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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Anonymous's picture
Replies 1
Last reply 6/1/2014 - 1:49pm
Replies by: Linny

Had my 8 mo scans post craineomety/SRS/Yervoy and doc noticed a 1cm tomorrow on Derma of brain between Derma and skull.  Says it's not worrisome and plans on zapping it out via SRS.  I asked if this means I am not a yervoy responder and he said not necessarily.  Any clue on what this is and idea on how he might say that? 

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evleye's picture
Replies 12
Last reply 6/1/2014 - 2:52pm

Thank you to all of you who posted IL-2 experience on thhis board, I have read many of them.  If you have had this treatment, what did you wish you had brought to the hospital?  I am packing in anticiption and would love some advice.  If anyone has had this treatment at Hopkins, would you share your experience.  Thanks

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Ginger8888's picture
Replies 20
Last reply 6/1/2014 - 9:52pm
Replies by: Ginger8888, Anonymous, democat, Marianne quinn, BrianP, Mat, Gene_S, RJoeyB

I will be starting Yervoy treatment in a few weeks..Can anyone tell me how the side effect are?.. I will be doing 1 treatment every 3 weeks..

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Anonymous's picture
Anonymous
Replies 2
Last reply 6/2/2014 - 8:49am
Replies by: Anonymous, tcell

Having tried ippimumilab that worked for 5 months we were informed we would be offered anti pd1.  when my husband was taken off ippi we were told that anti pd1 was no longer available - what happened and is is still available as I hear it has had great results in the US?

Where should we go to ask about this as the Marsden will not offer?

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Dana R.'s picture
Replies 6
Last reply 6/2/2014 - 1:10pm

We recently celebrated my husband's "NED anniversary". 13 years ago, I was on the MPIP almost daily as my husband endured bio chemotherapy. This site was a life-line.  We are so thankful to all of the people from this site who helped us figure out how to deal with side effects and gave us moral support. May God bless you all as you battle this disease.

Dana R

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Replies by: BrianP

So If I read this right which comes from NCT01468818 the patients who do less IL-2 bags have a better response than the ones who do more bags? At least for this type of treatment. Did I read that right?

"In our prior clinical trials of cell transfer using TIL after lymphodepletion with or without

2Gy total body irradiation, patients who experienced an objective response received fewer doses of IL-2 compared to non-responders (p=0.007 and 0.03 respectively)."

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DUSTILANE's picture
Replies 5
Last reply 6/2/2014 - 3:13pm
Replies by: Anonymous, DUSTILANE, POW, odonoghue80, Ginger8888

my husband has finished his yervoy treatment.  he is now having lots of confusion, short term memory loss, behaviorial changes and cannot complete his sentences.

 

has anyone else had this problem?

Dustilane

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Maureen038's picture
Replies 6
Last reply 6/2/2014 - 5:41pm

My husband has stage 4 melanoma in lungs(9 mets). He is Braf and Nras negative. He has done HD interferon, TILS therapy at NIH and is on Ipi3mg/kg and nivo 1mg/kg since October 2013. After three does of ipi/ nivo he developed hemolytic anemia and was off treatment and on high hose steroids for two months. He did have a scan in January that showed almost 50 percent reduction of lung mets. Since the end of February, he has only been on nivo and the latest scans show mediastinal and hilar lymphadenopathy and one lung met that has grown to 14 x 18 mm since January. We are finding out today if he can stay on trial even for a short period because he is only 1 mm over the growth proticol. We feel that nivo is at least slowing the progression and it's better to stay on it until we have a plan. We are looking into surgery too. Does anyone have any ideas or suggestions?? Any thoracic surgeon you recommend in DC area? Any help would be so appreciated. My head is spinning right now. :(

Maureen

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jahendry12's picture
Replies 2
Last reply 6/2/2014 - 6:04pm
Replies by: jahendry12, rosa1

Hi Everybody - I haven't been on in a few months so I wanted to give an update on my husband.  As of right now, he just had a 3 month CT and is 15 months NED!  They took a nodule out of his lung in March of 2013 and so far, no new growths have appeared.  He has not had any treatments to date - just surgeries.

I hope and pray it stays at bay for the remainder of his life. We continue with 3 month CT's until the end of this year.  If all is still stable, we will go to every 6 months.

Prayers and thoughts to all of you beating the beast.

Julie

p.s.  If any of you live in the Chicago land area, hope to see you at the Miles for Melanoma on July 12th.

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democat's picture
Replies 2
Last reply 6/2/2014 - 11:30pm
Replies by: Marianne quinn, Anonymous

It's like he never existed,

 

I am a Kaiser patient in Southern California.  A little over a year ago, I saw Dr. Gailani in Riverside, who is Kaiser's only melanoma expert. At the time, he was going out on an extended medical leave.  I had heard he was back part time, but his name  has disappeared from my list of doctors on the website - it looks like I never saw him.  Also, I can't find any reference on the Kaiser website of there ever having been an advance biochemo program.  Did they end the program? If so, where are they sending Stage IV patients?

Does anyone know what happens to Kaiser California patients who are Stage IV?  I'm at high risk for recurrence and my open enrollment is coming up, and I'm thinking I need to change plans. 

 

Thanks,

 

Roxanne

Roxanne

Stage IIIa/IIIb

since 1/2013

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The New York Times

ANDREW POLLACK,

3 June 2014,

Copyright 2014 The New York Times Company. All Rights Reserved.

CHICAGO -- Drugs that unleash the body's immune system to combat tumors could allow patients with advanced melanoma to live far longer than ever before, researchers gathered at the nation's largest cancer conference say.

''It's a completely different world for patients with metastatic melanoma, to talk about the majority of patients being alive for years rather than weeks or months,'' said Dr. Jedd D. Wolchok, a melanoma specialist at the Memorial Sloan-Kettering Cancer Center, interviewed at the annual meeting of the American Society of Clinical Oncology here.

The treatments, called immunotherapy, generated a huge stir at last year's annual meeting, with some doctors predicting a revolution in cancer care.

Immunotherapy has also set off a frenzy in the pharmaceutical industry; Bristol-Myers Squibb, Merck and Roche are racing to bring drugs to market. Close behind is AstraZeneca, whose work was a major reason for Pfizer's recent unsuccessful bid to buy that company. Many other drug companies are now scrambling to get a piece of what could become a market worth tens of billions of dollars a year in sales.

At this year's cancer meeting, which is underway here, fewer astonishing new results are being presented.

But what new data there is shows the effects of the drugs can last for a long time, years in some cases. And there is now evidence that the drugs work on a growing number of types of cancer.

Still, there are grounds for caution. The results are mainly from small studies that lack control groups for comparison. The medicines work for only a minority of patients. And while some drugs are well tolerated, there can be severe side effects. That seems to be especially true when two immune-boosting drugs are used in combination, something that might be necessary to achieve maximum effectiveness.

The power of a combination was shown in advanced melanoma, a deadly skin cancer. In one clinical trial, 79 percent of patients receiving two immunotherapy drugs from Bristol-Myers were alive after two years. Of those who received the optimal dose, the two-year survival rate was 88 percent. The study involved only 53 patients, however, and might not represent what would happen on a larger scale.

Dr. Wolchok, who was involved in the study, said that only several years ago, the two-year survival rate for metastatic melanoma may have been less than 10 percent. One of the immune drugs, Yervoy, which was approved for use against melanoma in 2011, allows for a two-year survival rate of about 25 percent when used alone, he said. The other drug, nivolumab, which is still experimental, had a two-year survival rate above 40 percent when used alone in a study.

The drugs block the actions of proteins that act as brakes on the immune system, preventing them from attacking the tumors. Yervoy, also known as ipilimumab, releases the brake known as CTLA-4. But the main interest is in nivolumab and similar drugs coming from Merck, Roche and AstraZeneca that release a brake called PD-1.

Merck could win approval from the Food and Drug Administration to sell its drug as a last-ditch treatment for melanoma by this October. Some 69 percent of patients using the drug, called pembrolizumab or MK-3475, survived one year, according to new results of a 411-patient trial presented Monday. It is too soon to know how many will live two years.

But unleashing the immune system can also lead to dangerous side effects, including colitis, a serious inflammation of the colon, as well as problems with the liver, thyroid and pituitary glands.

When Bristol-Myers tested its two drugs together as a treatment for advanced lung cancer, about half of the 46 patients suffered serious side effects, and three of them died from the drugs themselves, according to an abstract of a study being presented here.

The side effects could be a barrier to using the drugs for less advanced stages of disease.

Results released here on Monday showed that Yervoy was effective in reducing the recurrence of melanoma after tumors were removed surgically. Three years after surgery, 46.5 percent of patients who received Yervoy remained free of disease, compared with 34.8 percent of those receiving a placebo.

However, about half the 471 patients who started taking Yervoy, given at higher than the approved dose, discontinued treatment because of side effects and five of them died from those side effects.

Pharmaceutical executives and medical specialists say the side effects of the immune drugs are different from those of traditional chemotherapy, and doctors have been unprepared. But now they are learning to mitigate them.

''If you see colitis and you've never seen it before, you'll freak out,'' said Dr. Padmanee Sharma, scientific director of the immunotherapy program at the M. D. Anderson Cancer Center in Houston. She said that the older chemotherapy drug cisplatin was also once considered so toxic it would never be used. Now, she said, ''We give cisplatin like water.''

Besides melanoma, the drugs are known to work against lung and kidney cancers. Bristol-Myers is applying to the F.D.A. for approval to sell nivolumab as a last-ditch treatment for advanced lung cancer.

But at this meeting, there were signs that the drugs that block the action of PD-1 might also work for bladder cancer, head and neck cancer, and ovarian cancer.

In a small study, Roche's drug, known as MPDL3280A, shrank tumors in 43 percent of a subset of patients with advanced bladder cancer. The company might now make bladder cancer the priority for its first approval rather than lung cancer, Daniel O'Day, head of Roche's pharmaceutical business, said in an interview here.

The subset consisted of patients whose tumors produced a protein called PD-L1, which binds to PD-1 on immune system cells and then shuts down those cells. Companies are exploring whether a PD-L1 test can be used to determine which patients should get the drugs. That would be important because the drugs are expected to cost at least $100,000 a year.

Some experts note that there was initially huge excitement about so-called targeted therapies and about drugs that block the flow of blood to tumors. While those approaches have made a difference, they have not been the panaceas enthusiasts envisioned, and that is likely to be the case with immunotherapy as well.

''With anything, all that glitters is not gold,'' said Dr. Richard Pazdur, who as chief of the cancer division at the F.D.A. has a unique insight into how drugs are performing. He said he was not allowed to discuss specific drugs.

The New York Times Company

 

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BrianP's picture
Replies 0

Catherine Poole just posted this blog from ASCO.  Pretty good info. 

http://mpneatasco.blogspot.com/

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ray39's picture
Replies 1
Last reply 6/3/2014 - 1:34pm
Replies by: Janner

Diagnosis:   Dysplastic Melanocytic Nevus, Compound Type

Comment:  A lateral edge is positive for neoplasm.  Deep edges appear free of neoplasm.  Re-excision is suggested in order to perform additional analysis and to ensure that this proliferation has been removed from the patient.

Microscopic Description:  A compound type melanocytic nevus is present demonstrating architerctural disorder as well as some cytologic atypia.  Immunostain MART-1 stains melanocytes at the dermo-epidermal junction as well as in the dermis.

Tomorrow I go for the re-excision.  He also said that he may take other moles off.  This is my 2nd excision after another atypical mole, although the first one was worse and he said the excision for this one will be smaller.  I'm tired of being cut on and need a break after this.  Can I tell my doctor that?  Any thoughts on my path report?

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