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.

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This is big, and could eventually cure many cancers. This article relates to breast cancer however the artical also speaks to how this has been a success with melanoma cells.


Here is another virus success story for Leukemia


Hopefully pressure will be put on to get these moving fast, actually they should offer such treatments to any cancer patient who is willing to take the risk. They could still proceed with normal trials but let folks who are running out of options take part in medical science and participate in these new therapy revelations. The only way for this to happen is to get loud and demand it! 

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jmmm's picture
Replies 3
Last reply 9/27/2011 - 3:55pm
Replies by: jmmm, janet-varner, ad2424

After a second opinion and thinking about it for a week, my husband wants to try for a PD-1 trial.  I've spent hours doing research and trying to find a trial, but I'm so confused!   I realize there are different drug manufacturers and they use a different number/letter combination for their drug.  I'm trying to track down a trial that allows for patients who have had previous yervoy/ipi treatment to enroll.  Please help!  Does anyone know where there is a trial for a PD-1 drug for a patient with previous yervoy treatment?  It looks like Sloan Kettering and/or John Hopkins might have a trial, but I"ve called and they all tell me that we'll have to come to their clinic to talk to the doctor.  We live in St. Louis and it would cost $500+ to fly up there to talk to the doctor.  We'll figure out how to do it, but I don't want to go all the way up there and have them tell me that he won't qualify because of prior treatment--they should be able to do that over the phone, right?  Thanks for any help--we're totally overwhelmed and confused. 

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MariaH's picture
Replies 5
Last reply 9/26/2011 - 2:18pm

Well, as I had mentioned before, Dave finished his second week of IL-2 last Friday, September 16.  Other than the usual side effects (fatigue, itchy, peeling skin) he felt well.  However, on Sunday afternoon he started complaining of blurry vision.  On Monday and Tuesday it was the same, and Wednesday morning it was bad enough to call his oncologist (Dr. Khushulani).  He told him to see his optholmologist immediately (Dave is blind in his left eye due to a childhood injury).  His optic nerve was slightly swollen, so he recommended a brain MRI to rule out brain mets.  MRI was good, so his onc and optho agreed it was a rare side effect and would improve.  However, by Friday morning Dave's vision decreased so much he could no longer see.  We rushed him back into his optholmologist, who confirmed that by then Dave's optic nerve and optic disc were severely swollen.  They immediately started him on 80mg prednisone to decrease the swelling, knowing that the steroids would contradict the IL-2.  However, to Dave this was a quality vs quantity of life issue - and he wanted his vision back.  Since his optho was not 100% sure of Dave's vision returning, I cannot tell you how happy we were that he woke up this morning and could see shadows and muted colors again - a significant improvement. 

Apparently, Dave had a "toxic" reaction to the IL-2.  We do not know what triggered this or whether it had to do with the fact that he had his other eye removed 10 years ago (he had kept his bad eye, and eventually developed glaucoma in it).  The prednisone seems to be working, and we are hoping that his vision continues to improve to normal over the next week.

I thought I would throw this out to the board in the event anybody else ever encounters this.  We (meaning I, the onc, the optho) could not find a case study or any reference where this had happened before.  But maybe, if this ever happens to anybody else, our situation would pop up in their search.

Most certainly Dave will be looking into other treatment options, but in the meantime, I still believe that IL-2 (or studies involving IL-2) is your best chance for first line complete response.  I just keep praying that eventually, they will find a better one.

Best wishes to you all,



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KatyWI's picture
Replies 8
Last reply 9/26/2011 - 2:38am

Two weeks ago today, I went to Madison, Wisconsin, and completed my Ironman journey.  No - scratch that - I raced, I struggled, and I triumphed.  I finished my 2.4 mile swim, 112 mile bike ride, and 26.2 mile run in 12 hours, 38 minutes, and 22 seconds, right about the top quarter of the field.  Beyond healthy - I was unstoppable.

Friday, I went back to Madison for my 3-month scans.  While I was training over the summer, even while I was enjoying one glorious Sunday two weeks ago where everyone makes you feel like a rock star, mm was growing.  If brain mets were bad, leptomeningeal mets are worse.  It looks like I have at least three spots on the brain lining, plus a new one within the brain.  The met in my left breast that IL-2 knocked out appears to be growing again, too, but that's the least of our concerns at the moment.

The immediate plan is to start whole brain radiation as soon as Monday.  After I finish that, Dr. Albertini and I will figure out what to do next.  He mentioned re-inducing ipi; he's had some people have success on Temodar.  Then there's the intrathecal route, like Amy did.  Or studies - some don't exclude leptomeningeal disease if you are asymptomatic, which I am.  Does anybody have a really good medical oncologist with lots of brain experience we could consult? 

I choose to live my life on the wellness side of that thin line.  I ran 10 miles yesterday, and now I think I shall go to the grocery store.  You can bet you'll see my bald little head bopping along the trails later this fall.  Well, actually you won't because I'll be wearing a hat, but you get the picture. 


PS.  A special thank you to those who donated to the MRF through my race.  Together we raised $1600.  If you consider that a career development grant through the MRF is $50,000, we just funded a week and a half of research.  Somewhere out there, there's a week and a half worth of work that's going to change the world.  Maybe our little contribution will be the one. 

Just keep going!

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nikki's picture
Replies 0

I was so sorry to hear of Nicole's passing.  She will be so very missed....and to Donna what a lovely, lovely letter to Tim.  It brought tears to my eyes and I understand how much you meant to each other and how heavy your heart is now. You are a very special person indeed.

Does anyone have the link/address to Nic's blog?  I hadn't read it in such a long time...and can't refind it.




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nikki's picture
Replies 2
Last reply 9/25/2011 - 11:40am
Replies by: nikki, Anonymous

I was so sorry to hear of Nicole's passing.  She will be so very missed....and to Donna what a lovely, lovely letter to Tim.  It brought tears to my eyes and I understand how much you meant to each other and how heavy your heart is now. You are a very special person indeed.

Does anyone have the link/address to Nic's blog?  I hadn't read it in such a long time...and can't refind it.




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Bobman's picture
Replies 3
Last reply 9/25/2011 - 7:06am

Undoubtedly MM had begun to invade my body years ago, while I was still deep in the Colorado wilderness. In that serene environment, the only real natural threat to life was an occasional rogue bear. Yeah, they ate my chickens, turkeys, and any other animal caught off guard near my cabin, but I was after all in their world, and such were the rules. On more than one encounter with them, they put the fear into me, that I could be eaten as well. Over the years I adapted to the threat they posed, and mostly lived in harmony with them. Country rules. Simple, easy to understand.

     Fast forward a few years, and I now find myself living on a island with no real natural threats, but  a MM diagnosis, that feeds on me, or off of me, by no rules a country boy can understand. At least when a bear was being aggressive, the rules of engagement were clear. Sometimes it was as simple as just running my ass back into my cabin. Sometimes it was not that simple, but still, rules applied.

 Now I go see a derm. every 12 weeks, and he reminds me that given my many personal traits, and what my body is doing between visits, that I am in a fight. The only way I know I'm in a fight, is this thing called MM produces little black spots on my body, that he takes a small knife to, sends to a lab, then refers me out to another guy with a knife, who cuts bigger and deeper. Oh MM, how I wish you would just come walking down my driveway posing a threat to me. I would have something for you to deal with, and I would tell the story of how I laid waste to your sneaky ass. Thats just my simple country logic fantasizing what I would do. But it does give me some pleasure to imagine such a duel.But no, you sneak around, only show yourself if you please. And relentlessly take beautiful people away from us. If only we could be left alone in a room together for a night. I would go medevil on you, no doubt.

  MM you have changed my conciousness. Besides trying to soak in every second of this life, and be present with the moment, I also have the contradiction to that. Anxiously waiting for the future and what it holds. Like right now, its a beautiful day in paradise, just beautiful. The flowers are exquisite. But, my derm. is out of town for a couple weeks, and wants to re-biopsy a place on my arm, that pathology says, "we need another sample". Beholding the flower, and hoping my derm. hurries his butt back here and finishes the job. Goofy duality.


We are one.

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ValinMtl's picture
Replies 15
Last reply 9/26/2011 - 7:45pm

Just to let you know that I have not forgotten about each and every one of you.   Days has been very difficult.  Keeping food down and trying to stop the aching from lymphedema.  I also didn't want to say anything too quickly.  I go for tests starting next Tuesday for 3 days and pray that I have  regression...then I will give a report.  I will be having a scan and results, very nervous, it looks pretty good but I don't want to celebrate too early.  Take care.  Val  xx

Live Laugh Love Nothing is worth more than this day!

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ad2424's picture
Replies 7
Last reply 9/25/2011 - 10:05pm

I am considering doing a trial with Weber at Moffitt (PD1 + antibody - 1106). I only know of 1 person on it right now. If anyone else is on it and willing to share please write back. Thanks.

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drujienna's picture
Replies 11
Last reply 3/16/2012 - 12:40pm
Replies by: Anonymous, davet

For months people have been asking this question.   His office does not tell you that he's been gone since the end of May until you actually arrive there for your appointment.  In the beginning patients were told that he was "taking a little time off and letting another doctor see patients."  But it has been five months now since he has been at the Angeles clinic and there is no forwarding address.  Where is he?  His medical liscence has not been revoked.  No hint of scandal has made it to the newspapers or the MRF and its associates.  Where has he gone?  People in the middle of treatment need him!

Any info would be appreciated.


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JudyinCA's picture
Replies 10
Last reply 9/26/2011 - 8:01pm

It's been a long time since I've been on this board, and it's gotten pretty high tech since the last time I checked it.  My husband Peter was diagnosed with stage IV melanoma in Oct 1999.  It was found first in his bowel, then in his brain, then a couple of years later in his chest.  The amazing thing is that he has been NED since  2001.  He has been working and in good health.  In 1999 when I read on this board that stage IV people were NED, I actually thought they were lying.  There is hope!

Peter would not have survived without two exceptional doctors.  His surgical oncologist is Leland Foshag, (John Wayne Cancer Institute and Angeles Clinic). His medical oncologist is Steve O'Day, who started The Angeles Clinic.  We were blindsided when we went for Peter's scans on Thursday and told that he is no longer with the practice. The Angeles Clinic will never be the same. He is irreplaceable.

Judy Clifford

Take charge of your treatment, and find the best doctors out there!

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Anonymous's picture
Replies 0

Testing the new system

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CKasper's picture
Replies 9
Last reply 9/27/2011 - 11:16am

Hello to any one who reads this post.

I have been dealing with this disease since 1984.  My worst time has been since 2005 when I was staged III A or B.  I'm not sure because I have conflicting dr's notes.  At this point I don't think it matters.

In the years that followed I have gone through several surgeries and tried High dose interferon therapy which did not work for me as I had a very bad reaction from the immune drugs.

Last fall after getting out of the hospital for a serious heart problem, I was told I was cancer free....yeah, hurray!!!

Then my life really fell apart.  My husband left me, we are going through a divorce and my adult children hardly talk to me because they want to be neutral regarding the divorce.

I live in a very cold place in the winter and barely got through, I ended up in the hopstial I believe 3 times.

Every time I go to my internal med doctor he says I look good, and I just need to be positive and keep going.  I haven't had any body scans since last fall.  I had one for my head because I fell down the stairs (one of my hospital stays).

So since my "cancer free" delcaration, I have heart problems, falling problems, rash and welt problems, chronic pain problems, but I still got around, however I have noticed I have lost a lot of weight and my strength isn't what it was just 3 months ago.

About 10 days ago, I got welts, both arms became swollen, I have a hard time going to the bathroom, and on one night I got up and I felt I was going to pass out, this has happend a couple more times since then. 

I am eating when I have the strength to get up and fix myself something to eat. 

I have new pain in the right side of my body where all of this stupid disease started.  I am having a very difficult time taking care of myself.

I've been on and off this board over the years and I have read some pretty courageous things, but I think I am very tired of this disease and I think its back, and I think I'm going to let it take its course. 

I am frightend about getting up, and having the heart problem and passing out or dying.  Not so much the dying, but the lonliness and the fact that it would probably be days or weeks before anyone would say hey have your heard from her?

I'd like to say I do respect each and everyone's decisions on this board over the years, and I have seen great courage from those of you who ventured out and tried new things.

I'm tired of writing for right now and Wish you all good things and I'm going to try to do this every day, but the computer is upstairs and I' m not so good about being upstairs right now.  I do pretty much all my living on the first floor and sleep on the couch. 

So, thank you all for being an inspiration.  And hopefully I'll write and converse with you again soon.

I decided to post this anonymous.  However I am a Melanoma survivor of  27 years.

Peace be with you all, and hopefully the road to good health,




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The Ultimate Systematic Combinatorial Therapy

ICOS expression,To secrete and what to secrete is the question. My research has taken me to the costimulators of the T-cell.   

The level of ICOS surface expression regulates the magnitude of the in vivo Th1/Th2 ratio, perhaps by influencing Th2 differentiation. 


The linkage between low ICOS expression and “early” cytokines, and between intermediate/high ICOS expression and “late” cytokines is intriguing and could mean that ICOS is gradually up-regulated in the course of progressing T cell differentiation.   

ICOS-low-cells were found to be loosely associated with the early cytokines interleukin (IL)-2, IL-3, IL-6, and interferon (IFN)-gamma. 

ICOS-medium cells, the large majority of ICOS_ T cells in vivo, were very tightly associated with the synthesis of the T-helper type 2 (Th2) cytokines IL-4, IL-5, and IL-13, and these cells exhibited potent inflammatoryeffects in vivo.

In contrast, ICOS-highT cells were highly and selectively linked to the antiinflammatory cytokine IL-10.

The strength of the effector response of Th cells is regulated by the control of ICOS expression.

Overall, this data seem to indicate that ICOS cell surface density serves as a regulatory mechanism for the release of cytokines with different immunological properties.

We want the low expression of ICOS which seems to differeniate the niave T-cells towards the TH1 T-cell phenotype. We can accomplish that with Yervoy  (Anti-CTLA-4). STAT5 signaling  is found in both the Th2 and Treg pathway.It just so happens Yervoy causes the  Phosphorylation of STAT5 to decreased significantly with increasing concentrations . Yervoy skews the T-cell differentiation towards the Th1/Th17 phenotype whick we want.

Blockade of PD-1 by monoclonal antibodies specific to its ligands (PD-L1 and PD-L2) results in significant enhancement of proliferation and cytokine (gamma interferon [IFN-gamma] and interleukin-2 [IL-2]) secretion by tumor-specific CTLs. PD-1 blockade also resulted in down-regulation of intracellular FoxP3 expression by Tregs.

So by do a combinatorial therapy with Yervoy and PD-1 antibodies, It would most likely have a synergistic immune response.

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bcl's picture
Replies 7
Last reply 9/26/2011 - 6:40pm
Replies by: Donna, bcl, Anonymous, mombase, jax2007gxp, Donna M.

Governor Brown of California is considering whether to sign or veto hundreds of pieces of legislation. One of these bills is SB 746, a teen tan ban for under 18's 

For those so inclined, please send a message of support for SB 746 before 10/10 

And please don't hold back if you live outside of CA   -skin cancer is a global issue and you can bet industry will not have the same reservations. (We had spokespeople from the US flood our teen tanning hearings in Canada.) These hard fought precedent setting laws are needed to raise skin cancer awareness and save lives.

Thank you, linda



snail mail

Governor Jerry Brown
c/o State Capitol, Suite 1173
Sacramento, CA 95814

Fax: (916) 558-3160


Sign the tanning bill, Guv

Published by The Reporter
Posted: 09/23/2011 01:05:23 AM PDT


Consider this familiar storyline: A common, nonessential, human activity is revealed with certainty to harm or kill repeat users. Modest measures get proposed to regulate the activity and protect individual and public health.

The industry that has grown large by promoting the activity, however, is trying to derail the proposed regulation. They say the science isn't conclusive and, besides, individuals should be able to choose for themselves what to do ("Veto tanning bill," Sept. 17).

We could be talking about smoking. Instead, we're talking about the use of indoor tanning beds, which has been conclusively shown to cause melanoma and other cancers. Senate Bill 746 is a common-sense approach to prevent indoor-tanning salons from offering their services to minors.

Under SB 746, anyone 18 and older can absolutely still use tanning beds (and they can buy cigarettes afterward, if they wish). But the principle behind the bill is that the use of indoor tanning beds is risky and the results can be fatal, and so the choice to use them should be -- in every sense of the term -- an adult decision.

As one might guess, SB 746 is being fought aggressively by the indoor tanning industry, represented by the Indoor Tanning Association. Their claims -- that the science is inconclusive and that 15-year-olds know best -- could easily have been borrowed from the tobacco industry during the second half of the last century. But their claims need refuting, which is not difficult to do:  The scientific evidence that tanning beds kill is airtight. Multiple studies have specifically confirmed the direct causal connection between indoor tanning beds and deadly skin cancer. These studies have themselves undergone meta-analysis from the International Agency for Research on Cancer, which has classified the radiation from tanning beds as "carcinogenic to humans." A 2004 study in England found that 25 percent of the melanomas found in young women owed to the use of tanning beds.

In 2009 the World Health Organization classified tanning beds as a Level 1 carcinogen, the same as plutonium and cigarettes. The U.S. Department of Health and Human Services and the Food and Drug administration have added tanning beds to their lists of dangerous carcinogens. The house of medicine uniformly agrees tanning beds cause cancer. The American Academy of Pediatrics recommends prohibitions like that in SB 746, which is sponsored by the California Society of Dermatology and Dermatologic Surgery and the Aim at Melanoma Foundation. Health insurers such as Kaiser Permanente and Anthem Blue Cross also support the tanning-bed ban proposed in SB 746. More recently, a Stanford Cancer Institute study in March shows that skin-cancer rates among girls and young women from high-income ZIP codes have doubled in the past 20 years.

* We don't let children smoke cigarettes or buy vodka with parental consent. Current law allows 14- to 17-year-olds to use tanning beds with parental consent, the rationale being that parents can be expected to better understand the risks than do their kids. The parental consent rule, unfortunately, is inadequately enforced. Some forms provide little information beyond space for a signature. In other cases, consent forms can portray "sunburn" as the major health concern rather than malignant cancer. And parents with questions about health and safety are typically on their own, as no specific training in health risks is required of salon employees.

* There is an alternative to tanning beds. There is a safe, effective alternative to tanning beds that many tanning salons already offer: commercial spray tanning. This tanning is growing in popularity, and celebrities such as Snookie of Jersey Shore have switched to spray-tanning. SB 746 is less a threat to tanning salons than an opportunity to serve valued clients in a safer, more responsible way.

Because of the incontrovertible medical evidence linking tanning beds directly to skin cancer, several countries in Europe such as France and England have banned tanning beds for anyone under 18. Brazil has banned tanning beds completely for all ages. In the United States, 30 states have some restrictions on teen UVR tanning. Texas is the most progressive, with a tanning-bed ban for anyone under 16 1/2. New York, Illinois, Ohio and Rhode Island currently have bills in progress similar to SB 746.

It is time we follow where the evidence takes us and urge Gov. Brown to sign a public-health bill that has enjoyed bipartisan support. We in California must act now so that someday we won't have to regret the suffering and loss of life that occurred after we already knew better.

State Sen. Ted W. Lieu, Torrance

Dr. Isaac Neuhaus, San Francisco

Sen. Ted W. Lieu, D-Torrance, represents nearly 1 million Los Angeles-area residents. Dr. Isaac Neuhaus, is a board-certified dermatologist at University of California, San Francisco's School of Medicine and president of the California Society of Dermatology and Dermatologic Surgery. For more, visit

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