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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himynameiskevin's picture
Replies 15
Last reply 8/2/2012 - 12:00am

I've been suggested to stop Zelboraf for awhile as I have had more progression in my head.

After stabilizing my head via SRS or WBR,  think the idea is that I'll do IL-2 again or give Temador a shot, while getting back on Zelboraf.

I think I've decided my dose this morning will be my last for now and I'm just wondering, to those out there who were on it, but aren't anymore, are there any side effects from withdrawal you've experienced or I should know about?


Thank you for any information.


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Donna19702's picture
Replies 1
Last reply 7/31/2012 - 1:30pm
Replies by: gabsound

my son Michael was diagnosed with Spitzoid Melanoma Oct 2011, he's 27. He was stage IIIC, which the cancer started out as a mole on his foot then spread to his groin lymph nodes. 4 out 14 that was removed returned as cancer. He was only able to complete 4 months of the interferon due to severe weight lost, anxiety, fatigue along with others. His PET Scan came back excellent and was told that they would see if the Pharmaceutical for Pegylated interferon would approve him. If they denied his request they won't put him on anything. I feel that there has to be another treatment out there for him and they can not just say NO!


Could someone please let me know if you have any suggestions that I should bring up to his oncologist.



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nancyclay68's picture
Replies 4
Last reply 8/4/2012 - 2:46pm
Replies by: krissy424, Anonymous, aldakota22, natasha

As I await staging for the WLE I had on a positive punch for MM, I thought I'd pose a question.  I've heard rumors that birthmarks can or might sometime become melanoma.  I was born with two dark brown birthmarks, one on my inner left thigh and one on my outer right bicep.  In my thirties the one on my arm began to slowly disappear until it was gone by age 40.  Fast forward to age 44 and in 8 months I go from a tiny black dot (think ink mark) to a 6 mm wide black lump with red halo that came back MM.  Interestly, in the exact location of the former birthmark.  Coincidence?  Just curious if anyone else had an experience like that.

Prayers and peace to all battling Mel.


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mom3girlsFL's picture
Replies 6
Last reply 8/3/2012 - 11:53am

Hi All,

Haven't posted in a long while - just wanted to check in and share AWESOME news!  NED is once again a visitor in our home.  CT chest, abdomen, and pelvis clear as of yesterday!!!!  Almost 2 yrs NED now after radical groin dissection with lymph node involvement in late 2010.

Still get scanxiety, still waiting for our world to fall apart again, but trying to remain positive and hopeful.  Mel will always be in our life and some days are more difficult than others to cope but still hanging on!

Keep strong! Keep fighting! Know that you are all prayed for each and every night!


Do not fear tomorrow, God is already there.

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AllyNTAus's picture
Replies 5
Last reply 8/25/2012 - 7:21pm

Hi everyone,

I was just wondering what others taking either the GSK or Roche BRAF inhibitor are finding in relation to hair loss - I am in week 14 of taking Dabrafenib, and in the last couple of weeks I have really started shedding a lot of hair, luckily I started with very thick hair but I am wondering where this might end up. Talking with a friend yesterday, she suggested that if I had some idea I was going to have complete or near complete hair loss I could start getting a wig made now, I hadn't thought about that.

I know this might seem like a pretty superficical concern in the context of what everyone here is going through, but if you have any experiences you are prepared to share I would be grateful.

Best wishes to everyone


A bad day's fishing beats a good day's work everytime

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Valentine's picture
Replies 10
Last reply 8/10/2012 - 8:24am

Last night I found a lump the size of a marble in my left groin, just above the scar from the lymph node dissection I had 2 years ago. I can't see the dermatologist until Sept. 5. I am worried about waiting that long to have it biopsied. How fast does melanoma grow?

Because of the lymph node dissection, I have lymphedema. I use a Flexitouch every night to help control the lymphedema. Now I don't know if I should use it. If this lump is cancer, wouldn't I just be encouraging it to spread?

So, I'm just freaking out, and I have no one to talk to about it. I know there are no real answers to my questions/concerns, but I sure would appreciate some feedback on whether it would be a good or bad idea to use the Flexitouch for the next month+.



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TSchulz's picture
Replies 21
Last reply 8/3/2012 - 1:12pm

I am a little superstitious about sharing good news but since I look to this board for inspiration as much as information I have to share the news I received last week.

In May, I completed treatment at NIH on the randomized trial of TIL cells followed by IL2 with standard lymphodepletion OR TIL cells/IL2 with standard lymphodepletion plus total body irradiation.  I randomized to the arm of the trial that did not include TBI.  As many of you know, the treatment was very difficult but the NIH team was amazing and got me through it.  

I returned in June for my one month follow-up scans and received the news that my tumors had decreased in size an estimated 54.2%.  Huge news!   Then last week, at 2 months, scans showed they are approx. 70% smaller than before treatment and no new tumors were reported - equally important at this stage.  After receiving a big hug from my research coordinator she said that there was a lot of good news shared in clinic that day.  

I know my story does not end here but we are hopeful to see this trend continue.  This is the first good news (concerning melanoma) we've had in over a year so we are celebrating and looking forward to a brighter summer!

I wish all the best to everyone dealing with this disease - we need to see a bunch more NED in 2012.


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Maggie23's picture
Replies 5
Last reply 7/31/2012 - 6:08am
Replies by: LynnLuc, Maggie23, gabsound, Anonymous

My mother has been recently diagnosed with stage 4 Melanoma.  It is in her lungs and lymph nodes.  We have just received the results of the BRAF mutation and she is negative.  We are all confused about this and I am having a difficult time finding information online to tell us if this is a good result or a bad result.  All of these posts have been very helpful to us and I was wondering if any of you knew anything about BRAF mutations?

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My mother has been recently diagnosed with stage 4 Melanoma.  It is in her lungs and lymph nodes.  We have just received the results of the BRAF mutation and she is negative.  We are all confused about this and I am having a difficult time finding information online to tell us if this is a good result or a bad result.  All of these posts have been very helpful to us and I was wondering if any of you knew anything about BRAF mutations?

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rjcravens's picture
Replies 5
Last reply 7/31/2012 - 6:23am

Question- About a month and a half ago I had this upper resp infection that made its way around out house. Well, the upper resp. part improved but I had this awful cough that would not go away and was terrible at night or anytime I laughed and did any activity. So the week before last, I went to doc. (primary family) He said I prob had some stubborn brochitis and gave me advair, z-pak, and cough syrup. Well the cough is better. However, the entire time I have had this stabbing pain that feels like its between my lung and spineand has a lingering burn. When i cough it hurts terrible, but even when I am just sitting here this stabbing pain comes and goes. I tried aleve and nothing. But when I went to doc they did a chest xray when they dx the bronchitis. Wouldn't it have shown up on chest xray if something to be concerned about?

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deardad's picture
Replies 14
Last reply 8/6/2012 - 7:26pm

Sorry no news is good news at the moment.

I am loosing my dear dad, he can nearly no longer walk and his right arm is now going numb.

The damm flu has robbed him of sleep for 4 nights and taking away his final quality of life.

I feel ripped off and desperately sad.

I hate melanoma.

Nahmi from Melbourne

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Anonymous's picture
Replies 13
Last reply 8/4/2012 - 10:01pm

I recently had a very dark mole removed. I have lots of moles and this one definitley looked different. About the size of pencil eraser. I had punch biopsy and dr took margins and I received 4 stitches. She also talked about plaque. She called one week later and said they could not rule out melanoma so they are sending it on to expert in California. Wondering how worried should I be? Dr in California is the worlds leading authority on melanoma. Is this just for liability? Not sure what to think.

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bikerwife's picture
Replies 1
Last reply 7/31/2012 - 7:50am
Replies by: deardad

Had 5 mets removed from brain in feb sucessfully. Lastest scans show 2 more very small ones not sure if new are was there before and 2 little to see. Due to do gamma knife again in aug.

He is taking zelobraf and in four weeks all his visible tumors have completely disappeared. Hoping one inside chest cavity on one on kidney are shrinking also.

I'm worried. About doing gamma knife again but our dr assures us it will be fine and that they can get them.

What God leads u to he will. Lead you through

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Anonymous's picture
Replies 4
Last reply 7/30/2012 - 6:37pm
Replies by: rbruce, Candi13, LynnLuc, melmar

Hi Margo,


How are you doing on the Merck trial??? Any side effects?

I think that you mentioned your second set of scans would be in July. I hope that you found no cancer & NED.

My brother, was dx 2010-stage 4. He is on this trial in San Antonio. His last scans showed 50% shrinkage on 3 tumors- 2 lung, and liver.

It is nice to share info on these trials.

Anyone else on this Merck trial??/ Please post how you are doing so we can share hope & encouage each other.

Wishing everyone the Best.

Tim's Sister, Annie.

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