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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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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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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Sorry still new and over whelmed and reading these notes is getting me alittle scared of what  is coming. I have not let things get the better me in anything in my life so far but this has got me wondering what my chances really are, and is it  just  battle of prolonged loses. I keep seeing NED and SNB and I don't know what they are. I have had a  Biopsy; a brain scan, a cat scan and a pet scan and all say the cancer is in the neck and has not spread. But with all the reading I have done it is not really true only that it has not shown itself anywhere else. I have no real understanding of this yet and still learning. But I think I might need to leave this board as it does not improve my outlook. I plan on fighting this like I have other things in my life. I almost bled out losing 4.5 pints of blood during the time they found my ulcerative colitis and I was driving my car and was up and walking. This cancer has a fight  but I need more information. What site has answers and not the stats of possible length of life

Nothing is as important as this moment, Your life can be changed in a single Moment and you can live a lifetime in a moment if you believe

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skysar's picture
Replies 3
Last reply 8/26/2010 - 9:36pm

I am starting the IPI/Temodar trial next week at MDA.  I am grateful for getting into the trial at MDA with Dr. Patrick Hwu as my onc, however, I am feeling anxious the same way I felt prior to IL-2.  I have read many posts that the side effects are somewhat tolerable but I will 60 in a couple of months and have a very sensitive system.  Also I am concerned about the travel back and forth from Atlanta to Houston.  With this first treatment I am going to stay an extra day   in case of side effects.  

I check this board every day for positive comments, which helps me stay on track and focused.  I know there are a few on this board who are enrolled in this trial and would like to hear how they are coping.

 

Sue 

Stage IV 

 

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"New Treatment for Advanced Melanoma Shrinks Tumors"

Fron Reuters/MSNBC on 8/25/10

http://www.msnbc.msn.com/id/38854884/ns/health-cancer/#

 

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Niki's picture
Replies 1
Last reply 8/25/2010 - 8:34pm
Replies by: Niki

Just saw the news and NBC Nightly News with Brian Williams did a story on melanoma and the drug PLX4032 (I'm fairly certain that was the drug name). The story featured a 25-year-old woman who has advanced melanoma and has been fighting it for 5 years. After one month on the drug her tumors had shrunk by 50%. Anwyay it said that the drug is proving to be effective in melanoma that has a mutation that occurs in 60% of all melanoma cases. Dr. Keith Flaherty was interviewed in the story. He was VERY encouraged with the results--that such a large percentage of the melanoma population was showing such positive results. The story also mentioned ipi and suggested that both drugs might be given together at some point. Don't know if PLX4032 is only in trials at this point--they didn't really say. Very interesting and very encouraging. Those of you heavy in the battle--thought you might be interested in looking into it.

Best wishes,

Niki (Wife of Joe, Stage IIA)

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Tim D's picture
Replies 1
Last reply 8/25/2010 - 7:47pm
Replies by: washoegal

 

Slow 
Dance 

This 
is a poem 
written by a teenager with cancer.

She wants to 
see how many 
people get her poem. 

It is quite the poem 
Please pass it  
on.

This 

poem was written by a terminally ill young girl in a 
New York 

Hospital.

It was sent 
by

a medical doctor - 
Make sure to read what is in the closing statement 
AFTER THE 
POEM.

SLOW DANCE

Have you ever 
watched 
kids

On a merry-go-round?

Or listened to 
the 
rain

Slapping on the ground?

Ever followed a 

butterfly's erratic flight?

Or gazed at the sun into the 
fading 
night?

You better slow down.

Don't 
dance so 
fast.

Time is short.

The music 
won't 
last.

Do you run through each day

On 
the 
fly?

When you ask How are you?

Do you hear 
the 
reply?

When the day is done

Do you lie 
in your 
bed

With the next hundred chores 

Running through 
your head?

You'd better 
slow down

Don't dance so 
fast.

Time is 
short.

The music won't 
last.

Ever told your 
child, 

We'll do it 
tomorrow?

And in your 
haste,

Not see 
his

sorrow?

Ever lost 
touch,

Let a good 
friendship die 

Cause you 
never had time 

To call 
and say,'Hi'

You'd 
better slow down.

Don't dance 
so fast.

Time 
is short.

The music won't 
last..

When you run 
so fast to get somewhere

You 
miss half the fun of getting 
there.

When you worry and hurry 
through your 
day,

It is like an unopened 
gift....

Thrown 
away.

Life is not a 
race.

Do take it 
slower

Hear the 
music

Before the song is 
over.

------------ 
-------- 

FORWARDED 
E-MAILS ARE TRACKED TO OBTAIN THE TOTAL 
COUNT.

Dear All: 
PLEASE pass this mail on to everyone you know - 
even to those you don't 
know! It is the request of a special girl who will soon 
leave this world 
due to cancer.

This young girl has 6 months left 
to live, 
and as her dying wish, she wanted to send a letter telling everyone to 

live their life to the fullest, since she never will. 

She'll 
never make it to prom, graduate from high school, 
or get married and have a 
family of her own.

By you sending 
this to as many people as 
possible, you can give her and her family a 
little hope, because with every name 
that this is sent to, The American 
Cancer Society will donate 3 cents per name 
to her treatment and recovery 
plan. One guy sent this to 500 people! So I know 
that we can at least send 
it to 5 or 6. It's
not even your money, just 
your 
time!

PLEASE PASS ON AS A LAST REQUEST. 

10462 

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