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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Anonymous's picture
Anonymous
Replies 0

Hi Jim,

 

Came across one of your all posts & wondered how you are doing with your decision to have scans early or continue with the drug you are taking at Angeles clinic.

Decisions are always difficult when it come to treatment but I know that you will make the correct choice for you.

Please keep us posted.

Wishing you the best

Douglas

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Lisa13's picture
Replies 13
Last reply 5/6/2011 - 3:57pm

I just got a call from my oncologist regarding my CT scan. They found some very small nodules in my lungs (up to 20) and my oncologist wants to have me do another CT in a month to see if they've grown in size.  He also wants his radiologist double check the scans as well as not all nodules are cancerous.  Unfortunately, this means I won't be able to participate in the ipi trial in Montreal.

Has anyone had nodules turn up that arn't cancer?  I'm really trying to hold it together until I have something to worry about, but this is incredibly hard.

Lisa

Many impossible things have been accomplished for those who refuse to quit

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I'm curious if anyone on Medicare has gotten Yervoy since FDA approval? I have found out that BMS does not have any assistance for those on Medicare. In calling Medicare, they cannot tell me if they can help. I was told they don't pre-approve, that my doctor's office can call an access number and talk to someone. I have a call into my doc's office and hope they will be able to find something out.

I was on the compassionate Ipi trial, which I finished Dec. 29, 2010.I have ocular and cutaneous melanoma. My first scan after the course was not good, with new liver lesions and lymphadenopathy. It was decided to scan again in Feb. My Feb. scans showed one less liver lesion and some reduction in a couple others, still lymphadenopathy. It was felt I was having an inflammatory response and that I also was eligible for re-induction, should I need it. April 7th scans showed decrease in hepatic metastases(now down to 4), decrease in multiple mesenteric metastases and retroperitoneal adenopathy BUT increase in size & number of mediastinal nodes. They're not sure if this is progression OR  Ipi/Yervoy doing it's thing. I'm scheduled for another scan May 24th. I'm hopeful, as all the abdomen STUFF looks better BUT am being pro-active in looking into getting Yervoy if upcoming scans don't look so good!

Thanks,

Nan

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teach's picture
Replies 2
Last reply 5/6/2011 - 10:57am
Replies by: dian in spokane, nicoli

I had an early melanoma removed in October  2007.  Recently, for the last month or so, the scar has become terribly itchy.  It is on my back, and I can't see it, so I had my husband take a look.  He can't see anything unusual, and he didn't feel any bumps.  I am somewhat concerned, since it has been so long since my surgery.  I just wondered if anyone here had had a recurrence with a symptom like this.   I am watching it, but don't want to be paranoid.  

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TracyLee's picture
Replies 1
Last reply 5/6/2011 - 10:45am
Replies by: KatyWI

Today is my radiation consult for "the plan".

What should I be asking? I am getting two second opinions before beginning radiation.

My melanoma is scalp centered, with neck involvement.

Thanks

Never will I leave you, never will I forsake you. Hebrews 13:5 Cast all your anxiety on Him, because He cares. 1 Peter 5:7 Stage IV 5/16/11 Ipi - 4 rounds May - July 2011 BRAF expanded access trial 8/8/11

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Shelby - MRF's picture
Replies 9
Last reply 5/6/2011 - 10:05am

Hello everyone! 

We have had several requests for some change regarding the viewing of posts on the bulletin board.  We were able to get a quote on making an internal change to the website so that users can sort posts by personal preference, either by last reply date OR by original post date.  This will hopefully help with the issues that have been brought to our attention.  The quote was just given to us but we have given them the go-ahead to make these changes.  Once we have an estimated date that this will go into effect, I will announce that in this message.  Thanks so much for your patience, understanding, and input and please don't hesitate to contact me if you have any questions/concerns regarding this change.  Have a wonderful day!

Shelby - MRF

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We just moved to Margate City New Jersey and need a great dermatologist for my husband.  We are willing to travel if necessary .  Any suggestions would be most helpful. 

 

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We just moved to Margate City New Jersey and need a great dermatologist for my husband.  We are willing to travel if necessary .  Any suggestions would be most helpful. 

 

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CLPrice31's picture
Replies 7
Last reply 5/5/2011 - 5:41pm

I am not sure if you all have seen this. It was brought to my attention on Facebook from another melanoma warrior. I posted it on my blog, on facebook, and thought you all would love to see it as well. One of the beautiful ladies in the video emailed me today and thanked me for sharing the video with others. I believe I can speak for all Melanoma Warriors in thanking her for making this. It is EXACTLY what we need to promote melanoma awareness!

http://www.youtube.com/watch?v=_4jgUcxMezM&feature=share

 

Share it. :-)

"The odds are that the...the odds mean crap. So people should face it, and they should fight." ~Grey's Anatomy. http://adventurewithmelanoma.blogspot.com

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How do you treat low platelets? Steroids are not good for melanoma. Anyone had a long term treatmetn for platelets?

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Carmon in NM's picture
Replies 2
Last reply 5/5/2011 - 3:08pm

It's been a long time since I had any fear or anxiety about seeing doctors so I was very surprised when I had a full blown anxiety attack yesterday about today's appts to see a neurologist and radiology oncologist to discuss whole brain radiation and radiation therapy at the adrenal tumor site. I ended up taking xanax for the first time in nearly two years.

I think what set me off was that I never expected to be NED again. I figured the best I could hope for was stable disease and that treatment decisions would be as easy as just continuing to move forward. Now here I am adjusting to having no measurable disease after a year of brain surgery, gamma knife surgery and chemo in a clinical drug trial so suddenly I have a whole lot to lose again. I'm just sharing this so that newer folks to this disease will know that all of us have our ups and downs, even after you've gotten the incredible news of being NED!

After my onc suggested WBR and radiation therapy as a prophylactic treatment, I dove back into the information stream and my husband and I have agreed to hold WBR as a last resort only. I have had no met activity in my brain for a year now so it makes no sense to us to take the risks of WBR as a preventative when there may be nothing to prevent. Plus, if I have active cells somewhere else in my body that later on migrate to my brain and throw a party again, then I would have lost that WBR option. So we are sticking to regular scans and hoping that if anything turns up, we can use gamma knife again to treat it.

I'm on the fence about radiation therapy to the adrenal tumor site though. It makes sense to me to do a prophylacic treatment there to make sure no stray cells are still living after chemo but I'm concerned about the affects to my body since the radiation would be happening in an organ intense area. So hopefully after today I'll have enough information to make that decision as well.

And just so you know, today I woke up happy, confident and with my sense of humor back intact again!

Carmon in NM - Stage IIIb 9/2008, Stage IV 5/2010 with brain and adrenal mets (craniotomy, gamma knife, clinical trial with carboplatin, paclitaxel, temodar) NED since 4/13/2011

Carmon in NM: Stage IIIB 9/2008; Stage IV 6/2010 with brain and adrenal mets; NED since 4/13/2011. It’s not what happens to you, but how you react to it that matters. ~ Epictetus

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boot2aboot's picture
Replies 13
Last reply 5/5/2011 - 12:41pm

I am curious to find out if anyone else got an initial diagnosis of IIIC? what treatments did you start? how were the results?

don't back up, don't back down

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I just wanted to share that after a year of battling melanoma my dad has gone to be with the Lord.  Things went down hill quickly after not responding to IL-2, and braf and then b-raf for brain mets. We were hoping to give ipi a try but there just wasn't time. He fought to the very end and so badly wanted to beat this horrible disease.  His father and sister also battled melanoma and passed away.  

I wanted to say thank you for this forum and the knowledge and information you all share.  I admire all those that are fighting melanoma and hope and pray that a cure can be found.  Continue to fight and never lose hope.

My dad will be missed tremendously by many but we know that melanoma know longer has a hold of him.  

Here is my blog where I pay a little tribute to him if you're interested:

http://wwwourunexpectedjourney.blogspot.com/2011/05/forever-in-our-heart...

Thanks again for all you do and stay strong!!!

 

Adrienne

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My wife was diagnosed with a 4mm melanoma on her neck in October 2010. She was misdiagnosed in 2005.  Can anyone tell me about the long term side effects of Intron A?

 

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Nebr78's picture
Replies 1
Last reply 5/5/2011 - 7:47am
Replies by: Vermont_Donna

i had strong doses of radiation on the side of my face and a lump on my chest.  Both lums are almost gone.  That has been 3-4 months ago.

I am now almost an invalid. I am weak all the time. 24/7.And I mean really weak.  At times my whole body will tingle and feel like it is numb.  My ankles tingle all the time.  I walk with a cane.  If the whole body isn't tingling, the weakness is from waist down.  I can't do anything.

 

Has anyone had this sort of side effect from radiation.  The Dr. said the 17-18 treatments were very strong.. I had golf ball size lumps.

Of course I am stage iv melanoma.

Doctors seem baffled.

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