Melanoma Survivor

maritimer

Hi there! I'm new to this, but really felt like hearing other people's stories of living with malignant melanoma diagnosis. I was diagnosed in July/2000, I noticed a mole in the center of my back had turned black and it began itching and bleeding. Went to the doctor, was referred to a dermatologist, and was told the waiting periold to see one would be 8-12 months. Luckily, I got in 2 months later and he removed the mole immediately. Next day, he called with the diagnosis. I was admitted in the hospital soon after and a plastic surgeon removed a large section of skin from my back, I have a large s-shaped scar now. The also removed the sentinal lymph nodes under both arms, and both came back negative. The strange thing is that my melanoma was 7mm, and the doctors initially told me they didn't have much hope for success. I was only 28, at the time and extremely depressed! My dermatologist referred me to an oncologist and together they debated about whether I should start interferon. Many tests later, mri's, cat scans, blood work, x-rays, bone scans, etc, everything came back good. They decided I should not take the treatment. I now go every six months for a battery of tests and see my dermotoligist every 3 months for skin exams. Many people have written how they feel that their friends and families don't understand how serious it is, it's only skin cancer. I get the same treatment! People don't realize how deadly melanoma is. I have a little over 2 years in so far, and I worry every day that it will return. However, I have a 10 year old son, and a loving husband who bring me back to earth when I start getting paranoid. It seems like every little ache or pain I have, the first thing I think is cancer. Not a fun way to live! I decided in Jan of 2001, to start living each day to it's fullest and try not to worry about what the future holds. Anything can happen to anyone, at any time! No sense in worrying myself sick over things I have no control over. Anyway, I'd like to tell everyone who is going through this terrible illness, I know how you feel, my prayers are with you, and as hard as it might seem, keep your chin up! God Bless!

spencerg

Hi,

I too am new to this. I was diagnosed with melanoma (4.4 mm) about two months ago and have since been through the second wide local excision with lymph node biopsy, a CAT and a PET scan,and blood work. All of the pathology came back negative. I am now seeking a second opinion outside of my current provider. So far I have been told that I have three options; I can do nothing, I can do a year of interferon, or I can get into a clinical trial.
Some days I feel like it's gone and that's that. Of course I will be seeing dermatology on a regular basis as well as CAT scans of the chest. My problem is that all of the opinions that I have received so far have been leaning towards the interferon. I was wondering why they decided that you did not need the interferon with such a sizeable measurement?

Keep the positive attitude!

parisgal

spencerg said:

Hi,

I too am new to this. I was diagnosed with melanoma (4.4 mm) about two months ago and have since been through the second wide local excision with lymph node biopsy, a CAT and a PET scan,and blood work. All of the pathology came back negative. I am now seeking a second opinion outside of my current provider. So far I have been told that I have three options; I can do nothing, I can do a year of interferon, or I can get into a clinical trial.
Some days I feel like it's gone and that's that. Of course I will be seeing dermatology on a regular basis as well as CAT scans of the chest. My problem is that all of the opinions that I have received so far have been leaning towards the interferon. I was wondering why they decided that you did not need the interferon with such a sizeable measurement?

Keep the positive attitude!

I am dealing with late stage Melanoma (my father's), so I haven't paid much attention to early stage treatments.

However, I know that Interferon has a low success rate in stopping or slowing the disease in later stages. What kind of side effects does the proposed Interferon treatment have? What level of scanning will you be eligible for through your health care? If it were me, I would avoid the chemotherapy for the moment, but be religious about scans and dermatologist visits every three months.

Found a link http://www.melanomacenter.com/whatis/melanoma_treatment.html -- talks about interferon about 3/4 of the way down the page, which they don't recommend.

I know these were the first really good people my dad talked to when he was first diagnosed (with stage III).

Gary57

I found my melanoma in 1999. It's almost the end of 2004 now and it still hurts. Both inside and on the outside. I got through a year of treatments and now I wonder why it happened the way it did and why I made it through when I was not expected to. I moved 2000 miles this year looking for answers and still the pain is there and the depression is a major task to get through every day. I am afraid to tell anyone why and how I got to where I am today because when people know I have had cancer, they all of a sudden start treating my different and shy away from me as if it were something they might catch if they get too colse. I'm tired and weary of all of this. I wake each day wondering if this will be the da when I find a new lump somewhere or if the headache I can't get rid of is coming from something else that might be starting to return again. I'm middle aged and feel like a old man each morning when I try to get up and start a new day. I wonder if the pain will ever end and why I am even still dealing with this. Sometimes I find myself wishing it had not worked and it had all just ended like the doc thought it would. I'm sorry I laid this out on you. I am just grasping at straws right not and trying to find someone who might care or even pretend to understand.

crittel

parisgal said:

I am dealing with late stage Melanoma (my father's), so I haven't paid much attention to early stage treatments.

However, I know that Interferon has a low success rate in stopping or slowing the disease in later stages. What kind of side effects does the proposed Interferon treatment have? What level of scanning will you be eligible for through your health care? If it were me, I would avoid the chemotherapy for the moment, but be religious about scans and dermatologist visits every three months.

Found a link http://www.melanomacenter.com/whatis/melanoma_treatment.html -- talks about interferon about 3/4 of the way down the page, which they don't recommend.

I know these were the first really good people my dad talked to when he was first diagnosed (with stage III).

Now diagnosed with stage 4 Melanoma - tumor count: 20 in lung, 4 in brain, large intestine, liver, spleen, kidneys, stomach completley full and the fat layer of body is completley seeded from head to toe with tumors you can feel from the out side, they also line both sides of the spine. My 27 year old nephew had a mole removed when he was 17 by a dermatologist who told him it was melanoma and to get check ups if he encountered more moles. Bad advice I guess, but we had no idea untill it was too late. He has been treated for stress/anxiety and acid reflux for two years now. We found out when his doctor went out on maternity leave and her replacement sent my nephew for tests, (endoscopy). Each test that came back was devestating to our family and it seemed like there was nothing to be done. Every doc we spoke with said he would not live through it. He has had the gama knife treatment on the brain tumors and has started temador and thalomid for chemo. He has so much hope and we are dedicated to him 150%. Can you tell me what your father is using for treatment and if he has had any success? They say we should think about the interlukin-2? Have you personally heard of anyone's success on these hard core medications? Sorry about the book, it's just this has all happened so fast and I wish I had more answers.

Thank you so much in advance,
Crystal C.

AuthorUnknown

crittel said:

Now diagnosed with stage 4 Melanoma - tumor count: 20 in lung, 4 in brain, large intestine, liver, spleen, kidneys, stomach completley full and the fat layer of body is completley seeded from head to toe with tumors you can feel from the out side, they also line both sides of the spine. My 27 year old nephew had a mole removed when he was 17 by a dermatologist who told him it was melanoma and to get check ups if he encountered more moles. Bad advice I guess, but we had no idea untill it was too late. He has been treated for stress/anxiety and acid reflux for two years now. We found out when his doctor went out on maternity leave and her replacement sent my nephew for tests, (endoscopy). Each test that came back was devestating to our family and it seemed like there was nothing to be done. Every doc we spoke with said he would not live through it. He has had the gama knife treatment on the brain tumors and has started temador and thalomid for chemo. He has so much hope and we are dedicated to him 150%. Can you tell me what your father is using for treatment and if he has had any success? They say we should think about the interlukin-2? Have you personally heard of anyone's success on these hard core medications? Sorry about the book, it's just this has all happened so fast and I wish I had more answers.

Thank you so much in advance,
Crystal C.

Hello,

You may be interested in contacting the American Cnacer Society's National Cancer Information Center. Cancer Information Specialists are available 24 hours a day, 7 days a week at 1-800-227-2345 and may be able to assist you with your questions.

I hope you have found this information helpful.

All the best,

Dana
CSN Dana

electric

Google Medarex. or Look up MDX 010 treatment for melanoma

AmberEdge

Thank you for your story. It is very similar to mine, though mine started only five months ago with removal of a 7mm non-pigmented melanoma. After a clean PET scan, excision widening and lymph removal surgery the pathology was clean and I was sent to an oncologist. She told me that I wasn't a candidate for chemo but offered me an experimental vaccination treatment course which I am currently in the middle of. The doctors gave me the impression that it was all up with me, but so far I continue as usual, working, travelling, playing golf and I have no side effects.
I am delighted to hear that you are now 5 years past the initial discovery. It gives me hope. I have until now understood that 7mm is very bad news, which I expect it is, but apparently from your account, not necessarily a reason to throw in the towel. You sound like you are doing very well and I believe that is the only way to handle this. I do have moments of worry,depression and every blip I feel in my head I immediately think it's a tumor. I take courage from you. Thank you.

lafnjim

AmberEdge said:

Thank you for your story. It is very similar to mine, though mine started only five months ago with removal of a 7mm non-pigmented melanoma. After a clean PET scan, excision widening and lymph removal surgery the pathology was clean and I was sent to an oncologist. She told me that I wasn't a candidate for chemo but offered me an experimental vaccination treatment course which I am currently in the middle of. The doctors gave me the impression that it was all up with me, but so far I continue as usual, working, travelling, playing golf and I have no side effects.
I am delighted to hear that you are now 5 years past the initial discovery. It gives me hope. I have until now understood that 7mm is very bad news, which I expect it is, but apparently from your account, not necessarily a reason to throw in the towel. You sound like you are doing very well and I believe that is the only way to handle this. I do have moments of worry,depression and every blip I feel in my head I immediately think it's a tumor. I take courage from you. Thank you.

To AllKeep Fighting and Hoping. That is all I can
say and ask.
My wife has Malignant Melanoma Stage 4. 5.3cmx4.4
cm under her arm and a 1 inch x 1 inch thing on
her sternum. I am nervous as hell. I am on the internet reading all hours of day and night, to
detriment of business.
I hope I can find the peace to let "thy will be done." For now I race around looking for information.

At MD Anderson, where we are doing this thing. We are still in diagnostic phase. What do do? They say Chemo. They offer all the ideas listed. No surgery. In Dallas, two said surgery and one said
radiation. What is the answer?

I hope we get the survivor thing. She is healthy.
She is still in the "I can't believe this has happened to me...Why" phase.

Will nutrition therapy work. I went to nutritionist. Essiac...I am wanting to get me hands on this..

Your replies are appreciated.

ladylite77

Bless you for posting this!!!
Thank you Maritimer...You have just described my story to the "T". I didnt do the interferon either, after lots of research on my own..and seeing an expert in the academic setting. The oncologist left the decision up to me and refused to recommend or discourage the treatment, one way or another.This was due to the great deal of controversy that surrounds interferon. my son is also 10, and I had the same procedure on my back...with 3 of 5 lymph nodes coming out positive.
Every time I feel pain, I wonder.... and it just seems like the scans are looking for something larger in size...but what we have is something microscopic... in our blood and lymph node system ...

I was 32 when I was diagnosed in Feb 2011.

I feel like lately, there is a lot of fatigue, missing work due to extreme weakness, and I just feel a sense that something is not right with me. I show all the signs of immune system weakness. Now I wonder every day if I am full of cancer, but its just too small to detect…. Its really frightening.

I pray to God every day to keep me alive for my son’s sake…as we left his father when I was diagnosed.I am all he has and I feel like the only one that understands him…

Lately I have been wondering...should I go back and ask for the interferon after all? Is it too late?

Your post was so helpful, because you are in my same boat...and express a lot of what I have carried too. I just want to say thanks.