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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Hcates's picture
Replies 2
Last reply 3/28/2014 - 12:02am
Replies by: Jahendry12, vivian

Hi, 

I'm new here.  I just found out on Tuesday that a mole I had biopsied is melanoma.  It's .3mm deep so caught very early.  I attribute this to my great dermatologist and my annual mole scans.  I am a 11 year lymphoma survivor and am wondering, do I have a greater risk of melanoma infiltrating my lymph system than someone who has never had lymphoma?  I'm thinking more of in the future, if another spot turns up and is deeper.  I'm sorry if my terminology or understanding of this cancer is incorrect, I'm still reading up on it.

Thanks for any advice,

Heather

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Ashley's picture
Replies 13
Last reply 3/27/2014 - 10:37pm

My dad was just diagnosed with stage IV melanoma last week.  He collapsed at the grocery store and the ER did a brain scan and found 2 mets there.  He had stage 0 melanoma removed on his face in 2010, however they said they cleared the margins.  How does this happen?

Since being in the hospital they have found other spots on his lungs and liver as well.  He's having surgery tomorrow to remove the 4cm met in his brain and then radiation on the removed spot as well as the other spot starting next week.  He'll also be starting on Yervoy next week.  Does anyone have good experience with Yervoy with stage 4?

4 weeks post surgery I want him to go onto the expanded access trial for MK-3475.  Anyone with positive experience on that?

I'd appreciate any feedback or support.

Thanks,

Ashley

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Anonymous's picture
Anonymous
Replies 1
Last reply 3/27/2014 - 8:57pm
Replies by: JoshF

I have been hearing about about a complete response and partial response to ipi. Does complete response mean remission and is it forever?

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lanasri's picture
Replies 7
Last reply 3/27/2014 - 6:47pm
Replies by: Mat, Bubbles, POW, lanasri

Wondering if anyone here is enrolled in this trial for Medimmune PDL1 + MEK for BRAF negative folks (NCT02027961).
My son has been offered this trial while waiting to get the MK-3475, which his oncologist said would take 6-8 weeks to get.
Any information on results, side effects, etc is most welcome!

Thanks!
Lana
 

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Anonymous's picture
Anonymous
Replies 0

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bj63's picture
Replies 2
Last reply 3/27/2014 - 1:41pm
Replies by: bj63, Anonymous

From Wikipedia: Lhermitte's Sign, sometimes called the barber chair phenomenon, is an electrical sensation that runs down the back and into the limbs. In many patients, it is elicited by bending the head forward.

I started exhibiting this symptom (Lhermitte's Sign) about a month ago, pretty close to the three-month-mark after finishing the Whole Brain Radiation (WBR) treatment.  I began noticing it as I worked at my computer because I often bend my head and neck forward to look at the keyboard while practicing typing for the two-fingered.  When I look down, I get this tingling sensation running down my spine and arms.

So I told my oncologist and he set me up with an MRI on the cervical spine last week.  It showed no tumors or detectible lesions, so I'm hoping this might be a latent side-effect of the WBR.  I've read that it sometimes occurs with radiation treatment and when it does, it most likely happens at around three to four months after the treatment is done.

Has anybody else who has done WBR experienced this symptom?  Did it ever go away?  If so, how long did it take?

bj63

Sometimes no news is the best news!

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Anonymous's picture
Anonymous
Replies 12
Last reply 3/27/2014 - 11:23am
Replies by: Dave from Ormond, Ashley, POW, katie1, Bubbles, Anonymous

I have just found out that vem has stopped working and that I will either need to Move on to either pd1 or ipi. I currently have mets on liver spleen and brain and wondered if anyone had any success with either of these treatments treating brain mets.

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Scuba Doc's picture
Replies 1
Last reply 3/27/2014 - 11:21am
Replies by: arthurjedi007

Has anyone been admitted to the early access program' for Lambrolizumab yet? Also has anyone with multiple sclerosis been accepted for the drug Lambrolizumab via. their oncologist thru the EAPand if so ---where are you located?---Thanks for any info!

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jyoakum's picture
Replies 4
Last reply 3/27/2014 - 8:46am

I have had two melanoma moles removed and lymph node axilliary dissection on the same side with one positive melanoma lymph node out of the 14 removed. I was satisfied with the "catch 'em and cut 'em" method but my oncologist wants me to look at clinical trials. Can anyone tell me of specific clinical trials they know of that have worked, what to avoid and any other specific advice? One of my big questions is: If my PET scan and brain MRI was clear, then the melanoma is microscopic at this point. How can we find something that can't be detected and when would we know when it was eradicated? I have no symptoms, just lots of scars and more to come (two more dysplastic coming off next week). Will the cure be worse than the disease? Is it worth it?

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Randy437's picture
Replies 11
Last reply 3/26/2014 - 8:01pm

I post this not due to my good fortune, but rather to share positive news - especially for Stage IV warriors.  My CT scan yesterday was negative as was a brain MRI several weeks ago.  I've now been NED for 4 1/2 years after having lesions removed from brain, each lung and small intestine.  I realize this could all change with he next scan, but the therapies that have become available while I've been NED give me great hope.  Fight on.

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mwcollins's picture
Replies 3
Last reply 3/26/2014 - 4:48pm
Replies by: mwcollins, Carole K, Anonymous

I saw this on Facebook and wanted to share here as well.  Lets spread the word for this little girl.  We all know the battle, and I can't even imagine being that young with this!

Megan

 

http://www.foxcarolina.com/story/25065275/nc-girl-battling-cancers-dying...

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Anonymous's picture
Anonymous
Replies 12
Last reply 3/26/2014 - 1:22pm
Replies by: Carole K, sweetaugust, buffcody, Anonymous, Hstevens0072, POW

My 62 year old mother was diagnosed with melanoma 6 years ago.  

The cancer was removed, and she was very pro-active with her regular followed screenings/checkups

Last week she was admitted to the hospital for severe back pain, and some large unexplained bruises. Through the various tests ran, we have found that the melanoma has metasticized on her liver and peppered her lungs.  

With all of the doctors tending to her, some are very positive and have actually encouraged me to come here and ask for help, while others are grave, and have given her a bleak prognosis.

I want to help my Mom.  

1.  I am not 100% confident in her oncologist.  Who are the best melanoma docs in South Florida that I can call for another opinion?

2.  What questions should I be asking her doctors?  

3.  What are the best medication/therapy options for a stage 4 patient?

We all thought that she had licked this thing years ago.  She is otherwise a healthy, active woman.

Thank you for taking the time to read this and help me.

 

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Leslie'sHusband's picture
Replies 12
Last reply 3/26/2014 - 12:06pm

Hello all,

My wife was just recently diagnosed with Melanoma.  She went to our GP back in late January for what we thought was a routine removal of two or three moles and ended up with one testing positive for melanoma.  The one that tested positive had grown significantly, and had started to itch.  We went to a surgeon to have the WLE and sentinel lymph node removal and biopsy.  The good news was that the margins on the WLE came back clear, but the lymph node tested positive.  We met with a surgical oncologist last week, and he recommended that the rest of the "upper level" lymph nodes be removed and biopsied.  A second oncologist that we met with today, who would be the one to provide the 'after surgery' treatment also recommended the same operation, so she's getting herself ready mentally for that.  We go back to the surgical oncologist on Tuesday to set up a time for the surgery, as well as talk about recovery time, etc.  The second oncologist has recommended that she have the high dosage interferon treatment once she is recovered from the lymph node surgery.  Everything is happening so fast that it's hard to wrap my head around it.

I have not done a whole lot of reading on interferon, so I'm not sure where to even begin asking questions...

 

David

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Replies by: POW, Germer, Kim K

Interesting!

 

http://www.dddmag.com/news/2014/03/new-cancer-drug-manipulates-signaling...
 

New Cancer Drug Manipulates Signaling, Energy Systems

Tue, 03/25/2014 - 1:59pm

A revolution in cancer treatment could soon be underway following a breakthrough that may lead to a dramatic improvement in cancer survival rates.

 
A new study at the University of Warwick, published in the journal Angewandte Chemie International Edition, has developed a new drug that can manipulate the body’s natural signaling and energy systems, allowing the body to attack and shut down cancerous cells.
 
Called ZL105, the drug is a compound based on the precious metal iridium. The study has found ZL105 could potentially replace currently used anticancer drugs, which become less effective over time, cause a wide-range of side-effects and damage healthy cells as well as cancerous.
 
Commenting on the breakthrough, University of Warwick researcher and study co-author Dr. Isolda Romero-Canelon, said: “The energy-producing machinery in cancer cells works to the limit as it attempts to keep up with quick proliferation and invasion. This makes cancer cells susceptible to minor changes in the cell ‘power-house’. Our drug pushes cancer cells over the limit causing them to slow and shut down, whilst normal cells can cope with its effects.”
 
Preliminary data indicate that the novel drug may be ten times more effective in treating ovarian, colon, melanoma, renal, and some breast cancers, according to data obtained by the U.S. National Cancer Institute. The researchers now aim to expand the study to cancers that are inherently resistant to existing drugs and to those which have developed resistance after a first round of chemotherapy treatments.
 
"Existing cancer treatments often become less effective after the first course, as cancer cells learn how they are being attacked. The drug we have developed is a catalyst and is active at low doses. It can attack cancer cells in multiple ways at the same time, so the cancer is less able to adapt to the treatment. This means the new drugs could be much more effective than existing treatments,” said study co-author, Professor Peter Sadler.  “Platinum-based drugs are used in nearly 50% of all chemotherapeutic regimens, exert their activity by damaging DNA and cannot select between cancerous and non-cancerous cells, leading to a wide-range of side-effects from renal failure to neurotoxicity, ototoxicity, nausea and vomiting."
 
He added: “In contrast, the new iridium-based drug is specifically designed not to attack DNA, but to have a novel mechanism of action, meaning that it could not only dramatically slow down and halt cancer growth, but also significantly reduce the side effects suffered by patients."
 
This research could also lead to substantial improvements in cancer survival rates. “Current statistics indicate that one in every three people will develop some kind of cancer during their life time, moreover approximately one woman dies of ovarian cancer every two hours in the UK, according to Cancer Research UK. It is clear that a new generation of drugs is necessary to save more lives and our research points to a highly effective way of defeating cancerous cells,” Romero-Canelon said.
 
Date: March 25, 2014

************************************************

I'm me, not a statistic. Praying to not be one for years yet.

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Anonymous's picture
Anonymous
Replies 4
Last reply 3/25/2014 - 9:48pm
Replies by: Socks, Maureen038, tschmith, Anonymous

3years ned after 2a just found liver met 2.5 cm on right lobe ,where is the best plave to be treated . can go anywhere in the world

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