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: JP.2000, _Paul_

Journey DX, a patient research company, is working with patient advocacy group Canadian Skin Patient Alliance (CSPA) on research to understand the potential impact of pembrolizumab on the patient experience.

The research will be used as part of the CSPA patient input submission, to advocate for provincial coverage of pembrolizumab in Canada, so that patients may have access to this drug without paying for it out-of-pocket.

We are conducting telephone interviews (30-45 minutes) with:

1) Individuals from Canada or the US who have been in a pembrolizumab trial

2) caregivers for individuals who have been in a pembrolizumab trial

Absolutely no names or identifying information will be reported.

A compensation of $50 will be provided to those who participate, in appreciation of their time.

If you would like to be involved or would simply like more information, please contact Dr. Jennifer Pereira, Research Director of Journey DX (jennifer.pereira@journeydx.com, 416-485-7387).

Thank you very much for your consideration.

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tony9511's picture
Replies 7
Last reply 3/27/2015 - 2:20pm

Hi I am one of the victims of this terrible disease.  I was diangonosed with Melanoma, hade local WLE Surgery, and less than a year later it came back and spread to the lymph nodes in my neck.  I know my survival rate is not good, especially with it coming back so soon.  I did the interferon for one year and it was pure hell on me.  A few months past my last injection of interferon, my body hurts just as bad in fact worse than my year on melanoma.  I have major pain in my bones and my joints.  My question is does anybody know or experienced this?  Thank you so much I anxiously await responses.  I am a 41 year old male.  Also does having it come back so quickly affect my survival rate?   Tony

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Replies by: Anonymous, vivian

Hello everyone,

I'm a 40 year old male with a family. I am considered high-risk (my father had stage i melanoma, I have well over 50 moles including atypical ones, dysplastic moles removed, fair-skinned, lots of exposure when I was young, etc.) I go to a derm every 6 months as it is, but I am very interested in getting mole mapping done. I have become consumed with the possibility/likelihood of melanoma in my life and want to be as pro-active as I possibly can.

 

Does anyone know of a mole mapper in the DC area?

 

Can I go to Cancer Centers (Washington Medical Center for example) for annual or semi-annual checkups, even if I have never had melanoma yet?

 

DO cancer centers offer mole mapping usually?

 

 

Thanks for any input. I greatly appreciate any help anyone can offer.

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BrianP's picture
Replies 1
Last reply 3/26/2015 - 9:19pm
Replies by: jahendry12

Thought this was kinda interesting and gives some more thoughts on why combo therapies will probably be the future for treatments.

 

http://www.npr.org/blogs/health/2015/03/23/394132747/why-the-war-on-canc...

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barbudo2005's picture
Replies 11
Last reply 3/26/2015 - 9:13pm
Replies by: Squash, barbudo2005, arthurjedi007, Anonymous

Is there a healthy way I can gain weight?

Squash - (2/28/2015 - 7:08pm)

You can eat all the food you like but if you have faulty protein metabolism which is common in cancer patients then you wont put on weight.

You need to start taking digestive enzymes e.g. porcine pancreatic enzymes and you need to take high doses of them.

I couldnt put on any weight after losing 10kgs and going from 84kgs to 73kgs. In the last three months without changing diet i have put back on 6kgs taking high doses of pancreatic enzymes. I take 60 a day. 10 caps 1 hour before meals and 10 caps in between meals.

 

Hi, Squash

I am on zelboraf for 12 months and I've lost 12 kilos. I went from 73 to 61, thats 1 kilo for month!!!!

I read your post and it make a lot of sense. If you read what is Zelboraf is B-Raf enzyme inhibitor  so I think it may inhibits all kinds of enzymes.

You say you take 10 caps. What does that mean in terms of units of lipase? For example, Creon 10000 has 10000 units of lipase.

Thank you!

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Medscape Medical News Oncology

Nick Mulcahy

March 24, 2015

Pembrolizumab (Keytruda, Merck) has bested ipilimumab (Yervoy, Bristol-Myers Squibb) in the treatment of advanced melanoma in a head-to-head clinical trial, according to an announcement today from Merck.

Pembrolizumab demonstrated a statistically significant and "clinically meaningful" improvement in overall and progression-free survival, compared with ipilimumab, the company reports.

The randomized phase 3 study, known as KEYNOTE-006, will be stopped early on the recommendation of an independent Data Monitoring Committee.

The complete data will be presented in the opening plenary session at the American Association of Cancer Research annual meeting in April.

Ipilimumab is currently the standard of care in the first-line treatment of advanced melanoma.

Pembrolizumab is already approved for use in patients with advanced or unresectable melanoma who are no longer responding to other drugs, including ipilimumab and BRAF inhibitors (in patients whose tumors expressBRAF V600). This indication received accelerated approval on the basis of tumor response rate and durability of response.

The new clinical trial pitted two different monoclonal antibody treatment strategies against one another; the programmed death (PD) inhibitor pembrolizumab was compared with the cytotoxic T-lymphocyte antigen 4 (CTLA-4)-blocking antibody ipilimumab.

Pembrolizumab is now the first anti-PD-1 therapy to demonstrate a survival advantage over the standard of care for the first-line treatment of advanced melanoma, according to Merck.

"Evidence from our clinical program for pembrolizumab will help to define the appropriate treatment of advanced melanoma," Roger Perlmutter, MD, PhD, president of Merck Research Laboratories, said in a press statement.

KEYNOTE-006 is a global open-label study of patients with unresectable stage III or IV advanced melanoma who have received no more than one previous systemic therapy.

In the three-group study, 834 patients were randomized to receive pembrolizumab 10 mg/kg every 3 weeks, pembrolizumab 10 mg/kg every 2 weeks, or four cycles of ipilimumab 3 mg/kg every 3 weeks.

 

The coprimary end points were progression-free survival and overall survival; secondary end points were overall response rate, duration of response, and safety, with an exploratory analysis for health-related quality of life.

At week 12 and every 6 weeks thereafter per RECIST 1.1, tumor response was assessed with an independent central blinded radiographic review and investigator-assessed immune-related response criteria.

 

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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Anonymous's picture
Anonymous
Replies 2
Last reply 3/26/2015 - 3:05pm
Replies by: Anonymous, Janner

Has anyone ever heard of this test?   Thoughts?  I'm currently 1b dx june 2014, although I try hard to put it out of my mind and know that my chances of never dealing with melanoma again are excellent.  It' lurks in the back of my mind, what if??   

 

http://skinmelanoma.com/know-your-risk/know-your-metastic-risk/

 

Know Your Metastatic Risk
An accurate prognosis can have significant impact on post-operative care

 

About 60,000 people are diagnosed each year with early stage, non-metastatic melanoma. Some of them will go on to develop aggressive metastatic disease. In fact, according to the American Cancer Society, 3% of Stage IA, and 9% of IB tumors will turn deadly within 5 years. In addition, 19% of Stage IIA, 30% of IIB, and 47% of IIC melanomas will likely prove fatal over a 5-year period.

The DecisionDx-Melanoma™ test is designed to identify the Stage I and II patients whose tumor biology suggests they are at higher or lower risk of metastasis than their stage might indicate. The test uses sophisticated technology to measure the “expression” or activity of specific genes known to play a role in metastasis, and classifies tumors as either Class 1, with a 3% chance of spreading within 5 years, or Class 2, with a 69% risk of metastasis.

Gene testing is an advance made possible by breakthroughs in genomic, or personalized, medicine. While staging categories (I-IV) are based on the outcomes of large groups of patients whose cancer shared similar characteristics (tumor thickness, mitotic rate, ulceration, presence in the lymph nodes, etc.), gene testing analyzes an individual’s own tumor tissue to estimate their metastatic risk. This “individualized” information, in combination with staging, can help doctors and early stage patients better determine how aggressively to monitor, and in some cases, treat their disease.

It’s important to talk to you doctor to decide if the gene test is right for you. To guide the discussion, download the “Talk to Your Doctor” guide.

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dmk252003's picture
Replies 5
Last reply 3/26/2015 - 6:06am

Sadly my mom past away on the 16th.

We are not sure if she passed away from misuse of Fentanyl patch or heart problems. We chose not to do an autopsy.

Please, if anyone here is using Fentanyl patch for pain, use with care.

May God be with all of you

Donna

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momof4boys's picture
Replies 10
Last reply 3/26/2015 - 12:08am

I have been coming to this site for about 7 months and have gotten tons of info. In fact because of what I learned on this site I decided to try the IPI/interferon trial. I had initially thought against it because of the 10 mg arm. I actually changed my mind at about 9 pm the night beforeiI was to go have my picc line put in and start interferon. I was fortunate enough to get the IPI 3 mg arm. With that being said, I have also noticed that most people with stage 3 progress to stage 4 eventually. Do those of you that have been a part of this for a long time agree with that? I know things have changed a lot in the last few years but I would just like you to share your knowledge. I was diagnosed by a pa in my local med center. I could tell she didn't look confident so I asked her nurse, I was her first at biopsying. Anyways 3.8 mm nodular melanoma on calf, not clean margins. Ulcerated. Mitotic greater than 1/mm2. Had clnd only the sentinel node was positive. How likely us it that I will advance at some point? Stage 3 b currently

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Ken Burns has a documentary film based on the book “Cancer, The Emperor of All Maladies”

http://cancerfilms.org/

It will be on PBS March 30, 31 and April 1 at 8:00 pm (CT).

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MariaBailey's picture
Replies 6
Last reply 3/25/2015 - 1:14pm
Replies by: arthurjedi007, MariaBailey, mary1233, Anonymous

My Mom was diagnosed in October 2014 with Mucosal Melanoma of the Nasal Cavity. She had surgery to remove the small tumor, half her pallate, part of her cheek bone, half her jaw and her lymph nodes from her neck. Then had radiation 35 treatments. The doctor told her that he believes he got all of it but this is a very sneaky cancer. Well in December her side hurt and she had a x-ray. They found a mass on her bone. With a byopsy they found the mucosal melanoma spread. She does not have any of the protein variations so they have her on Yervoy. Has anyone had this and if so what other treatments are there? I have been doing research but it seems all the treatments that are working very well deal with the variation of the proteins (BRAF, NRAS, and Kit). This is making me nervous and I am trying to find out other treatments to help my mom live a long full life. Thank you

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mizmena's picture
Replies 7
Last reply 3/25/2015 - 9:38am

I am newly diagnosed and all this terminology is another language for me...please can anyone help me understand. I had a shave biopsy done of a growing mole on my chest thats what this path report is. Today i did another biopsy of my lymph node under my arm waiting on those results. My lymph node is indeed abnormal via ultrasound w/ a 5.8 cm mass.

 

 

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ms1mkg's picture
Replies 3
Last reply 3/25/2015 - 12:19am
Replies by: arthurjedi007, wgalvin

My brother has malignant  melanoma lesion in his sacrum affecting his nerves S1 and S2. He has an intrathecal pump implanted for pain control, although he still has significant pain and is unable to sit for more than a couple of minutes.  

I am inquiring as to whether anybody has had a tumor in this area, and if anybody has any information on a facet rhizotomy procedure to treat the nerves.

Any information is welcomed.

Mary Galvin

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AZ_Gal's picture
Replies 2
Last reply 3/24/2015 - 1:55pm
Replies by: Anonymous, ldub

I had my first primary removed august 5th 2013, and have been cancer free ever since. Supposed to have skin checks every 6 months, but I slack on them terribly. They kinda suck and are embarrasing, for me anyway...maybe it was just my dr.
Anyway, even though I slack on seeing the derm, my hubby checks my body for moles regularly.
Two nights ago he said the words I never wanted to hear...you have two new moles (near my original primary less than 6in away) and one looks asymmetrical and is two different colors. My kids are home on spring break for another week, but I'm going to try and get into the dr when they go back to school, but please tell me I'm panicking for no reason and that everything is fine. i know it may not be but I need reassuring words...this time is really bothering me, and has my stomach in knots.

Thanks guys.

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Anonymous's picture
Anonymous
Replies 2
Last reply 3/24/2015 - 1:15pm
Replies by: Kathy himes, dvd

Hi. My wife has started treatment and after one cycle her liver enzymes have shot up. Has anyone gone through this?. Thanks, Doug

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