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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natasha's picture
Replies 5
Last reply 2/25/2012 - 1:38pm

Hi everyone!

Would be very nice to hear from people , who become pregnant with dianosis.

This is very important for me.

I developed my primary melanoma during IVF to become pregnant,I lost my child so it is nice to know I can risk and become pregnant again.

One of doctors said I cannot risk ,because hormones can effect second melanoma.

Another doctor said go ahead now.

Nurse recommended to wait for couple of years.

I am lost in all opinions. I am thinking about adoption anywhere , but would be nice to have biological child as well.

Whould be very important for me to hear real stories of real people ,not just statistic facts.

Thank you very much


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Cynaburst's picture
Replies 3
Last reply 4/13/2012 - 12:26pm
Replies by: Bob B., Cynaburst

I just had my second wide excision in a decade.  While my first lesion was an in situ, this one was a Stage 1A, and my surgeon also recommended a SNB due to the presence of some regression and the fact that this lesion regrew at a previous biopsy site in only 6 months time.

I was unbelievably relieved to find out that my pathology on both the wide excision and SNB came back negative.  However, I am now completely paranoid and want to do whatever I can to make sure that I am as vigilant against future problems as I can be. 

Has anyone in the L.A. area had photographic mole mapping professionally done? If so, where did you do it?  Did you continue to follow up with your regular derm, or did you switch to someone who does the mole mapping?  I would like to stay with my current derm, but since she does not offer mole mapping, I would lke to find a way to have her incorporate the technology into her exams.  Any insight as to cost?

Thanks for any advice or input you can give me.

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WalterA's picture
Replies 7
Last reply 2/29/2012 - 5:06am

I had a PET/CT scan yesterday (Thursday), and it showed four lesions in/on my right lung. They are of recent origin, and they are very small. Because they are so small, my doctor believes they can be treated with chemotherapy. (My two previous recurrences -- one lesion in my left lung and one in my liver -- were successfully dealt with by CyberKnife and RFA treatment, but these are two small.) I'm not sure when things will get rolling, but I'm back in the lair of the beast. Next week, I will "celebrate" the 10th anniversary of my initial diagnosis, so this is an interesting time.

"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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robbier's picture
Replies 3
Last reply 2/24/2012 - 3:38pm

I am very Thankful that my latest test showed that I am still in remission of the melanoma cncer, stage lll.  I still Thank God for this, and even though I nkow that I just started this journey, today I am 5 months into remission.  Just so thankful for the positive results and very thankful for the good news.

I believe in God and his son Jesus, I know that this is not everyones belief. I know that God has me in his hand, I might not like what I am going through but God is the one that gives me strength fromd day to day.

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vikas1012's picture
Replies 4
Last reply 2/24/2012 - 6:18pm


Hi All,

I am using this site to understand information about Malenoma. Myself vikas from India my father diagnose with Anal malenoma 2 months back and doctor suggested APR colostomy surgery.

As per PET this is not spread to the body and limited to anus opening. I dont know the axact size of tumor, as my dad had undergon surgery for fistula after that local doctor suspected something wrong and send the block for histopathy where is was detected malegnent melanoma.

I am confused and very much disatrubed with this

Is colostomy only option for this? any exepert in this forum can suggest me the exact tretment.

Thanks with Regards,


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Anonymous's picture
Replies 6
Last reply 2/27/2012 - 3:17pm

My Mom is stage 4 with mets. She did IL2, Yervoy and in January completed morab004 study but nothing helped. She does not want to do chemo, late last year she did do radiation on the primary tumor (on her upper arm) as it was getting quite large but says she doesn't want to do it again. The doctors say there is only one other option, which includes high doses of chemo, so I am searching for alternative treatments. Any information would be appreciated.

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Jydnew's picture
Replies 10
Last reply 2/23/2012 - 7:29pm


My daughter is 2.5 years old, with flaming red hair, bright blue eyes, and porcelain white skin.  Her dad, my husband, is a 10 year stage iiia melanoma survivor, diagnosed at age 26.  Both her dad and I have tons of moles, and I am freckled from head to toe.  Obviously, she has many risk factors for melanoma, and I am at a loss as to the right way to minimize her risk.  I've already started annual visits to the dermatologist, and she does already have a few moles.

Do I slather her with sunscreen every time we go outside?  Or will that create a vitamin D deficiency that will ultimately weaken her system?

Do I keep her out of the sun between 10 and 2 in the summer months (this is what I have been doing)?  Or do I follow the research article posted on here recently that said that those peak hours are the best time to be out?

The oncological nurse at my husband's oncology office says the research about needing un-blocked exposure to UV for vitamin D is dangerous hogwash.  I can't believe that, since there seems to be a direct correlation to rising melanoma rates and more "weekend warriors" who spend all their workweek hours indoors and then live it up unprotected on vacations.  

I feel at a loss as to what to believe in the literature and how to best minimize my daughter's risk.  Take this exact moment.  It's a beautiful sunny day at 9am in eastern Pennsylvania.  I plan to take her out to play with no sunscreen, since it's still winter, it's early in the day, and she'll be covered with a jacket and a winter hat.  Her face will be uncovered.  Is that wise?


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Jan in OC's picture
Replies 23
Last reply 2/25/2012 - 8:07pm

Hey everyone, 

Haven't been on in awhile.  Dirk and I have been fighting hard to get his brain mets under control.  After 3 rounds of Abraxene, the January scans showed that 6 brain tumors started growing.  Tough news, because in December, it looked like they were all stable.  He has already done WBR, so we were scheduled for Gamma Knife on 2/10.  Since then, he has not bounced back.  For the last week he has been sleeping a lot, very little appetite, some confusion, difficulty speaking, etc.  I contacted MD Anderson and Dr Papa saw him today.  I knew before we got there, that he was not good, his skin and the whites of his eyes were yellow.  But I was hoping they could admit him and hydrate or give blood transfusion......anything....

Sadly, after getting exam and blood results, Papa said his liver is failing.  No more treatments.  We have tried all that we can.  The social worker brought in a batch of brochures for hospice care and i need to call her in the morning with our choice.  Doc said we could have a day, a week, possibly a month (highly unlikely though).  

Just trying to wrap my brain (and heart) around this.  Not sure how to deal with this next part, but as always, one day at a time.

Thanks everyone for listening.


laughter is the best medicine

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gabsound's picture
Replies 2
Last reply 2/23/2012 - 12:28pm


I finished my 4th dose of Yervoy 5 days ago. Minimal symptoms with 1st and second dose ( a little itching, occasional diarrhea (prob food related) and a little tired. After 3rd dose started to have some fever and chills just at night on days I was really tired. I also developed some joint pain especially in my left hip ( surgery on right leg) and some in my back. This was severe at times. Also just generalized stiffness like someone with arthritis. I don't know if this is from the IPPI. I was also doing radiation on my right leg at the same time and think the awkward position could have something to do with this. This is better in the last week ( finished rad thx last week), but I still have aching in my hips at night.

Had visit w oncologist with last treatment and he told me my liver enzymes were up. I also found out LDH was up. He also did a panel to check for arthritis due to the pain I was having. This was fine except C reactive protein which was 26-nml cut off is like 10. This is a sign of inflammation in the body. My dr said he wasn't worried about this number, but sounded more concerned about liver enzymes. Of course I scoured the Internet on CRP levels and found this could be a marker of advancing disease in melanoma patients (ugh).

So now of course I'm thinking pain in the bones must be mets. But, the more rational side of me thinks this should all just be related to the Yervoy not to mention the radiation which I know caused a lot of inflammation due to the increased redness in my skin (fortunately not painful except a little irritated in groin area where undies rub).

Has anyone else had LDH and liver enzymes rise during Yervoy treatments? How about CRP levels?

I'll do PET/CT and brain MRI in next 2-3 weeks. This time severe scanxiety.

Julie in Las Vegas

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Lilylove414's picture
Replies 5
Last reply 2/23/2012 - 8:04am

I know it's been a while. So I'll give y'all an update. My first week of interferon SUCKED! I threw up constantly, could barely eat and I got sick of crackers real fast. I also lost 10 pounds! So I told my doctor and she felt so bad about it. She temporarily stopped treatment because it was raising my liver enzymes WAY too high, like 300 over. So I spent the last week getting blood drawn and eating up a storm haha. Oh, and Matt is finally my boyfriend! YES!! He's such a sweety.

Anywho, today I was given the ok to do treatment again. They included a steroid and only gave me half the original dose of interferon. So much better! Well they gave me a LOT of fluids so I've been peeing a lot, but the big thing is I'm not sick and I can hold down food. I did have a stomach cramp and a headache, but I imagine it's an easy fix.

My liver is good, I'm feeling not horrible but very hot, in the not sexy way and I am almost halfway done with my first month! Praise God! Oh, no lymphedema! Healing very well, I can lift my arm high enough to wash my hair, shave (ish), the good stuff.

Anyway, thought y'all would like to know what's new! God bless lovelies!

If God is for us, who can be against us?

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Anonymous's picture
Replies 6
Last reply 4/19/2012 - 7:38am
Replies by: Wally, Anonymous, SStamps, rbruce, Swanee, boot2aboot



I am a stage 4 and have active disease on my legs & lungs.


I have had "one" sore rib (about 1/3 of the rib) for about 3 weeks. Of course, my mind thinks it is mel. I do not remember straining or hurting my rib cage.


I sincerely would appreciate any  feedback from  those with mets on the rib.  What are the symptoms?


Thank you for taking the time to reply tomy post.



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natasha's picture
Replies 6
Last reply 2/28/2012 - 9:58am

Hi everyone !!

   Had my appointment with doctor today. He said I do not need to worry ,my  Breslow is 0.2 mm Clark 2.

   I will be on follow up with derm for 3 years.

 Doctor said I can go for another IVF treatment to get pregnant. (I developed my melanoma during my first IVF)

I am confused - how can I do IVF again after all this happened to me after treatment ??

Abd another question - is it necesseary to do wide excition , if primary was removed with 1 cm around and all margins clear? Doctor said they are still deciding do I need Wider cut out or not .

Don't you know ,how it should be in my case?

Thank you for all your support and information you gave me during all this month since I was diagnosed


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beatricefromPARIS's picture
Replies 2
Last reply 2/24/2012 - 5:05pm

Hi all,

After good response to IPI 1, I had reinduction but all existing mets have now progressed at 3 months of IPI 2 (no new ones).

Onc team has concluded that Vemurafenib is to be started.

I can't find any data on IPI reinduction rates of success so I would welcome your experience for a little on-line survey!

Beatrice, stage IV since Feb 2009 (6 different treatments so far)

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boot2aboot's picture
Replies 4
Last reply 2/25/2012 - 7:24am
Replies by: MeNDave, boot2aboot, Leigh

I am still trying to figure out why i have melanoma when i have NEVER abused the sunshine....hmmm...i used retinol and SPF sunscreen when i went out in the sun and now i am wondering if these chemicals cooked a cancer in me...

This is an old post from AOL  and i wished i had read it when it was published back in 2010...

WASHINGTON (May 24) -- Almost half of the 500 most popular sunscreen products may actually increase the speed at which malignant cells develop and spread skin cancer because they contain vitamin A or its derivatives, according to an evaluation of those products released today. 

AOL News also has learned through documents and interviews that the Food and Drug Administration has known of the potential danger for as long as a decade without alerting the public, which the FDA denies.

The study was released with Memorial Day weekend approaching. Store shelves throughout the country are already crammed with tubes, jars, bottles and spray cans of sunscreen.

The white goop, creams and ointments might prevent sunburn. But don't count on them to keep the ultraviolet light from destroying your skin cells and causing tumors and lesions, according to researchers at Environmental Working Group.

In their annual report to consumers on sunscreen, they say that only 39 of the 500 products they examined were considered safe and effective to use.

The report cites these problems with bogus sun protection factor (SPF) numbers:

  • The use of the hormone-disrupting chemical oxybenzone, which penetrates the skin and enters the bloodstream.
  • Overstated claims about performance.
  • The lack of needed regulations and oversight by the Food and Drug Administration.

But the most alarming disclosure in this year's report is the finding that vitamin A and its derivatives, retinol and retinyl palmitate, may speed up the cancer that sunscreen is used to prevent.

Chart showing relationship between Vitamin A and tumors.
Environmental Working Group

A dangerous additive

The industry includes vitamin A in its sunscreen formulations because it is an anti-oxidant that slows skin aging. 

But the EWG researchers found the initial findings of an FDA study of vitamin A's photocarcinogenic properties, meaning the possibility that it results in cancerous tumors when used on skin exposed to sunlight. 

"In that yearlong study, tumors and lesions developed up to 21 percent faster in lab animals coated in a vitamin A-laced cream than animals treated with a vitamin-free cream," the report said. 

The conclusion came from EWG's analysis of initial findings released last fall by the FDA and the National Toxicology Program, the federal government's principle evaluator of substances that raise public health concerns.

EWG's conclusions were subsequently scrutinized by outside toxicologists.

Based on the strength of the findings by FDA's own scientists, many in the public health community say they can't believe nor understand why the agency hasn't already notified the public of the possible danger.

"There was enough evidence 10 years ago for FDA to caution consumers against the use of vitamin A in sunscreens," Jane Houlihan, EWG's senior vice president for research, told AOL News.

"FDA launched this one-year study, completed their research and now 10 years later, they say nothing about it, just silence."

On Friday, the FDA said the allegations are not true.

"We have thoroughly checked and are not aware of any studies," an FDA spokesperson told AOL News. She said she checked with bosses throughout the agency and found no one who knew of the vitamin A sunscreen research being done by or on behalf of the agency. 

But documents from the FDA and the National Toxicology Program showed that the agency had done the research. 

"Retinyl palmitate was selected by (FDA's) Center for Food Safety and Applied Nutrition for photo-toxicity and photocarcinogenicity testing based on the increasingly widespread use of this compound in cosmetic retail products for use on sun-exposed skin," said an October 2000 report by the National Toxicology Program.

FDA's own website said the animal studies were done at its National Center for Toxicological Research in Jefferson, Ark. And it was scientists from the FDA center and National Toxicology Program who posted the study data last fall. 

In a perfect world

The ideal sunscreen would completely block the UV rays that cause sunburn, immune suppression and damaging free radicals. It would remain effective on the skin for several hours and not form harmful ingredients when degraded by UV light, the report said.

Graph of melanoma of the skin rates from 1975 to 2006.
National Cancer Institute
Graph of melanoma of the skin rates from 1975 to 2006. APC stands for annual percent change and AAPC stands for average annual percent change.

But in the U.S., there is currently no sunscreen that meets all of these criteria. European countries have more chemical combinations to offer, but in the U.S. the major choice is between the "chemical" sunscreens, which have inferior stability, penetrate the skin and may disrupt the body's hormone systems, and "mineral" sunscreens zinc and titanium dioxide. 

Increasingly, as AOL News reported in March, the industry is using titanium dioxide that is made nanosized, which a growing number of researchers believe have serious health implications.

The sunscreen industry cringes when EWG releases its yearly report -- this is its fourth. The industry charges that the advocacy group wants to do away with all sunscreen products, a claim that is not accurate. 

The report's researchers clearly say that an effective sunscreen prevents more damage than it causes, but it wants consumers to have accurate information on the limitations of what they buy and on the potentially harmful chemicals in some of those products.

EWG does warn consumers not to depend on any sunscreen for primary protection from the sun's harmful ultraviolet rays. Hats, clothing and shade are still the most reliable sun protection available, they say. 

Don't count on the numbers 

Some of us are old enough to remember when the idea of having a tan was good, a sign of health, when billboards and magazine ads featured the Coppertone girl showing off her tan when a puppy pulls down her bathing suit bottom.

Going for that tan, we coated our kids and ourselves with sun blockers with sun protection factors of 1 or 2. Some overly cautious parents might have smeared on a 4 during the hottest part of a day.

But we've learned of the dangers that come from exposure to the sun's rays, especially ultraviolet A and B. So today, drugstore shelves are crammed with sunscreens boasting SPFs of 30, 45, 80 or even higher. 

However, the new report says those numbers are often meaningless and dangerous because products with high SPF ratings sell a false sense of security, encouraging people using them to stay out in the sun longer.

"People don't get the high SPF they pay for," the report says. "People apply about a quarter of the recommended amount. So in everyday practice, a product labeled SPF 100 really performs like SPF 3.2, an SPF 30 rating equates to a 2.3 and an SPF 15 translates to 2."

In 2007, the report says, the FDA published proposed regulations that would prohibit manufacturers from labeling sunscreens with an SPF higher than "SPF 50." The agency wrote that higher values would be "inherently misleading," given that "there is no assurance that the specific values themselves are in fact truthful."

This is being widely ignored by the sunscreen makers who are heavily advertising their 80, 90 and 100 SPF products. 

"Flouting FDA's proposed regulation," companies substantially increased their high-SPF offerings in 2010 with one in six brands now listing SPF values higher than 50. "Neutrogena and Banana Boat stand out among the offenders, with six and four products labeled as 'SPF 100,' respectively," the new report says.


don't back up, don't back down

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yoopergirl's picture
Replies 11
Last reply 2/22/2012 - 8:06pm

I had my 3rd infusion of ipi on Monday, my labs were all good so they proceed with the treatment even though I had the chills and achy feeling, the nurse gave me tylenol and that seemed to help. Yesterday was a bad day along with the chills I developed diarrhea and still have it today so now is the time to call the doctor, I know he said to take immodeum and I do have it on hand but still want to talk to the doctor about checking for colitis, is there a blood test or cat scan, what do they do? I am so glad that I happened across this site it has brought so much information for me since my doctor is not familiar with Yervoy.   Will let you know what he says to do, can't call for another hour since Wisconsin is an hour behind us.    yoopergirl

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