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    Old 11-11-2006, 02:52 PM   #1
    76blazer
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    Unhappy story about melanoma

    I wanted to share my story of my brothers recent, untimely, death from melanoma....This is not meant to scare anyone, it is meant to inform everyone about how serious this disease is....Here goes....
    In October 2003 my brother had a malignant melanoma mole removed from his chest. They did a wide area excision and check of his nearest lymph nodes to see if they had been affected. They hadn't. He was sent home with a clean bill of health. He was to be checked by a dermatologist every three months from then on, which he did. He checked out fine each time.
    Now, fast forward to August 2006. He started getting a sore back and made an appointment to see the doctor on September 19. His pain was getting severe and we thought that he had a slipped disc or whatever. Unfortunatly, it wasn't a back problem. A lymph node in his armpit was swollen and black. Had it biopsied and sure enough, it was melanoma back again. However, this time there were no moles or outward signs on his body....He was diagnosed with metastatic (which means it spread to other organs) melanoma on September 22, and he passed away from the disease on November 3, 2006. Exactly 45 days after he was diagnosed. Melanoma is a very serious disease and you cannot always detect it on the skin. My brothers disease had spread to his brain, spine, liver, galbladder, subcutaneous fatty tissue and lungs. There were NO visible signs of his disease. This disease took his life in a matter of months. He was only 34 years old...!!! We have no idea when it came back, or where it came back, but, we do know that it was NOT on his skin. Metastatic melanoma is the most deadly, painful and untreatable of all cancers. I am light skinned and freckled and run a high risk of getting this disease myself. The thing that worries me is that it is not always on the skin which is a common myth. Unfortunatly, there is no other way to detect it short of a cat scan every couple of months (which is impossible financially). If any of you have melanoma, please be sure to get your checks, and beware of swollen lymph nodes. I am not trying to scare anyone, but, I was my brothers best friend and acted as his caregiver for the last 6 weeks of his life and I learned way more about this disease than I ever cared to know.....Take care...
    In memory-Louis

    August 17, 1972-November 3, 2006....

    Last edited by moderator2; 11-11-2006 at 08:54 PM.

     
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    Old 11-11-2006, 04:13 PM   #2
    westllen
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    Re: story about melanoma

    I am so sorry to hear of the passing of your brother. Your information will help people take better care of themselves. I for one, will continue to be adamant with the doctors and getting my check ups.

    Please do the same with yourself.

    Your brother was very lucky to have you there for him, his guardian angel.

    I want to thank you for posting for the rest of us. It may be the life you save today because of your post.

    Janie

     
    Old 11-11-2006, 08:43 PM   #3
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    Re: story about melanoma

    Thank you for sharing your story. I'm so sorry for your loss.
    May God bless Louis, your family, and all those who have suffered because of malignant melanoma.

    Sincerely,
    L.L.

    Last edited by moderator2; 11-11-2006 at 08:55 PM.

     
    Old 11-15-2006, 12:03 PM   #4
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    Re: story about melanoma

    I am so sorry to hear that! I had melanoma also. They scanned my lymph nodes & removed three, but they were clean. Where else are your lymph nodes? I know under your armpits, but where else?

     
    Old 11-15-2006, 03:50 PM   #5
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    Re: story about melanoma

    Lymph nodes arae in the neck, groin area too.

    What Clarks Level were you?

     
    Old 11-16-2006, 06:06 PM   #6
    76blazer
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    Post Re: story about melanoma

    thanks everyone.....I am still getting used to not having him around,....It has only been 2 weeks!!! But, they checked my brothers lymph nodes in the armpit because his melanoma was on his chest and those were the closest ones. However, I think they are throughout the body especially in the neck and groin area as westllen said.....I have no idea what you are talking about concerning the Clarks level though. Must have something to do with how deep the mole was???? We never did hear anything about the Clarks level....Basically, we were past that point, and into Stage IV of the cancer, so Clarks level wasn't even an issue...swollen (and discolored) lymph nodes were one of my brothers first signs....Incidently, once the cancer passes to the lymph nodes, it basically passes to the rest of the body (organs) through those.....Good luck to you with your melanoma....Keep getting your checks and at the first sign of ANYTHING out of the ordinary, please get checked out....I wish you well, and I am sure you will be fine...Just try hard to keep on top of it.....Good luck to everyone, and thanks for the well wishes....

     
    Old 11-19-2006, 08:19 PM   #7
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    Re: story about melanoma

    I agree that once you have been told you have melanoma, you must be extra vigilant with regards to your body.

    I would also had, that you should try to get into some clinical trials if at all possible.

    My brother passed away of melonoma at the age of 34 yrs also......I miss him dearly.

     
    Old 11-20-2006, 12:19 PM   #8
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    Re: story about melanoma

    I am sorry to hear about your loss too Danialla....I read somewhere that Melanoma kills mostly men between the ages of 25 and 50. And that the most deaths occur in men who are 34 years old.....Isn't that just crazy...??? It's far to young to die that's for sure....Again, I am sorry for your loss and I agree about getting checks and maybe doing clinical trials. I have also heard recently that they have a melanoma vaccine in the works and it works on dogs...(Yes, pets get melanoma too....) Anyways, it hasn't been tested on humans yet and could be a number of years before it is available for humans (if ever), but, it sure seems promising....My thoughts and prayers are with everyone who is suffering from cancer and thier loved ones...Good luck to all.....

     
    Old 11-29-2006, 01:26 PM   #9
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    Re: story about melanoma

    My father has been diagnosed with metastatic melanoma in July 06. He was doing fine until the end of Sept but then started spine problem. Now he is completely in bed and also has it in brain and lungs as well. My prayers are with you. We are in the same boat.

     
    Old 11-30-2006, 05:04 PM   #10
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    Re: story about melanoma

    Quote:
    Originally Posted by pkalola
    My father has been diagnosed with metastatic melanoma in July 06. He was doing fine until the end of Sept but then started spine problem. Now he is completely in bed and also has it in brain and lungs as well. My prayers are with you. We are in the same boat.
    My heart breaks for you.

    What where your father's symptoms? Your family is in my prayers.

     
    Old 02-01-2007, 05:49 PM   #11
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    Re: story about melanoma

    I am so sorry to hear about your brother, those Dr's should be shot! My husband had it yrs ago level 1V. His lymph nodes were fine but to be safe the Dr took them out on the same side his cancer was. That was 18yrs ago & he's fine. Makes me so mad they should have known better. He is in my prayers.

     
    Old 02-10-2007, 09:32 AM   #12
    caryncmale
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    Re: story about melanoma

    I am very sympathetic to you and feel for your loss. No one should have to die from melanoma.

    You did not post your brothers mole depth, the staging, or clark level.

    I had a stage 1A melanoma removed in 2003 (.04mm and clarks 2).
    I would gladly have had a sentinal node biopsy, but my doctors would not do it.
    My wife is a breast cancer survivor (12 years). She has no lymph nodes on her left arm because they removed them all. She gets lymphodemia that gets worse with age. Her left arm swells and hurts her some. She has had two severe infections in that arm from simple cuts.

    So doctors have to weigh risks with treatments.

    I have had some scares but am still fine.

    I would not shoot the doctors. Over 95% of Stage 1A are fine with just wide excission.

    Don't 2nd guess decissions that are already made.

    Last edited by caryncmale; 02-10-2007 at 09:33 AM.

     
    Old 02-10-2007, 10:05 PM   #13
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    Re: story about melanoma

    I am very sorry to hear about your brother. One thing that is definite about melanoma, is that it is NOT predictable.

    Not knowing what stage your brother was makes it more difficult to know how badly the doctor didn't do what he should have. If at his WLE he was a stage I - he probably would have been told by the majority of doctors to just watch himself and live his life. If he was stage II or III or IV, he probably would have been given more options.

    It is impossible to know what the next move melanoma will take. I am stage IIB. I had a breslow of 5.0mm and was a clarks level of V. Thankfully I was still staged at IIB because it isn't showing in any nodes. There are people with much smaller breslow and they are stage III or IV because it has traveled.

    Like I said - I am sorry about your brother - any melanoma death is tragic. But if you watch yourself and get regular checks, you have a better chance of catching anything early and that is the key to survival.

    Health and Happiness to you.

     
    Old 02-11-2007, 12:52 PM   #14
    76blazer
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    Re: story about melanoma

    Hello everyone. I am going to sound really stupid with this reply, but the truth is, that when my brother had his wide area excision in 2003, I have no idea what his breslow or clarks was. At the time, although my hubby and I were his best friends, he was married. So, I wasn't near as involved with his medical care, or things of that nature. He divorced since that happened, and that is how I wound up caring for him....All I really knew at that time (2003) was that he was a stage I and after the excision, they checked the nodes, and they were clear so they gave him a clean bill of health.....That's about all I really knew. I never found his medical records from that time in his house after his death, so I assume maybe his ex-wife has them? I will ask her....If not, maybe I could get a copy from the Dr's? When he was diagnosed in 2006 with metastatic melanoma, they never mentioned anything about clarks, or breslow levels. Pretty much because it didn't matter. He was full of cancer, and it was just stage IV metastic disease. I will try to find out those other details though. I am really interested to know all of the details now....I am going to the derm for the first time on the 21st of this month. Wish me luck...

     
    Old 02-11-2007, 08:06 PM   #15
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    Re: story about melanoma

    Once the melanoma metastisized, clarks and breslow would not exist... only when diagnosed is when it is usually important. Also stage I with no node involvement is normally a great prognosis.

    I hope your appointment goes well. Just a suggestion, write down any questions that you want to ask so that when you are in there you don't forget them. I always forget to ask something I wanted to ask. lol

     
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