MPIP: Melanoma Patients Information Page

The MPIP is the oldest and largest community of people affected by melanoma hosted through the Melanoma Research Foundation. It is designed to provide support and information to caregivers, patients, family and friends. Once you have been touched by melanoma—either as a patient or as a family member or friend of a patient—you become part of a community. It is not a community anyone joins willingly. But if you must be part of this group, you will find no better place to find the tools you need in your journey with this cancer, and the friends who can make that journey more bearable.

The information on the bulletin board is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

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himynameiskevin's picture
Replies 19
Last reply 9/29/2010 - 7:18pm

Hello everyone. I had stereotactic radiation done yesterday, hopefully took care of the met in my brain. As for the ones in my lungs, liver, chest and back, I will be starting IL-2 on monday. I'm a little scared, a little nervous, with all the possible side effects, but have got my hopes up for the possible help it may bring. Has anyone here had a positive experience with IL-2? Any recommendations or tips I might benefit from? How about nutrition while on it? I've seen the operationsunshield website, but would appreciate any other opinions or stories. Thank you. Oh and on a lighter note, I got married 2 days ago, she looked beautiful, and we're moving into our own place this weekend. It will be nice to arrive to a new home after the hospital stay. :)

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himynameiskevin's picture
Replies 1
Last reply 8/28/2010 - 10:49am
Replies by: dian in spokane

Hello everyone. Just an update. I had stereotactic radiation done yesterday, hopefully took care of the met in my brain. As for the ones in my lungs, liver, chest and back, I will be starting IL-2 on monday. Scared? Yes, I'm kind of nervous, with all the possible side effects, but have got my hopes up for the possible help it may bring. Has anyone here had a positive experience with IL-2? Any recommendations or tips I might benefit from? How about nutrition while on it? I've seen the operationsunshield website, but would appreciate any other opinions or stories. Thank you. Oh and on a lighter note, I got married 2 days ago, she looked beautiful, and we're moving into our own place this weekend. It will be nice to arrive to a new home after the hospital stay. :)

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I wondered if anybody might know how many treatments of chemotherapy one might require before finding out if it is reducing the size of subcutaneous Mets. I have only had one infusion so far and obviously won't know what effect it is having on the tumours in my organs etc until I've had a scan after my second infusion. However, obviously one can one can see subcutaneous mets and I thought others may have seen some signs of them reducing in size after treatment, but didn't know how long this usually takes. Any information would be appreciated.

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Anonymous's picture
Anonymous
Replies 2
Last reply 8/28/2010 - 8:29am
Replies by: Fen, Janet2

Just wondering if anyone else has encountered these same type of feelings.  Before being diagnosed with Stage 3 Melanoma I moved across the country away from all of my family and friends with my new husband.  Being in a new environment, not feeling quite myself, I have found it so difficult to make friends my age (I'm 29).  I find that many women my age are dealing with such different things like starting their families, etc.  Although I've been NED for a little over a year now, and am finished with my interferon treatments (I did 4 and 1/2 months,) I'm definitely still reeling from everything that I've been through.  Although I believe that I'm quite positive most of the time, I've had a few breakdowns with new friends, and find them running the other way.  Maybe my situation reminds others how fragile life is?  Maybe others don't realize how serious melanoma is and think I'm being a drama queen?  I've never had difficulty making friends before, and now is when I need them the most.  Anyone else experienced anything like this? 

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ALA's picture
Replies 5
Last reply 8/30/2010 - 12:14pm
Replies by: ALA, washoegal, Fen, molly

Sept 2009 I was diagnosed with stage IIB melanoma, 11 mm deep but not ulcerated removed from mid back, margins clean.  SNB was not performed as the doctor assumed lymph node involvement given the depth.  Whole body PET scan and sonogram of suspect lymph nodes at neck and arm pit were clear.  Because my insurance ruled this a pre-existing condition I could not afford the recommended adjuvant interferon therapy and opted for watchful waiting.  Coming up on a year now with no articulable symptoms of recurrence or remote metastases which brings me to the subject.  Is there a recommended progression of follow up tests (from least to most expensive or with the greatest chance of detecting disease) I should be considering at this juncture?  Best wishes to all, Alan.

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Buddy is in rehab now after his fall last Sunday morning at 3AM.  He was in hospital 3 days, transported to rehab center-which is closely  akin to a nursing home to me.  Anyway, his physical therapy is going fine.  He is sitting up now, couldn't before and he's transferrring from bed to wheelchair with effort.

My "now" concern, as opposed my 'now " concern later, =they are all important to me--Buddy's bowels are empacked-there is a large tumor which lays just beside the anus and is making the opening smaller.  We are trying a suposidory this evening.  Is the bowel empackment made worse by the tumore--its about the size of a golf ball-should I see about getting this tumor taken out of there, or try eminta - it's a rather dirty place, and I'll afraid of infection - are some suppostoris better than other? 

For those who have so graciously followed Buddy through this juorney, he had taken the frist 2 doses of IPI in Philadelphia, tolerated well, but those darn old brain mets returned.  He is on steroids now to reduce the swelling of the brain.  He is on 4mg every6 hours.  He is on the IPPI trial, which has stated they would allow only the low dose decatron for their trial.  His scheduled IPPI treatment woud be this coming Tuesday>

Some of the tumors have gotten smaller, but most have gotten larger.  Most of them are truning purple in color.

Can anyone suggust what we could do ?  The melanoma has met to the lungs, the liver and the brain.

Thanks fo all who reply - It;s been a busy week here in Maryland!

Nancy

 

 

 

 

 

 

 

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Buddy is in rehab now after his fall last Sunday morning at 3AM.  He was in hospital 3 days, transported to rehab center-which is closely  akin to a nursing home to me.  Anyway, his physical therapy is going fine.  He is sitting up now, couldn't before and he's transferrring from bed to wheelchair with effort.

My "now" concern, as opposed my 'now " concern later, =they are all important to me--Buddy's bowels are empacked-there is a large tumor which lays just beside the anus and is making the opening smaller.  We are trying a suposidory this evening.  Is the bowel empackment made worse by the tumore--its about the size of a golf ball-should I see about getting this tumor taken out of there, or try eminta - it's a rather dirty place, and I'll afraid of infection - are some suppostoris better than other? 

For those who have so graciously followed Buddy through this juorney, he had taken the frist 2 doses of IPI in Philadelphia, tolerated well, but those darn old brain mets returned.  He is on steroids now to reduce the swelling of the brain.  He is on 4mg every6 hours.  He is on the IPPI trial, which has stated they would allow only the low dose decatron for their trial.  His scheduled IPPI treatment woud be this coming Tuesday>

Some of the tumors have gotten smaller, but most have gotten larger.  Most of them are truning purple in color.

Can anyone suggust what we could do ?  The melanoma has met to the lungs, the liver and the brain.

Thanks fo all who reply - It;s been a busy week here in Maryland!

Nancy

 

 

 

 

 

 

 

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Nancy's picture
Replies 5
Last reply 8/28/2010 - 12:50pm
Replies by: Anonymous, Kevin from Atlanta, Nancy, lhaley

Buddy is in rehab now after his fall last Sunday morning at 3AM.  He was in hospital 3 days, transported to rehab center-which is closely  akin to a nursing home to me.  Anyway, his physical therapy is going fine.  He is sitting up now, couldn't before and he's transferrring from bed to wheelchair with effort.

My "now" concern, as opposed my 'now " concern later, =they are all important to me--Buddy's bowels are empacked-there is a large tumor which lays just beside the anus and is making the opening smaller.  We are trying a suposidory this evening.  Is the bowel empackment made worse by the tumore--its about the size of a golf ball-should I see about getting this tumor taken out of there, or try eminta - it's a rather dirty place, and I'll afraid of infection - are some suppostoris better than other? 

For those who have so graciously followed Buddy through this juorney, he had taken the frist 2 doses of IPI in Philadelphia, tolerated well, but those darn old brain mets returned.  He is on steroids now to reduce the swelling of the brain.  He is on 4mg every6 hours.  He is on the IPPI trial, which has stated they would allow only the low dose decatron for their trial.  His scheduled IPPI treatment woud be this coming Tuesday>

Some of the tumors have gotten smaller, but most have gotten larger.  Most of them are truning purple in color.

Can anyone suggust what we could do ?  The melanoma has met to the lungs, the liver and the brain.

Thanks fo all who reply - It;s been a busy week here in Maryland!

Nancy

 

 

 

 

 

 

 

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jag's picture
Replies 21
Last reply 8/30/2010 - 6:02pm

am going in for surgery on Tuesday for Craniotomy #6.  Sometimes I feel like it must be scary for new people to know that might be in their future, and so I hope this post doesn't end up causing someone to stop researching information regarding their particular situation and drive you away from the MPIP.  There are plenty of people who have had 1 brain surgery and done very well,  In my case my brain is very radiation sensitive, and so it is either surgery or necrosis, luckily last time it was necrosis(from previous SRS)and I am hoping the same results come through this time.  It has been 2 years since I have had any evidence of disease, and it has been four since I was initially diagnosed with a brain tumor.   So, if you are a newbie-this isn't a common situation and this may not end up being your situation at all.  Things may well never comeback if you are stage II or III.  That has been the case with many people.  If they do, address one issue at a time, and go from there.  First I thought melanoma was a death sentence, then I thought stage IV was a death sentence, then brain metastases were a death sentence, and so far none of that has proven to be true.  Don't read into the statistics whatever you do.   New therapies are coming out faster than ever, and more and more trials are adding up to improved statistics overall.  I am going into surgery with a very optomistic attitude, saying my prayers and there really isn't much else I can do.  Sometimes life gets out of your hands, there are some things one can control and some that one cannot.  Either way, keep on planning for the future and enjoy yourself.  When I first got diagnosed, I used to search this site and see tons of people dying and it scared me so much that I avoided scans as much as possible (sometimes to my own detriment) so whatever you do, remember, scans are your friends.  Even if there is a bad result, the sooner you get working on it, the better your outcome will be.

Best, 

John

Insert Generic Inspirational Motto Here

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Love_Monkey's picture
Replies 2
Last reply 9/3/2010 - 8:55am
Replies by: Love_Monkey

Hi all!  I'm hoping for some ideas and thought this would be a good place to turn.  I am starting a new project to help other parent's who have children that have been diagnosed with melanoma.  We found out Rachael has stage III when she was 5.  She's doing great now and is 11 month NED.  Yay!

There is SO MUCH information for adults but a virtual void of info for children.  I'm going to try to bring what little info we have to one place (I'll have a link to here of course!), answer some FAQ's along the way and most importantly CONNECT people to other parents.  Very exciting!

Please follow the link to my blog to help me come up with a name for my new project.  I'm going to be giving out a cool prize to the winner!  (Hint:  Coolibar)

http://iloveyoumorethanmost.blogspot.com/2010/08/next-step.html

Thanks for your help!!

Danielle

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shaz's picture
Replies 9
Last reply 8/29/2010 - 10:26am
Replies by: bcforce, Rocklove, vickirs, James from Sydney, Anonymous, molly

Started feeling slight pains in my lower back about 2 months ago and had been feeling slightly nauseous for some time too, explained both away with stress and studying too hard for my final exams. I then started having really bad pains in my shoulder and couldn't sleep at night. Long and short of it (and lots of poking and tests later) I have metastases to my liver, lungs and bones.

For the last 4 years it has been lesions and mets 'just in the skin', I never imagined it would come to this. I've started six rounds of dacarbazine, each round takes place once every three weeks and i've also started a bone strenthening treatment, zometa, which will be given indefinitely.

Anybody have any positive stories about recovery from this extent of mets? i would really love to hear some.... there are so much negative stories out there.

Could you also please advise about the treatment I'm on? Is this enough?

Thank you so much!

 

 

 

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Anonymous's picture
Anonymous
Replies 0

Sherron,

Saw a earlier post. I am so sory for your news. I hope things for you & Jim get better. I know this is a difficult time for you. Please keep us posted.

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Linda/Kentucky's picture
Replies 5
Last reply 8/30/2010 - 10:40pm

Just wondering about those of you who have finished the Ipi treatments how has your LDH have been?  My husband is at week 17 and we received his lab work yesterday and it had been going up since taking IL-2 but after his 3rd Ipi infusion his LDH was 1054 and yesterday 5 weeks after final tx.it was 1304 I know this is very high.  Clinical trial nurse said not to worry she has seen this happen before.  Starting to feel really discouraged.  He also found out he was anemic HGB 8.8 so we will try to find out the source of the bleeding could be from taking alot of Ibuprofen but it's the only thing that gives relief from aches.  Again I'm afraid he is not going to be a responder, but......it does take longer sometimes.  His scans showed no new mets but increased size of mets following Ipi treatment. 

P.S. He did get the hair depigmentation and vitiligo after 2nd tx.

 

Linda/Kentucky

husband stage IV

I can do ALL things through Christ who strengthens me! Phillipians 4:13

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Anonymous's picture
Anonymous
Replies 12
Last reply 8/28/2010 - 8:04pm
Replies by: paul, bcl, JoanR, ValinMtl, LizzieWA, Anonymous

My mom has been diagnosed with Stage 3C melanoma (6 lymph nodes affected, one extracapsular extension).  She had surgery, lymph node removal and radiation on the lymphs.  The original site never healed from the surgery (6 mos + ago).  Recently, little black spots started popping up between the original site and the lymph nodes.  At least 18 of them. We learned they are melanoma.  What does this mean for her? 

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MollyB's picture
Replies 12
Last reply 3/28/2011 - 4:30pm

Hello,

I am new to MRF and the Bulletin Board. I am a stage IV melanma patient with V600E mutation. For the last two years, I have had random subcutaneous lesions that have been removed by surgery but this June CT scans showed lesions in my lungs and back. Until now I have been very active and healthy. I applied for the La Roche study at Providence Cancer Center in Portland Oregon and was randomized to receive RO5185426. I started the drug August 9th and after 10 days on 960 mg/twice a day I had to stop the drug because of a raised rash over 95% of my body with swelling (especially in my face), joint pain and extreme fatigue. I waiting a deciision about whether to restart the drug and at what dosage

I am wondering what others on the study are experiencing.  Molly B

Each moment is precious, live them to the fullest

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