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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Happy_girl's picture
Replies 2
Last reply 8/4/2014 - 1:09am
Replies by: Socks, brittanyx

I had been posting anonymously- but after encouragement from several people, I created a profile.  I am so thankful for those who has posted and shared their thought and opinions.  I feel like I am all consumed by my diagnosis right now and constantly afraid.... Afraid that I'll miss my baby girl grow up....leave my best friend.

* I believe next I will have a clnd.  My sln was originally said to be clear- but then 4 months later said to have a microscopic cell.  I'm so uncertain about what is coming next.

thanks for your thoughts!

~ also.... Thoughts on interferon???

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Anonymous's picture
Anonymous
Replies 2
Last reply 8/3/2014 - 8:18pm
Replies by: Ginger8888, Anonymous

I'm stage lllb and had surgery on the 24th of June to take a my lymph nodes out and was wondering how long you guys had to wait until starting interferon after surgery?

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Dear all,

I haven't written for a some time. While building a house, going back to work, taking a lot of responsibility in raising our 2 year old, my husband had also a hard time fighting this disease. In February it was clear that Vemurafenib couldn't stop it anymore, in April he started 6 weeks radiation to his parotis and neck (only lymph node mets were left after partial response of Ipi in 2012 and Zel and Vem for more than a year) while staying on Vem. May/June he discovered two more subcutanous mets in his axilla. Luckily EAP for Merck's Anti-PD1 started in Europe and after almost four weeks of waiting he received his first infusion. We are more than happy becaus the fear that mel could spread to more areas is big.

My husband received the first infusion last thursday. On the same day we noticed a reddish coloring ot the area of visible tumors in parotis and neck area. Until today the coloring has increased, the area feels very firm, seems to swollen, and the area is very painfull. My question, has anyone experienced this under PD1, especially right after the first infusion? We hope that this is a good sign but it is a little frightening. My husband had a similar but much more light reaction to Ipi.

My thaughts go out to all of you brave melanoma fighters.

All the best, Jenny

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arthurjedi007's picture
Replies 3
Last reply 8/4/2014 - 10:20am
Replies by: Maureen038, tcell

Just thought I would mention Siteman in Saint Louis via Dr Linette has Merck's EAP PD1 pembroluminab if anyone needs it.

We decided to keep going to Mayo for now though. Especially the next visit for the August 13th scan. This will be my first scan with it. So far they never have kept me on a medicine after it's first scan. I really hope they keep me on it. My Mayo doc says not to worry so I try not too. I do know 2 and maybe 3 Mayo docs will be looking at the scan and deciding. I leave it up to God and plan to have Dr. Rosenberg's number in my phone.

 

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Camila Navarro's picture
Replies 9
Last reply 8/6/2014 - 12:34am

My mom had this stage III melanoma, that reached 1 off the limphs. She already had the surgery to remove it and the limphs.

 

Now the doctor want her to use the interferon, and I've readen a lot about it, and would like to know about people that used it, about the side effects

 

Thank u very much

Mother have a stage III melanoma

 

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Gene_S's picture
Replies 8
Last reply 8/6/2014 - 11:08pm
Replies by: Momrn5, Anonymous, arthurjedi007, Gene_S, CHD, Ed Williams
 
------------------------------------------------------------------
 
Interview with Dr. Russell Blaylock
 
 
see page 7 for melanoma
 
 
 
 
Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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Hi,

I am 33 and I have a lot (30+) of moles that my dermatologist called nervi... something. Some are bigger, some are smaller.

A few of them are bigger than 6mm and a few have irregular margins. I never had one removed.

I go to a check-up every 5-6 months, and the question is always "have you noticed any change?".

Well I did not Notice... but what if I am wrong?

My dermatologist checks every one with a dermatoscope (I think it's called). 

 

My question:

Is he able to see the Danger / change / etc with that instrument? I worry that I was unable to notice a change in some, and... well I don't want to... you know.

 

Thank you.

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SarahW's picture
Replies 14
Last reply 8/13/2014 - 3:21am

I saw a post earlier this week polling people with NED after treatment of stage IV melanoma. So I thought to ask how many of you out there have stable non-progression of Stage IV  on this drug combo. My husband has been on it since February with stable disease as of July's scans.

Prior to that he was treated with stereotactic brain radiation surgery x 8 brain tumors on two occasions, Vemurafenib alone, and Vemurafenib + XL888(pre-clinical trial drug) and dabrafenib alone.

His energy level and skin color have returned to his pre stage 4 level on the dabrafenib and Mekinist combo

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Mat's picture
Replies 17
Last reply 8/16/2014 - 2:50am

One year ago today, I started on the GSK combo (Tafinlar & Mekinist) as my initial treatment following Stage IV diagnosis.  Just a few days prior, I had been rejected by the NIH for their TIL trial because I wouldn't survive it--heavy and aggressive tumor burden.  The clear implication was that if the BRAFi didn't work, I was toast.  That ride home from Bethesda was the longest few hours of my life.  My mind was racing.  The guilt of ruining the lives of my wife and kids (then 4 and 2 months), the regret of not having acted sooner on that mole taking a odd shape ten years before, the fear of disability and death.  I'm not sure which was worse--my tumor burden or the psychological burden!  

In any case, at that point, while I was relatively asymptomatic just a few weeks prior, I was fatigued, had little use of my lower left arm as a result of a bone tumor and had just been diagnosed with a brain met.  So, I started on the GSK combo, had the bone tumor in my arm radiated and celebrated my 40th birthday having a gamma knife procedure for the brain met.  Below is my initial post on MPIP just a week or so after starting the GSK combo.

http://www.melanoma.org/find-support/patient-community/mpip-melanoma-pat...

The GSK combo worked quickly--miracle drugs in my case.  They reduced my tumor burden dramatically and gave me my (new, melanoma-altered) life back.  (The radiation for my bone tumor and gamma knife worked too.)  In addition to the GSK combo, I've since taken my shot with ipi.  I'm probably not a responder.  My scans have been stable since ipi and I continue with the combo.  Although I'm far from NED (I still have 12 or so tumors in my liver), I feel fine--really well actually.  I lead a normal (melanoma-altered) life.  I work full-time, spend time with my family, run errands, go to sporting events, concerts, etc.

I'm certainly not one of those "cancer is a gift" people, but in some ways, this year has been one of the best years of my life.  Cancer makes everything so much more urgent and vivid.  I'm grateful for having had another year of watching my kids grow, of being with my wife, of being here for the simple things, like the change of the seasons, a great cup of coffee, etc.  I'm grateful for another year of work, of helping people, of feeling productive.  And, I'm grateful for feeling relativley well for most of this year.

I'm keenly aware that I'm now on the right of the median of progression-free survival on the GSK combo.  So, I try not to take anything for granted.  I read your posts (thanks for those--I continue to learn so much from you) and I continue to work on Plans B, C, etc.  And, I continue to enjoy my time.

Best, Mat

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robbylee's picture
Replies 8
Last reply 8/5/2014 - 12:29am
Replies by: robbylee, dnovak, Phil S, Anonymous, curious12

Our 15 Month old son was just diagnosed with Pediatric melanoma. Is there any information that outlines the possible causes of mlanoma in children this young?

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tcell's picture
Replies 9
Last reply 8/4/2014 - 5:44am

So I had another appt with my onc yesterday and we scheduled the first Ipi infusion for Aug 13.

the idea is to have about a 2 week washout for Mekinist which I stopped taking today. The I will stop Taf 5 days before the infusion and continue 3 days after each infusion again. So in reality it is a parallel treatment as 5 days is no real washout.

Due to my high tumor burden in chest / lungs, abdomen, liver and bones this may become a bumpy right  and if Ipi does not kick in within a reasonable timespan I run the risk of not making it. My LDH is 800 now.

next staging is only going to be after all 4 infusions as according to my onc it would not change anything. He did not want to make any statement on when to declare Ipi a failure and apply for the  Anti-PD1 EAP but stated that nobody could tell if I would be in the condition at the time to still be eligible.

all in all this looks like the start of a tough 3 months in a dark valley with the only hope that I will be able to celebrate my 36th on Nov 4.

if anybody has a better idea than what I have been planning now or any hints for my Ipi experience I would be grateful!

thanks to you all,

Chris

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Gene_S's picture
Replies 13
Last reply 8/4/2014 - 7:13pm
TY BOLLINGER GIVES YOU A GREAT LITTLE E-BOOK ON SUGAR

Just this week I got a copy of Ty Bollinger's latest attempt to help you with information.  He calls it "Sugar -- The White Death."  Most of you know that Ty is a fellow author on natural cancer healing.  His book is called "Cancer -- Step Outside the Box!"  You'll find this great four-page article from Ty about sugar here:

http://TheTruthAboutCancer.com/download-sugar-white-death/

If you want to know all the variety of sugars and the health problems they cause, please read this short e-book. 

 

 

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Anonymous's picture
Anonymous
Replies 11
Last reply 8/4/2014 - 4:42pm
Replies by: Anonymous, sweetaugust, JerryfromFauq, kylez, RJoeyB

I just learned that my wild type melanoma tumor has the NRAS mutation.  I have had one recurrence since initial diagnosis that was surgically removed.  I am stage III after the last tumor removal.  

What are some of the potential treatments for this tumor mutation?

Thanks.

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Anonymous's picture
Anonymous
Replies 6
Last reply 8/3/2014 - 4:07am
Replies by: Anonymous, Janner, vlmd1986

If a sentinel biopsy is done and there is no Melanoma, and then it returns years later in the lymph nodes does this mean you are stage 4?

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Anonymous's picture
Anonymous
Replies 3
Last reply 8/3/2014 - 9:27am
Replies by: Anonymous, vlmd1986, SABKLYN

Hi!

I'm hoping you all can ease my mind...Three years ago I was diaganosed with Stage 1b melanoma and I had a wide excision and moved on with life. I've been seeing a derm 2-3 times a year since then. In the winter time I was having stomach pain and a general dr sent me for a ct scan which revealed enlarged nodules the dr then suggested going to see an oncologist just in case my very early stage of melanoma had spread. Long story short my enlarged nodules have not grown so they do not believe there is any reason for metestatic cancer. In the meantime they did a shave biopsy on one of my moles last week...I called today for the results and they stated the results were negative but the doctor wants to review the slides before giving the all clear and said he wouldn't have the final results until monday.

 

Long story short does anyone know if its is typical for dr's to review the pathology slides? Also since it was just a shave biopsy and there wasn't much taken out can there be false negatives? I'm just tyring to figure out why if the results where negative why can't they give me the all clear...It's already been a week and I really hate having to wait any longer. I'm sure there's nothing to be worried about but I would love any input on this. 

 

Thanks :)

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