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: Rocco, jbronicki, Bubbles, Anonymous

https://www.washingtonpost.com/powerpost/house-approves-right-to-try-bil...

 

"Still, the effort has run into criticism from FDA Commissioner Scott Gottlieb, a Trump nominee, who told House lawmakers in the fall that while he would implement the legislation if it becomes law, he opposes a federal version of “right-to-try.”

The FDA authorizes “99 percent” of the treatment applications it receives each year under the so-called “expanded access” program for seriously ill patients, Gottlieb told a House subcommittee on Oct. 3. He said most of these treatments permitted under “compassionate use” are ineffective.

“The vast majority of people who will use a drug through expanded access are using a drug that doesn’t work,” he said."

Because you made them wait until they were on the verge of death before granting access???? Don't want to take a chance on letting your numbers look bad. angryangry

 

Rob

Adriana

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iskitwo's picture
Replies 5
Last reply 4/6/2018 - 9:53pm
Replies by: cjm22, iskitwo, Bubbles

 I am currently 3a. I posted back in Nov that scans showed a new 5mm nodule. Pet scan in Jan showed small amount of uptake (1.5) nodule 8mm.  Current scans show that nodule is now 9mm. Doctor mentioned doing a biopsy but it is in the lower left lobe and the radiologist cannot reach it by needle biosy. The oncologist said that it could also be done by VATS or that we could also continue to watch with scans. Just not sure what to do at this point. I guess at this point my question is....is it possible for a benign nodule to have this much growth? would it be best to justs biopsy and get the answers? 

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Anonymous's picture
Anonymous
Replies 8
Last reply 4/5/2018 - 7:47am
Replies by: bjeans, Janner, Anonymous, Nanners10

Hi everyone,

I have a small black mole that about a year ago just started to occasionally flake and peel. If I look at it with a flashlight it's two different shades of brown/black. Sometimes it even grows black areas that flake off. I showed it to my GP and she said it's benign but I'm not fully convinced.

It hasn't changed in size at all but it does look different because of the flaking and peeling and regrowth of skin.

Is a mole that flakes and peels a sign of melanoma?

 

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lindanat's picture
Replies 4
Last reply 4/4/2018 - 11:49pm
Replies by: lindanat, kst, Bubbles

Hello Mel Peeps,

This forum is awesome for up to the minute information and experience so I'm hoping someone out there has experienced my current challenge.  I'm Stage 4 and have been on Opdivo for 28 infusions (previous to that did Yervoy/Opdivo combo for all 4 infusions).  So far, they say NED.  Most recent scan showed pulmonary edema (cardiogenic) so an echocardiogram was ordered.  The echo shows my EF (ejection fraction - something I never knew existed) to be very low (20% and normal is 50-60%).  My melanoma specialist (Dr. Freeman, formerly of Angeles Clinic and now with City of Hope) is calling it autoimmune cardio myopathy and is discontinuing the Opdivo for the time being.  They (she and Dr. Sharma my onc) have put my on prednisone and Lasix to hope to counteract the attack of the heart.  It seems there are rare cases where Opdivo turns on the heart.  I see a cardiologist tomorrow to determine next steps.  Have any of you experienced this turn of events?  On the one hand, I want to deal with the heart issues right away but I'm also terrified, on the other hand, to stop Opdivo.  

Any thoughts are greatly appreciated.

Linda

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tolnaiba's picture
Replies 1
Last reply 4/11/2018 - 8:54pm
Replies by: kcmtnbiker

Hi everyone!

 

At first, english isn't my native language, but I hope I will be understandable.

I'm a 30yo male, and I have a big hairy birthmark on my back (Tierfell naevus), and early february I had some stinging feelings on it, but not everytime on the mole, some times elsewhere on my back but on the same side, where the birthmark is. I got panicked and I have immediately self checked and called a dermatologist for an appointment. 2 weeks later, the doctor said it's all right, she can't see any bad things on it, but she recommend to remove it, because a big birthmark is a high risk factor.

I said OK, but the other day I visited another dermatologist too. She is a dermato onkologist, and she said the same. It's OK, but I have to remove it becouse prevention. And she said "when it's painful, it's not cancer" or something like that. That was on 21st February, the surgery will be on next monday 9th April, but the stingig feeling doesn't leave since. Some days where better in March, but it came back. It's not so painful, just scary for me and usually happens when I move and just a few times a day.

I have checked the symptoms of nodula melanoma, and there is "sting, itch or bleed". But nodular melanoma grows rapidly, and from early February, my mole doesn't changed (I have photos from Febr), and late Febr the doctors saind it's OK.

I don't know how to feel about this. Has anyone similar "stinging feelings" without any other symptoms?

I hope the biopsy will say the same as the doctors. Thankfully my mole is not so huge, so it can be removed with only 1 surgery.

 

Thank you for read this. If you have any advise please answer.

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mrsaxde's picture
Replies 15
Last reply 4/7/2018 - 2:44pm

I tolerated 4 out of the maximum 12 doses of IL-2. Last night when I stood to use the urinal bedside and got winded I started to get concerned. Fortunately they had hooked up an oxygen cannula and I put it on. IO was supposed to have a dose of IL-2 at 3am. At 2am the nurse did my vitals and said "I don't see anything here that would prevent Dr. Shindorf from ordering the next dose of IL-2." I responded by saying, "If I get a vote, let's wait until morning."

When no IL-2 came at 3am I wondered whether my vote had influenced the decision. When the nurse came to draw labs at 6am I asked. She said, "It seems that the decision had already been made, by the attending (Dr. Yang)."

When everyone came through on rounds this morning Dr. Yang told me that they had decided to stop the IL-2. I said, "That's good to hear, because that's where I am, too."

So now it's a few days of recovery, getting my blood counts back to normal, and one of the most nerve-wracking parts of the treatment -- waiting to see if it has worked.

Thank you all so much for the outpouring of love and support you have provided me. I love this forum and I love all of you, too.

-Bill

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Replies by: Janner

Dear all

 

Since 2 months I have a dark area under my toe nail. I attached one picture to get some advice. Thanks a lot

 

https://drive.google.com/open?id=0B8Rg9kqxp7lJYUswWEhUeDMyWHZZRDVGYVVGOG...

 

 

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Jules166123's picture
Replies 11
Last reply 4/8/2018 - 8:50am

I had a Melanoma removed in November last year and it was stage 1b. I then had a wider excision 2mm which showed cancer cells in some of the skin but there were still a 1mm clear margin my scans salons came back clear so although they said I was now stage 3b I did not need further treatment. I am now on 3 monthly checks and 6 monthly scans. However recently my scarring tissue has started to itch and when looking through a magnifying mirror I can see several dark spots on it. Should I be worried? I see my skin specialist on 20th April (it is now the 4th) can it wait till then to be checked? 

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Anonymous's picture
Anonymous
Replies 8
Last reply 4/9/2018 - 2:27pm
Replies by: jrtufo, Oldwife, Rob578, Jayming86, gwright3799, Bubbles, Anonymous

Found lump in my groin/ thigh area. Had it removed January 26, 2018. Metastatic Melanoma. PET scan and brain scan clear. No original sight for Melanoma. Treated with radiation 27 treatments. Now starting regimen of above mentioned drugs for 1 year due to Brag indicator in blood. Does anyone have any knowledge of these drugs or any side effects? Little apprehensive. 

Gayle K Wright

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Holliesig's picture
Replies 2
Last reply 4/3/2018 - 11:21pm
Replies by: Bubbles, Holliesig

My dad is currently stage IV with 6 brain mets, originally treated with SRS and then 1 round of IPI/NIV before being hospitalized for swelling of the brain in early January. He was put on high dose steroids and now on mekinist and trametinib for 2 months. At first he felt awful from the chemo, but has been feeling pretty decent for about a month now. He had an MRI 2 weeks ago that showed reduction in the 3 largest tumors and no further progression of the smaller tumors or new tumors. We have been slowly tapering the steroids over the past 3-4 weeks without issues so far. Over the weekend, he started feeling extreme exhaustion, nausea, and fever with chills and then sweats. Went into doc yesterday for labs, labs looked normal. He got an antibiotic in case he was coming down with something. He feels worse today, nausea- no appetite- continued fever close to hovering around 101.7 and hasn't gotten out of bed. This seems odd to me after being stable on the chemo and the tapering of the steroids being so gradual.. He's not achy so it doesnt seem like it would be the flu to me. Does anyone have any advice or experience with anything similar? I'm his primary caretaker and starting to worry about something more serious going on. 

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ACDO's picture
Replies 2
Last reply 4/5/2018 - 11:02am
Replies by: ACDO, Janner

my husband (37/m Caucasian) had a mole removed from his back and just got the results:

Diagnosis: fibrous papule

Compound melonocytic Nevus with architectural disorder and severe cytologic atypism of the melanocytes (displastic nevus, severe)

 

Compound melanocytic Nevus with elongated, fused rete edges, extensions of the junctional component beyond the dermal portion and concentric lamellar fibrosis within the underlying papillary dermis. A mild superficial lymphocitic infiltrate is identified. Cytologic atypia is severe. 

 

we are very worried. Doctors are going to remove more of the area. It’s close to his spine. Wondering how worried we should be? If we should get second opinion and do further testing. 

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smyers5015's picture
Replies 10
Last reply 4/7/2018 - 8:32pm

I've been on this board since my diagnosis but have only posted a couple of times.  I hope you find this motivating. 

I was diagnosed last April 19 with stage IV metastatic melanoma, 1 large tumor 8.5cm x 4.5cm on my left adrenal gland and a small 1.1cm nodule on my right lower lung.  Further testing showed I was BRAF +.  At diagnosis I started my research and adjusted my supplements based on that research (just in case) to a daily multi-vitamin, Curcumin, Miatake-D, Resveratol, and an extra 1000mg of vitamin D.  In May of last year I started the Yervoy/Opdivo combo and was able to take all 4 doses at 3 week intervals.  On my second scan after the 4 rounds of the combo the tumor had reduced at 4.5cm and no change in the lung.  I started Opdivo maintenance at that point continuing every 3 weeks.  I really had few side effects during the initial treatments but around Halloween they started, a rash, taste went haywire, loss of saliva production, sore joints and muscles and severe fatigue.  Most of those have been taken care of by prednisone.  I had another follow up scan at the end of January and the adrenal tumor was basically stable from the prior scan and a consult with a surgeon was made as they felt it had reduced enough to resect without damaging other organs (other than the adrenal gland).  I had the surgery on 3/23.  Today I went for the follow up with the surgeon and got the pathology reports.  The report stated "Adrenal Gland with necrosis, fibrosis, chronic inflamation, focal granulomatous inflamation, and hemosiderin-laden macrophages."  But most importantly... "No Malignant Melanoma Identified."

 

It appears the immunotherapy did it's job, and although I know it's a-typical results has allowed my body to kill the active cancer cells and left the structure.  This had never crossed my mind, I was planning on radiation follow ups.  I wanted to share because I know good news is often hard to come by with this disease, but it can happen, does happen and keep fighting because we are more than the disease!

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Rob578's picture
Replies 7
Last reply 4/4/2018 - 1:15am
Replies by: QuietPoet, Brent Morris, cancersnewnormal, bjeans, Anonymous

A new drug originally developed for a rare disease "scleroderma" happened to stop the spread of melanoma by 90% .Michigan State University originally released below article in late 2015.

The University is doing proper clinical trials on "scleroderma" but there is no where to be found clinical trials for this drug on melanoma. Yet big yearly donations are made to the University from guess who "Big Pharma".

Can you imagine for a moment the $$ Billions of dollars lost by these Big Pharma Companies on a drug like this on Stage 4 patients ? It could potentially halt stage 4 by 80% to 90% and thus reduce their revenue by the same amount. So why not make millions of donations to the University for the drug and just put it on the shelve.

Remember they only have a judicial responsibilty to their shareholders , not the health of the general public. I wonder the response from this site ? Given if you click "About Us " the sponsors that pay the bills are "Big Pharma ".

Health + Life + Science & Technology
Published: Jan. 4, 2017
PROMISING NEW DRUG STOPS SPREAD OF MELANOMA BY 90 PERCENT
Contact(s): Richard Neubig , Kate Appleton , Sarina Gleason

Michigan State University researchers have discovered that a chemical compound, and potential new drug, reduces the spread of melanoma cells by up to 90 percent.
The man-made, small-molecule drug compound goes after a gene’s ability to produce RNA molecules and certain proteins in melanoma tumors. This gene activity, or transcription process, causes the disease to spread but the compound can shut it down. Up until now, few other compounds of this kind have been able to accomplish this.

It’s been a challenge developing small-molecule drugs that can block this gene activity that works as a signaling mechanism known to be important in melanoma progression,” said Richard Neubig, a pharmacology professor and co-author of the study. “Our chemical compound is actually the same one that we’ve been working on to potentially treat the disease scleroderma, which now we’ve found works effectively on this type of cancer.”

Scleroderma is a rare and often fatal autoimmune disease that causes the hardening of skin tissue, as well as organs such as the lungs, heart and kidneys. The same mechanisms that produce fibrosis, or skin thickening, in scleroderma also contribute to the spread of cancer.
Small-molecule drugs make up over 90 percent of the drugs on the market today and Neubig’s co-author Kate Appleton, a postdoctoral student, said the findings are an early discovery that could be highly effective in battling the deadly skin cancer. It’s estimated about 10,000 people die each year from the disease.

Their findings are published in the January issue of Molecular Cancer Therapeutics.
“Melanoma is the most dangerous form of skin cancer with around 76,000 new cases a year in the United States,” Appleton said. “One reason the disease is so fatal is that it can spread throughout the body very quickly and attack distant organs such as the brain and lungs.”
Through their research, Neubig and Appleton, along with their collaborators, found that the compounds were able to stop proteins, known as Myocardin-related transcription factors, or MRTFs, from initiating 

https://msutoday.msu.edu/news/2017/promising-new-drug-stops-spread-of-me...

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llchelseall's picture
Replies 4
Last reply 4/3/2018 - 9:31pm
Replies by: Bubbles, Anonymous, llchelseall, adriana cooper

My brother, Jered, 36, is stage iv with a very large tumor burden (as of scans Jan 24) to his liver, lungs, kidneys, adrenal gland, some bones, and superior vena cava. He received 9 rounds of radiation, 1 round of Opdivo/Yervoy, and is now on Zelboraf & Mekinist.

On the day of his last scheduled and 10th round of radiation, 2/2/18, he was sent to the ER for tachycardia and anxiety. Just over 24 hours later he was sedated and on a ventilator in the ICU. He stayed in the ICU for 36 days. His organs were failing, they put him on all the same drugs Hospice would give to someone who is dying. All of the specialists said he was untreatable and oncology needed to see that too.

We pushed hard on oncology to try Zelboraf; when they finally agreed they called it a hail mary. After 4 days of him getting Zelboraf dissolved in water and pushed through his gtube, Jered bounced back. They then started giving him crushed Mekinist through his gtube as well. 19 days after his first dose of Zelboraf he was out of the ICU and swallowing his pills on his own. He stayed on the hospital floor for a week and was transferred to a rehabilitation hospital on 3/21/18.

Jered has not had much success at the rehabilitation hospital. He has actually lost weight while there and had a bout of severe delirium that lasted 5 days. His labs are still on the up, although bilirubin is 2.3, and he doesn't have any pain. His delirium incident seemed to set him back drastically. This Wednesday, 4/4/18 we will take him to his first outpatient oncology visit since his time in the hospital, then 5 hours north to our parent's house. We will have home health visits 5 days a week for physical therapy and our mother has outfitted their home for his needs.

We all know Jered needs to see a melanoma specialist at an institute, I previously contacted Dr. Lee at Northside in Atlanta, so that is an option. He has not had another scan, other than a head CT when he had the delirium episode, which came back clear, so we do not know if the inhibitors, radiation, and/or Opdivo/Yervoy worked any magic. I tried to press his oncologist to give him another round of immunotherapy while still keeping him on the inhibitors, but he said it was not FDA approved and he could not.

I know the Z and Mek stop working at some point. I am struggling with the next step for Jered. Do we move him to Florida or Texas to become a patient at Moffit or MD Anderson? Do we just keep up with the Zelboraf and Mekinist until it stops working and then hope he has time to receive another form of treatment? Or can we try immunotherapy again to see if that works then go back to the Z/Mek if needed? Really which is better? I understand he is incredibly lucky to be alive, should I push this or just celebrate his being with family and in good spirits? 

Can you just go to any cancer institute and become a patient? This is the first time really since Jered's diagnoses that we have control. Any and all insight is welcomed and appreciated. 

 

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swillson's picture
Replies 1
Last reply 4/2/2018 - 6:06pm
Replies by: Janner

Hi All!

New here. Was wondering if anyone has had complications after surgery? I had melanoma on righ shin very near my knee. I have about a 4 inch long incision. Since surgery over a year ago I have knee pain, muscle tightness behind the knee and in hamstring. Also stinging pain at the bottom of the scar. Maybe nerve issues? Still have some numbness nearby the site. Had the surgeon and and orthapedist look at it last year and they all said it was fine. I'm very upset because prior to surgery I had no issues with my knee or leg. Now I can no longer run, do knee bends, lunges or much of anything. The leg is also slightly tight and swollen most of the time.  I had mohs surgery. Any feedback is welcome! Thank you!

 

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