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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CAdesiree's picture
Replies 6
Last reply 8/19/2011 - 9:31pm

just came from meeting the new surgeon... i told him i was hoping he was going to tell me it wasn't necessary to cut it back open.  he said he couldnt do that.  the notes from the original MOHS procedure were very poor.  and Mohs isnt designed for melanoma because it does NOT achieve the margins needed.  he and his assistant even mentioned seeing "satellite" on my back (i'll be looking that up in a minute).  but he wants to also perform a sentinel lymph node biopsy.  i didnt think that could be done after the MOHS.  he says it not the most desirable timing, but it will be best at time of resection.  thanks to everyone that commented on the last post... you have all gotten me really thinking.  this new surgeon also said that my new dr wouldn't have referred me to him if she thought it was just a consult.  that i should speak with her directly, but if she sent me to him its because she has concerns as well.  so, im back at square on... trying to my head around all of this.  but i wanted to post what he said.

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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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Jewel's picture
Replies 3
Last reply 8/21/2011 - 2:50pm
Replies by: Vermont_Donna, Phil S, Jewel

I have been coming to this board since Nov 2010 when my husband was first diagnosed with melanoma. Lower left calf Nodular, 3.6mm, Clark Level IV, >10 per high power field, Vertical growth present, Vascular invasion present, Microsatellites present. He had a WLE with clear margins. Oncologist chose NOT to do a LND due to the fact that he feels it does not improve OS. We chose to watch and wait because my husband likes the idea of keeping his immune system strong. Did normal protocal when in June of 2011 when he was having Hip Resurfacing performed I noticed in the hospital that he had some new spots on his original site. Fast forward to July and they discovered that he had 3 local recurrances in the original site, after a PET scan and 2 MRI one on the brain and one on his leg it is showing only in the same original spot. He also has one node that showed up on his left groin. We are now scheduled to have another WLE performed with a skin graft and a LND. Our Dr said that they prefer not to just needle the node due to fear of spill. Now I asked our ocologist about treatment, and he said he was pretty sure that my husband could be "cured" again. We all know deep down what that means. My husband and I are from the Adirondacks and my husband is comfortable with our regular oncologist and doesn't want to change. My husband is incredibly optomistic and always has been....he knows he has cancer....but refuses to let it run his life.

What should we be doing different?

Thanks to all of you, you are all so incredibly brave and strong!!!

Best wishes

Cammy& (Ken)

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Wilfred's picture
Replies 11
Last reply 8/29/2011 - 10:36am

One hundred seven days from the last positive diagnosis, 99 days from the last surgery, and now I have a new melanoma, This is the sixth melanoma on the same ear, five of them in the past 4 years. My friends all tell me that I am an unusual person,  but I don't think this is what they were refering to. How common is this? Should this be happening? Every time the pathologists say that the margins are clear. Pretty soon I won't have anything to hang my hearing aid on.

If you fight, you may lose, If you don’t fight, you will lose.

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My wife's scans last week came back with pretty bad news - she has about a dozen tumors in the epidural space along her spinal column. She was going to have the one causing pain in her tailbone area treated with Cyberknife radiation, but now the radiologists are recommending Tomo Therapy radiation. Apparently this is the latest, greatest radiation treatment there is - precision and real time targeting of multiple tumor sites (can get all 12). Supposed to be painless (of course) and minimal side effects (all I can find are references to anemia and hair loss). There is only one machine in Seattle. The alternatives are not good at all - total body radiation which has awful side effects or watch and wait for 2-3  months (until her brain calms down from the Gamma Knife brain radiation treatment she had las week) and try direct injection chemo into spinal column via a brain port (sounds lovely doesn't it). That assumes she doesn't present symptoms which force some action (likely).

Anyone done this type of radiation treatment and can speak to side effects?

thanks, Nick

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

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CAdesiree's picture
Replies 9
Last reply 8/19/2011 - 5:27pm

i had issues with my original derm who diagnosed the melanoma, then later performed the MOHS to remove it.  i had gotten a second opinion, i found a dr at a cancer center with melanoma experience.  this other dr is great!!! she listens to me, answers my questions and doesnt make me feel silly about my concerns.  she had ordered scans for peace of mind... my insurance only approved one area to be scanned out of the three she requested.  they scanned my lungs, came back clear.  insurance said there wasnt enough evidence to perform other scans. all the while this was happening she was also waiting for approval from my insurance to resect the area of my initial tumor.  when the scans came back clear i just kinda assumed my insurance wasn't going to allow a resection either since it had been a couple months.  but as i was entering chuck e cheese to celebrate my son's 5th birthday i got a call from the surgeon to schedule consultation.  i asked them to email me info and explained where i was.

since my scan came back clear and i had just assumed insurance was going to veto resection i had given up on the idea and made my peace with it.  then *BAM* phone call.  i dont know what to do now... tried to run it by my hubby, but he wants me to do it to make sure they got it all.  he has had a hard time listening to anything about melanoma since my diagnosis.  so it wasnt hard to believe he didnt remember my fears about how sneaky melanoma is...

honestly, even if i go in for resection, isnt it possible it could come back? and would resection possibly increase those chances? i mean, my body would be focused on re-healing that area, would it lower my immune abilities? i feel whiney even being so concerned... so many of you have been fighting so much longer or harder than ive had to... but here i am rambling like a baby... the original biopsy said the tumor was .72mm with mitosis of 2.  i had MOHS to remove it.  and the original derm thinks he got it all.  am i being paranoid because of conflicting personalities with first dr?

i made the appt for tomorrow with the new surgeon, for consultation.  i am hoping to discuss these concerns with him.  but i was also helping for some guidance from someone else with experience. 

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sandywebb's picture
Replies 3
Last reply 8/19/2011 - 1:23am
Replies by: Cynthia C, BethA, Janner

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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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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