I've put info about it on my page I guess you can click and go to it? I'm just hoping to find others who can share their experiences with me. And I can share with you. Maybe help one another?

Ladyjo's picture
Ladyjo
Posts: 8
Joined: Nov 2010

Jessica, I found no link to get to your page so I don't know the details of your diagnosis. I was diagnosed with metastatic melanoma stage IV in November 2010 and have undergone 6 infusions of taxol & carbo with no good results. It was in my spleen, liver, my lymph system and then travelled to my spine and 4 lesions on my brain. I just finished radiation on 5/9. Had 20 treatements for back and brain. If the brain lesions disappear or lessen, I can get into a program for a clinical trial for a drug called PLX4032. Please check with the University of PA as they are the hospital conducting the trial and they have had fantastic results. I'm just hoping I can get into it.

thomasman
Posts: 20
Joined: May 2011

i was diagnosed in may 2006. had a mole on my back that i let go too long and the melanoma got into the lymph nodes under my left arm ( i think it was 9 of 23 were positive, found out after surgery) so they removed them all and a wide area excision at the same time. interfuron in a clinical trial was stopped due to recurrance under my arm and on my back, so back to surgery. a PET scan about 2 months later showed the melanoma was in transit subcutaneously across my left collar bone and i had 9 tumors subcutaneously on my back. IL-2 knocked out all but 3 tumors on my back, which were surgically removed. the melanoma got into the bone of the t-6 vertabrae and was determined that they were going to remove the part of the vertabrae that was cancerous and go from there. that was 2 years ago. my last PEt scan was 2 weeks ago and it showed up all clear! the first time in 5 years! the main thing that has gotten me through it all is God. without Him, i woulda went crazier!!LOL

boot2aboot
Posts: 2
Joined: Apr 2011

thomasman,
i am GLAD to hear you have conquered your bone mets....just got a pet scan today and they think the mel is in my T3 and hip...i am hoping for arthritis...i was just diagnosed in april and haven't even started treatment yet...the treatment i chose? biochemotherapy-wicked but short....i am glad to hear someone is doing ok with bone mets

thomasman
Posts: 20
Joined: May 2011

which biochemo? yes the IL-2 was very hard on me, but it was only for 3 weeks ( one week, 3 TID for 5 days, a week off, then another week and done). i had a 2nd round of IL-2 in june 2007 that had to be stopped on the 3rd day. my vitals dropped off and everythig went haywire. my intestines had swelled to the point that they almost burst, b.p. dropped to 76/43, heart rate of 265, and, after they got me straightened out, my oncologist said that the blood vessels in my body had constricted. but, by the grace of God and the awesome staff on hand, i got through it. i have lasting side effects from it ( my skin is quite sensitive to hot and cold, by bowels are a bit goofed up, and i can get exhausted at the drop of a pin), but it was all worth it. i found that it was, and is, a one day at a time life.
when going through the 1st round of IL-2, i got tired of it on the 3rd day. ready to give up. my oncologist came in and listened to me and siad," well, why not do it one day at a time? and if necessary we will do it one treatment at a time?" even though i work at living in today, that was a great reminder and thats what i did. i did make a LOT of phone calls to my friends that had to keep reminding me ODAAT, and i saw i was even narrowing it down to one phone call at a time.
keep in touch, boot2aboot. let us all know what is goin on through it. the chatroom is a great place. some pretty zany, crazy, cancer fighters there, but when someone shows up with a serious issue and needs support, they all get on the support bandwagon. Bless you and keep God close.

Zod66's picture
Zod66
Posts: 28
Joined: May 2008

Just letting you know there is another survivor out here. Click on the name under the photo; should take you to my profile where most of my story is.

furkidsmom's picture
furkidsmom
Posts: 11
Joined: Jun 2011

Hi I was dx'ed with metastatic melanoma with no known primary last month and am going in for Radical Neck Dissection next week then from what the tentative plan is Interferon and radiation. I am not sure what to expect, tried to find info on the head and neck site and someone directed me here. I guess as things go I am lucky as the PET scan showed it no where else. TheDr.'s are baffled as there is sign of where it started. I have been told that although not unheard of it isn't that common. It started in a lymph node on the right side of my neck which they removed most of in a lumpectomy a couple of weeks ago. I don't have much info, being as I am at the beginning of this adventure & I am somewhat unsure of what I am going into. I just know that I have to take it one step at a time. But if there are others here who have gone through this and have any suggestions, or can share their experiences I would appreciate it. I would be happy to share mine also.

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