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melanoma

maryalyce
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Does anyone reading this web site have melanoma? Mary Alyce

Explore topics in this discussion:

Cancer Surgery Chemotherapy Pain Melanoma Aspirin Polymyositis Diarrhea Skin cancer

31 replies

JUDYB1

I was diagnosed with melanoma in 1977 and again in 1999 (metastasized to the brain). I have been NED since 2000. It is nice to talk to someone with the same type of cancer. Please continue to write. If you would like to write to me on home email-------------
lilsadiejgb@aol.com.

Bri102285

I was diagnosed in March 2007 with Stage 3 Melanoma, in July I started Interferon, and then in April of 08 I noticed a tumor, so I had it biopsied.. and the Melanoma had reoccured. I just had my 3rd surgery.. skin graft and all..

CherylD

My son (36) was diagnosed with invasive melanoma in May. It was located on the side of his face and removed by MOHS procedure. At the time, the dermatologist/surgeon/cosmetic surgeon said she would not do the sentinel node biopsy and recommended an oncologist. We saw him the beginning of June. He did recommend the sentinel node biopsy. We are supposed to see another specialist in the beginning of July. His was Clark IV or greater and a 1.50mm or greater Breslow depth. At this point, we do not know if it invaded the lymph system which is why they want to do the node biopsy. Unfortunately, he has no insurance. The doctors have said he is in the lower intermediate level of this and given him the 13 to 20 % chance of it having invaded elsewhere. I've been scouting the web for persons who have been treated or are in treatment and don't see much out there. Thanks for posting and how is everyone here doing??

maryalyce

Hi, I lost half my nose, but found an excellent surgeon in Chicago, Dr. Gary Burget. I took interferon, then took GMCSF injections 2 weeks a month for 5 years and Temodar capsules...a chemo for brain cancer for 5 years. All this was to stave off a return. I am now finding premelanomas on my skin, but am getting them cut out. Hope you are ok. Mary

CherylD

Sounds like you have gone through a lot but are doing well. Good. We have an appt with a melanoma specialist in a few weeks and we'll see what he recommends for my son which I guess depends on the initial biopsy results. Thanks for posting.

ualgal

I am a stage 4 I go in next Monday for a treatment called IL-2

Lisa

REDTOYOU

WOW, YOU ARE ALL DOING SO MANY DIFFERENT THINGS. HERE I AM IN TREATMENT IN NY AT MEMORIAL SLOAN KETTERING FOR MY STAGE IV METASTATIC MELANOMA THAT HAS NOT MOVED SINCE MY ORIGINAL DIAGNOSIS BACK IN MARCH 2007. I HAVE "MANY" TUMORS IN BOTH LUNGS AND ONE ON MY PANCREAS. MY "c" HASN'T CHANGED ONE BIT. THOUGHT LIFE WAS OVER AFTER THE GRIM OUTLOOK GIVEN TO ME BY A FEW DRS. AND BY THE STATISTICS THAT ARE EVERYWHERE YOU LOOK ON THE WEB, BUT I TOOK ONE LOOK AT MY THREE GREAT KIDS AND SAID NO WAY IT'S GONNA GET ME AND SO FAR SO GOOD. I HAVE AN AMAZING GROUP OF DRS. HERE IN NY AND THEY ARE TOTALLY ECSTATIC THAT MY CANCER HAS NOT SPREAD, OF COURSE I AM TOO BUT BEING A STUBBORN IRISH BROAD I'D LIKE TO SEE IT ALL BE GONE---ONE DAY MAYBE! GOOD LUCK TO YOU ALL! NEED TO CHAT JUST LET ME KNOW! DON'T EVER GIVE UP!

REDTOYOU

HI LISA, SEE YOU ARE GOING FOR TREATMENT OF IL-2. HOW'S IT GOING. A MAN I MET AT MY HOSPITAL ALSO DID IL-2 BUT HAD TO STOP DUE TO COMPLICATIONS AND IS NOW IN MY TREATMENT TRIAL AT SLOAN KETTERING IN NYC. HE HAD SOME TUMOR SHRINKAGE WHILE ON IL-2 WHICH WAS GOOD BUT LIKE I SAID HE HAD TO STOP TAKING IT---HOW ARE YOU DOING ON IT? WE'RE EXPERIMENTING WITH A NON FDA APPROVED DRUG MIXED WITH DTIC AND OUR CANCER HAS NOT SPREAD IN ALMOST A YEAR. HOPE YOU DON'T FEEL TOO SICK AND KEEP ME POSTED IF YOU FEEL LIKE IT!

CEBsMOM

My best friend of 36 years was just diagnosed over Christmas with Stage IV Melanoma. She is being treated in Charlotte, NC and has had 14 radiation treatments so far. Hopeful for qualifications in a clinical trial, but because of her Stage IV status and an odd location of a lesion it has been quite challenging. Joined Inspire for support and hope of others whom have walked down this road of Melanoma.

Kristin_F

My OBGYN discovered a questionable looking spot on my labia in late 2006. We decided to go ahead and biopsy it, and the biopsy came back as malignant melanoma. I was sent to an OBGYN cancer specialist in Chicago. I had a wide excision done on my labia in late 2006 and so far have managed to remain cancer free!! I have to have regular cancer checkups, and have to monitor my vit. D. levels and stay out of the sun, but I was lucky it was caught early! Each time I have to go for a check up, I shudder at the thought that they might find more.

audreyvi

Hello, all--best wishes to all of you.
My husband was recently diagnosed with Stage IV melanoma, with mets to the liver. He is just starting an experimental drug at Sloan Kettering, ipilimumab.
Anyone have any similar experiences?
Audreyvi

Dearbirdlady

Hi Audreyvi,
My husband has been on Ipilimubab (MDX-010) since October and is doing well. He got 4 treatments in 4 months, and now is on a more spread out schedule. The good news is, his lung mets are shrinking, the bad news is, in the middle of this, they found a brain met, so they had to do Tomotherapy and he went on steroids because the MDX affected his pituitary gland, which is not that uncommon, I think. But you can do wonders with a good endocrinologist. All in all, we're happy with the MDX and it DOES show some statistical promise against melanoma. He already did biochemo and then IL-2, so he's been through the mill, but is still working now and exercising and living a "normal" life (except for the trap door). The main thing our onc. is concerned with on the MDX seems to be rash and diarrhea, and so far he hasn't had that. I would also say watch your blood pressure, stay on top of the symptoms, and if you have any blood clotting issues, take a baby aspirin while on the MDX. All this from a lay person's observation, of course ... best of luck!

BKS

I was diagnosed with invasive desmoplastic melanoma in May of 07. I had head surgery into my scalp and a large graft from my thigh replaced that area. At the same time the surgeon did a neck disection on the right side of my neck and removed 39 lymph nodes of which only 2 were positive. I was told at that time that melanoma did not respond well to chemo. But I did have 40 sessions of radiation to my head and neck. My neck was badly burned and I had trouble swallowing and had to use a syringe with a white substance( forgot the name) to deaden the pain. All of that passed and I returned to almost normal. Except I now wear wigs full time( don't mind--the hair always looks good) my neck gets spasms at times. This past year in Oct a scan came back with tumors in both lungs. In Dec I had surgery on the right lung and a lobe was removed. In March I had two areas removed from the left lung. I was hopeful that this would be the end of it. I go to a wonderful Cancer Center-Moffitt in Tampa, Fl. My doctors were terrific and very caring--but in spite of that this week a cat scan came back with bad news--the right lung shows scattered tumor. The Oncologist feels I can not have more surgery as its too soon from the last one AND they are too scattered. He recommends chemo now. I have an appointment with an oncologist in my area this Tuesday. I am trying to remain positive even though I have been told it is only effective in 20% of the cases--and it does not destroy the tumors only slows them. My son who is a doctor( interventional cardiologist) in another state has talked with all my doctors and translates the mumbo jumbo for me.I'm determined to stay upbeat for my husband, children and grand children. They are all so upset -I try to calm them-as I know this is the way nature has to be. Parents before children--I know because I lost a son 15 years ago and much prefer that I go through this then any of them.
I would like to know if anyone has had experience with chemo and this type of melanoma. I'd appreciate any feedback. I'll post when I know the details of my treatment. Thanks for any words of wisdom Beverly

MrFredrickson

Where is the stage 4?

Mine went from the back to the lymph nodes and a moderate chance it went to the lung..any experience with this?

MrFredrickson

How did you get through a matastitis to the brain?

JUDYB1

It was not easy. I had two craniotomies, three gamma knifes and was paralyzed on the left side. I was given before surgery, two months to live, after surgery one year to live. This August will be ten years since I was diagnosed with metastatic melanoma. I have been on Temodar 100mg for seven days every other week. I was on a stronger dose in the beginning. I do not have much trouble with the Temodar. I think you must have a good attitude and fight. I have goals that "must" be reached. My life has changed but as long as I see the next day it is good.
JudyB1

MrFredrickson

Interesting that they gave you such a short life span and youve beat it for 10 year now..I was told that if the melenoma was in my lungs it was pretty much the end of the line..just a matter of how much time the treatment would give me..Im not so sure about that.

dloutay

I am wondering how you are doing. I too have Melanoma that set up home in my left lung in 2006. The tumors returned in the right lung this year. They gave me Leukine to boost my immune system but tumors are still growing and being referred to another Cancer Center. What treatments have you been on so far? Any education you wish to share??

I have the 9th grand child on the way and I too have plenty of life and some Irish grit running in my blood to keep me goin'.......however really need someone who is going or has gone through this.

OneD

When I was in my thirties Derm. found large basil cell on my nose, cut from eye to middle of nose. Said I was too young this was "old farmer" problem. Thank God he chose to do full body exams every three months.... at forty he found a dark spot on upper abdomen, it was melenoma. Surgery came back with in margin, in six months it returned. I was sent to MD Anderson in Houston, top Melenoma surgeon at that time operated. Was melenoma free for over twenty years. January 2008 orginal Derm. found a small dark spot on upper arm and back... sure enough melenoma. To say I owe my life to this doctor is an understatement. Feb 2008 found out I have polymyositis thru muscle biopsy. Joined Inspire becuase of polymyositis...... had never heard of it. Extra bonus for me when I found skin cancer group. Am amazed how treatment has advanced in last 20 years... back then I was told if they don't get it all at surgery there wasn't much that could be done. You all have inspired me by sharing your stories. As we all know once you have had it......chances are you will see it again. I now see Derm every three months and take Super Curcumin and Super D to help the fight.

Best wishes to you all as you fight the Big C. OneD

jimmy_B

I am a stage IV survivor.

see my web blog
http://melanomamissionary.blogspot.com/

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