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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Golda_'s picture
Replies 7
Last reply 11/13/2013 - 3:05am
Replies by: Golda_, Anonymous, Janner

Всем привет!

Надеюсь ваш браузер переведет мою тему.

Я с Украины. Моя мама больна меланомой. 2 года тому ей удалили родинку. Гистология показала меланому. 2 года никакого лечения не проводилось. Мама отказалась проходить курс химиотерапии.

На сегодняшний день у мамы метастазы в печени, позвоночнике и паховом лимфоузле. Очень быстро растут.

Единственное лечение которое сейчас есть - правильное питание и probiotic.

Я с братом самостоятельно изучаю все что связанно с меланомой. Несколько дней назад мы получили результат BRAF теста. 3 недели ждали результат (750 usd) Положительный. Купили 2 упаковки Zelboraf (2*3750 usd). В Украине не распространено медицинское страхование, да и дорого это. А для пациентов старше 60 лет еще дороже. Маме 64 года. Можем расчитывать только на свои силы.

Я готова купить или принять в дар хоть одну таблетку Zelboraf.

А так же я прошу Вашей помощи в приобретении этого препарата. Возможно в Америке он стоит дешевле? Я понимаю, что большинство из вас понятия не имеет сколько стоит этот препарат. Буду благодарна за любую информацию. Как купить? Где купить? How to return VAT?

original prescription не выписывают. Но есть заключение онкологической клиники с описанием диагноза и РЕКОМЕНДАЦИЕй принимать Zelboraf.

Так же, на этом форуме я впервые узнала о препарате Tafinlar.  Буду благодарна за любую информацию. Как купить? Где купить? How to return VAT?

 

Я верю, что еще немного времени и найдут препарат который сможет лечить эту болезнь как обычный насморк. Нужно только время!

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RAF kinase inhibitors have substantial therapeutic effects in patients with BRAF-mutant melanoma. However, only rarely do tumors regress completely, and the therapeutic effects are often temporary. Several mechanisms of resistance to RAF inhibitors have been proposed.

Continued here:

http://www.nature.com/nm/journal/v19/n11/full/nm.3392.html?WT.ec_id=NM-2...

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My last MRI show signs of early Leptomeningeal disease (brain tumors) metastatic melanoma. They want to do a biopsy of one of the tumors to make sure is LM disease before trating with standard protocol (radiation plus quimo)

Few questions:

Has anyone had this procedure? I'm a bit scare of it.

Is Zelboraf  or Temodar treatments good for a NON B-raf mutation patient?

Is anything left for me outthere besides radio-quimo?

Thanks

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Hi

I have read many post from people wondering when Merck PD1 will get FDA approval. Sadly, it seems like a long time to wait till 2015.

In this article Merck is stating the following:

"Merck said Sunday it plans to start late-stage clinical trials testing lambrolizumab in patients with a deadly form of skin cancer, melanoma, as well as non-small-cell lung cancer, in the third quarter. If all goes well, the company could file for regulatory approval in 2015."

http://www.marketwatch.com/story/merck-drug-shrinks-tumors-in-melanoma-p...

Denise, I know that you need this drug NOW! I would contact BMS & Merck.

I read in this article and other articles the names of some key Merck personnel working with the PD1 trial so maybe you can contact them for compassionate use.

I would mention in your email that you are aware of Nick Auden's petition requesting PD1 compassionate use and you want the SAME consideration for PD1 under compassionate use. I would also get your Doctors to support your request that you can benefit from PD1.

I am NOT sure that these are valid emails but you can try them.Here is the contact information that I found for these key Merck personnel working with the PD1 trial:

Merck Research Doctor-Dr. Scot Ebbinghaus    email:scot_ebbinghaus@merck.com

Merck VP-Gary Gilliland  email: gary_gilliland@merck.com

address:

Roger Perlmutter-President

Merck Research Laboratories
126 East Lincoln Ave
Rahway, NJ 07065-0900

 

Here is the contact for BMS:

Dr. Michael Giordano - michael.giordano@bms.com

 Les Enterline: les.enterline@bms.com

sarah.koenig@bms.com

 

Good Luck

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Anonymous's picture
Anonymous
Replies 4
Last reply 11/8/2013 - 1:50pm
Replies by: Janet Lee, Anonymous, Owl, DeniseK

So I started Temodar this evening.  I got sick almost immediately.  I think I will take it on an empty stomache or right before I go to bed next time.  I have a call into my gamma knife doctor to confirm they won't do gamma knife again so I can shop around for someone who will.  Basically they are saying that if the temodar doesn't work I don't have any options left.  IL-2 is out due to brain mets.  Dr. Minor says he hasn't had success with IL-2 in people with brain mets because it makes the brain swell and it's counter-productive.  I haven't researched this myself but I trust him as a specialist.  

I've been told to ask Merck for compassionate use of their PD-1 drug so I guess I'm going to send them a letter and hope they will help me.  

Has anyone heard of any FDA approvals coming soon?  

I guess I will know within a week if the temodar is working or not so it would be nice to at least have something to continue my fight.  

I have done zelboraf, mekinist/tanfinlar, ipi, WBR, SRS, and gamma knife.  Anybody with any suggestions is welcome.

Thanks so much

Denise

Cancer Cannot cripple love, silence courage, destroy friendship, shatter hope or conquer the spirit.

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Anonymous's picture
Anonymous
Replies 1
Last reply 11/6/2013 - 9:06pm
Replies by: DebbieH

I'm going to sit in the chat room for a while if anyone wants to chat about melanoma, or anything for that matter!

DebbieH

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NYKaren's picture
Replies 7
Last reply 11/11/2013 - 8:00pm

Hi everyone,

So I was on intermittent dosing of Tafinlar and I stupidly didn't start taking it again at the right time. we have no idea if those extra two weeks made some small tumors develop, but they did. 

Ten days later it was back for gamma knife (second time.)  I was the last case of the day and had  17, yup 17 tumors.  The actual gamma knife was two hours. Apparently when they're very small as these were, the  procedure takes a long time.  Thankfully they used anesthesia.  In at 7:00 am, out at 8:00 pm. 

When I had MRI last week, they found my ear is still clear and lymph nodes in my neck were all clear too. I seem to be having a mixed response thing going on.  My blood work is really good too.  Going to onc on 11/19, and neurologist/ onc are tapering my Decadron yet again. Between the depression,the weight and the leg pain, I'm more than ready.   Luckily when my brain started freaking out, I increased the dosage, so I know it was necessary...

I'll report in after my next onc appointment. 

Karen

Don't Stop Believing

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rebeccasilberman's picture
Replies 3
Last reply 11/7/2013 - 3:28pm
Replies by: rebeccasilberman, Anonymous, DebbieH

Hi,

My name is Rebecca. I was diagnosed with Melanoma in July. I had surgery to remove the nodule on my right thigh and a sentinal node biopsy. One of the nodes was positive for cancer.

I have been going to doctors and trying to fugure out what to do next. I am very aprehensive to do Interferon because I have a history of depression. I have been told by two doctors that BCG is an option.

Has anyone tried BCG and if so have you found any benefit?

 

Thank you!

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Hi all,

I am a melanoma stage 3 survivor. I started a cancer awareness company called WEAR AWARENESS to give back to those that are still fighting their cancer. Proceeds of every shirt sold goes to current cancer fighters for everyday expenses not covered by insurance. Things like co-pays, traveling expenses for long distance doctor appointments, etc. 

If you or someone you know is currently battling melanoma, go to www.wear-awareness.com and NOMINATE them. We need cancer fighters to give back to, and are excited to do so!

We have a melanoma designed t-shirt that is really cool. Our shirts are soft and durable. Check it out www.wear-awareness.com Below is a brief story of my melanoma, but you can find a longer version on my website. 

I was diagnosed a week after I graduated from college. I was 22. I had an immediate surgery to remove my melanoma which was on my back. The doctors biopsied a few lymph nodes in my right groin. I was devastated when they came back postive with cancer. I then had a surgery to remove all lymph nodes in my right groin. They had to cut a leg muscle and move it, then reattach it to reach all of my nodes. This caused my to not be able to walk for a month. I then did interferon for a month. I was the few 10 percent that lost over half of my hair from this treatment. I then decided not to continue with the 11 month treatment program.

THANKFULLY I have been cancer free for 20 months.

Thanks for reading! Prayers go out to everyone going through melanoma. I have been there...you will get through it and be stronger for that!

Casie 

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DeniseK's picture
Replies 7
Last reply 11/7/2013 - 3:27pm
Replies by: aldakota22, Anonymous, DeniseK, awillett1991, JerryfromFauq

Didn't mean to post anonymously

Cancer Cannot cripple love, silence courage, destroy friendship, shatter hope or conquer the spirit.

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Anonymous's picture
Anonymous
Replies 2
Last reply 11/6/2013 - 9:29pm
Replies by: NYKaren, casagrayson

Hey Everyone,
I had a pet scan last week and an MRI today. The pet scan showed several new lesions and growth of old ones. I was hoping the brain mri was at least stable so I could go into a trial but bad newsthere as well, I have 6 new lesions and some are bleeding. Since the mekinist/dabrafenib iisn't working its on to next treatment.....temodar. I asked if I could get gamma knife again and they said only if I'm having symptoms. Well of course I'm having symptoms, dizziness and headaches. My oncologist said its not reccommended to have gamma knife more than once. I thought that was WBR? Does anybody know how often you can have gamma knife?
Thanks for your help, I'm running out of options.
Denise

Cancer Cannot cripple love, silence courage, destroy friendship, shatter hope or conquer the spirit.

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Anonymous's picture
Replies 4
Last reply 11/7/2013 - 9:16pm
Replies by: Anonymous, Tina D, Michelem, Janner

I can't figure out how to do this on the new site

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Germer's picture
Replies 3
Last reply 11/5/2013 - 9:27am
Replies by: Germer, Janner, Anonymous

I was reading on BBC about a blood test that could potentialy detect the spread of Melanoma by looking for TFP12 markers. Has anyone heard of this or know anything about it? Does anyone know when it might be available either in trial or in the mainstream?

http://www.bbc.co.uk/news/health-24770207

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http://www.sciencedaily.com/releases/2013/11/131104112406.htm

Subtypes of Malignant Melanoma Invisible Yet Fatal

Nov. 4, 2013 — Scientists of the University of Ulm and Columbia University have discovered a diagnostic algorithm to distinguish two subtypes of malignant melanoma. Desmoplastic and spindle cell melanoma may look alike -- they often resemble little scars or retractions of the skin -- but differ in prognosis and therapeutic options. Sometimes even routine histology is not decisive because of partly overlapping features. The new algorithm, a combination of the biomarkers Melan A and trichrome, allows a diagnostic distinction of the subtypes.

I'm me, not a statistic. Praying to not be one for years yet.

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