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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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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degood's picture
Replies 2
Last reply 6/3/2014 - 1:42pm

Finally got results of tests, pet showed several mets, 2 in lung 2 in liver, and several in tissue, mri of head came back clear. BRAF negative. What kind of treatment is available? VA is sending to IU medical center to see about clinical trials!  But she had said earlier he may not qualify for clinicals cause of the cancer in his eye not knowing if it is a second type of cancer or not. So far he has not had any kind of treatment at all, Don't know where to turn what kind of protocol is usually followed. The clinical trial is also a double blind plecabo one is that good or bad at this point I think he should have some kind of treatment instead of running a chance of getting nothing in clinical trials. Any help would be greatly appreciated. Thanks

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Found this article poking around the ASCO blog link that Brian had posted:

http://meetinglibrary.asco.org/content/11400412-144

One interesting point (among many).  A few weeks back I had posted that I've not had a PET scan since my Stage IV diagnosis.  This could be why:

 

The first step in evaluating patients with known or suspected metastatic melanoma (stage IV) is to define the extent and sites of disease. A CT scan of the chest, abdomen, and pelvis is a good starting point. Some patients and physicians may be concerned about radiation exposure, in which case an abdominopelvic MRI can be substituted for the abdominopelvic CT. Although this adds expense, it decreases the overall radiation exposure from approximately 17 mSv to approximately 7 mSv. Given the risk and therapeutic significance of central nervous system metastases, it is also appropriate to obtain imaging of the brain with either MRI (preferred) or CT. Some oncologists rely on 18F-fluorodeoxyglucose (FDG) PET-CT scans to define the extent of disease and there are some studies to support this,8,9 especially in patients who are being evaluated for possible resection of oligometastatic disease.1018F-FDG PET-CT scans offer full body imaging with slightly decreased radiation exposure compared with CT scans of the chest/abdomen/pelvis. Clinicians should be aware, however, of certain drawbacks of 18F-FDG PET-CT scans. First, there is a substantial rate of false-negative in the lung,11 leading some clinicians to include a noncontrast lung CT scan with the PET scan. This results in total radiation exposures similar to that for a full body CT scan. Second, tumor dimension measurements generally cannot be made reliably from a PET scan, leading to the need to eventually perform a full body CT scan to monitor response to therapy, although newer PET-CT scanners can offer high-resolution CT images. Third, 18F-FDG PET-CT scan results do not correlate reliably with clinical effects in patients being treated with BRAF inhibitors;12 melanoma FDG uptake will nearly always decrease with BRAF inhibitor treatment whether or not there is substantial tumor shrinkage. Hence, PET scans should not be relied on to follow clinical response in these patients.

 

 

 

 

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Anonymous's picture
Anonymous
Replies 2
Last reply 6/3/2014 - 5:50pm
Replies by: Anonymous

My dad started first round of Yervoy 2 weeks ago.  Most recently he has been experiencing continual double vision.  He's getting little to no info as Medina Cleveland Clinic has liimited experience with the drug.  Onc is sending him to Optho tomorrow.  Reading the drug main page indicates that double vision is a side effect but is there any treatment to off set this side effect?  Does it eventually subside? 

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If anyone is in Indianapolis Indiana I will be walking at dusk to raise money for awareness and a cure..June 14 7 pm at Fort Harrison State Park

Remember what's important and make everyday count

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Anonymous's picture
Anonymous
Replies 0

Take that, cancer: Immune booster drug getting kudos

By Joseph Mayton, Tech Times | June 3, 4:19 PM

 

Cancer is about to get a new foe, and it's not that different from what we already have in our bodies. A new study announced at the American Society of Clinical Oncology meeting in Chicago says that the melanoma drug Yervoy reveals that it can improve treatment for those with advanced and earlier stages of the illness.

The drug aims to allow the immune system to rebound and attack, and has been shown to help in advanced stage 4 melanoma.

In what is being viewed as significant, the drug reportedly reduced the risk of melanoma recurrence by one-quarter. The median time until the diseased return after surgery to remove cancer tumors was around two years and two months, compared with less than a year and a half for those on a placebo.

This could be a major development in how cancers are fought, especially melanoma. And researchers believe they may have begun to unlock many clues to future cancer treatments.

Also at the conference, scientists have reported that the modification of white blood cells, or T-cells, can destroy and make cancer cells disappear. The study by scientists from the National Cancer Institute is a huge finding that could dramatically change how medical professionals battle cancer.

Despite the optimism around the findings, the genetically modified T-cells only make cancer cells disappear for a limited period before they return. The concept that many scientists had believed, that cells can work to help battle non-blood cancer and tumors, has been principally answered. Now, more testing and research is needed to continue the effort to find a way to kill and end cancer.

The study was conducted with women who had cervical cancer, which is caused by a virus, the human papilloma virus, or HPV, which a woman's body trains its white blood cells to recognize. The study tested whether those same trained blood cells, if genetically modified, could work against solid tumors found in cervical cancer.

In three of those women who were given treatment, their tumors shrank noticeably, while two other women saw that the cancer that had spread to other areas disappeared entirely, but scientists warned that it is too early to tell whether the women were cured.

If true, it could be a major coup for medicine, where cancer continues to be one of the leading causes of death across the planet.

"This proof-of-principal study shows that adoptive transfer of HPV-targeted T cells can cause complete remission of metastatic cervical cancer and that this remission can be long-lasting," said lead study author Christian Hinrichs in a prepared statement at the conference.

"One implication of the study is that cellular therapy might have application to a broader range of tumor types than previously recognized. This treatment is still considered experimental and is associated with significant side effects. We also need to explore why this therapy worked so well in certain women, and not in others."

Overall, the initial reaction to the study has doctors and researchers extremely excited, with many praising the efforts of the NCI in continuing to look at new methods and efforts to battle against cancer. While they are hopeful that the potential discovery of a "cure" of some kind is positive, they remain cautious before further testing and study can be done.

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degood's picture
Replies 17
Last reply 6/4/2014 - 9:27am
Replies by: Anonymous, Ginger8888, degood, Tamils, BrianP, kylez, tcell

My husband had a 4mm melanoma removed from his back in Nov. 12 using the wide excision. They tried to use dye for the lymph nodes and it would not move so they done a whole body pet scan, with nothing showing up. He has went every 90 days to the surgeons office for exam and everything has been OK, last trip in Feb. said he is doing well and extended time to 6 mos. His liver enzyme test was high so they took him oiff of cholesterol meds and told him to quit naproxen as that would affect results. Last test it had gone down slightly. Lung x-rays have always bee clear, no swollen lymph glands etc.  Starting in Feb. his vision started having flashing lights etc. I have also posted on the ocular board. He has gone to a very good eye specialist who termed it as a suspicous choridial nexus and wants to watch he goes back in June. In the meantime he has had several new spots show up on his  back, chest, and inside his lip. We were sent to a different dermatologist as the one at our local VA felt he should be seen by a specialist. We went yesterday and boy he scared me to death!! He say the melanoma from his back has spread including his eye and kept making statements like no use to put him through eye treatment as it was the skin cancer. The eye specitalist whom is one of the best in the state said if it is melanoma in his eye it is not associated with the skin even though it is called melanoma, as it  looks totally different to him than the skin cancer type. This guy yesterday started in on brain scans, lung scans, chemo etc. He would only due biopsies on 3 of the 9 spots as he is positive they are all the same even though they do not look alike or even resemble the one taken off his back. and again no point in putting him through further biopsies.  He was hard to understand due to his accent and was very abrupt he also an associate professor at the local college and has a know it all attitude.

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