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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Jubes's picture
Replies 10
Last reply 11/5/2016 - 10:46am

Powerful drugs that enlist the immune system to fight cancer can, in rare cases, cause heart damage, doctors are reporting.

So far, fewer than 1 percent of patients taking these medicines — called checkpoint inhibitors — have developed heart trouble. But in those who do, the damage can be severe, and the drugs have led to several deaths by provoking the immune system to attack the heart. The risk appears highest when patients take two different checkpoint inhibitors at once.
“This is a new complication of potentially lifesaving drugs,” said Dr. Javid J. Moslehi, the director of cardio-oncology at Vanderbilt School of Medicine and the senior author of an article published Wednesday in The New England Journal of Medicine. “We’re working to develop treatments for it. Our job is not to say the drugs are bad, but to say, ‘How can we deal with it?’”
The drugs, a form of immunotherapy, are considered a huge breakthrough in cancer treatment. Although they do not work for everyone, they have resulted in lasting remissions for many, including people who were expected to die from advanced cancer that had resisted every other treatment.
Checkpoint inhibitors have been approved to treat six types of cancer, and are being used for many other types. The drugs are also being combined with one another for added effectiveness.
The heart findings should not scare patients away from the drugs, Dr. Moslehi said. He called them “transformative” in cancer treatment and said they offered a “potential for cure.”
Four checkpoint inhibitors are on the market: ipilimumab (brand name Yervoy), nivolumab (Opdivo), pembrolizumab (Keytruda) and atezolizumab (Tecentriq).
The side effect has prompted some hospitals to add extra cardiac testing for patients taking more than one checkpoint drug, in the hope of catching problems early enough to prevent permanent heart damage. If the tests find signs of trouble, steroids and other drugs may stop the assault by the immune system.
↗️ Cell Wars
“This is something oncologists should be aware of,” said Dr. Jedd D. Wolchok, chief of melanoma and immunotherapeutics services at Memorial Sloan Kettering Cancer Center in New York, who was not an author of the journal article. “It’s rare, but the fact that people have died from it is a reason for us to try to spare them that toxicity.”
Dr. Wolchok said the problem had occurred in one patient at Sloan Kettering but had cleared up on its own. He agreed that it was advisable to order extra heart tests for patients taking checkpoint combinations.
Dr. Benjamin A. Olenchock, a study author from the Division of Cardiovascular Medicine at Brigham and Women’s Hospital in Boston, was not available for an interview but said in a written statement that the heart problem had affected patients at his hospital. “As the number of patients treated with checkpoint inhibitors has markedly increased, rare cases of cardiac toxicity associated with the use of these cancer therapeutics, sometimes resulting in death, have been seen at multiple institutions including our own,” the statement said.
The first checkpoint inhibitor was approved in 2011. The drugs work by unleashing T-cells, a type of white blood cell, to kill cancer. But sometimes, the T-cells go into hyperdrive and attack healthy tissue. Doctors have known for years that the drugs can have dangerous side effects, including gut, lung and thyroid trouble. But the cardiac problems have taken longer to emerge.
There have been scattered reports in other, less prominent medical journals of heart problems, some fatal, in small numbers of patients taking checkpoint inhibitors alone or in combination. The new report is the most in-depth analysis, including tests for possible genetic or viral causes (none were found) and an examination of a drug-company database to identify other cases.
The patients described in Dr. Moslehi’s article — a woman, 65, and a man, 63 — developed heart problems and died a few weeks after just one intravenous treatment with a combination of two checkpoint inhibitors: Opdivo and Yervoy. Both patients had advanced melanoma, a deadly skin cancer, and were enrolled in studies. Neither had a history of heart disease.
The woman had chest pains, shortness of breath and fatigue, and was admitted to the hospital 12 days after her first dose of the drugs. She had myocarditis — inflammation of the heart — as well as other inflamed muscles and abnormal heart rhythms.
Hoping to quell the inflammation, doctors gave her steroids, but her heart kept deteriorating.
The man had similar symptoms, and based on their experience with the woman, the Vanderbilt doctors treated him with even higher doses of steroids, as well as another drug. He survived only a few days longer than the woman did, Dr. Moslehi said.
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Autopsies found that the patients’ immune systems had attacked their hearts, rejecting them as if they were transplants.
Using data from Bristol-Myers Squibb on 20,594 patients who took the checkpoint inhibitors it makes, Yervoy and Opdivo, the Vanderbilt team found that doctors had reported 18 cases of myocarditis related to the drugs. Six were fatal. The condition was most common and severe in patients who took the combination, affecting 0.27 percent and accounting for five of the six deaths.
Dr. Michael B. Atkins, the deputy director of the Georgetown Lombardi Comprehensive Cancer Center in Washington, called the rapid onset of heart problems “alarming.” He said the cases had led experts in cancer and myocarditis to meet in September with Bristol-Myers Squibb executives. The group agreed that extra heart tests should be included for patients taking combined checkpoint drugs in studies. The tests include echocardiograms and blood tests for troponin, a protein released by damaged heart muscle.
The same tests could be done for patients receiving the combined drugs outside of studies, Dr. Atkins said, but he added, “I am unaware of any formal recommendation.”
Checkpoint inhibitors “are lifesaving therapies for many patients, at least for melanoma,” Dr. Atkins said. “Around 60 percent of patients have tumor responses to the combination, and the majority of those appear to be long-lasting responses.”
Before the drugs were available, the median survival time for those with advanced melanoma was six to nine months, and only 10 percent lived two years, he said.
“We want to do everything we can to make sure these treatments are safe,” he added.
Dr. Atkins said he thought it would be possible to save patients who developed heart problems by intervening early with powerful drugs to shut down the inflammation. That approach reversed myocarditis in a patient at another hospital in Washington, he said.
But drugs that stop inflammation work by turning off the immune response, so they may cancel out any benefit from the checkpoint inhibitors. That would leave patients where they started, at the mercy of their cancer, he said.
So far, there is no way to predict which patients might be vulnerable to heart problems from the checkpoint drugs. For now, Dr. Moslehi said, the best solution is close monitoring for those taking more than one at a time.
G

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Anonymous's picture
Anonymous
Replies 2
Last reply 11/5/2016 - 4:28am
Replies by: Anonymous, Janner

https://imageshack.com/i/pmG45buYp

My friend said its a liver spot, but im not so sure.

What you guys reckon?

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Anonymous's picture
Anonymous
Replies 6
Last reply 11/4/2016 - 6:31pm
Replies by: Anonymous, youngann, Janner

Bit gross guys I apoligise but my question is ive had a mole for a good while now looks circular some ways but looks like at the top right some of it has faded away making it something like a letter b if you know what I mean. Its bright brown and on the palm of my hand, no pain, itchyness or anything and its smooth like the rest of my hand..

Heres pic here if this is any

[URL=http://s61.photobucket.com/user/gazmayo/media/Mobile%20Uploads/Screensho...

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Anonymous's picture
Anonymous
Replies 7
Last reply 11/4/2016 - 10:22am
Replies by: cancersnewnormal, Hukill, Anonymous

Hello,

This is my first time posting and I'm hoping to get some advice on my most recent diagnosis. 

I have just been diagnosed with my 6th Melanoma. My first one 15 years ago was quite deep (3+mm) but with no spread. The second was 1.2mm and 3rd in-situ (2011), then 3 this year have been in-situ. I understand the recommended excision margins for in-situ are 5mm, but I've opted out of this for the most recent two (biopsies had a small 1-2mm clearance). This is against the Drs recommendation, although he has told me that in-situ can not become invasive and at worst, there is the chance of local recurrance, in which case I would opt for an excision. I'm 38 years old and he's never come across anyone my age that hasn't had those extra margins cleared (he's had older patients opt out).

My reasoning behind not going ahead with the further excision is because of my emotional/mental wellbeing — I just don't feel I can be cut into again this year! (3 biopsies + 1 wider excision). That may sound silly (as I know there are people going through much worse than this) or even reckless, but for some reason it's hit me really hard and I've been suffering with panic attacks and anxiety because of it.

I guess my question is — am I being completely reckless not having this done? Is there anybody out there, or any statistics that back this up, whether in-situ can become invasive. I feel there is so much conflicting information out there, and at the same time no answers to this subject, and Melanoma as a whole... it's frustrating and scary. 

I hope someone can offer some advice here. 

Thank you.

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Anonymous's picture
Replies 5
Last reply 11/4/2016 - 9:26am

Hello all - full node discection last week - 4 nodes malignant of 46 - Love Moffitt! - Radiation then 3 options... 1.  Interfuron 

2. Pilimumab

3. Trial - Keytruda - which right now, i'm leaning toward.

Thanks for any opinions, input.

 

Todd Guzy

 

Todd Guzy

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Anonymous's picture
Anonymous
Replies 4
Last reply 11/4/2016 - 3:53am
Replies by: Scooby123, MoiraM, Polymath

Hi All hope you all doing has good as can be.

i had appointment today 3 weeks prior last appointment which should have been to re book my head and body scan in. I was told they want to scan me in 6 months not 3 months due to I have been stable on ippi for a year if you can say that after having one progress in my brain this March ?. I know most get scanned every 3 months. I did ask why leave me that long. I was told they feel because I have been stable that is why. I have not had treatment since last June 2015 apart from treatment for the brain. Plus do have o say she said we could scan you every 3 months then on 4 month some thing happens.

i have 2 questions if anyone can help first one is how long has anyone been stable and how often they get scanned.

if you are stage 4 do you get your moles still checked , I was told off my consultant he is more concerned what's going on inside my body than out, but if you had any more melanomas on skin surely you have them off or does treatment treat on surface of skin too. 

Sorry for going on but was just on my mind.

scooby 

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Anonymous's picture
Anonymous
Replies 10
Last reply 11/3/2016 - 8:28pm
Replies by: Bubbles, Jubes, Anonymous, Randy437, cancersnewnormal

Ok well I listened to y'all!

since my pet and ct showed growth ( from 11mm to 18 mm)and more uptake ( from SUV 3.2 to 7.4) in the last 6 months , I have been to a top surgeon who does the robotic surgery and am booked in for resection of lower right lung lobe next Tuesday. This spot in my lung is the only met that shows up. The surgeon says he needs to take out the whole lobe as the original tumour was so large that what's left beside the current tumour is mainly scar tissue. My oncologists were hesitant as they thought it could be pseudo progression. But doesn't that normally happen in the beginning of infusions. I stopped infusions over a year ago. 

So I am interested in three things

1 am I making the right decision

2 how will the resection affect my quality of life

4 how is recovery and can I fly two long haul flights( 14 hours + 10 hours)  to visit my grandsons for Xmas in New York 5 weeks after surgery. Keep in mind my insurance does not cover me for this pre existing condition. The surgeon says to go. But I'm sure that depends how the op goes. He is 90% sure he can get it with keyhole surgery but if the nodes that tether the lower lobe to the media Steinem are scarred from their previous mets they will be tough as leather and he will have to do the more invasive procedure. 

Does your chest feel empty?

i guess the alternative is wait and see or else try pembro again but docs do not want a recurrence of my auto immune side effects  

Thanks for any thoughts. 

Anne-Louise 

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CindyCo's picture
Replies 4
Last reply 11/3/2016 - 4:12pm
Replies by: Hukill, jennunicorn, CindyCo

Since her first infusion of ipi/nivo (and a quick trip to the ER for a urinary track infection), my mom has had nausea, indigestion, and bad fatigue (for the last few days she has slept the entire day, only waking up to eat).  She has an extremely painful stage III hemorrhoid.  Appetite is not good and everything tastes too sweet or salty even when it is bland, but she forces herself to eat when she can.  For most of last month we had been eating a vegetable-heavy diet with no meat, carbs, or dairy.  However, with the weather changes and loss of appetite she has been eating more normal foods--but even then she has no appetite.  We still don't have red meat or dairy, but we now have chicken, fish, and whole grains in her diet.  We use cannabinoid oils during the day to treat the pain, and a heavier Rick Simpson oil to help her sleep at night.  The Rick Simpson oil has been pretty good and she now sleeps 6-7 hours through the night without waking up.  She used to wake up every couple of hours from pain. 

Currently, the majority of her pain comes from the hemorrhoid.  We are trying to treat her hemorrhoid with some natural remedies (sitz baths, cold compress, aloe vera), but not much seems to work, which makes us think it might be caused or aggravated by the primary anal melanoma mass, which is in the same area. 

Not feeling well has made her very fearful, especially since we have no way of knowing whether the disease is progressing or if treatment is working during the treatment period.  We are trying to keep her positive, but it's tough when she feels physically unwell all of the time. 

Second dose of ipi/nivo coming up on November 17.  No scans until after all four doses, so mid-January?

On the insurance side, we are switching providers during open enrollment at her work as of January so that we are no longer tied to Kaiser.  We are planning to go to Dr. Ribas at UCLA or Dr. Hamid at the Angeles Clinic.  Her oncologist at Kaiser has not seen her since September and we really feel that he is not taking her case seriously, so we will be glad to find a doctor who has more of a sense of urgency about her situation.

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SOLE's picture
Replies 24
Last reply 11/3/2016 - 1:37pm
Replies by: SOLE, cancersnewnormal, Polymath, Anonymous, KDub, Bubbles, landlover

This may be yet another topic that has been discussed but I sort of found out a real inspirational survivor story tonight. Some of you may already have seen and read it but this came at the right moment for me it seems.

https://tedhowardnz.wordpress.com/about/

Have a listen at his TedTalk (audio and pdf follow up). This guy has something to deliver. And it comes from a scientific and analytic mind.

Tell me what you think

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kensmom's picture
Replies 14
Last reply 11/3/2016 - 12:11pm

Hi my son has been diagnosed as Stage 3b (T3b N1a).  The Drs are recommending clnd and treatment with either ipi or Keytruda.  Advice or thoughts, please.

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Anonymous's picture
Anonymous
Replies 5
Last reply 11/2/2016 - 10:25pm
Replies by: stars, Janner, Anonymous, debwray

Hi

Yesterday my Dermatologist told me that I have a 3rd primary melanoma on my back.  My first was in 1997 (Clark II Breslow .75), the 2nd was in 1999 melanoma "insitu"  on shoulder. Then 17 years of no problems. Now I have a 3rd primary. I haven't seen the lab report but the Breslow is .55. This one is on my back. I will be scheduling the third WLE today.  The Dr said this being a third primary is somewhat unusual. That made me wonder if there is any specific type of testing that can be done.  ie genetic?   How unusual is 3 seperate primaries? Should I ask for a PET Scan?

Thanks

 

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JewelryCrafterGirl's picture
Replies 32
Last reply 11/2/2016 - 4:44pm

Was wondering what your recovery times were like for the wide local excision and sentinel lymph node biopsy.  Am having mine done at Lee Moffitt (Dr. Zager) in Tampa, Florida on January 13 or 14.  WLE is mid back, SNB is either under arm or neck area.  They say six weeks for total recovery, but that some people are ready to go back to work in just a couple of days.

Thanks, Happy New Year!

Pennie

embrace the positive

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dmturner's picture
Replies 4
Last reply 11/2/2016 - 12:19pm
Replies by: dmturner, debwray, laulamb

Home from hospital had 2 satellite spots positive for melanamo today.  Back of my heel, original source bottome of heel.  I also, had skin graft taking in right groin area same place as SLNB, doc also took one swollen lymph node from same spot.  I am just wondering if the node was only swollen cause my original was healing via secondary healing.  (No skin graft just open would).

I have to keep the bandage on till Monday.  I guess that is when I will get results from lymph node.

Had to postpone last Yervoy treatment.  Did it even work???

Anyone else had satellite tumors close to orginal?

 

-Donna

diagnosed in June, 3a

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Anonymous's picture
Anonymous
Replies 3
Last reply 11/2/2016 - 12:09pm
Replies by: Anonymous

Hey guys, i had a black spot on my toenail but i scrubbed it off somehow, was a small circular thing.. could it be something serious or the fact it could be removed suggest its nothing. Bit scared in all honesty, so would appreciate any answers. I scrubbed under the nail quite hard and its disappeared, would I be right to assume if it was a serious spot I couldn't of done that?

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SOLE's picture
Replies 18
Last reply 11/2/2016 - 9:18am
Replies by: SOLE, Kim K, Bubbles, Ed Williams, Anonymous, Johnjk04

A fairly recent (2014) German study on how to better predict survival than AJCC. More than 1000 patients followed so this is serious.

http://journals.plos.org/plosmedicine/article?id=10.1371%2Fjournal.pmed....

Has anyone already seen this?

Thoughts?

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