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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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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justlittleoleme's picture
Replies 10
Last reply 9/26/2011 - 5:58pm

Hi, my hubby was recently rediagnosed with Melanoma. 

His original melanoma was diagnosed on 2/15/05 and he had a wide area excision on 3/29/05 with a sentinel lymph node biopsy.  At that time, no further treatment was recommended and he has been NED since that time.  He was classified as Stage 2A.

His recurrence is at the original location in the parotid.  The tumor is 27mmx26mmx30mm.  They are staging him at Stage 3 prior to surgery.

We are scheduled for a parotidectomy with facial nerve dissection, nerve graft and neck dissection on 9/23/11 at the University of Michigan Ann Arbor.  Our local cancer center (which we have loved) is unable to do the surgery due to the invasive nature.  The oncologist is advocating for just radiation after the surgery.

My question is this:  Should we be looking at further treatments? Clinical Trials?

We have another consult scheduled with Dr. Logan at the IU Simon Cancer Center on 9/19/11.

Thanks for your insight!

We don't know how strong we are until being strong is the only choice we have.

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dearfoam's picture
Replies 6
Last reply 9/26/2011 - 4:53pm
Replies by: dearfoam, Anonymous, Charlie S

Went in to find out if dad's tumors tested positive so he could try Zelboraf, and after 3 weeks of waiting, they told us the tissue sample was insufficient. Doc thought there might be a chance we could get some Zelboraf and see if it does in fact have an effect, thereby confirming without another biopsy. I doubt Roche will do that for us since it would have to be through their patient assistance program.

So in the meantime dad will continue Temodar, which is only slightly effective - 2/ 20 or so tumors shranks some (brain), while 2 of 2o grew (on spleen and colon).

Dr thinks we will probably have to biopsy a brain tumor. All I think about is how the original biopsy in April landed him in the hospital for over a week witha collapsed lung. Ugh. Don't even want to know what can happen to the brain.

Wait, wait, wait - it's all I seem to do.

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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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Anonymous's picture
Replies 8
Last reply 9/26/2011 - 3:10pm
Replies by: MARTERWAG, MariaH, Charlie S, Anonymous, mombase, momof2kids, Tim--MRF



I would appreciate any information about qualifying for SSDI in California?

I have been stage 3c since 2009. As of September 19, 2011, I am now Stage 4 with mets on lung, suq in leg & chest.

Now that I am stage 4, do you automaticallly qualify for SSDI once my doctors complete the paperwork confirmating my diagnosis of Stage 4??

I had surgery on my leg, in June 2011, and have been recuperating. At the time ofthe surgery, I was stage 3, then on Sept 19, 2011, my scans indicated progession to stage 4.

What would the effective date be that I could qualify for SSDI? How long does it take to get SSDI??

Thank you for replying to my post.



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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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JoshF's picture
Replies 14
Last reply 9/26/2011 - 12:54pm

Hi All-

I was diagnosed in April with Melanoma. I had gone to dermatologists in the past and went earlier this year because of a small lump in my right cheek and to have my skin checked. Skin looked good and he felt ilumpp in cheek was a cyst and left it to me as whther or not I wanted it removed. Well I had it removed and suprise....melanoma!!! Intially, the pathology reports suggested metastatic melanoma but after many skin checks and pet scan we were still baffled. At this time my aunt found Dr. Richards who gathered all information, path slides etc... and determined that I most likely had a case of primary dermal melanoma...not metastatic melanoma. To be sure he ordered a sentinel node biopsy to be performed at the same time they were doing the wide excision in an attempt to obtain clear margins. They were able to obtain clear margins and lymph node biopsy was negative. That was almost 6 months ago and this disease has me terrified. It was just so unusual when you think of melanoma. Anyone ever heard of something like this? I required no treatment but have stayed on aggressive follow up with dermatologist and Dr. Richards. I will have CT Scan next month.

Let's work for better treatments....for a cure!!!!

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kness's picture
Replies 6
Last reply 9/26/2011 - 9:09am

On monday I was diagnosised with melanoma. I had a moke taken off of my chest. It came back as a clarks level 3 and 1.5 mm. Soooo.... I have surgery scheduled for this coming monday. All of this is new to me and I am not sure exaclty what it means. Does clarks level 3 mean stage 3? Does this mean it has spread to any other places... I just need to know what this means, what most likely will happen, what to expect - ANYTHING that can help ease my mind - because right now I am scared!

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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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dearfoam's picture
Replies 7
Last reply 9/25/2011 - 11:31pm


I haven't posted here before, but have lurked a little while. I am taking care of dad who has stage 4 Melanoma (dx April 2011), with mets to brain and lungs among others. At least 20 tumors. We have had some slowed growth since after his whole brain radiation in late spring and 4 courses of 21 days on/ 7 days off Temodar (started 5th course this week). We see his two Oncologisits (Melanoma Dr and the Radio Onc) next week. Should find out if he has the mutation that goes with Zelboraf and wether or not Radio Onc thinks we should do more radiation, or if the others have shrunk enough to be removed with gamma knife, and if that is even a good idea.

Out of about 6 brain mets, two showed shrinkage (1/3 and 1/2) on the last MRI in early Sept compared to June. Two abdominal tumors (spleen and colon) had also grown according to same week's CT scan, but just by a few mm.

So we don't have the results in and don't knwo if Zelboraf will be an option, but I am wondering if anyone has had brain mets affected by Zelboraf?

For some background:

It's been a rough year having to retire a workaholic dad. We had some hard times where it looked like he was about to go any day. He'd had a lung collapse after getting the biopsy in April, then a bout with blood clots in both lungs in late May. He feels a lot better but has basically been on steroids since April. Trying to wean him off = bad news. He is also taking antidepressants, ritalin, blood pressure med, etc to help counter the Temodar/ deal with other problems and help him feel with it, motivate to read and talk, eat, etc. He is really lucky and not had much pain to speak of, just headaches earlier on before treatment was started in earnest.

I'm pretty concerned about everyhting, duh. Poor dad has no concept of what is really going on (major denial). Like, he listens and stuff, but only selectively repeats (and exaggerates) what works for him, which I appreciate and get on one level, but not so much where he is denying himself things. I appreciate his stubborness to give into cancer, but am kinda mad that he won't take advantage of the time "extended" to his life already. (It's better than it was since he has been on Zoloft and more of the dechadron.) He doesn't understand what treatments do and don't do, and that he will be on them indefinitely. It is really frustrating for us when he wants to move out of our house yet can't drive or think straight. Doesn't want to tell anayone things he'd like to do, because he is about to get all better "in a month or two" and go back to work, and not need to worry about his wishes...

I guess I am not alone in all this, but it sure isn't fun being the one in touch with reality!

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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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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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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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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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rbruce's picture
Replies 7
Last reply 9/24/2011 - 9:55pm
Replies by: JerryfromFauq, rbruce, jim Breitfeller, Anonymous

My UCSF Onc just provided the following link to a trial they have going.  I am not familiar with this at all.  I'm waiting for an Anti-PD1 trial they say is going to start in November and he suggests doing this one in the meantime. 

Any help would be appreciated.

The drug is GSK 2126458 and it is a dual PI3Kinase and MTOR inhibitor given by mouth.  1 pill a day on 28 day cycle.



The circumstances of our lives have as much power as we choose to give them. David McNally

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