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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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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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!

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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).


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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.

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I am trying to do some research and writing on the clinical trial system  - specifically as it pertains to treating advanced cancer.  I don't feel Will, the person I lost to melanoma, was served well by the system, but want a broader range of opinions and views on it. 

If anyone could share articles, resources, opinions, experiences - I'd be most appreciative.  I'm doing work on a graduate degree in public administration and am doing it for this reason - and personal ones.  Please respond here or email me at


Thank you!

Lori, caregiver to Will, who has been gone a year on Oct. 6....

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Anonymous's picture
Replies 9
Last reply 10/10/2011 - 12:04pm

Have been dealing with Melanoma Stage 4 to Liver for over a year. Multiple traditional therapies and clinical trials attempted. Not much success. Anyone have a recommendation for alternative therapies such as supplements/health food items??

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jax2007gxp's picture
Replies 6
Last reply 10/13/2011 - 11:27am
Replies by: Anonymous, jax2007gxp, Vermont_Donna, FormerCaregiver

Hey all,

Hoping someone is home on a Friday night...last night as I was falling asleep I noticed what feels like a small but swollen, sore lymph node in the left groin.  I fell asleep and forgot about it until just now when I felt it again.  Could mel have jumped from the right side to the left and so quickly?  I just had scans on 9/6 which only showed the mel in the right groin and the LND was done just a few days later on 9/9.  I know there are multiple reasons for lymph nodes to get irritated, but I have rarely ever had groin ones swell throughout my life.

I see an oncologist for consult on Monday and my surgeon on Tuesday, but I think I am going to need some reassurance to get through the weekend.

Many thanks,


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