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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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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davidroten's picture
Replies 5
Last reply 8/25/2010 - 10:13pm

We have finished our interferon treatments a week ago. The wife is experiencing depression now. She was depressed slightly during the treatments. Has anyone had this problem of extreme depression after the treatments were completed.

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Jim in Denver's picture
Replies 2
Last reply 8/25/2010 - 6:39pm
Replies by: Jim in Denver, Jackie W

Just wondering if anyone has seen or heard anything about Jerry in the last week.  I don't see anything from the last thread posted.   Last we knew, he was in Denver at St. Anthony's waiting for plastic surgery.  I know many of us are thinking about Jerry, and keep him in our thoughts and prayers.

Thanks,

Jim in Denver

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gpayne68's picture
Replies 2
Last reply 9/1/2010 - 8:53pm
Replies by: melanomafighter, Jim M.

Have not contributed to this board before, but I am a Stage III (7mm, nodal) melanoma survivor diagnosed in January 2010 with WLE, SNB, and LND surgeries shortly thereafter.  Took INF for a month plus three weeks sub-Q but off now for quality-of-life reasons.  All scans are clear but working to get my career put back together (aka unemployed) after this unforseeable disruption to my life.

The reason for this message is to plug an old book called "Man's Search for Meaning" by Victor Frankl.  It is a best-selling book from 50+ years ago that has sold nearly 100 million copies in English.  The book first came to me in my early 20's.  I knew it had important messages for me but, with little context in my own life, the impact was muted.  Cancer has changed all of that.  I re-read Frankl's text recently and it is filled with psychological help for anyone going through a potentially life-ending disease.

So, if you are struggling with the brutle psychological effects of Melanoma, please pick up this easy-to-read book.  You can find a lot of information on Wikipedia regarding Frankl's life.

Geoff - Indiana

Romans 5:2b-5 - …And we rejoice in the hope of the glory of God. Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not disappoint us...

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TimG's picture
Replies 7
Last reply 8/26/2010 - 9:45am

I am currently at NIH/ NCI in Bethesda going though TIL.    Friday Aug 27 is the day I get the cells infused and start IL2.  Should complete and be home Sept 9 or so.

 

If anyone will be at NCI let me know maybe we can meet.

 

Tim

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MACK under the knife's picture
Replies 8
Last reply 9/18/2010 - 10:51am

Went to the doctor with what I thought was swollen glands and now I have Melanoma and awaiting for them to get me into MD Anderson to get it removed. I don't have the stage but the PET scan says that it has remained in my neck. Anybody got a clue what I am facing the doctor seems to have abandoned me. It is very stressful

 

Mack under the Knife

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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Sherron's picture
Replies 9
Last reply 8/27/2010 - 2:04pm

Hi Everyone,

Well Jim is the one who did not surgery, No WLE, no SNB....he has only done many alternative treatments.  He was diagnosed 07-11-2006 with Nodudlar Melanoma.   He has felt well, actually wonderful, not missed a day of work, and is all about QUALITY OF LIFE, rather than Quanity of Life....2 years ago, he had a local recurrence, and he left it there for 1 year, finally getting it removed once the grandkids started asking questions.  The VA removed it offering scans and wanting to removed the 1 lymph node involved.  He still refused surgery or scans.  Well, the right cervical node is quite large now, is hurting some, with sharp pains and some numbness...could not sleep one night this week.  He appears okay today...He does have a new lump on the right side in the breast area,  Now on the opposite side of the neck I see a lump in the neck....one on his back...and one on the left side appearing some under some bruising area...I am just sick.  Obviously , this is spreading.  He has had 4 years and 1 month wonderful time.  If by some chance I could talk  him into  ANY KIND of systemtic  trreatment that had few side affects, what would it be,??? And I don't even know if anyone would treat him.  We have to go to the VA.  I don't even know if they have any treatments like the other hospitals.  I am grasping....at something , anything, a word from someone.  I don't even know (probably not) if I can talk him into some type of treatment , with few side effects that might buy us a little more time.  I am not asking for him.  He made his decision...I am asking for myself.  I need more time with him.

Thank you,

Take Care,

Sherron, wife to Jim

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Knutes Pam's picture
Replies 9
Last reply 8/25/2010 - 10:52pm

Knute's MRI shows the bleed, but no new tumors and no growth in the radiated tumors!  Yesterday new med or combination  gave him relief from the constant headache he's had since admission.  He slept hard for 2 hours and then "performed" in a variety of ways.  Practiced sitting, and the stood with help.  Repeating twice.  He was joking with me and remembered all his visitors while I was at work.

So this is a detour on the road to his next therapy not a dead end.  His mel doctors will push things back a month and we'll see if he is ready!  He has such a fighting spirit, although not a lot of patience so this slow regain of physical control will be challenge enough for both of us.

Pam

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Tracey FL's picture
Replies 1
Last reply 8/25/2010 - 3:24pm
Replies by: Anonymous

I am look for some one that has been in this trial.  I know mom is the first in Tampa.  In would really like to talk to someone.

Tracey

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Has anyone been on the trial PD-1.  I know mom is the first in Tampa.  Her cancer is spreading and I would love to talk to someone.

She will go for her second vaccine this Friday.

Tracey

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Linda J's picture
Replies 8
Last reply 8/30/2010 - 2:17pm

I just got back from Toronto.  I saw about five people, several surgeons who all think that I should do radiation first and then surgery.  The radiation is to "sterilize" the area around the tumor on my hip and hopefully shrink it a bit so the surgery will not be as extensive.  They will also be radiating my groin area at the same time and then I'll have a LND when the radiation is done.  The tumor on my side is just touching the muscle but not in it.

I am upset because the MRI showed that there are several lymph nodes involved and one of them is "deeper".  The deeper one is about 1cm.  Am I doomed because there are several lymph nodes involved???  Have other people had multiple lymph node involvments and still are doing well today??

They are going to see if the tumor in my side reacts to any of the the inhibitors so that hopefully I can do a clinical trial.

I am just so so so devestated right now.  I feel hopeless and I would really really like to hear that it is possible to survive a large tumor with multiple  and deeper lymph nodes involved. 

Please respond.  Thank you

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