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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The rising number of malignant melanoma cases the past four years at Karmanos Cancer Institute in Detroit illustrates the need for cutting-edge research into some of the most aggressive forms of the still mostly untreatable skin cancer.

But that will change starting this summer as Patricia LoRusso, D.O., director of phase-one clinical trials and the institute's Eisenberg Center for Experimental Therapeutics, begins a three-year, $6 million research project as co-leader of a group of 50 cancer researchers at 12 medical centers who will study BRAF Wild-Type metastatic melanoma. 

BRAF Wild-Type is an aggressive form of metastatic melanoma that has fewer treatment options. 

More than 70,000 new cases of melanoma are diagnosed each year, mostly in older adults, with more than 8,000 deaths annually. Some 50 percent of metastatic melanoma cases are BRAF Wild-Type. 

Most metastatic melanoma patients, including those with BRAF, have a median survival rate of six to nine months with a five-year survival rate of less than 20 percent, according to Karmanos. Melanoma accounts for 73 percent of all skin cancer deaths. 

"We know that there is a desperate need for treatment for those suffering from the most aggressive forms of the disease ... for which there are very few effective treatment options," said LoRusso, who also is professor of oncology at Wayne State University's School of Medicine in Detroit. 

While only 150 patients will be studied nationwide at the 12 medical centers, including Karmanos, LoRusso said several other clinical studies on melanoma are in the works at Karmanos. 

"Melanoma has always been a tumor type of importance in our clinical program," LoRusso said. "Our melanoma service at Karmanos, led by Dr. Lawrence Flaherty, has been involved in the development of many drugs that are being investigated or have been recently approved for treatment." 

With few treatment options, Karmanos researchers and clinicians focus on recruiting patients to clinical trials to test new agents, LoRusso said. 

At Karmanos, new malignant melanoma cases have increased 12.6 percent annually to 415 in 2011 from 365 reported in 2008. Over those four years, Karmanos has treated 1,546 malignant melanoma patients, including those with BRAF Wild-Type melanomas. 

But LoRusso said the new study -- which seeks to treat patients individually based on their genetic makeups -- is expected to help develop a better understanding of an aggressive form of the disease. 

"We feel that the novel trial design, which incorporates new as well as approved drugs, is not only a paradigm shift in how we treat this disease, but will hopefully improve overall outcomes for our patients," LoRusso said. 

For example, medical researchers will conduct personalized medical trials and genomic profiling on patients with BRAF Wild-Type melanoma, she said. 

"Our goal is to match the right treatment to the right patient, based on their genetic makeup." 

Based on each subject's genetic profile, the trial will evaluate the benefits of personalized therapy. 







"(Does it) improve outcomes over the way we currently treat patients?" LoRusso said. "If successful, this personalized approach may not only benefit BRAF Wild-Type metastatic melanoma patients, but could also serve as a model for other types of cancers." 

LoRusso said the 50 researchers, who include co-leader Jeffrey Trent, Ph.D., come from backgrounds that include clinical medicine, genomic research, computer science and drug development. 

Trent is president and research director at Grand Rapids-based Van Andel Research Institute and theTranslational Genomics Research Institute in Phoenix.

"Therapy options for people who have this advanced disease are abysmal," Trent said. "The likelihood of rapid discovery in the traditional path of drug development is very unsatisfying, especially when you have a group of people who have limited hope." 

By taking care of patients in the project with individual treatments, Trent said, research time can be reduced dramatically. 

In Michigan, research members also include principals Brian Nickoloff, M.D., Michigan State University's College of Human Medicine, and Craig Webb, Ph.D., at Van Andel. 

The melanoma project is funded by Stand Up to Cancer, the American Association for Cancer Research and the Melanoma Research Alliance

For more information on upcoming clinical trials, send inquiries to


If anyone is in Detroit area...i recommend Dr LaRusso and Karmanos and i recommend them way over Univ of Mich(blah-i had BAD experience there)....It is a good second tier hospital...first tier being of course, sloan kettering, nih, moffitt, fact, i am thinking of moving back  to Dtown and going to Karmanos...


don't back up, don't back down

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WendyPam's picture
Replies 4
Last reply 3/11/2012 - 6:47pm

My Mom is on Yervoy reinduction and started having issues with diarrhea after her second infusion. It did get scary one of the days -  8x with blood and vomit. Dr. put her on the Prednisone and what a difference I see in her. She had become extremely depressed, her blood sugar level have been extremely high (over 300) and she can sleep all day. She is not herself at all!!!! We saw the Dr this past Tuesday and we told her that my Mom still had diarrhea 2x every morning, no blood and never past 10 am. (this dr is a sub for our dr that is out of town)  She said that was fine as long as no blood and no more then 2x. She is scheduled for infusion #3 this Tuesday.

Today my Mom didn't want to take the Prednisone and finally I told her we just can't stop without talkingwith the doctor. She has only been on it a week at 60mg every morning. I went and spoke to the local pharmacist in town to figure out if we could just stop or had to taper. He sent me home with papers to read. After google searching it looks like she hasn't been on it long enough that she would have to taper. We went down to 40 mg (2 pills) and tomorrow taking just 1- 20mg. (Our doctor is still away and the second doctor is away now - don't feel like dealing with an unkown doc that doesn't know us)

She hates the quality of life that she is dealing with right now and I have to respect her, but at the same time I have to fight for her. She told me that she doesn't want the 3 and 4th infusion if this is quality of life. This prednisone is driving her mental state down.

QUESTION::  Can we get her on Endtocort and treat the inflammation in the gut and not the Predisone that is treating the whole body and driving her blood sugar so high. She is on diabetic medication (one pill a day) Her diabetes is usually controlled by diet and prior to this she hadn't been on the medication in awhile.  Beside the fact that is makes her nauseous. 3 years of fighting this Melanoma and I have never seen her depressed like this! I would like to see her complete infusion 3 and 4. and start looking into anti-pd1 at Moffitt. What are your thought on Endtocort?

As always thank you so much for sharing your vast knowledge. It helps ease my worries..............



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Replies by: rlaraia, Becky

My daughter was diagnosed stage IIIb at the age of 4. She is 6 now and has had a WLE to remove the melanoma as well as a lymphadenectomy. In October 2011 she completed 1 year of interferon and remains NED at this time. We have been trying to research information since her diagnosis in July 2010 and have not been able to find much of anything. Most of the information about melanoma as it applies to children under the age of 10 has come from only two paraent that we have met along the way who also have children who were diagnosed at a very young age. Her Drs. are as informative as they can be but even the info they provide mainly based on adults. I would like to find other parents who are willing to share their stories and any information resources they have found. We are very greatful for the knowlege we have aquired but feel like there must be more out there. It is simply difficult to grasp that there is no why or how this happens

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ElaineLinn's picture
Replies 8
Last reply 3/9/2012 - 2:17pm

just wanted to give you all an update. Today is March 6, I have been in the hospital since friday having siezures. They found a 1 1/2 cm tumor on my brain that has to be removed on Wensday.  I am scared to death but I also know it is all in Gods hands.

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jmmm's picture
Replies 5
Last reply 3/8/2012 - 10:19pm

This is a strange question, but my husband has been stage 4 since last January. We have 3 young boys and I obviously worry about them getting melanoma. They all have moles and get more each year. I asked the pediatrician about it and he said not to worry and just use sunscreen. My husband's tumors are all internal, so I'm not 100% sure I would recognize melanoma on the skin. Are there any other young moms or dads dealing with this? When do other pediatricians recommend seeing a dermatologist? I would just take them, but with a $40 per child copay and a mountain of medical bills for my husband, I have a hard time justifying it if the doctor thinks it's a waste.

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bruski1959's picture
Replies 12
Last reply 3/8/2012 - 10:03pm

Jackie had her 2nd Yervoy infusion today. This time we were able to arrange to have the Yervoy shipped in earlier, and had confirmation that it was in yesterday. So pretty much the same routine as last time, xray of the port, pre-medications for anti-nausea and allergic reactions, and then the Yervoy. The anti-allergic reaction medication makes Jackie sleepy, and she snoozed at the cancer center, and when she came home. So far the only noticeable side effect has been more fatigue than she typically has. Praying that the Yervoy will shrink the melanoma tumors, and that she won't have any of the nasty side effects. Thanks for your thoughts and prayers!

Bruce and Jackie

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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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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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Cspan's picture
Replies 13
Last reply 3/8/2012 - 1:31pm

On February 4, 2012 my husband passes away from melanoma. Although I never posted much I did read you posts every single day. The support I received from all of you was a life line. Howard was diagnosed with a scalp melanoma in February 2011
He has a radical neck dissection and high dose radiation over the summer. On Labor Day weekend we walked 5 miles. He came home and coughed up blood. He had 4 rounds of advanced biochemo during the fall and one dose of high dose IL 2.
On February 4 th I came home to him talking jibberise. It spread to his brain, he had a massive stroke and died 4 days later. He has a peaceful passing surrounded by our 2 sons and myself. I held his hand and told him it was Ok to go, he took one last breath and died.
He had worked up until 4 days before he died. Howard was a young energetic 62 years old.
The grief is very hard, we had a very good marriage of 32 years
Thank you all for sharing all the ups and are all an inspiration

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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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yoopergirl's picture
Replies 8
Last reply 3/8/2012 - 11:53am

I called today and got in right away on Monday the 12th, will be seen by a melanoma specialist who has treated patients with ipi. Will have to travel 6 hours to get there but I am more at peace now with this decision. The Carbon Cancer center at UW Madison Wi. I could have gotten in on Thursday but need to get all my medical recods from 3 centers. Thanks to all on this board for all the good advice so far. will let you know how it goes when we get home.

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JerryfromFauq's picture
Replies 1
Last reply 3/8/2012 - 7:26am
Replies by: Bob B.

Daily Low-dose Aspirin Substantially Reduces Deaths From Several Common Cancers

NEW YORK -- December 8, 2010 -- A study published online first and appearing in an upcoming issue of The Lancet is the first to prove that aspirin
reduces death rates from a range of common cancers.

The article is by Peter Rothwell, MD, John Radcliffe Hospital, and University of Oxford, Oxford, United Kingdom, and colleagues.

A previous paper published by Dr. Rothwell and colleagues in October 2010 in The Lancet established that long-term low-dose aspirin (ie 75
mg/day) reduced death rates from colorectal cancer by more than a third. In this new work, the authors studied deaths due to all cancers during and after randomised trials of daily aspirin versus control done originally for prevention of vascular events.

The authors studied 8 eligible trials, that covered 25,570 patients. They showed that allocation to aspirin reduced death due to cancer by 21% during the trials (based on 674 cancer deaths), with benefits apparent after 5 years’ follow-up (death rates after 5 years falling by 34% for all cancers and 54% for gastrointestinal cancers).

By long-term follow-up of patients after the trials (including 1634 cancer deaths) they also showed that the 20-year risk of cancer death remained 20% lower in groups who had previously been allocated aspirin than in the control groups for all solid cancers, and 35% lower for gastrointestinal cancers.

The latent period before an effect on deaths was about 5 years for oesophageal, pancreatic, brain, and lung cancer, about 10 years for stomach and colorectal cancer, and about 15 years for prostate cancer. For lung and oesophageal cancer, benefit was confined to adenocarcinomas. The 20-year risk of death was reduced by about 10% for prostate cancer, 30% for lung cancer, 40% for colorectal cancer, and 60% for oesophageal cancer. The reductions in pancreas, stomach and brain cancers were difficult to quantify exactly because of smaller numbers of deaths. However, the authors noted that treatment with aspirin during the trials lasted for only 4 to 8 years, on average, and so the effects on subsequent risk of deaths due to cancer may well underestimate those that would result from longer-term treatment (ie, from age 50-75 years).

Benefit was unrelated to increasing aspirin dose (75 mg upwards), sex, or smoking, but the absolute effect on 20-year risk of cancer death increased with age. However, Dr. Rothwell said that the increased effect on aspirin on cancer deaths in older people is due to general increased risk of cancer-related death in that age group. He believes that, if people are treated with 20 to 30 years of low-dose aspirin, it would be those starting treatment in their late 40s or 50s who might eventually derive the most benefit.

“These findings provide the first proof in man that aspirin reduces deaths due to several common cancers,” the authors wrote. “Benefit was consistent across the different trial populations, suggesting that the findings are likely to be generalisable.”

Dr. Rothwell noted that “these results do not mean that all adults should immediately start taking aspirin, but they do demonstrate major new benefits that have not previously been factored into guideline recommendations. Previous guidelines have rightly cautioned that in healthy middle aged people the small risk of bleeding on aspirin partly offsets the benefit from prevention of strokes and heart attacks, but the reductions in deaths due to several common cancers will now alter this balance for many people.”

The authors concluded that taking aspirin daily for 5 to 10 years, as in the trials, reduced all-cause mortality (including any fatal bleeds) during that
time by about 10%. Subsequently, there were further delayed reductions in cancer deaths, but no continuing excess risk of bleeding. In terms of
cost-effectiveness, such benefit would exceed that of established initiatives such as screening for breast or prostate cancer, potentially justifying added costs to reduce bleeding complications, such as co-prescription of a proton-pump inhibitor and further development of more effective derivatives of aspirin.

Dr. Rothwell and colleagues noted that more research is required. Effects of aspirin on incidence of cancer must be determined, both for cancers that are less commonly fatal and to determine whether the latent period before an effect is shorter than for death. More trial data are required for the effect of aspirin on risk of breast and other cancers of women. Follow-up beyond 20 years is necessary to identify any late rebound in cancer deaths. Dr. Rothwell and his study group hope to report the answers to these and other questions with new research during 2011.

“Perhaps the most important finding for the longer-term is the proof of principle that cancers can be prevented by simple compounds like aspirin and
that ‘chemoprevention’ is therefore a realistic goal for future research with other compounds,” said Dr. Rothwell.

SOURCE: The Lancet

I'm me, not a statistic. Praying to not be one for years yet.

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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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Hi all,

I'm from BC Canada. I'm looking for others in my area. I'm also looking for all the latest up-to-date info on Melanoma and treatments etc. My biggest concern is that I'm not getting the closest follow-up that I may need. I was diagnosed with Melanoma in March of this year. It was on my right calf. I had a flat mole there that was about 5-6 mm - not round but not too wierd looking. I noticed that I had to be more careful shaving my legs last December as the mole was more raised. Then by the end of December I was catching the razor on it. I didn't think too much about it until January, when a skin coloured "tumor" started to grow on one half of the mole. I knew I had to have it looked at but was "too busy." I finally had it looked at mid-February and my family physician removed it and 2 other fast growing moles. I didn't think anything more about it as my doc didn't seem too concerned. I got the "phone call" March 10th. It was a Nodular Melanoma Clark level IV and Breslow 2 mm Mitosis <2/mm. I had a wide excision and sentinel lymph node biopsy March 31. The surrounding tissues and lymph nodes were negative putting my staging at IIa. The other 2 moles were benign. I also had 3 Clark's nevi removed in May. My surgeon, who specializes in melanoma, wants to take more tissue from around the nevi removed from my back.

My concern is that I'm wondering if they should have been doing CT scans or anything else to make sure I didn't have anything else going on. I feel I'm a little of an oddity as my surgeon said usually older males have this type of melanoma on their scalp or shoulders from too much sun exposure. And everyone that knows me, knows that I don't go out in the sun much. Since I was pregnant with my 12 yr old daughter, I've been heat intolerant and always sit in the shade. I'm the one under the umbrella at my daughter's soccer games. And not when it's just raining either. My legs have really never tanned or even burned, but I'm fair haired (naturally that is), green eyed, have more than 50 moles (more like 50 per sq inch - lol), and burn rather than tan. I use 50 sun screen. But I also grew up in the era of no sun screen and playing outside in the sun all day when I was a child. Had plenty of very bad burns - but not on my legs. Go figure.

I would enjoy hearing from everyone and look forward to meeting more people in my position. I know I'm one of the lucky ones but also know I have a life-time of vigilence ahead of me.



Live life to the fullest. Laugh lots. Love deeply.

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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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