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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WendyPam's picture
Replies 3
Last reply 7/4/2012 - 6:45pm
Replies by: Anonymous, LynnLuc
Can anyone tell us of a company that does any type of tumor profiling that maybe can lead us to some treatment plan for my Mother.

Another question being that my Mom is Braf Negative and C-Kit Negative and seems that every other test that we have done we never have the marker. Does this make her besides being Braff Negative is she considered Braf Wild Type?

Currently we are on a chemo cycle,Carbo/Abraxane. Trying to get our doc to bring Avastin into the cycle next round. We completed 2 treatments and holding off today because of low levels and our primary doc was out. In 3.4 years all she has done is Interferon, Yervoy and a Yervoy re-induction. With the re-induction we only complete 2 treatments. I am very interested at this point about the clinical trial E7080. Looking at other options until more Anti-pd1 trials open.

Thanks everyone for your help as always!


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ipi in DC's picture
Replies 3
Last reply 7/4/2012 - 12:37am

Hey guys,

I haven't posted in a while but still wander around to see whats going on. Monday I received my second set of scans that showed no eveidence of active desease. They are saying active since my other possible nodule in lungs are still visible. They have never been confirmed melanoma or not.

After going to stage 4 two years ago I am very happy to hear anything other than "we need to watch........" and going to 12 week scans is great.

It wasn't too scary to get results when your in the heat of battle, but to go in and maybe hear that it is active again was kinda scary. Like they were going to take my new toy away.

I know I am not even close to being out of the woods but its nice to slow down and enjoy the trees.

Have a wonderful holiday,


Fully rely on GOD & try not to ruin today by worrying about tomorrow

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83 articles were found in the search box containing keyword “melanoma”


Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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Ali's picture
Replies 29
Last reply 8/5/2012 - 6:29pm

I have opened this site a dozen times in the last week, thinking I would share, but found it too difficult.  It is no fun reading bad news, and it is not fun spreading it.

I was diagnosed stage IV in January.  We had a scan last October (three months before) that was clean.  By January there were about a dozen subcutaneous lesions, two spots in the liver, and three in the bones.  We radiated 2 of the bone lesions immediately (one time high dose radiation) and started high dose IL-2 the next week.  The first scan looked great, many subqs gone and bone and liver improving.  The second showed improvements in bone and liver, many subqs gone, but new ones popped up.  We did the last dose of IL-2.  It again shrank many subqs (I could feel them melt as I was in the hospital, very cool).  We waited a month to scan.  I really wanted to have all trials available in deciding my next step.

The scans last week showed the liver and bone mets improved (they weren't lighting up at all on the PET), all the old subqs gone, but new ones (lots of them) popping up.  No organ involvement except the brain.  And major involvement there.  25 small brain mets.  Have you ever heard of that?  Popping up since April?  It seems pretty extreme.

So.  That pretty much kicks me out of trials.  Surgery is not an option.  Can't radiate individual mets yet, as they are not big enough.  Could do whole brain radiation, but mostly we are just hoping that we can get a systemic response out of IPI, as I had a good immune response from the IL-2.

Started IPI Wed., and also Temodar.  Scan again in 6 weeks and will see if any of the tumors get big enough to radiate (at the rate they grow under my skin, I'm thinking that won't be too hard).

I hate this disease. 

But I love that we options now that we didn't have a couple of years ago.  I love that melanoma is getting so much attention in the oncology world and that the things that are coming out are actually working. 

Thanks for all the support I find from this bulletin board!  Keep up the good fights!


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Anonymous's picture
Replies 2
Last reply 7/3/2012 - 6:26pm
Replies by: washoegal, Anonymous

 A week and a half ago my dad went in to get his left lymphnodes removed due to an earlier surgery returning positive for tumors.  The results are back and 2 additional nodes came back positive? Does it mean the cancer has spread to other areas? What happens next? His doctor had initially said he was stage 3a.  

Thank you in advance for any information you can provide.

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Sherron's picture
Replies 5
Last reply 7/3/2012 - 2:32pm
Replies by: washoegal, TSchulz, Anonymous, LynnLuc

I heard this on the news today and just read some about it...Life it you drink 3 cups a day, it will help protect you from skin cancer....PLEASE????  REALLY???  Jim drank coffee, much more than 3 cups for at least 42 years of his life....He has been gone for 19 months this past Saturday.  Why do they come up with the silly false hopes for people....

Wishing you all well as you continue your fight.  I don't post much anymore, but check in often.  This became of part of my life.

Take Care,


Sherron, wife to Jim FOREVER

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Lilbrat's picture
Replies 4
Last reply 7/6/2012 - 4:59am
Replies by: Lilbrat, LindyVA, Phil S

My boyfriend had had two treatments of Yervoy when they found that the brain tumor that was partially removed (blood vessel involvement)  had started growing again.  He was put on steriods due to some speech symptoms of swelling and scheduled for gamma knife surgery.  The gamma knife took place today and they said to call in a month about coming off the steriods.  This would delay the Yervoy treatment again. 

Wondering if anyone else had experience with steriods after gamma knife and if so for how long?  I believe he was told to stay on the steriods by his radiation oncologist or someone from the gamma knife team.  Thinking it might be worth it to talk to his oncologist who supervises the Yervoy.  Any thoughts?

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Erinmay22's picture
Replies 8
Last reply 2/8/2013 - 8:22pm

I'm wondering what folks liver levels have been on Z.  I started taking May 30th.  Had to take a 1 week break due to severe rash.  Before taking Z my ALT level was around 16.  Then 10 days on it was at 40 and then 2 weeks later at 120.  I think normal range for women is between 5-37.  They are doing repeat labs again on Thursday.  Guessing that is to watch my liver levels.

Also my Bilirubin was at 0.9 on 5/22 (before taking Z) and then actually at 0.7 10 days later but 2 weeks after at 1.7.  These were taken this past Friday!

I started Z because in May I had a section of my small intestine with significant wall thickening.  And my hemoglobin had dropped to 5.6.  On Friday it was up to 10.8 (I did have a blood transfusion 5/22 which brought it up around 9.7).  

Any suggestions on what to avoid to help with liver levels elevated?  I know Alcohol and other medications.  

Erin "people will forget what you said, people will forget what you did, but people will never forget how you made them feel' Maya Angelou

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NYKaren's picture
Replies 2
Last reply 7/3/2012 - 4:53pm
Replies by: jag, aldakota22

As most of you know, I had to stop Yervoy after the 3rd infusion due to colitis.  When I was hospitalized about a month ago due to a fever with the diarrhea, they gave me one infusion of Remicade.   It didn't really help that much...I still had to take Imodium or Lomotil most days.

About 10 days ago, I had another infusion of Remicade.  Two days later, the pain and diarhhea COMPLETELY STOPPED!  It was like a miracle cure.  I am eating most foods (still afraid of those tiny seeds in strawberries and blueberries).  I had sushi the other day and I can't wait to have it again!

I have read here more times than I can count that people with Yervoy-induced colitis can't leave the house because of the diarrhea, and I can so identify with that now.  We must be our own advocates...I asked for the second dose of Remicade.  It is not without possible side-effects (they give Benedryl with it just in case of allergic reaction) , so everyone's not an automatic candidate for it, but it never hurts to ask.  If there's one thing I've learned from this journey is that I must educate myself...half the time I make the suggestions to the docs, and a lot of the time, they take them!

I'm still adrenal insufficient--can barely walk a flight of steps--the endo. thought it was coming from the pituitary gland, but an MRI showed that not to be the case.  So, I'm having my cortisol checked in a couple of weeks...maybe by then the adrenals will have started to function and I can wean off the hydrocortisone.  Meanwhile I have to wear a medical-alert bracelet and carry liquid hydrocortisone and needles with me.  Will decide at next visit to Dr. Wolchok my next course of treatment.

Have a good 4th everyone,


Don't Stop Believing

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yoopergirl's picture
Replies 2
Last reply 7/2/2012 - 4:14pm
Replies by: yoopergirl, cltml

I still have a bad cough and the tassalon perls have not helped, I can not take codiene so am wondering if anyone here got any relief from something other than  those two? I am calling my GP today and also the clinic at Madison to see what I can do. My breathing is much better. Still no energy tho and this waiting for the clinical trial is also wearing on me, everything takes too much time for me. I will have all my children and grandkids here the week of the 18th so that will keep my mind busy. Any input would be appreiciated.

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deardad's picture
Replies 6
Last reply 2/2/2013 - 4:53pm

So that was a downer again! The Temador for two months has done nothing. The WBR also has done nothing. One lesion is causing weakness in his foot and they're not offering anything other than cortisone for it. What's been offered? Well Carbo/Taxol or Fortismusine, both he did not recommend and personally would not take vs quality of life. So we don't know if there are any new lesions but I'm going to get the MRI disk to see whether gamma knife is an option, he said it wasn't. He also said that we need to get palliative care involved for down the track.

What do we do now, just sit and wait for the bomb to go off? The onc said we can go out fighting with chemo or have quality? 

Its all too much, please what do you think warriors, I need some info quick.

Nahmi from Melbourne

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lhaley's picture
Replies 10
Last reply 7/2/2012 - 5:43pm

This week is the 6th anniversary of being told I am stage IV.  With my latest 2 brain mets 2 weeks ago I'd like to hope that I'm NED but am realistic. 

The day we came home after the SRS we called our son and confirmed that we were going to Disney World.  Leaving in the morning and can't wait to watch our grandaughter (she is 2 1/2) be excited to meet her idols - Mickey and Minnie. 

This week we are not letting melanoma get in our way of having a great time.


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Replies by: chalknpens, Anonymous, JerryfromFauq, BethA in VA, lhaley


I'm brand new to the site and to melanoma. My faher had basal and squamous cell cancers, and often had them removed without surgery; I think they froze them off. He did have Moh surgery one day on one of the sites. He went back and forth to the surgeon two or three times that day (my husband was his driver.)

I'm here because i don't really know what to expect. I had what the skin surgeon called "slow Moh" surgery, over a period of about eight days. He would cut, send the cuttting out for biopsy, cauterize the wound and have me come back two days later for results and more cutting, until finally the fourth pathology report came back with clear margins. He then sutured the round wound (about the diameter of a coffee cup) in a Z shaped pattern of about forty or fifty stitches in all. This all sounds rather dramatic, as i had never had stitches in my life (and I am in my sixties now.) But it was relatively painfree, and I was very calm (I have antidepressant medication.) I also had some small basal sites 'excised' during the month of June. Final stitches come out this week.

I have never had a 'full body scan' for further sites, but anticipate that in August when i see the dermatologist again, rather than the surgeon. I have the risk factors, having spent my childhood at the beach, and having fair skin, freckles, small flat moles, blue eyes, and light hair. But I have stayed away from the sun for the past thirty years or so, because I am heat intolerant. I have a diagnosis of relapsing remitting multiple sclerosis. Heat and strong sunlight are my enemies, and have been for decades.

I am afraid of the August appointment. I am afraid that they will find more, and cut more, and biopsy more and cut more again. I am already being treated for MS-related depression. I don't want this to go on and on and on. But what is the likelihood that it will not?

I am not perfect, but I am enough.

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hbecker's picture
Replies 6
Last reply 7/2/2012 - 3:55pm
Replies by: Linny, hbecker, lhaley

Just wondering if anyone has experience with GM-CSF SECRETING ALLOGENEIC MELANOMA VACCINE (MELANOMA GVAX) trials? This seems to be the only treatment option that fits  - a melanoma without juncture on the skin, possibly (probably?) primary dermal, that was about 9mm thick, fully excised and no spread to the sentinel nodes, no evidence of spread on PET/CT scan. No one has yet agreed on a stage because it never showed up on the outside of the skin and they can't do the depth or thickness scales properly. The concern is the size - it was pretty thick, even if it couldn't be measured. 

If anyone has any experience with a case like this, or with the vaccine trials, please respond. Thanks!

blogging at

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zoocrew6's picture
Replies 11
Last reply 7/2/2012 - 8:12am
Replies by: Anonymous, jag, zoocrew6, CarolA, sjl

Hi, I am new here and fairly new to melanoma.

7 weeks ago I had an axillary dissection and my recovery had been going great. I went in for my scans to begin a research trial and my chest CT showed " something " ... that something is a hard lump that over the past 2 days has gotten slightly bigger and today noticed my skin is a light purplish color over the lump. The lump is located just above my scar from the dissection. Starting to hate weekends because I cant call my doctor to ask so thought maybe joining here would help. Could a tumor grow that quickly ? What about the change in skin color literally overnight ? My hand and wrist on the same arm is slightly swollen, so am wondering if it could be sercoma and not such a quick reoccurrence. I havent even gotten the chance to start a treatment, was still recovering from surgery and even my nurse said it would be a quick return. My dr didnt read my scans, the nurse did and am now waiting for a PET scan. I guess I am hoping for some peace of mind or to know yes I should accept its back so soon and just face it.

little background - primary was a mole on my left hand, had the mole all my life then a year ago it started to fill with blood. Apr of this year, I noticed a swelling under my armpit  (left). Had mole biopsy'd, told it was melanoma. Had surgery, wide excersion mole removal, skin graft done and all the lymphnodes removed under my arm...5 out of 15 were cancer.Surgery was May 14th.

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