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Looking for Melanoma people

Mick6930
Posts: 2
Joined: Dec 2008

I've been trying to look for active support groups and to my surprise, this one is not very active. So, this is my attempt to activiate it. :)

I'm struggling with Melanoma and its getting worse. Looking for people who are going through the same things to chat to.

hollyberry's picture
hollyberry
Posts: 176
Joined: Nov 2008

Hi Mike, I'm a Mucosal Melanoma survivor ( for now!). I was diagnosed 14 months ago; thought I had a bad hemorrhoid, turned out to be a lesion. 4 surgeries later, I had a colostomy. 5 months later, multiple metastasis; I am in a clinical trial on Carboplatin, Taxol and Avastin- these are keeping the tumors fairly stable; no new mets- some shrank, some grew, but not much. I am having fairly good luck on this protocol but, am hoping for complete remission- doc thinks this is just buying time, however, as I am terminal according to stats.
I hope your battle is going well, you are keeping your chin up and getting good results. Please feel free to talk to me anytime, I'm usually checking in every few days ( i just need time after chemo to recoup)and would love to share the journey with you.
Best of luck, you're in my prayers,
Hollyberry
P.S., Have you tried www.mpip.org?

Mick6930
Posts: 2
Joined: Dec 2008

Thanks for the info holly. Sounds as if your being put through the grind as well.
Would love to contact you directly. Not sure how that is done here.

Oh... and that website you sent was very good. ( as far as the bulletin board goes ). The chat room nobody is ever there. :) But it seems to be an active Melanoma based place.
Much thanks.

Let me know how we can chat or direct email.

Mick

hollyberry's picture
hollyberry
Posts: 176
Joined: Nov 2008

Hey, Mick,
I've never used the chat room... I don't know how. I just use internal mail from home page; I sent you a message. hope to hear from you.
I try to get info from MPIP or NCI on latest trials and any other info I can gather but, as I'm sure you know, there are some sites that just waste your time and don't really offer much useful information. I come here primarily for support and community...Lots of great people to talk to.Since my Melanoma is not primarily skin and (ahem) in a very unusual spot, I don't have others to compare with; I just try to keep a generally upbeat attitude and find that this is a great social outlet for me, since I have had to stop working due to latest treatment.I just had my 9th round of this chemo and it's pretty wicked, so if I don't respond for a couple of days, it's just recovery time. I'll be back to check on you. Glad to have a new friend.
Talk to you soon,
Hollyberry

Mjen's picture
Mjen
Posts: 3
Joined: Feb 2005

I am a 2 time malignant melanoma survivor. Had it in lymph nodes and all... I saw the link you listed above. I'm going to try it.. Hope you are doing ok.

Sincerely,
Jennifer

hollyberry's picture
hollyberry
Posts: 176
Joined: Nov 2008

I'm glad to hear that; I've been in a heated battle with this beast for so long that it is really nice to know someone is doing well! Also hope you liked the MPIP site- they are great people. A lot of resources and support.
I'd love to hear your story, if you have the time. You're in my prayers.
Love,
Hollyberry

Mjen's picture
Mjen
Posts: 3
Joined: Feb 2005

e mail me if you want to.. I guess I will send it to you in a message. The mpip wasn't working when I tried it.

Luv, jennifer

wseward
Posts: 3
Joined: Feb 2009

In November I had surgery on my left chest to remove a stage 2 melanoma. I have had numerous other skin cancers but this is the first and I hope last melanoma. I have a number of issues that I would like to talk about with a present melanoma patient. Though a large portion of tissue was removed from my chest I still feel there is an area which may contain some melanoma. Also, during the preop testing (lymphoscintigraphy) the technician indicated the nodes on my left chest area lit up but not my neck, stomach or groin area. However, after surgery in which one node was removed for testing, that node came back negative for melanoma. I am a little confused and my surgeon was not too informative.

peggy01700
Posts: 8
Joined: Mar 2008

I also am a melanoma survivor. First diagnosed in 2003, had wide excision and sentinal node biopsy. Then it returned in 2007. I thought I had a back problem, but it turned out to be a tumor on my hip. I've also had carbo & taxol and have been in 3 other clinical trials. My tumor has grown larger and I've had pelvic fractures because of it. I am in a wheelchair now, and my cancer has metastasized, but with the help of pain meds, I am able to live as normal a life as possible. I am about to enter a new clinical trial through Cancer Institute of New Jersey.

I also have searched for places to connect with others battling melanoma and am happy to have found this site.

I feel blessed that it is almost 2 years and I am still hanging in there.

Wish you all the best with your treatment. We have to try to stay strong to battle this disease.

Peggy01700

happylady909090
Posts: 1
Joined: Jan 2009

the best place for melanoma patients and their families to go is mpip.com.. go check it out

deejay52
Posts: 1
Joined: Jan 2009

i too am looking not only for someone to discuss this with but also stories of hope and promise. i was diagnosed in july 2008 with melanoma, had my right big toe removed and also 15 lymph nodes from my groin, here it is, jan and my scans now show i have a spot in my liver and several small spots in my lungs. i will be going to tampa fl on feb 13th to find out what treatment options i have. its very scary and i am just hoping they will find the right combination for me to help clear it up. this type of cancer is different from most and i am excited about all the things they are discovering everyday but at the same time i am very scared. its good to find a site that others can share their concerns with.

sharmon0490
Posts: 3
Joined: May 2009

i live in tampa and my husband had melanoma under his big toe. we had it amputated in sept 07 and lymph node removed. he was just told he has stage 4 to his lungs and we are going next week to start treatment. We are scared too,

charron's picture
charron
Posts: 3
Joined: Feb 2009

hi, would love to chat. I'm a recurrent matastisized melanoma person. so far, doing good and still surviving.

mainegal's picture
mainegal
Posts: 6
Joined: Nov 2005

Hi Mick

Always happy to offer some encourgement~ its a tough road, keep focused on winning, its takes getting your butt kicked but miracles happen everyday!

Feel free to email me, as I only on occasion check on this site, numerous ways to contact me

www.myspace.com/operationsunshield

www.operationsunshield.org

or my email is linked to here too :-)

Stay strong, you are NOT alone!
In friendship~ Jane

DWEBSTER
Posts: 2
Joined: Apr 2009

HI I AM JUST OVER 3 YRS AND SO FAR SO GOOD I FEEL LIKE A MILLION BUCKS BUT WOULD RATHER HAVE THE MILLION AND FEEL LIKE 50,000 THINK POSITIVE AND HAVE A GOOD TIME MY RIDE HAS BEEN GREAT SO FAR LOOKING FOR 40 MORE YRS WHEN IM 106 THEN I WILL GIVE UP

Zod66's picture
Zod66
Posts: 28
Joined: May 2008

I realize your original post was a couple months ago but noticed you didn't elaborate on how you were getting worse and does not appear you're actively coming back to this thread.
So, if you're out there how are you today?
What has transpired in the past couple of months as far as procedures, tests, treatments?
How are you doing emotionally & professionally (employment)?

DWEBSTER
Posts: 2
Joined: Apr 2009

HI I WAS DIAGNOSED WITH STAGE4 MELANOMA 3/2006 SINCE THEN I HAD SURGERY ON BACK RADIATION INTERFERON NO LUCK WENT TO MOFFITT 2/2008 HAVE BEEN ON 2 TRIALS 1ST DIDN'T WORK 2ND WAS COMPLETED 7/2008 NOUDLES ON BODY WENT AWAY SPOTS INSIDE GONE FOUND 3 SPOTS ON BRAIN 9/08 HAD RADIATION ALL GONE JUST HAD BODY SCAN LAST WEEK NOTHING NEW WILL GO NEXT WEEK FOR FOLLOW-UP BRAIN SCAN HOPE NOTHING IS THERE OTHERWISE I FEEL GREAT AT THE BEGINING THEY GAVE ME 6 MONTHS AM GOING ON 3 YRS NOW IN 40 MORE YRS I WILL BE 106 THINK POSITIVE

sharmon0490
Posts: 3
Joined: May 2009

THAT IS WHAT I NEEDED TO HEAR WE ARE GOING TO MOFFITT THIS WEEK AND WOULD LOVE TO TALK TO YOU. STAGE 4 IN LUNGS AND VERY AFRAID OF WE FACE. WE WILL BE SEEING DR WEBER.
I HAVE NOT BEEN ABLE TO THINK MUCH OF ANYTHING POSITIVE. AGAIN THANKS FOR YOUR POST

drewintc
Posts: 1
Joined: Jun 2009

I'm sorry if I have this is the wrong place. After 13 months of having melanoma in the brain and lungs, just went to my doctor after my last MRI and was told there were many new sites in my brain. This is after 2 brain surgeries and 2 gamma knife procedures and months of taking temador. Was told to stop taking the pills and go see the radiologist for WBR or talk about it. Seems like I should have been prepared for this and have more questions to ask the doctor but didn't. I did ask how many new sites and he said he didn't count them all. Now I'm not sure is that because he just read the file before coming in to the exam room or there just are too many to count. Thought I was doing pretty good fighting this but now just feel beaten. I want to now if gamma knife is an option but its Saturday (nobody around to ask on a Sat.) Did anybody have any luck with WBR or did it make it worse. Would like somebody to talk to. Anybody have this type of diagnosis?

hollyberry's picture
hollyberry
Posts: 176
Joined: Nov 2008

I,too, have multiple mets to brain; WBR was recommended. I have an appointment with Cyberknife docs, and I already saw radiologist for WBR.
Because Melanoma is one of the most aggressive cancers, I am leaning toward WBR to get rid of all of the cells and cell nests that can't be seen. I was totally against this at first, then I got more information from the radiologist and the side=effects and after-effects don't seem to be as bad as I presumed. I have to say that I made the mistake of reading too much on the internet and not getting my facts from a reliable source in the first place.
I will be starting next week, if I do, indeed, go with WBR. I expect fatigue, nausea, sores in mouth, dry mouth and some headaches. I can live with that for a few months if I can get 3-5 years without recurrance in the brain. I hope you get as much information as you need to make this decision comfortable for you. I grilled my doc for almost an hour and she didn't mind one bit; in fact, she encouraged me to keep the appt. with the cyberknife docs and be sure of what I want before I commit to anything. That's the kind of doc I love!!
Good luck to you and let me know what you decide; I will do the same.
Best wishes to you,
Hollyberry

jem777
Posts: 2
Joined: May 2009

Good luck to your session. Cyberknife is one good surgery for your treatment.

yalleh's picture
yalleh
Posts: 36
Joined: Jul 2009

I was diagnosed stage 4 in the lungs and lymph nodes over 2 years ago, it progressed into the brain (5 tumors in the brain, 7 in lungs including one the size of a fist and 7 more throughout the lynph nodes) and like DWEBSTER says in 40 years I will be 76 and still beating this thing.

If it helps I wake up every morning with a smile on my face and think how beautiful it is to see the sun rise and that I'm not going to waste a minute on worrying about what I can't control. I can control enjoying every minute of everyday. I watch comedy's and I make it a goal to make my wife laugh at least once a day and I ask others to try to make me laugh once a day.

My dog helps remind me that what happened yesterday doesn't matter and what's going to happen tomorrow you have no control of so Just Live in the Moment!

peggy01700
Posts: 8
Joined: Mar 2008

Just wanted to say I appreciate your encouraging comments. I have been battling malignant melanoma for almost 2 years now. I am in a wheelchair because of a tumor on my hip. Sometimes it is difficult to get going in the morning and to keep a happy attitude. But I am going to keep trying!

Peggy 01700

mb
Posts: 1
Joined: Sep 2009

Hi,
My husband has stage 4 Melanoma, tumors in the brain and lung. He had Brain surgery done last October to remove the one tumor that showed up at that time and it went well for a while then in June two new tumors showed up, he had the gamknife done and they did another MRI to fine out that there is alot more tumors, they then did full brain radiation and now we have to wait to see did that work (lets hope and pray). He also had chemo made up off Nexavar and Temodor but that didn't seem to do anything. My husband is a young man like yourself, he is very down at the moment, this is not an easy battle. Anyway I just wanted to say Thank You for making me smile. Does anybody know what is the differents between Gam Knife and Cyber Knife???

SmileyJane
Posts: 2
Joined: Jun 2009

Mt husband was dx with melanoma in 2005-stage3. It has since metastasized (Sept.2008) to the liver, lung, chest, spleen, kidney and most recently the brain. Rought stuff. He has had 6 rounds of carbo taxol and has 2 left. He is currently receiving whole brain radiation.

yalleh's picture
yalleh
Posts: 36
Joined: Jul 2009

Your husbands diagnosis sounds like mine. Keep up the good fight and make sure you hug him and make him laugh (best reatment for me anyway).

rwagner
Posts: 11
Joined: Jul 2009

My dad is in the same boat. The mets destroyed his spleen and put pressure on nerves near his pancreas, which makes it almost impossible for him to eat. He's currently experiencing confusion from some big mets in his brain. He's getting whole brain radiation treatment.
I wish everyone peace who is in this fight. You are all my heroes.

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