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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willtolive's picture
Replies 3
Last reply 3/14/2012 - 11:30pm

Hi all


Just an update about my wife:

She begun ipi treatment March 11, 2011, the scans in June revealed that ipi had worked very well.

Here almost a year after, she is still NED. It is still unbelievable. To all you Warriors out there: keep fighting..!!!

I dont know, why ipi worked so well on my wife, but she had always been positive, even when it was worse, with hope and believe in her heart.

AND she went to a chinese doctor (who graduated in Beijing) and got acupuncture twice a week. Its impossible to say what makes you a responder, but I recommend the following, because it helped my wife. Maybe a combination got rid of the cancer?!


1) Stay positive (like himynameiskevin - a virtual lighttower for me and my family through 2011, all my hopes and prayers goes to you our fellow warrior)

2) Keep faith  that you someday will be NED.

3) Acupuncture, one or twice a week. Be sure that it is a original chinese doctor. Here in Europe, many try to learn the profession, but I think you have to be Chinese to really understand was goes on in your body, their knowledge about the bodybalance etc.

4) AVOID SUGAR! I know it´s hard to implement, but the craving only lasts a week or two, then your mind and body has written sugar off! Remember this: cancer cells gets nutrition from glycose/sugar. Cut sugar off and let the cancer cells starve to death! Many patients with cancer have a extraordinary desire for sugar, possibly related to the desire of the cancercells. Get the natural sugar from fruits instead. 

5) Excercise at least 3 times a week. Exercise is good for the immunesystem and is a part of preparing your body to fight the cancer. Besides it is good for your mind, and maybe you will loose weight as well.


Keep fighting all my friend




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Gene_S's picture
Replies 5
Last reply 3/13/2012 - 3:10am
Replies by: Gene_S, LynnLuc, kylez
Setback in research into cancer treatment
Marilynn Marchione, The Associated Press
07 March 2012 05:07

BOSTON - Scientists are reporting what could be very bad news for efforts to customize cancer treatment based on each person's genes.

They have discovered big differences from place to place in the same tumour as to which genes are active or mutated. They also found differences in the genetics of the main tumour and places where the cancer has spread.

This means that the single biopsies that doctors rely on to choose drugs are probably not giving a true view of the cancer's biology. It also means that treating cancer won't be as simple as many had hoped.

By analyzing tumours in unprecedented detail, "we're finding that the deeper you go, the more you find," said one study leader, Dr. Charles Swanton of the Cancer Research UK London Research Institute in England. "It's like going from a black-and-white television with four pixels to a colour television with thousands of pixels."

Yet the result is a fuzzier picture of how to treat the disease.

The study is reported in Thursday's New England Journal of Medicine.

It is a reality check for "overoptimism" in the field devoted to conquering cancer with new gene-targeting drugs, Dr. Dan Longo, a deputy editor at the journal, wrote in an editorial.

About 15 of these medicines are on the market now and hundreds more are in testing, but they have had only limited success. And the new study may help explain why.

The scientists used gene sequencing to a degree that has not been done before to study primary tumours and places where they spread in four patients with advanced kidney cancer. They found that two-thirds of gene mutations they detected were not present in all areas of the same tumour. They also were stunned to see different mutations in the same gene from one part of a tumour to another.

That means a single biopsy would reveal only a minority of mutations. Still, it's not clear whether doing more biopsies would improve accuracy, or how many or how often they should be done.

Although the study involved kidney cancer, independent experts said the results should apply to other cancers such as breast, lung and colon. And previous research suggests this is so.

"This is an important paper," said Dr. Gordon Mills, co-director of the Institute for Personalized Cancer Therapy at the University of Texas MD Anderson Cancer Center.

Doctors there have been offering genetic testing to patients for several years and have a database of results on about 4,000 tumour samples. So far, about 40 per cent of breast cancers have discrepancies between which genes are active in the main tumour and which ones are active where the cancer has spread, Mills said.

It costs $5,000 to $10,000 to do basic gene analysis of the main tumour, and about 10 times as much to do the kind of testing the scientists in the British study did, Mills said.

And if it were done, "we're going to find a lot of information that we don't know what to do about," such as when one biopsy suggests a certain mutation is driving the cancer and another biopsy suggests a different one is, he said.

It also takes precious time. Swanton said sequencing a patient's entire cancer genome took a very large computer four months. The amount of time required is dropping, but this type of personalized analysis is still years away from being available in the clinic, he said.

Yet the study shows that the single biopsy — "the cornerstone of personalized-medicine decisions" — is not enough, Longo wrote. And "the simple view of directing therapy on the basis of genetic tumour markers is probably too simple."


AP Medical Writer Maria Cheng in London contributed to this story.

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

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rbruce's picture
Replies 14
Last reply 3/19/2012 - 12:55am
Replies by: melmar, Anonymous, rbruce, boot2aboot, LynnLuc, audgator

just checking in to see if anyone has any results or comments to share from Merck's pd1 trial?  I start next week and would like to keep in touch with others n the trial.  Thanks, Robert

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

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Anonymous's picture
Replies 6
Last reply 3/12/2012 - 6:51pm
Replies by: Anonymous, LynnLuc, MissJenn, Erinmay22, Janner

A couple of weeks ago I had a wide excision done on a mole on my back that was 1mm with clarks level IV.  The pathology report for the tissue around the mole was clear (thank god).  So now my surgeon says to wait about 6 months and get a PET scan done.

I was thinking about things and realised that a couple of months before I had the mole removed I had a swollen gland under my armpit that was swollen and painful for about a week and a half.  I had totally forgotten about that so didn't tell the doctor about it.  I didn't get a SNB done at the time as my doctor said it was no necessary for my level and did not affect my long term prognosis.

I realise swollen glands can be a sign of alot of things, like stress etc.  My friend had them on her neck and the doctor cut out a suspicious mole on her back thinking it was Melanoma because of the swollen glands that she still gets.  But luckily for her it was not that.

Should I call the doctor about this?  I have an appointment in 3 weeks time to see him again to check the area.  Thanks for your advice, I am now checking this forum all the time to educate myself. 

Also does anyone on this forum recommend a melanoma specialist in Brisbane Australia?  The doctor I am seeing is a surgeon but not a Melanoma specialist so I would like to swap my ongoing care to somewhere that specialises.


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blairashley's picture
Replies 5
Last reply 3/12/2012 - 5:23pm

2.4mm on abdomen > Had wide-excision (clear margins!) and SLNB on Friday 2/24.  SLNB results are still not finalized.  Doc went over the following report with me on Tuesday... said the results weren't clear enough to make a diagnoses and they're running more tests. But -- I thought I'd put it out there and see if any of you had some insight?  Thanks! 

Sentinel node right axilla, biopsy:
One lymph node with S100-positive cellular aggregate of uncertain significance. Immunohistochemical stains of S-100, Melan-A, and HMB45 were performed on specimen B per the sentinel lymph node protocol. A single focus of S100-positive cells is present within a sinus immediately subjacent to the capsule on the initial level of the right axillary sentinel lymph node. This aggregate is not present in subsequent sections stained for HMB45 and the histiocytic marker CD-163.

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Terra's picture
Replies 5
Last reply 3/14/2012 - 11:34pm
Replies by: momof2kids, Lisa13, WendyPam

Does anyone have a number on the response rate of a reinduction of yervoy, I have read on mpip it is 40% but our doctor said 10%?

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Tim--MRF's picture
Replies 2
Last reply 3/8/2012 - 6:08pm

Last night's report on ipi and radiation set of a lot of activity, as seen from several threads below.  One person from the MPIP community had some specific questions and I was able to get some answers.  I thought this might be of interest to others here:



1.       How far out was the patient from the last dose of the ipi regimen?  (And was she on the standard approved protocol or some other dose/frequency program?)  The patient was on a trial in which maintenance ipi was given every 12 weeks at 10 mg/kg. She was between 2 such maintenance doses when the radiation was done.

2.       What was the size of the tumor that was irradiated?About 5 cm.

3.       Any reason to think that radiation of several smaller tumors might have a similar effect? It certainly could.

I think it is important to remember that this is the story of one patient.  No-one knows yet if what happened with her is indicative of what will happen to a braoder group.  Having said that, the principle behind the report is consistent with other immunologic approaches.  A handful of companies are working on vaccines that involve tumor specific antigens, based on the same concept that these tumor proteins can stimulate an immune response against the tumor as a whole.  Some of those companies are already discussing doing trials combining their vaccine with ipi.

I get frustrated with media expanding a small positive result into a world changing event.  It may be such an event, but it may not be.  In the meantime I am quite sure that doctors across the country are being approached by ipi patients asking for radiation....  

Hopefully this is a true turning point.  Dr. Wolchok does good work, and Sloan Kettering has an excellent program, so it comes from a reputable source.



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My husband was in the clincial trial interferon vs. ipi.  He was able to get all four induction infusions.  About 10 days after his fourth infusion, he developed colitis from the ipi.  That landed him in the hospital for five days.  Last Friday, 25 days post ipi, he was hospitalized again for hepatoxicity.  His liver numbers are still up.  So far, this hospital stay is day seven and he is still inpatient.

He had CT scans on 2/24/12.  Those results have come back.  He now has spots on his spine and right pelvis.  They did a bone biopsy Tuesday on the right pelvis. We are still awaiting those results.

His oncologist is not recommending any further immunotherapy due to the reaction he has encountered with the ipi.  If the biopsy shows melanoma, (which I will be shocked if its not) she is saying chemotherapy.

In your experience, what drugs are we likely to see chemotherapy wise?

If it is melanoma again, that will move him to Stage 4 from Stage 3b.

I need your help to know what our next step is or should be.

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

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natasha's picture
Replies 4
Last reply 3/8/2012 - 8:49pm

Hello everyone!!

    Finally I had my wider excision yesterday ! All was o'k during OP.

  Today and during night I feel pain , painkillers does not work , breast is swollen.

 Did you have the same expierence after surgery ? Is it ok?

 Thank you for all your support.

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davidfromsingapore's picture
Replies 9
Last reply 7/19/2012 - 4:50pm

Hello melanoma patients and care givers.  I am stage 4 with mets to the brain.  Just started Temodar and whole brain radiation today.  Any of you out there have some good stories about durable responses with this combo (I hope)?


“There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle.” ― Albert Einstein

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Replies by: Anonymous, ksmith27, Janner, Dada_Chris, dian in spokane, DonW

I have had a suspisious mole on my forearm for about the last year.  I called several dermatologists' offices in the last six months, but all of them have told me that they are either not accepting new patients, or their earliest appointment would be in 6-12 months.  In desperation, I went to a plastic surgeon and had the mole removed.  My pathology just came back, but unfortunately my doctor is on vacation for the next week.  The nurse told me not to worry because I have "malignant melanoma" is in-situ, but I was concerned after reading the following pathology:

"Diagnosis: Malignant melanoma.  The vast majority of this lesion is in situ.  Only focal focal superficial invasion is noted (depth of 0.3mm, level II).  Ulceration, regression, or vascular invasion is not seen.  An associated melanocitic nevus is focally seen.  An asymmetric proliferation of atypical melanocytes is present in the epidermis and focally in the superficial dermis. The melanocytes are arranged in irregular, varibly-sized nests and single cells.  Upward migration of single melanocytes is observed.  Adnexal extension is focally noted.  The melanocytes exhibit conspicuous nucleolus, irregular nuclear membrane, and moderately abundant cytoplasm.  Dermal mitotic activity is not seen.  A small area in the dermis shows nevocellular melanocytes with bland cytogenic features consistent with a melanocytic nevus.  Variable basal keratinocyte pigmentation and focal pigment incontinence are observed."

I have a follow up appointment, and the nurse told me that I would have a wide local excision, but other than that, my only follow up would be to see a dermatologist (if I can get in).  I was very concerned when I read the pathology, but all my friends say I'm making a big deal out of it, and that it's nothing I should worry about. 

Is there anything I should be concerned about in the pathology?  What does "the vast majority of this lesion is in situ" mean?  Is it "in situ" or not?  Should I also schedule an appointment with an oncologist, or should I just have the plastic surgeon do the wide local excision and then follow up with a dermatologist?  Do I have a high risk for recurrance?

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Replies by: jim Breitfeller, Lisa13

This is my question I have new labs today and I'm trying to figure out my Mom's  ALC to see if we are having any response yet to the Yervoy reindustion.  I hope they gave me the right information.  She had issues last week with the diarrhea and Dr has her on Prednisone 60mg evey morning.  She is still going every morning 2x. We saw the Dr today. (our dr is away until next week saw someone else in the practise) Plans are to move forward with infusion #3 March 13 and keeping her on the steriod. I don't know about the taper yet.  Her labs last week  White blood cell count 8.0/ LD 879?


White blood Cell Count   13.6  H                              4.8-10.8 (range)   Last week this number was 8.0

LD(Lactic Dehydrogenase- serum  744  H            313-618  (range)  Last week this number was 896

Is this the formula? Did I get the correct labs? Is her number over 2000?

Absolute Lymphocyte Count = (White Blood Cell Count) x (Lymphocytes %)


Thanks for your input!



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Radiation Blast May Turbocharge Bristol-Myers Melanoma Drug, Report Shows
By Robert Langreth - Mar 7, 2012 2:00 PM PT

Radiating one tumor can trigger the immune system to wipe out tumors in other parts of the body and may boost the effectiveness of Bristol-Myers Squibb Co. (BMY)’s cancer drug Yervoy, doctors have shown.

Researchers at Memorial Sloan-Kettering Cancer Center are reporting on the case of a 41-year-old woman with advanced melanoma who took Yervoy, a drug that stimulates the immune system to fight cancer cells, in a clinical trial. She didn’t respond to the medicine until she got a radiation treatment to shrink a tumor on her lung that was pressing on a nerve and causing severe back pain.

Soon, all the other tumors in her body started shrinking, according to the results published in theNew England Journal of Medicine. The case is the best demonstration to date of a rare phenomenon called the abscopal effect, in which radiation to just one tumor causes other tumors all over the body to regress, said Charles Drake, a medical oncologist at the Johns Hopkins University School of Medicine not involved with the study.

“It is a really amazing finding,” Drake said in a phone interview. “It confirms that this effect can occur.”

The broad tumor shrinkage was associated with changes in the immune system that occurred after the radiation treatment, according to the report.

Harnessing the effect may enable researchers to boost the response rate to Yervoy, said Memorial Sloan-Kettering’s Jedd Wolchok, an oncologist and senior author on the case study. The radiation-linked response may occur because the radiation creates cellular debris that the immune system recognizes as dangerous, he said.

Immune System Brakes

Yervoy for melanoma is the first in a new class of drugs that removes molecular brakes on immune system cells that prevent them from attacking cancer. While it improves survival by four months, the drug causes major tumor shrinkage in 10 to 15 percent of melanoma patients. Doctors are looking for a way to improve on this.

Valerie Esposito, the radiation patient in the study, started getting Yervoy in September 2009 and didn’t clearly benefit at first. “She was definitely getting worse” until she got the radiation in December 2010, said Wolchok.

Yet when doctors performed a scan a few months after the radiation, six tumors in her spleen and two more in her lymph nodes that had not been radiated shrank dramatically, he said.

Surprise Phone Call

Wolchok called Esposito with the news as she was driving home from an appointment at the cancer center last spring.

“He was like, you won’t believe it, but your tumors shrunk drastically,” Esposito said in a phone interview. “It is amazing, it is a wonderful thing.”

Esposito, a government clerical worker and single mother raising three kids on Long Island nearNew York City, said she hopes her case can provide clues for doctors how to help other melanoma patients.

Wolchok said that a second melanoma patient on Yervoy at Memorial Sloan-Kettering had a similar body-wide response to local radiation treatment just a few weeks ago.

Wolchok is working with several major hospitals to start a clinical trial that would combine Yervoy and radiation to see if doctors can duplicate what happened to Esposito on broader numbers of patients, he said. It could begin in six months.

Sarah Koenig, a spokeswoman for Bristol-Myers Squibb Co., based in New York, said in an e-mail that the company is aware of the Sloan-Kettering case report and considers it “an interesting finding.”

Bristol-Myers is studying whether Yervoy’s effects can be enhanced with radiation, she wrote. One example of this is a trial the company is conducting of Yervoy in patients who have received radiation for advanced prostate cancer, she said.

Yervoy generated $360 million for Bristol-Myers in 2011, according to data compiled by Bloomberg.

To contact the reporter on this story: Robert Langreth in New York at +1-212-617-1886

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Yervoy was featured on the Nightly News tonight. Here is a link

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Anonymous's picture
Replies 3
Last reply 3/8/2012 - 4:09am
Replies by: davidfromsingapore, washoegal, Anonymous

Hi, my husband and I have been married for 5 years and have very young children.  He was diagnosed at stage III before we were married and he recurred just after we were married.  So together we have been fighting it for 5 years, surgeries and clinical trials, etc.  The first bit of good news we have received was about 6 months ago, just after he was given 2-3 months we found out that he was a late responder to ipi, we were so excited however we have just found out tonight that the cancer has started to regrow again in several places, specifically his lungs and liver. We have talked to our oncologist and know our choices and will see him again early next week.  

My husband has struggled for a very long time with this disease and fought to get up every morning and have a purpose, to keep moving forward as best he could.  We have struggled in our marriage at times, but without ever having the appropriate discussions to resolve any issues things have just built up. When we were given the good news about ipi I knew we also needed to work on our marriage, some terrible, hurtful things have been said over the last 3 years or more and without getting into specifics there has been ongoing verbal and emotional abuse and I was able to keep it in check before the cancer had come back the first time (4+ years ago) but began to let it go, trying to understand that he was going through treatment, etc and how difficult things were for him with that, work, and a new family. WIth the good news about ipi I needed us to speak with a therapist that could help.  It has been stressful over the last 6 months, we have tried to have some good times like christmas and the holidays but it hasn't always worked. He has been unable to apologize for anything he has said or done, there have been some very poignant times in our marriage where he has confided in his mom and the two of them have been together as a united front, whether it is something as silly as how the spice cupboard is organized or as important as what plans will be made after his death as far as assets, financials, etc and as far as going to see a lawyer together to discuss writing visitation rights into his will for her with our children after his death - she is divorced, her ex-husband it remarrying and she has written her daughter out of her will and is no longer speaking to her.  I guess before I ramble on and on tonight he has said htat the stress of the last few motnhs probably hasn't helped, and I am sure it hasn't but I can't be blamed for all of this, the therapist has tried to help us and has said that the things he is saying to me our incredibly hurtful and terrible, I guess I can feel myself starting to slip into balming myself for the return of his cancer as I believe he is getting at and I am sure his mother will also say.  I am at a loss for any words to describe what i feel and am not even sure this post makes sense.

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