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.

Expand/ Collapse Topic
Replies By
View Topic
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,


Login or register to post replies.

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

Login or register to post replies.

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

Login or register to post replies.

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?



Login or register to post replies.

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.

Login or register to post replies.

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".

Login or register to post replies.

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

Login or register to post replies.

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

Login or register to post replies.

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

Login or register to post replies.

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

Login or register to post replies.

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.

Login or register to post replies.

Joan C's picture
Replies 16
Last reply 10/12/2011 - 2:39am
Replies by: bcl, Donna, Anonymous, Joan C, Donna M., jax2007gxp

I apologize if someone already posted this, but I just read it.  I hope all the other states follow suit!

Login or register to post replies.

momof2kids's picture
Replies 18
Last reply 7/25/2012 - 7:46pm

I know many out there have never had any Brain Tumors, but others of us, like myself, have had Brain Tumors (One removed via Craniotimy , the other removed via Gamma Knife).

I'm assuming that having Brain Tumors/had Brain Tumors is worse than those out there who have never had any Brain Tumors.  Are getting Brain Tumors as easy to get as other tumors in your organs/body parts, or is it tougher for the cancer to travel to the brain, so if you are lucky enough to never get Brain Tumors, you're a lucky one, etc?

Are there any reports/data out there that proves having Brain Tumors in the past, or currently, that we are less likely to survive, than those out there who have never had Brain Tumors?  I'm assuming there is, but I'm still just stuck on this end of life rut I'm stuck in, wondering how many years I have left if I'm lucky, and if no new Brain Tumors come back to haunt me again.

I'm just not ready to accept living everyday happy as can be, happy to be on this earth, I'm still stuck in this I'm going to die before I'm 40 unless I'm extremely lucky.

I know there's plenty of Stage IV survivors out there, but did many of them have Brain Tumors, or were they the lucky ones to only have regular body tumors, and never touched the Brain?  I know none of us have control over how long we're here, but I am hoping that mine will be 10+ years, just to see my kids grow up, but I don't feel that the treatments out there will give me that (I'm BRAF negative, so right there I lose a few treatments/drugs).


Login or register to post replies.

deardad's picture
Replies 6
Last reply 10/9/2011 - 5:54pm

Hi just a bit alarmed that my dad found a swollen lymph node in his neck tonight after three weeks on vemurafenib. Two small tumors on his body have flatterned out completely but now we have found this lump in the neck? He did have a sore throat for a week before but everyone is so stressed out! Does that mean BRAF isn't working or are we just being overly worried? Im so over this stupid disease and its so heart breaking to see my dad and mum go through this...any information would be helpful please.

Daughter of the patient.

Nahmi in Melbourne.

Login or register to post replies.