Metastatic Melanoma and need a miracle!

sodapop

32 years of age. When I was 18 I had a malignant melanoma mole removed from my neck. Everything else was cleared and I did follow ups for about 4-5 yrs with no recurrence.

This year, back in March I noticed shortness of breath and went in for a check up. Dr. ordered chest x-ray which showed numerous lung nodules. Then he ordered ct's of my chest, stomach, and pelvic area. The results were not good. Tumor on my liver and over 20 in my lungs. Referred me to an oncologist and we decided on IL-2.

During the IL-2 treatments the tumors actually grew and I had no benefit from this horrible treatment. We then started on 2 forms of chemo, Taxol and Carboplatnum, they are working so far. Every 3 weeks i get a dose and every 6 weeks we do scans. I've had 7 doses and each scan showed some shrinkage in some and stablization in the others, no growth. I also had the gamma knife done on a little spot in my brain which seemed to work really well also. I complained about back pain, so he ordered mri of spine. It turns out that I have the disease back there too so we do radiation for a week and now my back feels better a month later.

So, treatments are working and I feel great. But what I don't get is why is it impossible or pretty close to, that I won't keep getting better? Or that when the Chemo Plateus, another treatment can't work just as well? My Dr. said that he gives me a 50/50 chance at 1 yr survival and 70/30 for 2 yr. What the hell? I'm only 32 yrs old and healthy. Isn't there an chance that I can keep this in remission for 5-10 yrs, maybe not complete remission but at least stun the growth?? Isn't it possible that within that time, they might come out with a better form of treatment that might work on someone my age and extend life even longer???

The Dr. said that eventually I will need someone to take care of me like my parents who I live with now because of this and that I shouldn't make any long term plans. I just don't get it. It's hard to believe that this could happen to me. He even mentioned hospice care might happen eventually. All of this while things are improving is what gets me. Sad

Anyone have some advice or anything to add to this nightmare? Anybody else in similar circumstance?

Thanks for the help!

brainman

Oh sodapop, I hate to hear that your melanoma has metastasized Sad

. The prognosis is not good. While I do not want to give you false hope, I do want to encourage you with my story. If my original prognosis had been correct, I would have died at least 5 years ago. You can follow the link in my signature block to read about my ongoing struggle with my cancer.

Why shouldn't you be one of those 30% who do live longer than 2 years? Your odds are actually much better than mine was. I remember that one of the first things that happened to me when I found out is that it seemed like I had no future. My long-term hopes and dreams vanished that night. That is a normal reaction for anyone faced with our prognosis. However, sometimes the statistics are misleading. You can't just stop living. Your life will be different but you will still be alive until the day you die (obviously). So make every day count.

Yes, there are many trials ongoing and who knows what the future holds in terms of treatment options available to you? You might want to have your doctor do some research on available current studies that you can be a participant in. If you do decide to opt for this kind of treatment you should be very careful to way the risk vs benefits... quality of life vs maybe only a few more months of life.

Keep us informed. I think you will find a lot of support and answer for other members of this community. You are in my thoughts and prayers.

I HATE CANCER!!!! Crying or Very sad

_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

In

Sodapop,

I'm so upset by your prognosis. Please keep a good positive attitude. (even though sometimes we need a breakdown evey now and then). Sometimes it's just got to be about mean kick-arse attitude. Don't let take you or your spirt. Fight and keep fighting.

Not alot of help i know, but something. Wink

.

Have a look at the inspirational stories. Kelly, has a ggod one for you. And of course Brainman- proof that there is hope.

Feel free to rant or rave, cry or laugh. Thats what we are here for.

Thinking of you. Inica.
_________________
Thinking of you Inica

*Administrator*

~Nose Cancer~
~Car Accident- Broken Back, Ribs, Spleen
Sternum~
~Continous Cervical Cancer~

My Story-
http://cancerforums.net/viewtopic.php?t=6731

Smile

9 Lives and still kicking Smile

sodapop

Thanks guys,

I appreciate the support. This place is great.

Isn't it just amazing that I feel just fine considering I have 25 or more tumors inside me, lol! That's not really funny but still. 7 doses of chemo, 2 weeks of IL2, Gamma Knife, radiation for 5 days in 2 spots in the back, and I still feel good. I just don't get it. It feels like all this disease isn't really in me or going to kill me, but I've seen the scans and it's definately there.

I will continue to update on my progress.

Thanks everyone.

In

SodaPop

It is great you are feeling so well!!! - even with all those Alliens in there. Confused

Quality of life is everything, so if you are well, even with all that gunk in your body. Then I'm sooo happy for you. (must be that kick-arse atitude)

And it's not funny- but sometimes a laugh is all we can do- My motto "It's either laugh or cry, and i burn more off with a smile Razz

) Have a look at the jokes on 'the lounge". Laughing

Keep us in contact- and keep doing what your doing. Smile

Inica
_________________
Thinking of you Inica

*Administrator*

~Nose Cancer~
~Car Accident- Broken Back, Ribs, Spleen
Sternum~
~Continous Cervical Cancer~

My Story-
http://cancerforums.net/viewtopic.php?t=6731

Smile

9 Lives and still kicking Smile

sodapop

IN, thanks, it means a lot.

Aliens, lmao, Laughing

, I like that. How do we get these aliens out and back to there own planet?

Keep the prayers up, I have scans next week and some more Chemo, hopefully the scans keep showing progress.

Sodapop!

[quote="In"]SodaPop

It is great you are feeling so well!!! - even with all those Alliens in there. Confused

Quality of life is everything, so if you are well, even with all that gunk in your body. Then I'm sooo happy for you. (must be that kick-arse atitude)

And it's not funny- but sometimes a laugh is all we can do- My motto "It's either laugh or cry, and i burn more off with a smile Razz

) Have a look at the jokes on 'the lounge". Laughing

Keep us in contact- and keep doing what your doing. Smile

Inica[/quote]

sodapop

With so many Tumors in my lungs, why can't they just give me 2 new lungs, along with a new liver and let me go on with my business by staying healthy, taking all the good vitamins, and excersising everyday???

Anyone have some input on that crazy idea?? Brainman?? Idea

Sodapop!

brainman

Hi sodapop,

The transplant people are always concerned about giving a lung to someone with cancer because several dangers:

1. The new lung(s) might get the cancer from a metastatic site that they cannot fund.

2. You would have to go on immunosuppressants... maybe for the rest of your life. That would place at great risk of developing some kind of infection that they might not be able to treat.

3. Organs are in scarce supply.

I am not saying that it is not a good idea and that you should just forget about it. Ask your medical team about this possibility. What I am saying is that transplants are not the panacea they may sound like.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

In

Hi SodaPop.

Well i looked into and watched Aliens, Aliens 2 and 3 and 4...... Laughing

And what they suggest isn't so good. Wink

Better to stick with chemo and radio and every other drug under then sun.

I know what you mean- a transplant, you'd think would fix everything- apparently not. Confused

Anyway Keep up the Kick-Arse Attitude.

Inica
_________________
Thinking of you Inica

*Administrator*

~Nose Cancer~
~Car Accident- Broken Back, Ribs, Spleen
Sternum~
~Continous Cervical Cancer~

My Story-
http://cancerforums.net/viewtopic.php?t=6731

Smile

9 Lives and still kicking Smile

sodapop

Thanks Inica, for the heads up on the aliens. I guess you can't trust those darn aliens after all! Mad

_________________
Can miracles happen?

http://cancerforums.net/viewtopic.php?t=7254

Sodapop--aka "the survivor"!

In

My Husband told me to tell you- lol

That imagine it's the hot women out of Species- might make you feel better. Wink

Men.

_________________
Thinking of you Inica

*Administrator*

~Nose Cancer~
~Car Accident- Broken Back, Ribs, Spleen
Sternum~
~Continous Cervical Cancer~

My Story-
http://cancerforums.net/viewtopic.php?t=6731

Smile

9 Lives and still kicking Smile

sodapop

Yeah, men, who could ever figure them out, Laughing

Update:

Just got back from UVA hospital and had my usual scans I get every 6 weeks of my chest, abdomin, and pelvic region. Scans came back really well again. The tumors in the middle of my lungs down the same path to my stomach area are continuing to shrink and the liver tumor and other lung tumors towards the outside are stable this time. I take that as great news as my Dr. said that usually by now the chemo stops doing it's duty so to say, but I keep showing shrinkage, yeah!! Surprised

So, we went ahead with my 8th dose of Paclitaxel and Carboplatin. My Dr. is thinking that we will try and get in 12 doses total if my body can handle it and I keep showing improvement, then we break and just do scans every 6 weeks and keep the watch on these aliens. If they start growing back, we might try the same approach, a different form of Chemo, or look into a trial of some sort.

I will keep positive and my faith in God that everything will work out.

Thanks for everybodies support.
_________________
Can miracles happen?

http://cancerforums.net/viewtopic.php?t=7254

Sodapop--aka "the survivor"!

In

Great news.

Shrinkage is never a good thing. :p (but in your case Laughing

) It's fantastic its shrinking and looking good. How is your body and you feeling, with all this treatment?

Inica
_________________
Thinking of you Inica

*Administrator*

~Nose Cancer~
~Car Accident- Broken Back, Ribs, Spleen
Sternum~
~Continous Cervical Cancer~

My Story-
http://cancerforums.net/viewtopic.php?t=6731

Smile

9 Lives and still kicking Smile

sodapop

You're correct, shrinkage is not a good thing Embarassed

, but in my case, it's amazing, lol!

I feel pretty good considering all the toxic chemicals I keep receiving. I've only had to get 1 blood transfusion and a few Arenesp shots which is for red blood counts when you're below 10 but not below 8 or something. I fell below 8 2 rounds ago and got the transfusion and it made me feel like a million dollars, I guess I really needed it. My platelets are in the dirt at 85 but other than that, I'm fine.

The worse part about the treatments for me is that dang Neulasta shot. It makes my body ache pretty bad for about 3-4 days after. That stupid shot costs $2,300 bucks, but fortunately I have medicade and hospital insurance so it only costs me $4 bucks, Cool

So, bottom line, shrinkage is good! Razz

_________________
Can miracles happen?

http://cancerforums.net/viewtopic.php?t=7254

Sodapop--aka "the survivor"!

ksplat · Posted: Sun Oct 07, 2007 8:36 pm Post subject: SODAPOP!

Hi there Sodapop,

Reading your story of cancer was mind blowing! I know it's a cliche but "there are always people worse off!" I'm terribly sorry for you, but you appear to have a great & positive approach, which puts you way ahead with your illness!

I've tried chemo & plasma & was depressed by just being in the Oncology ward with other sufferers. I am 45 this year & hearing your story reminds me of what I was doing 10 or so years ago. It's so unjust this cancer beast!

I have been posting on this forum since March this year. My Bro has GBMIV & I came to this forum for support, advice & comfort. I've received all of these over & over again. I am blessed to have found this "oasis" during my Brother's battle with brain cancer.

My motto is "Without Faith We Have Nothing"! Keep fighting the good fight & keep your spirits soaring high.

I will be interested in following your story & would like to offer you my support & comfort wherever possible.

Cheers Aussie Angie.
_________________
Brother has GBMIV
Diagnosed Feb 07
46 Yrs young!
http://cancerforums.net/viewtopic.php?p=19227

"Without Faith We Have Nothing"

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