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 2
Last reply 8/5/2011 - 9:35am
Replies by: mom3girlsFL, nickmac56

Question for folks with experience with clinical trials.  What affect does the existence of pre-existing health conditions have on your chances of being selected for inclusion in a clinical trial?  Random list:  Seizure disorder/epilepsy (monthly AEDs), pernicious anemia (an auto-immune disorder treated with monthly B12 injections), severe allergies, hypothyroidism, rheumatoid arthritis (also an auto-immune disorder), sub-clinical asthma

Color me just curious.  I currently have some of the items on that list, and it has been suggested I may have some of the others.  I'm very curious what affect these pre-existing existing conditions could have on any clinical trial I may want to be on in the future.   Yes, I realize a lot depends on both on how the clinical trial is designed and the type of drug being tested.  However, I'm looking for general experiences people have had to date.

I would be so disappointed to be prevented from being part of one because of a pre-existing condition.  And not just because of the lost treatment option.  This may sound corny, but I really, truly believe, deep in my heart of hearts, it is my Christian duty participate in any clinical trial I can.  I was so very disappointed when my oncologist told me there were no clinical trials available in our state for which I fit the criteria.  If I ever get a recurrence, I'll be transferring my care to one of the major melanoma centers, and I will be looking not just for treatment trials, but also for the trials that collect information, such as DNA, etc.  I really believe the only way we're ever going to beat this horrible, malicious disease is if everyone who can, does.  And when I'm gone, if they want my body or any portion of it for medical research, they're welcome to it.  (Yes, when the time comes, that will be a discussion I'll have with my medical team.)

Stage IIIb, 2 years NED

"A little ingenuity and a lot of duct tape will solve many problems.", AKC Agility Judges Guidelines

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mom3girlsFL's picture
Replies 8
Last reply 8/5/2011 - 9:24am

I am just going to ramble, so if you've even opened this post...I am a mess.

I have nothing to complain about.  I dealt with the beast most of last year, but since PET, nov 2010,  I have been okay.  A CT of abdomen and pelvis in March was clear also. What is my problem?  I NEED to be here - I have a 12 yr old special needs daughter who requires full time care and 2 younger girls who are amazing and beautiful.  I have a wonderful, supportive husband and a great extended family.

My last derm appt (july) was perfect, not one thing taken and/or frozen off.  My next onc appt is at the end of this month.  Probably a scan due.  Okay, maybe scanxiety,  Maybe feeling sketchy about the "watch and wait" approach? No, don't think so.  Then, WTH???!!!

I think maybe I just might be pissed off.  Angry that we've lost such an amazing warrior in Eric.  Angry that one post talks about hospice and the next post is a clean scan.  Angry that the beast does not discriminate, does not follow "rules" is a roller coaster ride that never quite reaches the drop off point - just keeps you hanging, awaiting your fate.  IT'S NOT FAIR!!!

I hate feeling like I can conquer the world one day and wonder if I'll be able to conquer the world the next day.  I hate pretending that everything is back to normal, when in realtiy it not always is.  I hate complaining when others are dealing with such heavy loads.  I hate knowing I've been there, I know.  I hate feeling grateful I'm not there now.  I hate that my young children had to go through a living hell last year.  I hate that I am not prepared to deal with a fight again if necessary.  I hate being emotionally exhausted.

Mostly, I hate posting this.  This is me.


Do not fear tomorrow, God is already there.

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arnie and sherry's picture
Replies 3
Last reply 8/5/2011 - 12:48am

my husband had gama knife end of june five brain mets, what can we do next?

keep on trucking

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ValinMtl's picture
Replies 21
Last reply 8/4/2011 - 10:29pm

Just to let you know that I have been randomized and will be in the TIL (total body irradiation).  I have been down here doing final tests this past week which have to be done within 3 weeks of treatment, the colonoscopy was a bit of a scare, biopsy showed something but proved to be most likely from ipilimumab drug and was healed..thank goodness, or I would have been off the trial.  If I hadn't been on TBI arm, I would be flying home today but now I'll be staying another week for them to do apheresis to harvest my stem cells for radiation.  So today, I'll just be a tourist in Bethesda and take a break from it all. 

I can't say enough about how blessed I am to be accepted into this trial.  THANK YOU AGAIN WARREN, a million times for the contacts.  I know it's tough..but that's how it is with melanoma and my right leg is sooo nasty now with many smaller sub-qs and some terrible weeping large ones - to be cleaned daily.  The good news is that the two masses are gone from left groin since they were used for removing the white cells...which are still being fed in the lab until they are ready for re-entry.


Live Laugh Love Nothing is worth more than this day!

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Lisa13's picture
Replies 8
Last reply 8/4/2011 - 10:27pm

Just came back from all the screening for the ipi (yervoy) clinical trial I'm starting next week. My brain is clear!!  This is VERY good news since the last time my brain was scanned was mid February! 

I may have small mets to my lungs, but I'm going to enjoy this day because it's a good day!

Best wishes and prayers to you all,


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

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emilypen's picture
Replies 4
Last reply 8/4/2011 - 10:25pm

Hey All,

So after finding out on Thursday that my husband had at least 4 brain mets seen on CT, we spoke with our radiologist. He arranged for an MRI on Friday afternoon and called us in the evening to let us know the results. 

Jason has 6 visible brain mets, and a few of those are quite large. So the doctor feels that we should go ahead with WBR.

After reading all the many articles/research that many of you posted and hearing 2 opinions from oncologists, the risk of more brain mets appearing decreses from 50% to 20% if he is responsive to the WBR. And given the amount of lesions it's highly likely that more will appear.

So he'll start WBR this week and hopefully be able to reduce the amount of steriod he's on before the next IPI infusion.

The doctor did say that there is some evidence that starting a steroid during IPI treatment does not reduce the chance of it working, And since he's only on 4mg dexamethasone twice a day  he should be able to reduce the dose before the next IPI treatment.

Jason said to me yesterday that he thinks the IPI is working. He doesn't know why he feels that way, just a gut feeling. So I'm going to go with that gut feeling and believe that it's working! We will get through this!!

Does anybody here know how long after you complete the WBR treatments you need to stay on steroids?




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Becky C.'s picture
Replies 5
Last reply 8/4/2011 - 12:53pm

Hello. I have been reading on this forum for awhile now and there seem to be some very knowledgable people here.  I was diagnosed last month. I had a mole removed from my right foot that came back a superficial spreading melanoma, Breslow depth 1.57, no ulceration, mitosis was high at 18, biopsy showed no vascular or lymphatic invasion, margins were clear. I then had my WLE and SLNB. Surgeon did a graft on my foot which is doing great, two nodes removed, sentinel node had microscopic cancer cells, second node was clear. Naturally, this has been the scariest thing I have ever faced.  I have done lots of reading, probably too much.  I am having rest of nodes taken out next week. My oncologist really expects them to be clear. Also had CT scan, it was clear. One of the fears I have is of cancer cells getting in the bloodstream. My oncologist said that the cells seek out the lymphatics. Everything I have read says the same thing. From what I have read, thicker lesions are the most likely to penetrate the bloodstream. Does anyone have good information about how often this happens. My oncologist also said, when i asked about recurrence, that it does not recur very often. My doctor came very highly recommended, and he has given me a good outlook.  Also, I am concerned about lymphadema. Has anyone had an experience with this in their leg. I would greatly appreciate any feedback.




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nickmac56's picture
Replies 7
Last reply 8/4/2011 - 8:16am

My wife and I went in for her MRI brain scan results today, Bad news. She has six new brain mets. So that pretty much rules out any trials of any sort. Or a standard course of IL-2 (the only non-clinical trial drug she could go on - after having already tried Ipi). With active extracranial disease (lungs and who else knows where by now) and very active central nervous system disease, it's all right now about trying to buy time. We meet tomorrow with the radiation oncologist - it's either gamma knife or whole brain radiation. They are spread all over - and we have to assume there are more lurking. We'll see what onc recommends. We are game to do the WBRT - our doc said any dementia side effects would kick in long after she is gone - so it's worth it to try to buy some time. She's already lost her hair from the Cyberknife so that's no big deal. She is definitely bothered by the probable side effects of short term memory deficits, but it beats the alternative. She will continue on the Temodar and may switch to Taxol in a month if it looks like it's not doing anything.

The hardest thing we've had to deal with today is expectations around life expectancy. Since she's suffered some cognitive deficits as a result of her stroke, it's been hard to get her to understand. She gets that she won't get through this; she does want the time to get her final projects done (the letters to the boys when they get married, have kids). But she doesn't want the pressure - which is kind of unavoidable. 

Despite a very sad, emptional and teary day - she is a remarkable woman who is showing tremendous grace under all this stress. She is very loved by a very broad and deep community of friends and family who will support her on this leg of her journey. I just wish there was a different path...


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

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Ranisa's picture
Replies 5
Last reply 8/4/2011 - 7:35am

I know that with the lose of Eric she could sure use the extra prayers right now! 

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TracyLee's picture
Replies 10
Last reply 8/3/2011 - 7:14pm

Hi y'all,

I have fluid (and nodules) in my lungs. Last Wednesday, I had my left (worse) lung drained.  They didn't want to do both sides, as the right wasn't too bad as far as fluid.

I felt great on Thursday, started feeling "gaspy" again on Friday. (Also had my 4th Yervoy on Friday, had the Phys assistant assess me, she could hear I was filling up but didn't feel it was too bad).

This morning, I'm just miserable. I'm stuck between waiting for U of Penn to get me scheduled for my BRAF consult (so I could begin to take meds and shrink nodules AND reduce fluid) and having my lung drained again.

Is it common to have such a short window of relief when draining your lung?! Soooooo frustrating! Obviously, until we deal with the underlying issue of nodules/fluid, I'll just keep filling right back up.

I have so much sympathy for asthma sufferers, this is just awful! I'm getting a chest x-ray today, and they will try to get me scheduled to drain. Meanwhile, I feel about 900 years old!


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: MariaH, FormerCaregiver, Anonymous

Here is a list of locations of clinical trials around the world that use the TIL
(tumour infiltrating lymphocyte) treatment process:
Interactive map:

I also did a search for adoptive cell therapy and came up with these results:
Interactive map:

I think that the above treatment approach holds a lot of promise, and is certainly well
worth considering.

Best wishes

Frank from Australia

I urge everyone to thoroughly educate themselves about melanoma. No part of this post should be considered to constitute any form of medical advice. Please consult a competent oncologist. (I think that prayer can help in ways that we don't always expect).

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WalterA's picture
Replies 5
Last reply 8/3/2011 - 2:48pm

In March I had RFA treatment for liver mets. I had a follow-up scan yesterday, and it was really good. Nothing but scar tissue showed up, and my oncologist was pleased.

"Thus I am!" -- Guido in "The Ring and The Book "One day is worth two tomorrows." -- Benjamin Franklin "If it ain't baseball, who cares?" -- Me

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kcta224's picture
Replies 4
Last reply 8/3/2011 - 9:52am

Is Leukine the miracle drug for Alzheimer's patients. I'm here because of my Mom. She is now 84 and an alzheimer's patient.

We want her back. She's still here but deteriorated within the last 1 year.

I've been reading about Leukine being a promising drug for Alzheimer's ....allegedly worked in rats--removed all their plaque and they seemed to remember everything after 20 days of treatment.


Is anyone taking this drug my mom's age? if so, what were the symptoms you experienced?

If you are not 80 plus, but you were 50 plus or older, have you felt your memory --- improved?


thanks for your input.


my Mom

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I am curious if anybody has participated in these trials at NIH?  Dave could not qualify at this time for the TIL and TBI trial due to the surgery being too risky to harvest the tumor.  If he progresses and there is disease that is resectable, then he could.  These were two other options presented to us if his tumor shows either of these expressions.

Any info would be greatly appreciated!!


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Julie in SoCal's picture
Replies 1
Last reply 8/2/2011 - 11:10pm
Replies by: mombase

Dear Friends,

I'm just posting to say hey and that I'm now 3 years NED.  There were days I didn't think I'd get this far, but thanks to God's care and good doctors, I'm in mainland Southeast Asia (mostly Thailand & Cambodia) doing dissertation research. Whowuddathunkit!?!

I don't post often but as often as I can I read and try and keep up with you all on this board-- saddened to hear of a warrior's passing and rejoicing with each clear scan.  You all have been a great source of information and realistic encouragement to me!  I'm grateful!

Here's wishing NED to you all!


Julie in So Cal

3A, primary on back of hand,

SNB, LND, HD INF, 11 mos  GM-CSF.


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