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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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.

Tim--MRF

 

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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 downs...you are all an inspiration
Claire

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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!

 

Wendy

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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
Anonymous
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.

Cheers,

Carolyn

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 orrlangreth@bloomberg.net

 

http://www.bloomberg.com/news/2012-03-07/radiation-blast-may-turbocharge-bristol-myers-melanoma-drug-report-shows.html

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Yervoy was featured on the Nightly News tonight. Here is a link http://www.msnbc.msn.com/id/3032619/ns/nightly_news/#46660604

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Luvmycuz's picture
Replies 2
Last reply 3/7/2012 - 7:39pm
Replies by: KRob, Lynn1962

My cousin was just diagnosed this week with metatastic melanoma, it traveled to her liver. We are devastated by this. She lives in NC and and I am twelve hours away in NY. I am hoping that someone can tell me what I can do to help her. As sad as I am I cannot imagine the pain she must be in and I want to do all that I can emotionally and educationally to support her.

Lifedoesnotrewind

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himynameiskevin's picture
Replies 8
Last reply 3/7/2012 - 7:13pm

I finished two rounds of SRS yesterday and today, to hopefully clear up my brain. Everything treatable has been treated, anything lingering, if anything, are too small to do anything about right now anyway, the additional noted "spots" are no bigger than 1mm or so and although unlikely, the doctors and I will continue to hope they’re just blood vessels or something that won’t show up in a future MRI.

I received an unexpected phone call today and it turns out my prescription for the Zelboraf has been approved, processed, shipped and I should be able to pick it up at 1pm tomorrow, not in two weeks as was expected and planned. So this is great news. Relieving. :) As with anything, I know there’s no guarantee it will work, or how it will benefit me... how soon, or for how long, what side effects I’ll experience. But I’ll be doing something that may work, something I may benefit from, maybe quickly, for a long time, with minimal side effects. It's something proactive I've been waiting two months for, and a step in a direction that could potentially save my life. So I feel good about that. I just have to stay focused, and continue to plan, hope, pray for the best possible outcome. Thank you all for being by my side through all of this. Here's to tomorrow and the next leg of the journey. -Kevin

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Shelby - MRF's picture
Replies 1
Last reply 3/7/2012 - 7:10pm
Replies by: KRob

I'd like to compile a list of melanoma support groups by state and make it available as a patient resource on our website.  If anyone has any information about a melanoma support group in your area or state, will you please provide me with some information on the group?  All information can be sent to smoneer@melanoma.org or education@melanoma.org.  Thank you in advance!

Shelby - MRF Health Educator

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Mrsgkr's picture
Replies 6
Last reply 3/7/2012 - 7:04pm

My husband Gary was diagnosed with stage 3c back in September 2011. He had a wle and lymphadenectomy on Dec 8, 2011. He has already had a recurrence and no treatment has been started. He had yet another biopsy done on March 1. No call from the ordering doctor yet, but we were able to go to the hospital and get a copy of the report. It was finalized and sent back to the ordering doctor the following day. This makes my husband feel like this doctor doesn't want to do anything to help. I am going to call other doctors tomorrow for my husband to see. Maybe one of them will help. Doing some form of treatment is better than none at all.

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So went to the dermatologist yesterday for a black mole looking spot under my nail.  Long story short thought it was a bruise, had it since 2008, always had nail polish over it and didn't pay any attention to it.  I am having surgery and biopsy on Friday and I am in disbelief of this whole situtation. I never even knew this existed.  I had been to the derm before to have moles removed, all the while this was on my toe and I wasn't paying attention to it.  Anyways I was wondering if there are any stories of of others who have this.  I am 35 yr old white female and it looks as if this is pretty rare for my demographic. I am trying to stay away from studies I am reading because I have read the 5 year survival rate was only 40%  in subungal melanomas on the toes. Any insights? Thanks in advance :)

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Jewel's picture
Replies 18
Last reply 3/6/2012 - 9:58pm

Hi Everyone,

Please forgive me for needing to rant a little. I just don't understand why SO LITTLE is being offered to Stage 3 people....basically they look you in the face and say you NEED to get worse (stage 4) before we can help you. I'm just frustrated.....and sad for everyone that is fighting this disease.

Best wishes to everyone,

Jewel

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