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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Hi, It's been a little while since I've been on here. Just got my 5 yr. scans back and I'm still NED!!!!  WoooHooo!!!!  Was stage 3B when I got to know this beast, but I'm kicking it's butt!!! 

My question is to anyone that has leg lymphedema....I've been having a huge problem with my heel on the side that my lymphedema is on. I have a doc appt. tomorrow to get it checked out but I'm just wondering if anyone has gotten heel spurs because of the lymphedema? If so... How do you fix it??? It hurts so bad and last night at work I pretty much had to walk on my tip-toes to keep the pressure off of my heel.

Thanks for any information!!!


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TracyLee's picture
Replies 12
Last reply 9/3/2012 - 9:58pm

Hi y'all,

Still having a tremendous response to BRAF, now in my second week (after completing ipi on 7/29). My neck node, which was looking like an egg stuck to my neck, is now almost gone!

I have a rash, which looks & feels like goose bumps, on my chest/arms/legs. Not itchy.

Has anyone else who's done ipi had the "ipi itch" present this way? Or anyone who's done BRAF?

It is not at all bothersome, and I will happily live with bumpy arms and legs and be able to function again, over the weeks leading up to starting BRAF! (5 lung drains, 2 ER runs, admitted for 2 days, sent home with oxygen ...)

I just want to encourage anyone, who is on ipi, or BRAF. There are many folks who are in such tragic situations here, and I pray for everyone who posts daily. There CAN be a good response (even if delayed).

Praying that everyone has a good day, and for those having a bad day (and we ALL have those), I pray you can find some comfort and coping.


Stage IV May 2011


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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Replies by: teach, gossteach, Donna M.

I am trying to help a co-worker find an oncologist for her mother in the Indianapolis area. Her mother was orig dx a year ago with a mole on her upper back. If I remember correctly, she did have mets in the lymph nodes then but based on her age (60's) the choice was made to just monitor her. Unfortunately, she now has two small spots on her liver and potentially a lymph node in her chest. 

If anyone has a recommendation for someone around Indianapolis, I would appreciate the info. Should you want to reach me directly, my email is



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jax2007gxp's picture
Replies 14
Last reply 8/20/2011 - 1:37am


I was diagnosed with melanoma just over a year ago.  In spite of everything I read here and from people in this wonderful place who responded, I never did get a stage for my melanoma.  The derm did what I assume was a wide excision (which caused a non-cancer related autoimmune reponse) and that was that.  She told me the cancer was only 0.9 mm so I didn't need the sentinel node biopsy even though I asked for it.  She also told me that the tissue removed during surgery came back 100% cancer-free.  The original margins from the scoop were clear as well.  I finally returned to mostly normal life at the beginning of this year.

Well, just over a month ago I noticed a large lump in my groin area on the same leg where my melanoma had appeared on my thigh.  It showed up almost overnight.  I saw my doctor (derm) who told me not to worry and that I had injured the tendon doing some heavy hiking.  After a month, I had another doctor examine me who referred me for an ultrasound and bloodwork.  The bloodwork came back fine (whatever that means) but the ultrasound report confirmed a 5 cm lymph node with the conclusion "highly suggestive of metastatic lymphodenopathy".  I collapsed at the news.  How could this have happened?  I'm going in for an ultrasound guided biopsy tomorrow...praying it is all just a mistake.  But, I'm not really thinking the odds are good for it being something other than cancer.

Assuming the test confirms cancer...what do I do next?  The second doctor who referred me for the ultrasound and now biopsy basically shook my hand, said he was sorry, and wished me the best. Okay, but what do I do after the biopsy?  Do I go to an oncologist?  Am I likely to have to start chemotherapy?  If my blood work was clear, is that a good sign that the cancer is limited to just this lymph node?  Or maybe it isn't cancer after all?

I'm only 39...just a couple of weeks from my 40th actually.  I recently starting seeing a man who I think could finally be "the one" and now this.  Scared, angry, confused and devastated.  Any feedback, advice, or any helpful words are so greatly appreciated.  I'm not feeling a lot of support from or faith in the doctors I've seen so far, so this site may really be a God-send for me.

Thank you,


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Lisa13's picture
Replies 17
Last reply 8/19/2011 - 9:08am

Just started Yervoy a week ago and I've been reading all these articles about it and quite frankly, the numbers of responders are no better then chemo. - 10%.  I'm starting to think I should have put myself through IL-2 tortue since the numbers of long term remission responders is 6% (which isn't far off from ipi).  This is so friggin' frustrating, especially when you've got all these BRAF drugs showing an 80% response rate or a 63% less chance of dying then chemo patients.  My Dr. told me that his trial of ipi (which I'm apart of now) is showing up to 40% responses, so I don't know who to believe anymore.

At the end of the day, it's either going to work or not work and I'm not going to care less about these stupid percentages which quite frankly, I don't think anyone has the numbers right. I'm so happy for all the lucky people who are BRAF positive, but I'm starting to think that the drug companies could care less about the rest of us.  I think I'm just having a bad day.

Lisa - Stage 4


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

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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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Eileen L's picture
Replies 4
Last reply 8/19/2011 - 1:27am

The other day I posted that after a stable scan, I thought I felt something in my right groin that seemed to me to be a swollen lymph node. Went to oncologist yesterday, and he was very certain that what I was feeling was not a swollen node and after talking to him about it, and feeling my groin about a million times more, I do believe he is right. I 

What we did find was something on my neck, which felt to him like a calcified carotid artery! So now I am off to my primary care doc next week to see what she thinks, and possibly get a ultrasound of my carotids. Given that there is a history of arterial disease on both sides of the family and I have a tendency for high cholesterol levels, it certainly may be that I have something happening there!

If it ain't one thing its another!!!!


Eileen L

Stage IV

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Our doctor has advised me to tell my daughter now that my husband is going to die from his cancer.  I am so in over my head and need help.  She is an extremely intelligent young lady, and knows that we have been fighting this battle without much success, but I don't know if I can say the words to her or even what words to say.

Any suggestions would be much appreciated.

Live in each season as it passes; breathe the air, drink the drink, taste the fruit, and resign yourself to the influences of each. Henry David Thoreau

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Jan in OC's picture
Replies 9
Last reply 8/19/2011 - 5:41pm

Dirk decided to go ahead with the brain surgery for the biggest tumor.  It is scheduled for Friday at MD Anderson.  The doc will harvest the tumor for t-cell trial along with tissue from his side.  We hope that it will be successful and grow new t-cells. We need to do a bunch of pre-surgery stuff tomorrow.  After recovery, in a couple weeks, they will zap the smaller three (hopefully) and then start him on temodar or Bio-chemo (not sure what Dr. Papa will go with).

On a good note, we are signing a lease on a house in Katy tonight. The owner has stripped the flooring and is installing new tile and carpeting, paint and cleaning.  Hopefully it will be ready to move into Saturday or Sunday.  Then I can bring Dirk to a more comfortable place on Monday when he is released form the hospital. I was worried about bringing him back to the hotel for recovery!!

He is a little upset that I will be doing the unloading & moving on my own.  He is worried about how I will get his motorcycle off the U-haul without damage.  I'm worried about driving a big 26 foot truck!!   Just need 3 or 4 BIG guys to unload the truck!!

Gonna be a crazy weekend for me!!!   

Jan (wife to Dirk, stage 4)

laughter is the best medicine

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DeniseK's picture
Replies 2
Last reply 8/17/2011 - 7:17pm
Replies by: JerryfromFauq, DeniseK

I got my blood work back finally!!  The infusion center gave me the results but didn't go over them with me. 

Everything was within normal range except:


MCH-High-33.6 (just over the normal range of 33.0)

Band Neutrophil-High-15 (normal range 0-10)

From what I found the band neutrophils could be high because of a bacterial infection or cancer!!  Is this true??  I have no infection that I know of. 

This blood work was done last Saturday before the Interferon started.  The LDH level came back 166 (range 81-234) so that's good. 

Just wondering what that means! 



Cancer Cannot cripple love, silence courage, destroy friendship, shatter hope or conquer the spirit.

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KellieSue's picture
Replies 6
Last reply 8/19/2011 - 7:16am

Had scans on July 22nd. Been taking B-RAF(now Zelboraf) since February. My scan showed some shrinkage and some growth. It was a little scary for awhile because I had to wait all weekend for my dr. to measure my tumors. It ended up only being 6% growth overall! Yah!

I'll continue to see my dr. every 3 weeks and have scans every 8 weeks(I think) I do seem to have a neutrophil problem  at times. I dip down as low as 1200(they have to be at 1500 to continue taking the drug) I get off the drug for a few days(a week at the longest)get retested and am able to continue taking it again.

My side effects have been very minimal, imo.

Thanks for sharing in my good news!

Kellie(from Iowa) Stage IV, on Zelboraf since Feb. 2011

Cancer Sucks. I'm so not done kicking cancers ass! I have a lot of life left to live

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newmanmark's picture
Replies 6
Last reply 8/17/2011 - 8:52pm

Hello everyone,

I want to give an update.  In my last post I was concerned about abdominal pains and that it may be a reccurence in the liver.  Well the CT scans showed nothing!  It was a huge relief to get this news.  I am going to be monitored now on a regular 4 month schedule.

The reason I write this time is because I have been seeing a well known Integrative Cancer Specialist here in Toronto and he is recommending that I start mistletoe injection therapy.  He believes that it can be effective for many types of cancer and said that it is commonly used in Europe.  I know a lot of you will get all worked up at the idea of a natural therapy but I am looking for educated opinions on whether this is worth while.  I am willing to try anything at this point to prevent the cancer from recurring. 

Has anyone out there gone this route?



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Tim--MRF's picture
Replies 9
Last reply 8/19/2011 - 10:16am

The FDA approved the Plexxikon/Roche/Genentech BRAF inhibitor this morning, months before when they had to do so.  This is a great breakthrough in a number of ways:

--two drugs approved in one year after 13 years of nothing being approved

--approval of "targeted therapy", a different way of attacking melanoma than anything else that has been approved

--rapid approval by the FDA

All indications are that more drugs will be in the pipeline for approval in the next few years, so the field truly is changing.  This all has a long way yet to go, but progress is so very much better than no progress!



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KellieSue's picture
Replies 4
Last reply 8/18/2011 - 6:46pm 


I didn't know it would happen so early, I'm excited. I cannot believe 2 drugs have been approved for melanoma after 13 years of nothing!

I worry though, I'm in a clinical trial. Do I continue to be in it? Or does this just mean they'll be no more new trials starting with B-RAF?


Kellie(from Iowa) Stage IV, on B-RAF

Cancer Sucks. I'm so not done kicking cancers ass! I have a lot of life left to live

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hello everybody,

i dont have any news but wanted to post smth!there is not a day that i m not here!all of you are giving me hope and streght.even thow, i feel like i m running out of time, i feel that i dont have enough time to do things that conclude my mother in.i want to get married and have children and i want my mother to be there!to be happy!i want o "hole" lifetime with her not just a part.....i dont want to be selfish, i just want her next to me, to share with her everything.if i am away from home i m callingonce a day to she if she is ok, i m thinking all the time that smth will happen..

before one month we found out that she has 2nodule (3mm and 4mm) stable at her lungs (we didnt knew that they was there until the doc told as that they were present and at the previus ct, three months before) and the ond said that meybe isnt smth.The oncologist t  hought that have palpate a lump at her neck but she did an ultrasound and there was nothing.Although athe arm with te full axilary disection, she dosent have lemphydima, but she has pain near her breast and its swollen when she wears a bra, the doc said that its from the oparation and it want time to heal.


so NED!!!!!!

i m so thankefull to all of you, if you werent here i must had gone crazy for sure!

best wishes to all of you, you are in my prays



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