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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Lauri England's picture
Replies 8
Last reply 10/12/2011 - 9:10pm

The nurse from my doctors office called me with the CT scan results after I have called 3 times.  I was told I have a 3 mm nodual on my lung and my liver is showing abnormalities.  She said the doctor would go over this with me in more detail at my appt on the 20th.  I am freaking out.  The nurse did say that the doctor wants me to be re scanned in 6 months.  6 Months!!!!! Yeah right.  I need to know what my choices are.  I just finished a year of Interferon a month ago.  I know they are not sure at this point if it is Melanoma but I know going into this my scans were clear with no abnormalties.  Any advice would be appreciated.  Thank you and God Bless!

Don't sweat the small stuff. There are bigger fish to fry!

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Strongdaughter's picture
Replies 6
Last reply 10/14/2011 - 8:46am

My father was diagnosed with Melanoma in 1999. At that time he had a Clark's 4 stage IIB melanoma, I think. A couple of his lymph nodes were removed at that time along with a large excision from his back. He was clear all the way through his 5 year check-up. 

Fast forward to this year. About 3 months ago he was having some lower back pain that he felt might have been kidney stones so he went to his urologist and was cleared of that. The pain then migrated to his mid back on the left hand side and he felt that he really needed to do something about it because it was beginning to be unbearable. At that time a chest x-ray was taken and the results showed a mass. From there the accelerator pedal has been pushed to the floor. He went through the PET scan to discover that he had lesions all over his body mostly concentrated to his bones.  He also has cells in one of the lymph nodes in his chest. He is in Stage IV now. He has had a complication that we were not expecting; he broke the top part of his pelvic bone while rotating to get out of the car about 1 1/2 weeks ago.  Radiation was started yesterday so we are hoping for good results and possibly some pain relief from this process. He is BRAF-. He is also slated to start Yervoy sometime this week or next. The oncologist that he has is wonderful and I would highly recommend him to anyone in the Charlotte, NC area. His name is Asim Amin.

So now that you have a little background on what is going on I am looking for information from other patients or family members that have a similar spread of cancer. Most of the people that I have read about have a soft tissue spread. Also, my interest in this whole process is about my future. I have had 20+ dysplastic nevi removed and I am concerned about the chances of Melanoma happening to me. I am here for any information that anyone is willing to provide because I have a firm belief that knowledge important in a time like this. I will be passing everything on to my father and mother.

Thank you!

Knowledge is power!

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lhaley's picture
Replies 23
Last reply 10/16/2011 - 9:41pm

I am still shocked but news was bad.  Here I was thinking I had first a sinus attack and then the dentist thought I had a fractured tooth. Was actually scheduled for a root canal.  The receptionist commented during the phone  that it's just not normal that she hears from these symptoms from a fractured tooth.  The dentist had called in 2 others because she was confused. Life would have been so easier.  The PET was planned the next morning for my regular scan.  Called the oncologist and at 6:30 that morning the tumor was discovered.  It's fairly large, 2.15cm and is deep in the area of language/written/ and reading.  By that afternoon I was already loosing my words.  Totally in denial I'm thinking it was anxiety and bloodpressure.  

I had to wait for the appointment and the receptionist kept appologizing that there was an emergency.  Found out later it was because the team had already met. The nuero surgeon was in DC and already sent pictures. The radiologist was already called, I saw him just didn't know at the time who he was. The team worked quickly that helped us to deal emotionally. 

All appointments have been completed. Talked to many different of the oncologists I've talked to in the past. Even my mel specialist that is now retired from Univ of Penn has contacted me and gave me his thoughts.  I'm ready and on Monday I'll be having SRS.  Plan B will be a crainectomy.  They are only doing this 2nd because it is deep.  The Surgeon isn't daunted by his ability but also knows damage in this area can definitely happen.  He already knows how he will actually enter the area if needed to limit as possible.

I've been told that a single met has %80 success.  The hope is that nothing else grows. 

I'm offering the Caring Bridge if you choose to follow my story.  I hate melanoma.


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Happe10's picture
Replies 2
Last reply 10/12/2011 - 12:35pm
Replies by: Janner, mombase

So, you all don't know me, but I feel as if I know all of you. I have been following the board daily for a year and 5 months, since just before my diagnosis. I have never posted as I did not feel as though I have the right to. My melanoma was in situ, it was removed and I thought I was done with it. Mentally, it is not over and I am still very afraid. I have hundreds of moles and needed to know that someone else could help me survive this. I decided to do follow up at MDA. I live North of Houston. I have gone to my follow ups, have some lovely new scars and some fabulous full body shots to keep a lose eye out. So far, so good. All have come back fine. I am in good hands but am still trying to get my head on straight. 

Most people would have thanked God and moved on. Somehow, I have been stuck here. I have moved on with my life but part of me has been here with all of you. I think it is part of my heart, maybe a piece of my soul or maybe my innocence. I am not sure. I know that I am not the same person I was before melanoma. Something happened to me after my diagnosis. I changed. I have felt so many emotions over the last year following your lives. I feel guilty that I was so lucky. I want to understand why I am here and you are there. Why not me? I have been searching for the answer for so long. I have been watching from a far, celebrating your joys and crying at your loses. I have followed research and studied clinical trials. I have PRAYED! 

I will continue to pray for you and your families. I will pray for strength and peace as you battle this horrible disease. I know in my heart that a cure is just around the corner. So now I am going to say thank you to Janner. I am leaving the board now after reading your last post. Why am I still here? I wanted to make sure you are all ok I guess. I have been waiting to witness a miracle. I have read a few and they give me such hope. I have wanted to find that answer, why NOT me. I am starting to realize that I won't find that answer here. 

What I did find is a group of the most courageous people on the planet. Thank you for sharing your lives with me. I am so grateful for your knowledge, honesty and love for each each other. Your courage is unending and your compassion is inspiring. I am a better person for having found this board. 

With gratitude,


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j.m.l.'s picture
Replies 1
Last reply 10/11/2011 - 11:00pm
Replies by: kylez

Has anyone had a side effect from yervoy which led to intense buzzing in the ears and head? We cant seem to make the connection. This condition started 2 days after the second dose of IPI. Seems to be effecting left side of my head, ear, eye. Any ideas? thanks

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Melanoma pathways and targeted therapeutics. Several investigational agents designed to inhibit cell-autonomous melanoma pathways or augment antimelanoma immune mechanisms have entered clinical development. Proteins that have been targeted in melanoma clinical trials are indicated (red bars and bold arrow). The MAP kinase pathway (bottom left) has been targeted by RAF and MEK inhibitors, the PI3 kinase/ AKT pathway (bottom right) by TOR inhibitors, and the cell cycle by CDK inhibitors (bottom middle). Drugs inhibiting the Hsp90 chaperone protein may lead to degradation of several activated oncogenes (see text for details). The Bcl-2 antiapoptotic oncoprotein has been targeted by an antisense agent. Aside from IFN-α and IL-2, recent attempts to enhance melanoma immunotherapy include toll-like receptor agonists (top left) and CTLA-4 antibody blockade (top middle). These are predicted to generate a more effective T-cell-mediated immunotoxicity to melanoma cells. Strategies to interdict RTK such as c-kit may prove fruitful in the future against defined melanoma subtypes.


Best regards,

Jimmy B

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Staci's picture
Replies 3
Last reply 11/9/2011 - 11:20am
Replies by: jdramsey, SMS

My dad recently discovered his Ocular Melanoma has spread to his liver. He does not know yet to what extent although I have read some of the medical records and it seems widespread throughout the liver. He is being seen next week at James Brown Cancer Center in Louisville, KY. by Dr. Miller. Has anyone seen this doctor or been to James Brown for treatment?



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Anonymous's picture
Replies 4
Last reply 10/12/2011 - 3:18pm
Replies by: barb3246, Hereiam, Janner

I have been really worried about a pink lesion on my upper arm that has been there for 3 months since I had my WLE for an in-situ on the same arm, so I finally called to see if there were any cancellations, and surpisingly they took me last week. He completely removed 6 "interesting" looking moles via punch, and took a punch biopsy in the middle of the red patch on my arm, so a total of 7 biopsies. YIKES!!  He made some comments about "well this one has fuzzy borders", and "this one has an interesting shape", and "that one is very dark". He wouldn't commit to what he thought the pink lesion was, just that "it could be anything". Of course I have already decided that it must be an amelanotic melanoma!

I'm not sure if any of the moles that he removed have changed or not. I never really even noticed a couple of the ones he removed. Several of them looked like the in-situ, which actually didn't look too scary anyways - it was just a small flat mole that was a bit darker than my other moles. Nothing that really alarmed me, so that's why I am worried. I have LOTS of weird looking moles on me. I have had probably 30 moles removed over the years, and most have come back as mild-to-moderately atypical. One was severely atypical, and the most recent was melanoma in-situ. Maybe he is just being extra cautious, which is fine, but I wish he had said something reassuring to me so that I wouldn't be so worried.

Now I'm a nervous wreck!! All I keep thinking is, what if some of these turn out to be melanomas too? I wonder how common it really is to develop multiple primary melanomas.  I've read that its around 10%, but it seems like a LOT of people on this site have developed several, so it seems like maybe the 10% is low.What if I'm not so lucky this time and its more advanced than in-situ? How do I learn to live with this constant fear??????? I really need to get a grip.

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nickmac56's picture
Replies 7
Last reply 10/12/2011 - 9:51am

A new chemo regimen for her. She's pretty beat up from her recent gammaknife treatment for the five brain tumors and the removal of the golf ball size tumor on her arm. But she knows she needs to try this. She's not thrilled about the upcoming hair loss to say the least. But if this treatment buys some time and gets her through the holidays she will be happy. Supposedly it is not as side effect laden as more typical chemo treatments - fatigue and hair loss being the notable side effects.

Her motto: "Don't wait for the storm to pass, love dancing in the rain".

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deardad's picture
Replies 3
Last reply 10/12/2011 - 8:00am
Replies by: Anonymous, deardad, FormerCaregiver

Any suggestions for next plan of attack after BRAF not working?

After 3 weeks on Vemurafenib my dad has developed a egg size lump in his throat and is having scans this Monday. What do we do if they take him off this drug? Hes 64 with liver spleen and prior craniotomy. Not sure if theres anything going on up there yet. Any experiences after BRAF would be great. Thanks.

Nahmi from Melbourne

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NYKaren's picture
Replies 3
Last reply 10/13/2011 - 4:24pm
Replies by: KatyWI, MariaH, rbruce

So, for those of you who've done IL-2 and gotten the itch (real bad), when does it go away?  Today starts week 3 from the start of the second week treatment.  I can deal with stuff still happening, but I'm living from Atarax dose to next Atarax dose.  50mg/dose, along with Doxipin, which is supposed to help.

Oatmeal baths feel great (especially when they're hot (a no-no)) followed by Sarna creme is a great fix for about 10 minutes.

Anyone else have any secret cure?

I can' wait to get scans--almost all the mel crusted under the aldera creme and most of it is off (leaving pigment behind) 

I'm so hopeful, I don't want to get shot down!



Don't Stop Believing

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jim Breitfeller's picture
Replies 22
Last reply 10/12/2011 - 5:46pm

So before you try PLX4032 (ZELBORAF/Verurafenib) as one of your trials if you are BRAF+, You may want to look into a BRAF + MEK trials first.

"Acquired resistance to BRAF inhibitors mediated by a RAF kinase switch in melanoma can be overcome by cotargeting MEK and IGF-1R/PI3K" -Dr. Meenhard Herlyn

There is also some new out about  BRAF inhibitors + Metformin.

Best regards


Jimmy B

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TracyLee's picture
Replies 6
Last reply 10/15/2011 - 5:26pm

Hi y'all,

Just found a painful lump in my breast last night. Ironically, saw my gyn last week and he missed it. It's more pronounced sitting up, and he examined me lying down.

I'm on BRAF, and have responded very well. I do get ereythema nodosum (painful lumps) as a side effect.

I'll call both Yervoy and Zelboraf patient info lines asap today. I feel I'm in the wilderness: just released by U of Penn to my local onc. And I'm the first HE'S  treated with either drug.

How much do I panic, and how much is likely to just be a side effect?! I'll call the local onc, as I'm due for scans, and I'll call my gyn for a mammo (which I'd told him I wanted to skip, frankly).

Have their been folks with BOTH breast AND melanoma on this board, with both cancers active at the same time?

My head is swimming!



Never will I leave you, never will I forsake you. Hebrews 13:5 Cast all your anxiety on Him, because He cares. 1 Peter 5:7 Stage IV 5/16/11 Ipi - 4 rounds May - July 2011 BRAF expanded access trial 8/8/11

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James from Sydney's picture
Replies 2
Last reply 10/12/2011 - 8:16pm
Replies by: bcl, JerryfromFauq

Researchers find 2 new Genes which might one day assist us in predicting the risk of getting Melanoma.

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