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76blazer
11-11-2006, 02:52 PM
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....

westllen
11-11-2006, 04:13 PM
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.: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

Lilacs&Lillies
11-11-2006, 08:43 PM
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.

ariesgirly
11-15-2006, 12:03 PM
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?

westllen
11-15-2006, 03:50 PM
Lymph nodes arae in the neck, groin area too.

What Clarks Level were you?

76blazer
11-16-2006, 06:06 PM
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....

Danialla
11-19-2006, 08:19 PM
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.

76blazer
11-20-2006, 12:19 PM
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.....

pkalola
11-29-2006, 01:26 PM
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.

westllen
11-30-2006, 05:04 PM
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.

Gram4
02-01-2007, 05:49 PM
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.

caryncmale
02-10-2007, 09:32 AM
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.

Ladypepper
02-10-2007, 10:05 PM
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.

76blazer
02-11-2007, 12:52 PM
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...

Ladypepper
02-11-2007, 08:06 PM
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

snowchickkim
02-12-2007, 03:33 PM
I am so sorry to read about your brother. I myself had a melanoma removed from my right breast in nov. I never thought at 24 I would have to deal with this. I completely understand how you feel with the fact that he had no skin signs. My freckle was just that a freckle or mole, whatever you want to call it. I had no irregular border, odd shape, or raised at all. My doctor had it checked out just to make sure, but she wasn't concerned at all, then the report came back 2 weeks later that it was early stage melanoma. By the time she called me, surgery was already scheduled, which was very frightening. It was very hard to hear because you look at pictures and just say that it isn't possible, because that isn't how mine looks. Then with your brother, who had no signs, I cann't even imagine. I myself am trying to tell everyone to get checked, just to be safe. What I have discovered is yes it is very treatable, but bye the time the "signs" are apparent, it might be to late. I go every 3 months to a derm. as well, terrified if they will find something new or not. I hope that you and your family are doing as well as you can be in a difficult time like this. I see that you have many other post on here, do you have melanoma? (REMOVED) Thank-you.

76blazer
02-14-2007, 11:27 AM
Hi Snowchickkim....I don't have melanoma as far as I know. I go in for my first appointment on Feb 21. My brother is the only person I have known with Melanoma, and I am not all that well informed on the topic....Thanks for the reply Ladypepper, you gave me lots of info (like why they never mentioned Clarks or breslow levels...) I go to the derm next weds, and I am a little nervous to say the least. I am 30 (a year younger than my brother was at his first diagnosis), and I am covered in freckles and moles...I have light skin, green eyes and burn easily. All of that coupled with the fact of my bro dying from this has me a little worried....Just wish me luck...thanks...god bless...

Ladypepper
02-15-2007, 08:11 AM
You are very welcome and being worried is totally understandable! :) I hope everything goes fine at your appointment. Keep us posted.

76blazer
02-21-2007, 12:35 PM
Hi Guys....Went to the derm today....Got 4 spots taken off just to be on the safe side....Love my derm, she doesn't screw around...However, I just about fell over when I got the bill....Over $1,000.00 for todays visit....I can't afford cancer-I have no insurance....Anyways, I will get the results back on friday or monday...I am sure all will be fine....I will let you all know....tata...

76blazer
02-23-2007, 09:04 AM
Hi Everyone...Well, I got the results back of the biopsies I had the other day and they all came back clear...All benign, and nothing to worry about at this point!!! YIPPEE!!!! Anywho-just wanted to let you all know....Needless to say, I am over joyed....Now, I just need to get that big bill paid..!!!! Have a great weekend everyone!!!

Ladypepper
02-23-2007, 10:49 AM
Great news! Congrats! Keep watching your skin and keep up on your check ups. That is very good news.

mcr285
03-14-2007, 01:18 PM
I am so sorry for your tragedy. This story is so much how my Dad found his cancer was back. He had two melanomas removed from his back and had no signs of it coming back for almost 7 years. Then he started getting some pains, mostly in his back and abdomen. We thought possibly kidney stones, but he felt it was worse and went to see his cancer doctor. His cancer doctor actually tried to blow him off and told him he was fine, because he had no outward signs of having cancer, but at my Dad's insistence, the idiot doctor FINALLY agreed to a PET scan. The PET scan showed my Dad had metastatic melanoma with sites in his liver, lungs, spleen, bones.... pretty much everywhere. He has been through a few rounds of biochemotherapy, and is now doing a different chemo, while awaiting a clinical trial, while the insurance sits on their arses and twiddles their thumbs hoping my Dad will die before they have to pay for anything. Stupid good for nothing, scumsucking, lower than dirt...... oh sorry.
ANYWAY, if you've had skin cancer before, it's likely you'll get it again. If you think something might be wrong, DON'T LET YOUR DOCTORS BLOW IT OFF!!!!! Be pushy, insist they run the tests, and if they won't, then find a doctor who will!!! If my Dad had listened to his doctor, he'd be dead now.

76blazer
03-16-2007, 01:07 PM
Sorry to hear about your dad....My brother died 45 days after he was diagnosed with metastatic melanoma, so it would seem that your father is in a little better shape..(thank goodness)..What you've said is true on many levels....Of course the insurance company is hoping that your dad will die before they have to pay-they are bottom-feeding, scumsuckers....Secondly, if you have had skin cancer, I am also a true believer in the fact that it will come back....Unfortunatley, it seems that melanoma in particular doesn't always come back on the skin-that just happens to be the "primary" site....My brother didn't have any cancer on his skin when he passed....By then it was all in his organs, brain and bone....Who knows how long it had been growing...kudos to your dad for not letting the Dr. push him around.....Everyone just needs to be extra vigilant when it comes to skin cancer....It really is way more serious than I ever really imagined until it struck my best friend.....Good luck with your dad and hopefully the clinical trial will help and will be worth it in the end....Your dad is a saint to even sign up for a clinical trial.....His participation may save someones life someday....Good luck to you all-you are in my thoughts and prayers....Please keep us posted as to his progress.....bp

lakebulter
03-31-2007, 11:13 AM
I was diagnosed with prostate cancer in feb07 then in march 07 the
radiation doctor spotted two moles on my back and he wanted them
checked before any procedure is done. So in mar 07 they discovered
i had melanoma that has spread but they don't know where it spread
to and they are going to do surgery on apr 9 07. Can this be the
same cancer that spread to the prostate?

76blazer
03-31-2007, 01:19 PM
I dunno about that Lakebulter (sp)....I actually don't know much about cancer in general. But, when a cancer spreads it is called a metasticized Cancer. For example my brother had metastatic melanoma meaning that his "primary site" of the cancer that spread was melanoma. You can have metastatic breast, colon, prostate whatever, cancer. ( I think)...Now, the spots on your back are melanoma and the prostate cancer would appear to be seperate. If they think that the cancer has spread they will probably give you a CT scan and PET scan or one or the other. Who knows, maybe there's no cancer in the prostate but maybe other locations, which would seem to make them completely seperate. I would imagine that if you got the cancer in the prostate from melanoma you would have already known you had melanoma...? Am I making any sense???hahahaaaa...

Anyways, you may never really know for sure...Obviously, cancer is a big mystery even to the medical and scientific community. At any rate-good luck to you...You will remain in my thoughts and prayers as you battle through this. Hang in there-be vigilant about asking your Dr.'s these kinds of questions. God Bless.

lakebulter
03-31-2007, 01:47 PM
I already had two ct scan and they had missed the melonama cancer on
my back.

76blazer
04-01-2007, 10:49 AM
Hi Lakebulter....Sorry to hear that they missed the cancer on your back...I suppose if that is the case -then the prostate cancer could've actually been metasticized melanoma.??...I find it odd that they would have missed it with a CT scan....Maybe it was very small??? I wish I had answers for you...

Just keep vigilant about your dr.'s....If you read on these posts, there are many folks who were not happy with the care they or a loved one recieved from thier dr.s....I for one was very unhappy about how the oncologists treated my brother....They were ready to make him into a guniea pig.....And, they would never actually give us a straight answer to our questions....We got excellent care and support from the Dr. who actually diagnosed my brother and he was just a GP working at our local clinic (for folks with no insurance, they give lower rates for self pay patients, etc....) He is the most honest, informative, and caring Dr. I have ever met...He would call me every 3 days to see how my brother was doing. He gave me his home, office and cell phone numbers in case we needed meds or to talk or anything...He is now my primary physician...I won't even consider seeing anyone else....I wish that all the dr.s could've been like him-but, the other dr.s needed us to tell them who we were everytime, ask the same questions over and over like they never saw us before (which they had)....Anywho-not to get on my soapbox about that (sorry)....

The point is, keep pestering your dr.'s about all of your questions...You may even consider getting a second opinion or changing dr.'s all together....What you are going through is no joke and you really need someone who can help you through it...I am very sorry that you even have to deal with this and I wish you luck with everything. Please let us know how things progress....You will remain in my thoughts and prayers....