31-year-old recently diagnosed with Stage IV

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31-year-old recently diagnosed with Stage IV

by CTAClone on Wed Dec 02, 2009 03:47 AM

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So just about a month ago I found out that I had stage 4 metastatic melanoma. They found a tumor in my brain and have found two more lesions in my liver and spleen. I'm doing some bouts of radiation to the brain and both other masses in liver and spleen. They have also started me on Leukine, which I think they are starting because of the intention of doing some chemo in a month or so. What I've been told is that because of the Brain Tumor that I will have to wait and see how that progresses before figuring out a next course of treatment. I had brain surgery a month ago and they feel really confident they got it all. All my oncologists are pretty hesitant to tell me how bad it is, except that it's pretty bad. They are waiting until January to tell me what they really think is what I'm getting from them. From everything I'm reading this is a terrible disease to have but I'm a very healthy person so I'm sure I'll kick it's ass. But I also like to be very well informed and finding stuff out about it. How common is Stage IV Melanoma, it seems to me that I'm a very unique case of theirs and they are spending extra special care on me. So it makes me wonder how often do they see someone with it like the way I do? How bad is it if it's spread to the brain, liver and spleen? I know I'm in for a fight but just reading medical stuff and talking to doctors online isn't giving me the hard truth that I want to have. Statistics really mean nothing to me and would like to hear from others what I'm in store for. What impact does it have on your life/job/family/socializing etc.? I know everyone is different but just curious if I'll be spending my time for the next 6 months just feeling sick while I fight this. Or do some people feel completely healthy. I know it all depends on what kind of treatments I'm doing. But still would like to hear from others about their experiences and what I may have to go through. I just feel the better prepared and the more info I have, the better I can deal and handle it all.

RE: 31-year-old recently diagnosed with Stage IV

by Marylyne on Wed Dec 02, 2009 02:59 PM

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On Dec 02, 2009 3:47 AM CTAClone wrote:

So just about a month ago I found out that I had stage 4 metastatic melanoma. They found a tumor in my brain and have found two more lesions in my liver and spleen. I'm doing some bouts of radiation to the brain and both other masses in liver and spleen. They have also started me on Leukine, which I think they are starting because of the intention of doing some chemo in a month or so. What I've been told is that because of the Brain Tumor that I will have to wait and see how that progresses before figuring out a next course of treatment. I had brain surgery a month ago and they feel really confident they got it all. All my oncologists are pretty hesitant to tell me how bad it is, except that it's pretty bad. They are waiting until January to tell me what they really think is what I'm getting from them. From everything I'm reading this is a terrible disease to have but I'm a very healthy person so I'm sure I'll kick it's ass. But I also like to be very well informed and finding stuff out about it. How common is Stage IV Melanoma, it seems to me that I'm a very unique case of theirs and they are spending extra special care on me. So it makes me wonder how often do they see someone with it like the way I do? How bad is it if it's spread to the brain, liver and spleen? I know I'm in for a fight but just reading medical stuff and talking to doctors online isn't giving me the hard truth that I want to have. Statistics really mean nothing to me and would like to hear from others what I'm in store for. What impact does it have on your life/job/family/socializing etc.? I know everyone is different but just curious if I'll be spending my time for the next 6 months just feeling sick while I fight this. Or do some people feel completely healthy. I know it all depends on what kind of treatments I'm doing. But still would like to hear from others about their experiences and what I may have to go through. I just feel the better prepared and the more info I have, the better I can deal and handle it all.

Stay positive, I want to share my husband's experience with you he was disgonised three years ago with Melanoma in the toe he had surgery they told him that they got all of the cancer was on Interforn for 8 months had all of his lympth nodes removed from his groin.  He was well for 1 year after coming off interforn then the beast came back we found a lump on his back he was diagonsed with two tumors in the brain and lungs and spine.

He had whole brain radation for two weeks, and then has been on Temadol since July of 2008, he is doing fine so far.

The tumors shrunk, we went back to the doctor yesterday and they are sending him for two mri's for the spine and pelvic area as he is having some pain in those areas.

They have reduced the temadol to 200 mg as they feel he has been on it too long 16 months and is showing some side effects of this drug.  You have to take it one day at a time it has been a long journey and we see small changes some days and not so small some days.

Take care my prayers go out to you and your family.

Marylyne

 

RE: 31-year-old recently diagnosed with Stage IV

by Lynette_in_Delaware on Sat Dec 05, 2009 11:41 AM

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Hey fellow Melanomate!

I have stage IV Metastatic Melanoma. I suppose I am one of the lucky ones , this is my third bout with the beast but thankfully it has not hit any of my vital organs. It has just been traveling around throughout the lymphatic highway.

To answer your question, I am not sure how common Stage IV is. I know that my team of Oncologists and surgeons seem to be very reserved about being brutally honest with me also. But here is my theory: I figure our outlook, attitude and Faith are the most important things we have to keep us strong and fight this beast. So maybe it is good to not get the "medical" prognosis.

Strap on your armor and give this beast a fight !!

We NEED to win! Wait We WILL Win!!!!!

Hang in there!  

RE: 31-year-old recently diagnosed with Stage IV

by mmgilio on Tue Dec 08, 2009 03:42 PM

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I am a 30 year old who has just gone through a similar diagnosis with melanoma.  My personal suggestion is to not let them tell you.  You keep on kicking ass and worry about kicking ass. It is my opinion that things like percentages and expiration dates cloud the minds ability to, well, kick ass.  I was diagnosed with metastatic melanoma this May.  And like you was told that I had a "unique" case.  My melanoma was in my duodenum(first part of the sm. intest.), and after further imaging also on my pancreas.  Long story short, I underwent the biggest surgery there is;the Whipple procedure. However, I got a new one; the Super-Whipple". Great news right LOL!  I had half of my stomach removed, the duodenum, half of my colon, my entire gall bladder, spleen , and pancreas all taken out in this surgery.  I am doing ok, but having trouble finding resouces for my specific conditions now.  I know that my attitude and fight is what got me through eveything.  I wish you the best, and whoop some ass!

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