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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My husband is on his second 2 week dosing of Leukine.  The first round went well til about day 5.  Everything I read warned that injection site reactions were very common.  Which is what happened.  On day 5 his belly started swelling, welting, etc.  He suffered threw it til the end of the 2 weeks but when we started the injections this time the reaction was immediate.  The welts are the size of my hand, including my fingers, and mind you I am not a dainty handed girl.  Is this what most have experienced with Leukine?  I am a nurse and keep reminding him that his side effects could be so much worse compared to many treatments but after 14 days of injections Im not sure if he will have an unwelted area left on him.  We are using hydrocortisone, ice, heat, ibuprofen, caladryl.  Any other tips/tricks anyone could suggest? 


Thanks a bunch!



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POW's picture
Replies 7
Last reply 9/22/2012 - 11:49am
Replies by: POW, Rocco, deardad, lhaley, jmmm

I have read a number of comments on this forum talking about how awful it is to be on steroids and how anxious people are to finally get off them.  It's scary to see so many strong, determined people who go through chemo with nary a wimper say how difficult it is to be on steriods. What's the deal with steroids, especially dexamethazone? What do they do to people?

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LynnLuc's picture
Replies 3
Last reply 9/22/2012 - 10:57am
Replies by: Anonymous, Laurie from maine, awillett1991

My friend has been doing outstanding on the BMS Anti PD 1 trial since March 2011. Everything has completely shrunk to near nothing or vanished completely. She had one area that has had stubborn is a spot by her stomach in the fat is wrapped around the main artery so they can not do surgery. Through the course of this trial it has not shrunk or grown....until now. She had her scan results today. The melanoma has grown by 20% and a new met was found in her spleen.

She was taken off the trial and now referred for Ipi.

I have been in the trial since fall 2010 and have been NED for 2  1/2 years.

Just wanted to let you all know Anti PD 1 has its flaws....I am kind of upset about this. I hate for my friend to go thru IPI and the side effects. She had previous surgery and had  1/2 of large intestines and all of ascending is gone and 1/2 of transverse...that is 3/4 of large intestines removed. I don't know how she is going to handle the colitis or the skin rashes...ugh.-  Lynn

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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himynameiskevin's picture
Replies 11
Last reply 9/22/2012 - 10:21am

It's been pretty rough times, with the WBR and this steroid they've got me on. Luckily I'm tapering off, should be off completely by the end of the month I think. Hopefully I won't have too many withdrawal symptoms, I've had quite a bit of lower back/adrenal gland pain? Not sure but only occurs when I get stressed real quick. Also tons of fatigue, you know the steroid causes insomnia and basically a restless body syndrome. So that on top of the WBR. Oh just tireeddd and fatigued.. Just want my body to shift back to some what normal. By the way I have a Pet Scan within the next week and an MRI of my brain on the first. Hope. Sorry if I seem a little out of it and not quite myself, I guess I'm not right now.  :/   ;) As far as therapies, for the time being I'm on 120mg of temodar once a day. So far so so good. With hopes to keep things stable and maybe try IL-2 again since it "kinda" worked once.

I truly love you all. Thanks for being there.


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Wendi Lynn's picture
Replies 2
Last reply 9/22/2012 - 9:46am
Replies by: Linny, swissfarm7

Hi All!
I am Stage 3b, and had a PET on 8/31 that came back with a spot on the uterus that they wanted to check. Went in for ultrasound on Tuesday and results were ovarian cyst. Normally I would take that for what it is, but my mom died from ovarian cancer. My oncologist said to wait it out another 3 months and do the ultrasound again. Am I wrong in wanting to have this checked now? I called the oncologist office and said that I'd like to have a CA125 blood test and they said it wasn't a good idea. At this point I'm thinking about calling my primary doctor and getting a second opinion. I guess I'm looking for a sanity check. Am I overreacting?

I appreciate your thoughts on this. It's hard to be objective and sane when you're scared and angry.

Wishing all the warriors well!

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swissfarm7's picture
Replies 5
Last reply 9/22/2012 - 9:22am
Replies by: Nicky, swissfarm7, washoegal

Hi, all!  Two months into my husband's journey with melanoma, I could use some contact with others on the same path.  This past summer was quite the roller coaster.  In June, we traveled with our five boys to Europe, spending most of our time in Hans's native Switzerland.  No sooner did we return home than Hans received a cancer diagnosis.  From the Swiss Alps one week to the Seattle Cancer Care Alliance the next ~ talk about a rough landing! ;-) 

Hans had a wide local excision and sentinel lymph node biopsy in late July.  Melanoma was present in one of two nodes, and the following month he had a lymph node dissection.  He recovered well and none of the nodes showed further evidence of melanoma.  Hans isn't a details kinda guy while I'm a Type A researcher, preparing to write a doctoral thesis (or so it seems!) on a subject I never wanted to know about.  He took the results to mean he'd "beat" cancer.  If only!  Talking with the medical oncologist the other day brought him face to face with the reality that he's Stage IIIB (T4bN1aM0 to be specific). 

So.  Now what?  The question anyone in this situation faces.  Hans of course has to follow a surveillance regimen, with regular dermatological visits and CT scans.  This is where my first question comes in.  I've read in several places that Stage III patients should have scans every 3-4 months for the first couple of years after diagnosis.  Our oncologist suggests every 6 months, staggered with the dermatology appointments, due to the exposure from frequent scans.  (Our surgical oncologist also mentioned that they're doing scans less often now.)  What's your thought on this, and what sort of management plan have you followed?

The oncologist addressed adjuvant therapies, and naturally interferon was mentioned.  He presented the pros and cons and stressed that there's no right or wrong choice.  We're aware that the potential benefits aren't quantifiable, and that the treatment, while tolerated differently by different people, can have a profound effect on one's lifestyle.  We're really outdoor-oriented, athletic people; more significantly, we own and operate an organic dairy farm.  Needless to say, a year of suppressed activity would be challenging for Hans ~ and the rest of us.  His kneejerk reaction was, "No way!".  And I totally get that.  But as a guy in the prime of life (he's 45) with five children, the youngest of whom is 7 years old, something that potentially delays the progression of an aggressive, insidious disease may be better than nothing, kwim?  So, much as I worry, reading about the toxicity of interferon; much as I hate the thought of how it may affect him (and us); and much as I hate that we'll never know if it did any good anyway ~ I'm leaning toward it.  As for Hans, I think he just plain doesn't know what to do.  Really, how on earth does one make this decision?!

There is a clinical trial comparing interferon to ipi that Hans may be eligible for ~ although he wouldn't know going in, of course, which drug he'd receive.  While some aspects of the trial would be free, others would not, and our insurance won't cover research trials.  As it is, our insurer has actually denied coverage for all the treatment Hans has received thus far.  A long and ridiculous story, but suffice it to say I'm in an ongoing effort to appeal their decision.   Only mentioning it in the context of the trial and our need to consider financial aspects. 

Good grief, this become quite the novel.  Thanks to those who have read this far, and to anyone who can offer words of encouragement or advice.  I'm so weary of hearing well-meaning but uninformed people exclaim, "At least it's only skin cancer!".  Sigh.



Keep on keeping on.

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LesleyKS's picture
Replies 1
Last reply 9/21/2012 - 6:43pm
Replies by: Tim--MRF

Hello all,

I was diagnosed with Melanoma In Situ on my left thigh in July this year.  I would like to know the intricacies of Melanoma and have been doing a lot of my own research.  I need help understanding what exactly my pathology report means.  Here is what it said:

Concern over the possibility of continuous junctional colonization by melanocytes over a significant expanse (image 2) fueled by observation of a fe high level pagetoid melanocytes, recommended acquiring the block for a well controlled MART-1 immunohistochemical reaction to be prepared here at WDS/CCPL, together with deeper sections.

The haphazard scatter of pathologic melanocytes along the junction with zones of continuity is accompanied by prominent high level pagetoid melanocytes, forcing a malignant interpretation.

That last sentence is the one I am not fully understanding.  I appreciate any help anyone can give.


Thank you!

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Richard_K's picture
Replies 5
Last reply 9/21/2012 - 11:36am

I had good scans last week but due to a high bilirubin count, I was taken off Zelboraf for a week.  New blood test yesterday, bilirubin is where it should be, and I was given another supply of Zelboraf; starting my 31st month on it.


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Hi all!

I don't come here much anymore, but wanted to post this.  I adored John Ingle, and I'm so sad he has passed away, especially from melanoma. 

RIP "Mr. Q"!!

Life is NOT a journey to the grave with the intention of arriving in an attractive & well-preserved body, but rather to skid in sideways, champagne in one hand, strawberries in the other, body totally used up & worn out, & screaming WOOHOOO, WHAT A RIDE!!

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dellriol's picture
Replies 8
Last reply 9/21/2012 - 6:24am
Replies by: Anonymous, mlbjab, dellriol, Erinmay22, aldakota22, KMT2003

I notice several comments about twins.  So how many of you are also twins, and how many have twins with melanoma too?  I'm an identical twin.   My  sister was the one who seemed to be "mole-y".  I'm now a 7 yr survivor and she is melanoma free, although she has had a cou[le basal cell tumors this year.  Just Curious!!!

This ain't no hill for a stepper.

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AllyNTAus's picture
Replies 5
Last reply 9/20/2012 - 9:31pm

I had scans today, 5 months into Dabrafenib, and was really scared as I had discovered a lump in my left armpit last week. I was shaking as I pulled out the scan report and read it, and it said everything was stable!! "No axillary lymphadenopathy" and all other measured lymph nodes either the same size or slightly smaller, all organs including brain clear. So it is a mystery what this lump in my left axilla is, all I can think of is that I've been doing some gym workouts for the last 4 weeks, and maybe there's been some muscle strain leading to some sort of cyst or knot?

Will be seeing my oncologist tomorrow to go over the scans and get him to feel the lump, but I would have thought the radiologist would have reported on it if it was anything suspicious.

Hoping and praying that Dabrafenib keeps on working a bit longer!

Wishing strength and good health to all you warriors out there,

A bad day's fishing beats a good day's work everytime

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KMT2003's picture
Replies 4
Last reply 9/20/2012 - 9:14pm

This last month has been incredibly frustrating and stressful...I was dx stage 3 in June when melanoma was found in a lymph node in my neck with extra capsular extension. I then did radiation for 4 weeks 5 days a week. In August I went for prescreening tests since I was going to start the interferon/ipilimumab clinical trial. After all the tests, I met with my doctor who told me I could no longer be considered for the trial...they found areas of concern in my bones. Talk about a shock! We weren't expecting that news at all. I was scheduled to do a biopsy of my lumbar area in my back. FNA was done, waited for results, was told it showed a cluster of atypical cells with some maligmancy. However, it was inconclusive for melanoma. I had to go back and redo the biopsy to get more sample. I went back last week for the second biopsy and had to wait again for results. Today we went back to Moffitt to get results... Once again biopsy was inconclusive for melamona and didn't have any atypical cells. Now I have to go and do an open bone biopsy so they can get a good look at the bone itself. However, in the last 2 weeks I have felt a small area of concern in my left breast get bigger. Doctor checked it today and could also tell it has grown so now we are going to biopsy that first instead of the open bone biopsy. He feels it will be much easier than the other procedure. If that comes back positive, we won't have to do the bone biopsy. I am also B RAF positive. Is it wishful thinking that since both biopsies have come back inconclusive that maybe its not related to melanoma??? Maybe I will get to stay at stage 3 instead of progressing to stage 4? I'm trying to stay positive and not let this disease control me. Is it wrong to be hoping for the best??


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Lisa - Aust's picture
Replies 3
Last reply 9/20/2012 - 8:40pm

Hey Everyone,

Im very happy to report that my husband Craig's latest scan was all clear, which puts him at week 84 on the GSK BRAF inhibitor trial. His oncologist was very pleased, and we are so grateful that he has responded for such an extended period.

Just wanted to share this great news with everybody.



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Dana R.'s picture
Replies 13
Last reply 9/20/2012 - 3:30pm

This month marked 10 years since my husband got the news that his scans were clear. In Jan of 2001, lung mets turned up in both lungs. He received a biochemo regimen that was being studied at the time at MDA by Dr Legha. (high dose IL-2 plus interferon, cisplatin, vinblastine, and dacarbazine) Then a year of just immunotherapy. Our oncologist says he is "cured" because the data is demonstrating that people who live at least 5 years after high dose IL-2 continue to be free of disease at 10 years, and further out, too, I guess. So grateful for the guys in the labs doing the research!

Dana R

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Manubuzzi's picture
Replies 13
Last reply 9/20/2012 - 11:31am

Greetings everyone,

Just a few lines to tell you that my mother (45 years old) has passed away on January 09th.

She was a great fighter and lived one really good year having this terrible disease, but she lost the battle..

We will miss her so much.... I cant believe that this have happened.

Thank you for all of you, from the bottom of my heart, for your kind words during this terrible period.

Good luck for you and yours! I really want the best for all of you.

Cheers from Argentina.


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