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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jag's picture
Replies 7
Last reply 9/24/2010 - 3:08pm
Replies by: Tim--MRF, jag, Anonymous, Sherron

I have noticed quite a few questions on here lately about navigating the social security/medicare quagmire.  I have luckily never experienced it.

Is there anyway we can get a FAQ area for this topic?  

Insert Generic Inspirational Motto Here

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Sharyn's picture
Replies 13
Last reply 9/25/2010 - 8:15pm

Well, it wasn't as smooth sailing as I had thought. After having all the preliminary tests and scans last week in Montreal, my Dr there called me last Fri to tell me my hemoglobin was too low (7.6), and if I didn't get it up within 5 days, I wasn't eligible for the trial. So I had bloodwork done locally on Fri afternnon, hemoglobin was 8.0, but still not high enough. So on Monday I went in to the Cancer Centre to have a blood transfusion -- 2 units. Then, on Wed, I flew back to Montreal on a wing and a prayer, hoping that my hemoglobin had risen enough. Good news, it was up to 10.8, so on Thurs, we started Ipi at 11:30. I had no adverse events, walked back to the hotel afterwards (20-25 min walk), then went to the airport and flew home late last night. This morning I feel fine, and I hope it continues. I've waited a very long time to start this trial, with lots of detours (gamma knife, genetic profiling, mastectomy, etc), so I'm delighted to be finally underway.  I'll update as things move forward.

Hugs

Sharyn

Stage IV

ILP, LND, PV-10, hysterectomy, GM-CSF, WBR, SRS, mastectomy, and now Ipi.  

WLE, SNB, ILP, LND, PV-10, Uterine mets (Hysterectomy), GM-CSF, WBR, RT, Temodar, B-RAF negative, SRS (Novalis) to brain, Breast mets (Mastectomy), currently on Ipilimumab compassionate use trial Mets to brain, lung and sub-qs. Craniotomy.

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Lori C's picture
Replies 5
Last reply 9/24/2010 - 1:20pm
Replies by: Lori C, jag, Sherron, molly, KellieSue

Will's brain scan was clear, which was awfully welcome news.   He's tolerating the chemo well so far - this is round four.    In two and a half weeks, another CT scan to see how things are going....

Thanks for support and continued good thoughts.

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Marshipops's picture
Replies 3
Last reply 9/24/2010 - 11:03am

Hi, just thought I'd pop by and say hello!

I'm newly registered to the site, but sadly not to melanoma.  First dx in 1996, 1.2 mm melanoma removed from my lower back.  Naively thought that would be the end of it.  10 years later it returned to bite me on my ar*e once again.  Had large steak sized piece of rump removed but no further treatment.  A year later I discovered a lump in my groin, total groin and pelvis dissection followed.  Still no further treatment!  Currently on the observation arm of the Avastin trial and 2.5 years NED.

I'm loving the new look of the bulletin board, I never could get my head around how the how one worked, which is why I haven't joined up before.

Oh, and if you wondering what 3rd world country I live in not to have received any treatments, it's the UK!  Some of you may know me as Marsha from other sites... and this is the first time I've come across a place where my name was already taken!

Marsha x

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joy_'s picture
Replies 4
Last reply 9/23/2010 - 10:09pm

Hi MRF BB Friends,

My husband Bill will complete his 2nd week of high dose interferon tomorrow.  He's doing great other than the FATIGUE.  Wow... fatigue doesn't even describe it well does it?  Just curious approximately how long before this cr@p gets out of his system and he gets energy back after the last infusion. (He is not doing the 11 month self injections afterward).

Thank in advance for anything you can share.  Wishing you all the best in recovery and healing.

Tracy

wife to Bill, stage IIIc

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Tim--MRF's picture
Replies 20
Last reply 3/16/2012 - 7:14pm

Many of you saw the NY Times article this past Sunday, describing cousins, both with Stage IV melanoma.  They both enrolled in a clinical trial of PLX4032--the BRAF inhibitor by Plexxikon/Roche.  One cousin received the BRAF inhibitor and is doing well.  The other, who received the control, has died.

This raises a lot of questions about clinical trial design.  Our Scientific Advisory Committee has engaged in a very robust online discussion about this, involving about 150 emails!  I wonder what your opinions are on this.  Here are a few questions:

--Is it ethical for the control segment of a clinical trial to be a therapy that is approved, but is almost certain to be far less effective than the drug being tested?  (But, if you don't use a control, then how can you be sure the data are real and not because the patient or treatment team acted differently because they thought they were on a miracle drug?)

--If a person on the control arm does not respond to the approved drug, should they be allowed to "crossover" and get on the drug being tested?  (But, if you allow crossover, then the data for overall survival benefit is compromised, possibly limiting the future approval of the drug.)

--It seems clear that drugs in development right now are showing more promise that drugs that are currently approved.  If this is the case, is it ethical for a doctor to put a patient with metastatic melanoma on an approved treatment without first discussing the option of clinical trials?

If this post results in some robust responses I will work to get this input to the FDA and to the researchers and industry people involved in these trials.

Tim--MRF

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Terra's picture
Replies 1
Last reply 9/23/2010 - 4:13pm
Replies by: W.
Hi, I have a scan to send electronically to a different country for a second opinion - I sent through yousendit.com, but he is unable to open it I am wondering if I sent the wrong file.  These are the files I see on the scan when I open it up - does anyone know which one I should attach to the email to send him. 
 
3942
autorun
dicomdir
395596
command
readme
efilmlite
pacsube
dcvalid
dcsstart
 
Thank-you.

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jag's picture
Replies 2
Last reply 9/23/2010 - 9:21pm
Replies by: jag, washoegal
Insert Generic Inspirational Motto Here

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Sherron's picture
Replies 10
Last reply 9/24/2010 - 1:51pm

Hi...Just started reading about this...as Jim now has 12 enlarged lymph nodes or tumors....some days he feels good....some days bad....and he has had all these stomach issues and bloating....Just trying to figure out if he would qualify...He's 64...I am assuming he is stage IV now...with all this new stuff showing up withing a 4 week span...nothing new this week, so far.

 

Take Care,

Sherron, wife to Jim

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Anonymous's picture
Anonymous
Replies 1
Last reply 9/25/2010 - 2:15pm
Replies by: amybusby

Been praying that you get Braf..did you get it yet. Hoping things are stable & going well for you.

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Hi,

 

Curious how braf is doing for you. I read your past post. Hope you are still doing well on Braf since May...Please let us know how you are doing.

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If so, what was your experience and how did you handle the baseline testing,?

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JenC's picture
Replies 7
Last reply 9/25/2010 - 12:14am
Replies by: lhaley, JenC, jag, Sherron, Tim--MRF

My husband has been on the control arm of the BRAF trial, and as we expected the DTIC did not work.  We were obviously hopeful that he could have gotten the study drug and were willing to give the DTIC a shot, but I am now hoping that we didn't sacrifice precious time.  He went into the trial with maybe half a dozen subcutaneous tumors and is leaving it with spots in his lung, liver and a golf ball sized tumor in his face and constant pain.  Hopefully his participation helped further the FDA approval of the drug.

The next step is high dose IL2.

JenC

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Bruce in NH's picture
Replies 20
Last reply 10/2/2010 - 6:49pm

Hi Friends,

I haven't posted for a while but have kept up with those of you like me who are participating in the compassionate use ipi trial program (10 weeks of 4 ipi infusions every 3 weeks). I've completed the first 10 weeks and my CT scans showed slight reduction in tumor size for two tumors in my left lung and center chest. I have been trying to get rid of these sites since diagnosed Stage IV back in December, 2008. You can get more details by clicking on my profile. In any case, I hope my PET scans tomorrow show some reduction in activity level within the nodes.

My options going forward would be a repeat of the ipi 10 week trial; surgery to remove the nodes (very high risk due to placement in the chest) and BRAF testing/trial. Hoping for the best, and my thoughts and prayers continue for all who fight this disease, especially for those caregivers who recently posted after losing their loved ones. Collectively we will continue the fight for you and for our children and grandchildren.

Hope and peace to all,

Bruce in NH

Life is a journey, not a destination. Enjoy every minute of it with family, friends, and with others who may be ill and fighting melanoma.

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tsoemd's picture
Replies 1
Last reply 9/23/2010 - 10:58am
Replies by: SusanE

http://www.nytimes.com/2010/09/19/health/research/19trial.html?_r=1&sq=september%2019,%202010%20and%20melanoma&st=cse&adxnnl=1&scp=1&adxnnlx=1285174989-REekyEfISOM1TDxteT1XOQ

Please refer to the above link for the New York Times article that talks about this very promising drug called PLX 4032 - a highly selective V600E BRAF kinase inhibitor that is found to be effective in melanoma.  Unlike the study discussed in the NYT article, the study that we have will not randomize patients to DTIC (old chemotherapy regimen).  As long as the patient's melanoma is BRAF positive, they are given PLX 4032.  For more details, please contact Elisa Bomgaars, MD at 402-354-5860.  We are recruiting patients still but the study will complete accrual soon.

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