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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Dear MPIP Community:

Next week, I'll be recording a webinar for Stage III melanoma patients with Vernon K. Sondak, MD, Chair of the Department of Cutaneous Oncology at Moffitt Cancer Center in Tampa, FL. Dr. Sondak has a vast amount of experience in melanoma and surgical oncology and treats melanoma patients at all ages and stages. This will not be a "live" webinar, rather, I will be recording it with Dr. Sondak and his presentation will cover a variety of topics - including diagnosis, treatment and research specific to Stage III melanoma. The webinar will then live on our website and be promoted in a variety of ways.

If you have specific questions or topics that you would like Dr. Sondak to address, please email me directly at education@melanoma.org. I will gather all questions/comments and Dr. Sondak and I will work together to streamline those into a robust and dynamic webinar. 

Looking forward to hearing from you!

Shelby - MRF

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JoshF's picture
Replies 18
Last reply 11/9/2016 - 3:24am

I haven't been checking in much lately. So I hope this finds everyone well. I think often of all of you and pray you're well. I've had a lot of anxiety and crap going on in my head lately. Anyway, I was in Houston this week at MDA for 6 week scans post TCell infusion. So bottom line I'll take this as a win though as you can all attest to, we want better. The brain MRI showed nothing new which is great after having gamma knife Aug 19...big win! The CT Scan showed nothing new and minimal progression in few leisons. The team referred to a 3-8% progression. While we'd like things just disappearing, it's a process and I'm told it can take time as it been just over a month. So that leaves us committed to completing the trial in regards to treatments. So I did dose #3 of ipi(just an FYI with all treatment I've done...that was dose #10 of ipi for me). I'll go back right before Thanksgiving for final dose. Then in mid Dec we'll repeat scans and go from there. They're also going to biopsy a sub-q to test. Whew!!! This is a crazy life we live but I'm living and get to hug my wife & kids so I'll deal with it. 

Finally, I did have a few sub q's shrink up but not go away totally. Some of you will recall last posts asking questions about this. They (MDA) don't include that in progression etc..as it appears they're not measuring. Just that nothing new showed up. I'm scared and hope my immune system kicks into high gear. Though I'll take this latest news as positive since I've only been kicked down since May. Love and peace to you all!! Thank you for your unending support!!

Josh

Let's work for better treatments....for a cure!!!!

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jvictoria's picture
Replies 3
Last reply 11/7/2016 - 1:11pm
Replies by: jvictoria, debwray, geriakt

Hi everyone,

Well, ended Nivo trial in June because of side effects and two small spots showing up in the lung. Subsequent follow up CT scans in August showed significant shrinkage; PET scan showed no uptake. Unfortunatly, CT scans last week showed significant growth of the lung nodules and a new spot on the liver.

Doctors have recommended a low dose IPI/Pembro trial so I was wondering if any of you have had experience with the combo. Looking to find out what to expect. Plan is to start the trial this Tuesday.

Any other thoughts are very welcomed also.

Thanks

Juan

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Anonymous's picture
Anonymous
Replies 5
Last reply 11/7/2016 - 3:02pm
Replies by: youngann, Elizabeth19, casagrayson, Anonymous

Please can someone with personal experience give me an idea of whether this could be a form of nodular melonoma? Awaiting mole biopsy app. It is elevated on corner and is a pale/colourless lump

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Gigi17's picture
Replies 5
Last reply 11/7/2016 - 4:50am
Replies by: miaka618, debwray, Gigi17, Mat

Hi everyone. I was diagnosed melanoma stage 3c. I am now in a yervoy/opdivo trial with NED. I have just finished my first cycle. Since the first session I have had a horrible headache accompanied with sore eyes, ears and neck. My Mri, eyes, and neck all came back clear? This week my blood work showed I have hyperthyroidism and ALT is above normal. I'm wondering if anyone else feels this way? I've been put on various drugs to reduce the headaches but nothing works! I have yet to be put on prednisone. My oncologists are not sure the headaches are from the trial...but the neurologist and I do. I've never had headaches or issues with my eyes, ears and neck. My lymphnodes in my neck are double there size but do not contain cancer....any thoughts?

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Cathy M's picture
Replies 4
Last reply 11/6/2016 - 6:08pm
Replies by: Cathy M, Mat, Casitas1, Patina

I have read some posts of trying Keytruda or Ipi/Nivo after failing one or the other. MY husband is Stage 4 BRAF Negative. Failed Ipi, Mekinist (targeted), Keytruda, Temodar and will scan Nov 15 to see if he is responding to carboplatin/paclitaxel. He is in a weakened state and though onc offered referral to Scottsdale, AZ my husband doesn't want to travel the 8 hours to get there...Doesn't feel he can keep up with that and would do more harm than good. So if anyone has tried Ipi/Nivo after failing Keytruda I'd like to hear how you did or are doing. We are getting closer to hospice and I'm getting closer to a panic state. Thanks for any info.

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Replies by: Gigi17, Anonymous

I had this large mole on my back for the past 3 years, never really noticed a change. I believed the center was always raised from the get go. I went to the local ER department to get it checked out. The 2 doctor's asked me what issues I had with it? I asked does it look like Melanoma and they told me to them it's fine, it looks benign and not to worry about it. I asked them if it looked deep and they told me no. I went to the local walk in on an unrelated matter and had him check out my mole. He looked very worrisome, asked how long I had it for and scheduled me right away to have it removed and tested. He said it look adnormal and had black spots in it. I asked him if it looked deep and he said it has some depth to it. Both there and the hospital it was a visible inspection only, touch it to see how it feels. The mole is not hard at all, you can move it around like a regular mole. Told me not to worry until the testing has been done. I am afraid what this could be, my mother had Melanoma but had it removed before it can spread. I have the removal surgery come Thursday, hoping for the best that it's benign but my head thinks differently. 

https://imageshack.com/i/plf6WmnVj

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Anonymous's picture
Anonymous
Replies 5
Last reply 11/11/2016 - 4:16pm
Replies by: Anonymous, Toby0987

I was able to take a brighter picture of the mole from previous topic

https://imageshack.com/i/pnfMAIiWp

Just wondered what if anyone had any thoughts, if it looks serious, if i need a biopsy or if it even is a mole.

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WallyE's picture
Replies 2
Last reply 11/12/2016 - 10:30am
Replies by: WallyE, debwray

Please can someone explain to me what the following means as per an MRI scan done on 2/11/16:.

Small subcentimeter aortopulmonary lymph nodes measuring 5 to 6 mm

Small right tracheobronchial lymph node measuring 4 mm

A calcified grunuloma is noted in within the left lung base (the middle lobe of my right lung was resected)

A wedge shaped hypo density noted with the lower pole of the right kidney represents a small cyst measuring 7 mm

A simple cyst is noted in the upper pole of the right kidney measuring 5 mm

There is a rim enhancing heterogeneous hypo dense periphery enhancing lesion measuring 44 x 34 x 38 mm (APxTRVxCC) related to the subfundal region,and greater curvature of the stomach inseparable from and superior to the tail of the pancreas. This is suggestive of recurrent disease.

I thought I was fast approaching permanent NED when I had 4 years of NED last year - then Mets to my stomach (total stomach removal underwent in Nov 2015) and now this new thing,

What does this all mean? The doctors appear to be coy in telling me at this stage - they are going to discuss the way forward at a meeting on Tuesday 8/11 and will contact me on Friday 11/11.

Could this be Melanoma Metastases of the Pancreas?

Thanks all for a wonderful forum for discussion,

Wally

One day at a time.

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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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adriana cooper's picture
Replies 7
Last reply 11/14/2016 - 3:30pm

 After discussion with and upon the advice of the neuro-oncologist (whom was in consultation and in agreement with her melanoma oncologist, as we understood to be at the time) and consultation with the neuro-surgon, Adriana had an ommaya placed with the plan to start intrathecal Depocyt treatments every two weeks. We briefly discussed with him the IT IL-2 going on in TX which he described as being experimental or in trial, which I found to be uninformed. I also brought up the subject of melanoma being different than other cancers and not being particularly chemo-sensitive and discussed Depocyt along with the other it-chemo options. I also inquired if he had followed this plan with other melanoma patients, he said he had and I did not press further. In hindsight I wish I had inquired about how many patients, how long ago and their specific outcomes. I found my self too trusting in the light of his expertise (or intimidated by it.) Adriana's oncologist office actually called to make an appointment with her to discuss her situation but it was for the afternoon on the day of surgery and he opted to defer to the following week so that she would not be under the influence of anesthesia and was fully aware of the discussion. Again in hindsight I still don't understand why the melanoma onologist didn't cancel the surgical plans until after he had the opportunity to talk to us. (During our most recent appointment the melanoma oncologist said, as I understood,  that the neuro-oncologist likely doesn't know a whole lot about melanoma as he likely doesn't see that many melanoma patients.)

On September 27 Adriana had her ommaya placed without particular incident and recovered over the next few days although she continued to have substantial facial and sciatic pain as she has had for some time. On September 30 Adriana had her first Depocyt treatment. This day was also the first time ever that I had to use the wheelchair to get her into and out of the hospital due to the continued pain she was in, heartbreaking for me and frustrating for us both. Her pain meds were increased and the treatment was administered without incidence although I must say it is slightly disturbing seeing fluid being sucked out and put in through the top of your loved ones head. Although side effects of chemical meningitis were described no instructions as to when to call in or take action were given. By late that night neck pain and headache had set in along with her other pain, and fevers starting by noon of October 1. That evening the neck pain was severe and temperature close to 102 much of the time. We increased her Dex at the recommendation of the on call/nurse/neurology resident (middle of the night on a weekend of course) and advised to go to ER if temp stayed above 102. Pain and continued fevers through October 2 and most of October 3. The fevers finally subsided during that night.

On October 4 while still in considerable pain (again in the wheelchair) we visited the oncologist who advised Adriana to cancel further Depocyt treatments as it is “ineffective for melanoma” and will only cause further discomfort and that we will now be focusing on quality of life treatments as there is no cure for LMD. Essentially she had the surgery and treatment for no reason :>(( He confirmed that our research of prognosis of 4-6 weeks un-treated and 6-8 months for treated patients was in fact correct. He also theorized that Adriana has likely had leptomeningeal disease since February 2015 but mis-diagnosed as the symptoms were mistaken to be unusually severe side effects of ipilimumab and masked by the steroids and BRAFi she was switched to at the time. He advised that she see her family (which was already planned) and get affairs in order – the end of life discussion. Although he mentioned hospice he referred us for an appointment with palliative care. He restarted her on Taf/Mek combo and continued Dex to control fevers (a side effect for her during her previous course of Taf/Mek) in hopes of some improvement. If improvement is seen then possible return to Pembro in order to conserve BRAFi for extended use. In my hope for some optimism and in the light that she has had LMD since 2/2015 why not repeat the sequence (or some combination) of BRAFi—Gamma Knife as needed—Pembro-- that has gotten her this far.

Within 5 days of starting Taf/Mek + Dex all of Adriana's pain was gone including neck-head-face and the horrible sciatic pain (lastly diagnosed via MRI as Tarlov cysts) that has plagued her for months. Although she has double vision (hope to see a neuro-opthomologist for some help soon, sooo many specialists) and continued facial palsy on the right and more recently facial muscle atrophy on the right. Our 10 day trip to Ohio to see her family and explain the circumstances went well and was actually relaxing for her. We are now planning a late December commitment ceremony with our family as we find that we can not get married without risking her health insurance, even though my income is very small. I actually asked her to marry me almost 10 years ago and this is long overdue and not something I want to let go undone.

This week's visit with the oncologist felt more down and less optimistic?? on his part. We came to the realization just how rare this is as she is the only melanoma LMD patient at SCCA. Adriana is doing well and he started her to taper her off of Dex over the next month in hopes of replacing Taf/Mek with Pembro. He does not subscribe to use of immunotherapy while on steroids as he feels they counteract each other. I hope to persuade him otherwise, if necessary, with some of the evidence Celeste has provided here in the past.

 

Although IT-IL2 in TX is not currently an option I theorize with the success of systemic Pembro/Nivo and the increase in incidence of LMD due to longer survivals that the newer immunotherapies will be used intertheacally in the future. Although I am uneducated in any of this it would seem to be a natural evolution.

 

Although things seem dire and the situation some times takes over our emotions, we continue to try and live our lives and get things in order. We strive to have as many experiences, love each other and our families and create as many memories as possible.

Please ask questions of your providers, don't be afraid to offend them, slow things down if you need to. 

Thanks for reading. I hope something here may be of use to someone in the future.

 

Andrew1725, I hope you are doing well.

 

Best wishes to you all.

Feel free to email harborhits@gmail.com

Rob

Adriana

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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.
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“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 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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youngann's picture
Replies 5
Last reply 11/6/2016 - 3:46am

While I was having my 4th Ipi infusion yesterday, my husband went down to pick up the CD and radiologist report from Monday's CT scans. In June, my PET/CT was perfectly normal so everything except the right axilliary is new.

Right Axilliary: soft tissue thickening is more pronounced than in previous scan. Possible scarring or post surgical change but could be infectious, inflammatory or neoplastic.

Right Breast: soft tissue thickening 1cm. Could be infectious, inflammatory or neoplastic.

Right Thyroid Lobe: 0.8cm x 0.4cm focus of low density.

Left Lung: 2 pulmonary nodules, 2mm & 4mm

Right Lung: 3 pulmonary nodules, 2mm, 2mm & 3mm

I have a call in to my oncologist to discuss these findings and find out if further tests should be done before I see her on 11/17.

Yikes!

Ann

 

 

http://www.cafepress.com/daybreakdesigns

Home of the original "Crappy Shirt"

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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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