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 8/27/2011 - 11:29am

I'm 3 yrs Ned from being diagnoses stage IIIa.
Just had an abnormal pap this something I tell my oncologist about?...or just wait 6 months til it's retested?

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nickmac56's picture
Replies 4
Last reply 8/27/2011 - 1:04am

We met with the radiation oncologist who is planning the treatment for my wife's spinal tumors. It's pretty amazing actually. We'd all love to find a systemic cure for melanoma, but in the meantime cut and burn is a way to extend life, often at reasonable quality of life. We were told my wife's spinal tumors we essentially untreatable, and a couple years ago they probably were (which would have led to debilitating pain and loss of lower body function). But now, with this new radiation equipment, they can fry enough without impinging on the spinal cord or other organs to buy her some good time (we hope). She has 12 identifiable tumors in the epidural space from her ribcage to lower vertebra and one in the tailbone. But the radiologists said that the entire area was likely cancerous, like a coat of sugar on the walls of the epidural space. Cyberknife is too precise, it could only hit the identified tumors. But the Tomo therapy radiation can hit the entire length without damaging the cord or organs - it's not precise enough to do a tiny tumor but not so big it causes damaage beyond what is intended. I think it's just incredible the advances they are making in this area. 

She is going to do 15-20 treatments over the course of the next 3-4 weeks. The key question is how much of a dose to the area - he wants enough to do the job (recognizing melanoma's alleged radiation resistance) but not so much it is toxic to area. And you only get one shot at this area - if there is any recurrence it can only be treated by a Cyberknife spot treatment. He's shooting for a total dose of 3,750 Gy. 

Side effects are expected to be pretty minimal, aside from fatigue. Unlike the old external beam radiation the way this works it avoids large doses to the organs so your stomach and intestines don't get all screwed up.

So our attitude has changed from being pretty morose to being somewhat more optimistic - that she can buy some time and good quality of life. It even got her thinking about the holidays  - that she might be around to enjoy them!


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

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Lisa13's picture
Replies 1
Last reply 8/26/2011 - 3:49pm
Replies by: emilypen

I've had a hiatal hernia and acid reflux for years. I just started Yervoy 2 weeks ago and both of these conditions have worsened. My acid reflux is so bad today that I'm dizzy, nauseus and have burning in my chest. 2 of these symptoms can be side effects of Yervoy, so I"m not sure which one it's related to.  That being said, does anyone whose been on or is currently being treated with Yervoy experience any of these symptoms? Especially if they had prior stomach issues.

Lisa - Stage 4 lung mets

Many impossible things have been accomplished for those who refuse to quit

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hoffmana1's picture
Replies 4
Last reply 8/26/2011 - 11:24am

My husband is a stage IV 13 year survivor.  His story is complicated, as he never received adjuvant therapy due to a second diagnosis of sarcoidosis of the lungs. Anyway, all has been well and though he is short of breath lately, I just noticed two very dark red/purple "blood blister" type spots on the underside of his scrotum. Is this something else, or could it be melanoma again? Has anyone else experienced getting mets so far out from the primary diagnosis? Is this even possible?

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glewis923's picture
Replies 9
Last reply 8/26/2011 - 8:02am

After i completed 7 SRS (Novalis TS) and WBR  4 mths. ago, then Yervoy i finished in mid-May;  I'M ALIVE !    still no telling which brain tumors are completely dead or what, but no "meaningful" new ones.  My speech sounds like Donald Duck - Drs. don't really know why except possible brain stem pressure or lung tumors have all shrunk a tad and definately seem to be stable- as brain too.

Next week I start the Roche Vermufumib (now whatever it's called-raf)  still PLX 4032.  I cannot praise my local small-town oncologist enough for helping me weed through things- ie.:  the "big" know-it-all hospitals/ Drs. who know /control all but tell you very little at times, but  control your destiny!   

Anyway, Very HOPEFUL and grateful that I've been given a 3rd or 4th chance (lost count).   Wishing ALL of you the best.

Love from Grady Lewis Family.

I'm Here for Now, I've got the rest of my life to die; and if so, old age could be overated and God does exist.

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JerryfromFauq's picture
Replies 11
Last reply 8/26/2011 - 3:20am
Has anyone seen exactly what " Zelboraf" was FDA approved for.  The write ups on the approval that i have seen refers to THE BRAF mutation.  
      As many of us know there are many BRAF mutations and Essentially all of the (
Plexxikon, Roche/Genentech) PLX-4032 trials were limited to one BRAF DNA mutation (V600E). 
     One question is what will insurance companies cover if one has another of the BRAF mutations and wants to try the Zelborat off-label for their BRAF mutation?
     People also need to be aware that
Roche/Genentech's BRAF test states that one is BRAF negative if one has a different BRAF mutation than the V600E.  They should state that one is V600E negative or should test for all know BRAF DNA mutations.
I'm me, not a statistic. Praying to not be one for years yet.

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MariaH's picture
Replies 9
Last reply 8/26/2011 - 2:10am

My husband Dave goes in for IL-2 on the 29th.  According to him and his doctors, there is no need for me to be with him for the entire duration, although the hospital will allow me to stay.  We do have 3 children at home, so to be there would require some advance planning.  I am torn between staying with him, and being home with the kids.  I really do not want to leave his side during treatment.  His reasoning is that I need to be home with the kids and continue to work that week and to try to keep things normal.

Can you please let me know what your experience was?  I have the IL-2 list from Jane, and I know it says to have somebody stay with you if possible.  I am concerned about how he will handle treatment and what side effects he may have.  I want to stay with him, but can't be in two places at one time.

Thanks for any input you may have...


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I'm me, not a statistic. Praying to not be one for years yet.

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csouthgate's picture
Replies 5
Last reply 8/26/2011 - 1:14am
Replies by: msue5, JerryfromFauq, Anonymous

Went to see my dermatologist last friday regarding a suspicious mole on sole of my left foot that has been changing shape. She suspects it is early stage acral melanoma. I have a biopsy scheduled for September 6th, does anyone know of a fantastic MELANOMA specialist in the Washignton DC area, if this is melanoma i want to go to a specialist instead of a dermatologist. Thanks!

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Hey everyone just updating what's new.  I had an ultrasound of my lymph nodes in both groins where some of the nodes contained a hypoechoic lesion concerning for melanoma metastatic deposit.  Since the surgical oncologist can actually see this within the nodes he's set me up for an ultrasound guided biopsy this thur at VAndy.  Has anyone else had an enlarged lymph node or nodes that contained a "lesion" in the node that was visible by ultrasound?  Crazy thing is I had a clean PET scan done 2 mo ago but these hypoechoic areas in the nodes are just now right at 1cm in size and were not there 2 mo ago.  Thanks so much for your support and knowlege on this disease.


Much love,

Alicia STage 3a w/ 3 primaries

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heg50heg's picture
Replies 2
Last reply 8/25/2011 - 5:10pm
Replies by: AlanM, JerryfromFauq

After 2 and one half months of interferon I had to stop treatments due to getting pancreatitus . Would interferon cause this. My doctor does not want me to start it back up after getting so sick. Will that amount of interferon do me any good or will I be more acceptible to advancing to stage 4 melanoma since i did not complete it.

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emilypen's picture
Replies 5
Last reply 8/25/2011 - 4:41pm

Hi All,

My hubby is currently doing IPI in a clinical trial in Toronto. He had his 3rd infusion yesterday.

My question to anyone who responded to IPI in the past. When did you lumps/bumps start dissapearing or rather when did new ones stop popping up?

It seems that every day there is a new subcutaneous bump popping up. Some of his older bumps are inflamed and painful to the touch and some have bruises over them.

We heard that his lympocyte level was raised on his last blood work and the docs said that is a good sign, but it's hard to remain positive when he feels something new every day.

Last night he was up til 4am just worrying.


And for those that did not respond to IPI, what next? We've done MEK/P13k, BRAF , Dacarbazine and now IPI.

Any input is greatly appreaciated.




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TracyLee's picture
Replies 9
Last reply 8/25/2011 - 9:28am

Hi y'all,

Well, I am definitely a BRAF responder, and we all strongly suspect a delayed ipi/Yervoy responder!

Nasty/ugly but tolerable rash from below my neck, down my entire body. Began last week, so virulent that my local onc in conjunction with U of Penn, took me off of BRAF for a day or so.

Then, last night...blurry vision in my right eye. This seems more of a ipi side effect than BRAF. Called local onc, and U of Penn. Hauled to ER, assessed, seen by eye doctor today. It is slowly resolving.

My eyesight is terrible anyway (I'm an 11 diopter correction!), so I don't mess around with my eyesight.

The eye doctor did NOT feel it was a side effect. Personally, I do, particularly in conjunction with the rash.

Thoughts? Anyone else have sudden blurry vision, which resolved fairly quickly?


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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JerryfromFauq's picture
Replies 3
Last reply 8/25/2011 - 9:26am
Replies by: Terra, nickmac56, MariaH
I'm me, not a statistic. Praying to not be one for years yet.

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Lisa13's picture
Replies 5
Last reply 8/25/2011 - 9:20am

As of this Friday, it will be 3 weeks since my first ipi treatment.  Today I have noticed a rash across my upper chest as well as on my face (across cheek bones). My face is very warm and looks a bit sunburnt. My stomach has also been gurgling, but nothing other than that.  Hopefully this is all a good sign. Blood work and next ipi treatment next week.

Lisa - Stage 4 - lung mets

Many impossible things have been accomplished for those who refuse to quit

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