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.

Expand/ Collapse Topic
 
Replies By
View Topic
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...

 

 

Login or register to post replies.

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...

Login or register to post replies.

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. 

Login or register to post replies.

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. 

 

Login or register to post replies.

jrtufo's picture
Replies 4
Last reply 4/3/2018 - 9:18pm

Hi Caring Friends-So the Keytruda didn't work for me and now I'm moving on to the Cobimetinib/Vemurafenib combo.  Living here in sunny Colorado I'm very concerned about the photo sensitivity side effect (and all of the others...)  Any one on this combo-how is it going, any success and any tips for me?

Julie T stage 3C non-resectable desmoplastic melanoma 

JulieT

Login or register to post replies.

JerLon's picture
Replies 8
Last reply 4/3/2018 - 9:07pm
Replies by: Bubbles, JerLon, Janner, Anonymous

Back in 10/2017, my FIL was diagnosed with Stage IV Melanoma.  Primary was Uveal Melanoma in left eye 27 years ago.

In 11/2017, FIL began cycle of Nivo/ipi through 1/2018.  In 1/2018, began Nivo every two weeks up until last week.

In February, scan showed growth in in 4x4 liver tumor to 5x5.  Also showed a number of other new mets throughout stomach and liver.  In March, another scan showed more progression (more mets, more growth in others).  

At this point, all treatment has stopped.  My FIL does not seem at all interested in clinical trials.  The doctor mentioned one oral drug that prolongs life by a small length in a small percentage of patients.  

A few questions:

1) Does anyone have any good resources on what progression can look like?  

2) Are there any resources on what symptoms might look like as it gets closer to the end?  We have no clue if we are days or years away?

3) I can't begin to imagine what my FIL is going through.  He is against clinical trials because he "doesn't want to be a lab rat."  I know this may be more psychological than medical, but any advice on how to advise him here?

 

Thanks for any help.

Login or register to post replies.

gopher38's picture
Replies 22
Last reply 4/3/2018 - 7:45pm
Replies by: Edwin, bjeans, gopher38, jennunicorn, BillB, tedtell1, Bubbles, Anonymous

After I had my WLE/lymph node removal in February, the dermatologist scheduled me for a PET scan, which thankfully came back clean.  Seemed like a pretty logical next step, to see if the cancer had spread to other organs.  Well yesterday I got a bill from the radiology company, and the insurer (BCBS) hadn’t picked up any of it (>$6K).  I call the radiology company, thinking that they’d forgotten to submit the insurance claim, but they said, no, they’d submitted it, but it had been rejected.  So I called BCBS, and they said that, indeed, it had been rejected as an “Experimental/Investigational” procedure and I was responsible for the whole thing.  I asked which category they put it in, because I didn’t think there’s anything experimental about PET scans, and yes, it’s investigational in some sense, because they’re trying to see if I have mets on my lungs or elsewhere, but I thought that that was normal procedure after finding cancer in the lymph nodes.  The guy on the phone was saying it was experimental, experimental, then investigational, and then finally said he wasn’t sure, but that it’s outside their coverage.  After a bit more discussion, he said that I could file an appeal, and told me that I had to get my medical records and some other info and then I could try to appeal their decision.

I guess I could understand an insurance company refusing a PET scan as “unnecessary” if you tried to get one every month or something, but has anyone every had a PET scan refused as “experimental/investigational” for the first one after a melanoma diagnosis?  I mean, I didn’t sign myself up for the PET scan.  The dermatologist just told me after the operation, “You’ve got melanoma in the lymph nodes; you’ve got to go here for a PET scan”, so I went.  Seems bizarre to me on the part of BCBS.

Login or register to post replies.

Hi everyone,

My father was diagnosed at the beginning of March with stage four melanoma with brain metastases. It's been a heartbreaking month, as you can imagine. He was admitted to the hospital pretty much the moment he was diagnosed, due to brain swelling and the need for immediate radiation treatment. He's also begun the targeted therapy treatment since he is BRAF positive.

Now that he has been there for nearly a month, the hospital is looking to discharge him. He is stll incredibly weak, dealing with expressive aphasia (meaning he can't speak or communicate what he needs), can't get up to use the restroom, etc. Basically, he's bedridden with very few options to let people know what he needs. 

My family has been looking into our options--namely, nursing homes and home care. Home care seems nearly impossible at the moment with the level of care and attention he requires. In all my research, it seems that the nursing facilities in commuting distance for my mom don't have much information on how they help cancer patients. It has also been extremely challenging to find a nursing home willing to administer the targeted therapy medication my dad needs (they are taken orally, but due to his difficulty swallowing, they have been putting them through a feeding tube). 

So...any insight? Has anyone else had difficulty finding a nursing facility that is prepared to deal with the extent of care and the kind of treatment melanoma patients require? We are in the Southern California area and welcome any suggestions!

Thanks so much.

Login or register to post replies.

Bbombers2's picture
Replies 9
Last reply 4/3/2018 - 5:43pm
Replies by: jrtufo, Bbombers2, Bubbles, tedtell1, Anonymous

My father in law has stage 4 melanoma. After numerous surgeries and clinical trials (targeted therapies and ipilumumab) over the past 2.5 years - he is being sent home tomorrow to NJ for hospice. The doctors at Sloan, UPenn, and Yale have told him there is nothing else they can do for him. His liver is too weak for anymore trials and the cancer is throughout his body. Should we just let him be comfortable at home his last weeks-months? Or does anyone believe he can still be treated? Please let me know.

Login or register to post replies.

mrsaxde's picture
Replies 15
Last reply 4/3/2018 - 8:15am

Somewhere upwards of 20 doctors just left the room, including the incredible Dr. Rosenberg. Dr. Yang, my attending, went over the process and what to expect from the cell transfer and the IL-2. This is it!!

The nurse last week suggested that I might want to put together a playlist to play as the cells infuse. So this is what I put together on Spotify (I just realized I should have included Marvin Gaye's "Let's Get It On."):

1. "Ride Of the Valkyrie," from "The Ring" -- Richard Wagner

2. "Wrecking Ball" -- Bruce Springsteen

3. "Rise" -- David Guetta featuring Skylar Grey

4. "Standing On the Verge Of Getting It On" -- Funkadelic

5. "It's Time" -- Imagine Dragons

6. "I Saved the World Today" -- Eurhythmics

I hope all my Christian friends have had a blessed Easter season, and my Jewish friends are enjoying their Passover celebrations. Happy Ishtar to those who celebrate that, and to those who follow faiths without a holiday this past weekend, or those who do not practice any particular faith, I hope your weekend was as wonderful as mine. This board has been a constant source of strength, information, and inspiration over the past few years.

Today is the first day of the rest of my life!

-Bill

Login or register to post replies.

IT Nivo combined with IV Nivo at MDA

https://clinicaltrials.gov/ct2/show/NCT03025256?cond=leptomeningeal&rank=6

Maybe I know more than I don't know.

If I were 35 years younger and knew what I do now maybe an education in the medical field would have been my choice.

 

Again my broken record reccomendation is get to MDA.

Rob

Adriana

Login or register to post replies.

Anonymous's picture
Replies 11
Last reply 4/3/2018 - 1:36am
Replies by: Shann, Janner

Hi

I have recently been diagnosed with in situ melanoma.  Would like some help with my pathology please.  I have had a WLE.  It says the following:

Excision Margins 3mm from 12 oclock 3.2 from 6 oclock.  

Ulceration - Absent

Pigmentation - present

Mitotic n/a

Lymp invasion n/a

Distribution Focal

Density Sparse

Regression - Not identified

Assoc benign naevus

growth - nested, lentiginous and pagetoid

subtype superficial spreading

Excision of scar appears complete.

Sections show skin excision with biopsy site changes.  There is residual atypical melanocytic proliferation along the dermoepidermal junction exhibiting nested, lentiginous and focally pagetoid growth pattersn and comprising highly atypical melanocytes with focal pigmentation.  No invasion is identified.  The features are those of insitu malignancy melanoma of superfical spreading subtype.  No evidence ulceration.

My questions are the surgeon was taking 5mm but in the end it was 3.00 than 3.2 which he said was due to shrinkage.  Is this common?  And he said all margins clear all good and I would not need anymore taken.  He also said the border was mostly a-typical cells?  The lesion was taken from the side of my face in front of my ear. Thanks 

 


Login or register to post replies.

llchelseall's picture
Replies 10
Last reply 4/2/2018 - 8:05pm

My brother Jered is a Stage lV Melanoma patient in ICU sedated, with a trach on a vent. Because he is BRAF positive he is eligible to take Vemurafenib, which cannot be crushed and is acid dissolving/activated. His oncologist has not received any confirmation that this treatment can be administered successfully without being swallowed. Any ideas or insights on a patient taking a pill like this any other way than swallowing and it be effective?

Login or register to post replies.

dbJoe's picture
Replies 6
Last reply 4/2/2018 - 6:55pm

Hey folks.

First off, let me say this board is tremendous. My doctors (not my surgeon), my wife, and friends seem to think I am knowledgeable regarding my disease, but the regulars here make me feel as if I'm in high school. Back when those in high school didn't have all the answers.

My older brother was diagnosed 2010 MUP. Mets to lung and gut. He was unable to tolerate Ipi after his second(!) HD IL-2, and sadly passed in 2013. In my ignorance I didn't pay enough attention.

I was diagnosed in January 2015, MUP. Mets in left supraclavicular and axillary nodes, which were removed in February. BRAF-. April through June I did Ipi, 4 infusions 3mg/kg every 3 weeks. Moderate AE's, mainly elevated ALT and rash. No tumor burden to observe.

All subsequent scans have been negative (positive for me!) except for one or two sub-centimeter pulmonary nodules that were of the 'now you see um, now you don't' variety. Hunky dory, right?

Now I read that OS and PFS stats are twice as high for those that caught the next train (PD-1, my plan 'B') ahead of Ipi. I've also learned I'm approaching the 3-year 'end of the tail' for ORR. I believe I am more anxious at this stage than I've been at any other. I know I should be shouting out I'm 'cancer free', but between you and me, I no longer make purchases based on length of warranty.

So, is there anybody out there with these circumstances? I got 3, Naturally I'm looking for a pen pal going on 20..

Thanx for being here, everyone.

Joe

Login or register to post replies.

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!

 

Login or register to post replies.

Pages