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
Replies 3
Last reply 8/29/2012 - 2:12pm
Replies by: dellriol, Anonymous, jmmm

I've been on Zelboraf for several months.  I know that others have talked about diarrhea as one of the side effects.  I haven't had any stomach issues with it (except for things tasting weird) but the last few days I've experienced diarrhea.  

What have your doctors told you to take if this happens?  Any suggestions?  I'll reach out to my doctors also.  In the mean time I'm making sure I drink lots of water and other liquids.  No stomach aches or nausea with it.  A little bloating but no cramps.  Just a gurgling stomach. 

Thanks! "people will forget what you said, people will forget what you did, but people will never forget how you made them feel' Maya Angelou

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mama1960's picture
Replies 6
Last reply 8/29/2012 - 1:26pm

Needle biopsy on lymph node in right groin came back positive. i have appointment with surgeon in Thursday to discuss lymph node dissection. Oncologist says we will follow up with radiation. So it's official....I'm stage 3. I have been looking at threads regarding the dissection, and it looks doable. if any one has anything to add, please jump in.

It is what it is.

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Needle biopsy on lymph node in right groin came back positive. i have appointment with surgeon in Thursday to discuss lymph node dissection. Oncologist says we will follow up with radiation. So it's official....I'm stage 3. I have been looking at threads regarding the dissection, and it looks doable. if any one has anything to add, please jump in.

It is what it is.

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spdg4412's picture
Replies 5
Last reply 10/22/2013 - 12:16pm

New to the board but I thought I would post a my relative's success story to offer some hope to others going through melanoma.

My relative is a male aged 76 years in good health who had a small 'pimple' like mole removed from his face in October 2011. On biopsy, it was diagnosed as melanoma and measured at 2.5 mm in depth. He then had a large excision of the area and had clear margins. He also received a baseline PET scan with no metastases found.

In May of 2012 he had a follow-up PET scan and they found 2 small metastases in his lungs, so he was staged at stage 4. The mets were biopsied for cellular analysis and they did not have the BRAF mutation. After a couple of weeks he began infusions of Yervoy (ipilimumab). He received all 4 infusions about 3 weeks apart each and he had minimal side effects, very limited rash and a little itching, some mild stomach upset, felt cold quite often and also was irritable. Other than some anti-nasea medication, he had no treatment for these symptoms. His doctor was optimistic because these mets were caught relatively early and were still small although I don't know the exact size.

Last week, he had a another PET scan and it showed that the metastases were no longer detectable on the scan!!! Needless to say, he and his family are overjoyed and this result. He does not yet know about follow-up and any potential maintenance treatments. To all around, this has been an amazing development. I'll update when I get more information.

I hope this helps someone out there going through this terrible cancer.

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Is anybody currently doing the trial of Zelboraf and Yervoy combined?  If so, have you had positive results?

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GraemeL's picture
Replies 21
Last reply 9/3/2012 - 8:00am
Replies by: GraemeL, Ashykay, LynnLuc, JerryfromFauq, lhaley, NYKaren, Anonymous


My wife Susan was diagnosed with Stage 3 melanoma in July 2011 and had the lymph nodes in her left groin removed.  Subsequent scans were clear and BRAF negative, so she had interferon which almost killed her.  Two weeks ago on August 13 Susan had a CT scan after having headaches.  A large 31x27x22 mm growth was found in the cerebellum region of her brain.  Growth was very rapid as she had a MRI scan of her brain on March 20 and this was clear.

This melanoma was surgically removed on August 15 and Susan is having 10 sessions of whole brain radiotherapy.  My concern is that melanoma cells have now quite likely spread from the brain to other parts of her body.  Her oncologist says that she cannot go back on interferon and that there is no other treatment available.  I have asked about ipilimumab but he thinks that this is not appropriate.

I would appreciate comments on the best treatment options.  It seems sensible to attack this melanoma now before it gets a chance to establish itself again.  If this highly aggressive melanoma starts growing again Susan's life expectancy could be quite short.

Kind regards,


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KMT2003's picture
Replies 9
Last reply 8/28/2012 - 9:01pm
Replies by: KMT2003, Cate, Anonymous, King, Tina D, dellriol, LynnLuc

Well I have only been a member for a month or so but have been dealing with melanoma since 2007. Please read my profile to get my story. On Thursday I went to Moffitt to do the prescreening for the clinical trial I was supposed to start tomorrow. I did the MRI, CT scan, blood work and all that jazz. We then met with Dr. Kudchadkar to go over results that afternoon. She came in will bad news... I can't do that trial anymore because the found some new areas of concern in my bones. Pretty sure it is melanoma... What a shock for me and my husband. The tears started flowing and I am not sure I heard anymore that she was telling us. I was scheduled to do an MRI locally tomorrow but it got rescheduled due to insurance not approving it yet. On Wednesday we will travel back to Moffitt to have the bone biopsy now and they are in the process of testing me for BRAF. Once we get all the results we will start a treatment plan. There are still some trials to do. It is just so overwhelming and scary. I am young with a wonderful husband and two small children so I'm scared to death that I won't be around for them. I also forgot to mention that in area of the new areas I have been having a dull pain for the last two weeks but never thought it would be related....


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Jamietk's picture
Replies 5
Last reply 8/27/2012 - 2:38pm

Yesterday was my 7 year anniversary since my melanoma was removed. I assume I am NED. Not having any issues. Will see the Dr. at MDA on Nov 5th. Hope this gives some encouragement to others.

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MattF's picture
Replies 4
Last reply 8/27/2012 - 1:06pm

On 16 July I had my shave biopsy of a 1cm wide, thickness unknown but atleast 1mm Malignant Melanoma from my chin at base of my ear.

I am waiting to get in to have Wide Excision and SLNB.

My question is could the Melanoma have grown back in at the shave site? I could have sworn it was clean the day or so after the Dermatologist shaved it off, but now i see little brown parts in and around the area.

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Mickey n Jo's picture
Replies 6
Last reply 8/28/2012 - 2:01pm

Hi, my name is Jo and I am writing on behalf of my husband, Mickey. He was diagnosed as stage 4 melanoma in May 2012

and was put on Zelboraf within a week.  He's had all the usual side effects, nausea, hair loss, joint pain etc., but now

he is experiencing memory problems. He can't remember certain names or words and it's scary for him which creates

anxiety ( which he suffered from already). He had a brain MRI which came back OK, no mets. He also had a spinal

tap a week ago to rule out infection, but haven't gotten results yet. We were wondering if anyone else has had this

problem while on Zel.

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Snickers60's picture
Replies 8
Last reply 8/27/2012 - 7:23pm

We are 4 months downrange since Wayne started Zel.  He has just lost his eyelashes and most of his eyebrows.   He's very rlight anyway, but this has really given him the CHEMO LOOK !    He still has some hair, though looks a little like Kelsey Grammer or Jack Nickolson I tell him.   He looks like Jack a lot anyway but a lot better looking.  :-))  

He now looks SICK is what I am saying !    He is not a VAIN person, but has turned to caps for the weekend and I've found this fantastic oil for his skin, so it doesn't look or feel so THICK anymore.  

I understand that LIFE is the important thing - not vanity, but like everyone, this has it's challenges for work etc., and is hard reminder.

Did you all lose your eyebrows - eyelashes also ?    Too bad for men - no scarves - no wigs - no makeup.     I try pampering him a lot and giving him skin treatments etc. to help his overall grooming and feeling of self esteem and not LOOKING SICK. 

What's your experience ?

Nancy (devoted wife of 3 X Warrior Wayne) 

Matt. 15:13 "Every plant that my Heavenly Father hath not planted shall be pulled up by the roots". "With God all things are possible" ! Keep the FAITH !

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kbrenner's picture
Replies 33
Last reply 9/17/2012 - 11:52pm

Hi all,

I was diagnosed with melanoma just under 2 weeks ago.  My dermatologist has had melanoma herself twice and assured me I'd be alright.  I had a mole removed from my scalp that was .3 centameters and she got me immediately in to see a plastic surgeon who they say is excellant.  Heard nothing but good things about him.  I know this is something I can not mess around with and need to get taken care of ASAP.  So I'm all set for surgery on Sept 10th.  They will be taking a skin graft from my leg for it.  Of course shaving the area on my head, I've always had very long hair so that's a change in itself, but the least of my concerns.  My concern now is am I making the correct choice, or should I be trying to go to the MD Anderson Center?  My Dr. mentioned the Moffit center in Tampa (I live the on the east coast of FL)  But she did not think it was necessary.  I've been reading some of the postings and it sounds like the MD Anderson Center is the place to go and I checked my Insurance and they are a prefered provider.  I do hate to delay, so I'm thinking I should go ahead with the surgery and if needed later follow up with MD Anderson, but I really don't know what to do.  My Derm. has been really supportive and since she's been through this before I feel good about what she tells me and try to stay positive.  However there are still  times I'm afraid it's going to end up being much worse and am worried I'm not going to be around to watch my beautiful little granddaughter grow up.


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Hi everyone, I've been reading all your posts since my boyfriend was diagnosed march 9, 2012, thought it was time to finally make an account.  I have learned so much here, and am very grateful that you take time out of your day to post your experiences.  Just wanted to say hi, and i hope everyone is feeling good today, and will do so for a long time!

Like i said my boyfriend is the patient. Diagnosed Stage 4, no primary on March 9th, 2012.  He just finished yervoy.  Nothing getting bigger, but not shrinking.  I filled out the profile (i know you all want the newcomers to get that filled out).  Also, he has all over body rash right now and itching like crazy.  He had a small rash just on his hips for a few weeks, but after his 4th infusion rash has gone crazy, as well at the itching.  Benadryl helps some though.  Any questions id be glad to answer. 


"Give thanks in all circumstances"

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Hi Kevin,


I have not been on the board for a few weeks and trying to catch up.

Have  you finished your WBR...any side effects?? I hope you are doing well.

You are such a strong young man. I pray you & Brenda have a life time of health that takes you on  wonderful adventures.

God Bless You.



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