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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Anonymous's picture
Anonymous
Replies 4
Last reply 4/17/2014 - 12:52pm
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The Independent ,

CHARLIE COOPER HEALTH REPORTER,

17 April 2014,
737 words,
English,
IND,
1,11,
© 2014. Independent Print Ltd. All Rights Reserved.

News | * Trials of revolutionary personalised drug treatments to begin this summer * Genetics-based approach will 'rewrite the rulebook', says head of Cancer Research UK ‘These treatment trials will rewrite the rulebook’

A "revolutionary" drugs super-trial aimed at discovering personalised treatments for the UK's biggest cancer killer is to get under way this summer, opening what experts have called a "new era" in the fight against the disease. Scientists will exploit a new understanding of the genetic properties of cancer tumours to help them identify drugs to be "targeted" at patients with specific variants of lung cancer, in an unprecedented partnership between researchers, the NHS and the pharmaceutical industry.

Scientists at Cancer Research UK, who have spearheaded the "genetic revolution" in cancer treatment, will be given access to the drugs libraries of the pharmaceutical giants AstraZeneca and Pfizer from July this year.

The trials, which will seek new treatments for patients at advanced stages of incurable lung cancer, are among the first of their kind in the world. Initially, they will test the effectiveness of 14 drugs against 21 genetic abnormalities identified in the tumours of several hundred people.

However, it is hoped that drugs which work against the different genetic varieties of every type of cancer may one day be discovered in this way. Professor Peter Johnson, chief clinician at Cancer Research UK, said the trials marked the beginning of "a very exciting time" in the fight against cancer. "We've been talking for a long while now about how the genetic revolution was going to impact cancer care and we’re really starting to bring these things together now.”

Over the past decade, new technologies have allowed scientists for the first time to perform detailed genetic analyses of cancer tumours, revealing the molecular changes that take place when healthy cells turn into cancer cells.

Scientists have identified a wide range of abnormalities, and cancers previously thought of as one condition have now been revealed to have particular genetic variants in different patients – opening up the potential for more targeted drug treatments, known as stratified medicines.

In the trials, small groups of patients will be identified who are likely to benefit from a certain drug. Up to 12 molecules developed by AstraZeneca will be included and two from Pfizer, but it is hoped that other pharmaceutical companies will open up their drugs libraries to cancer trials in the coming years.

Dr Harpal Kumar, Cancer Research UK’s chief executive, said the trials would “re-write the rulebook”.

“We’re talking about giving a number of options to patients who otherwise would have exhausted their treatment options,” he said. “[This] shifts the emphasis of designing a trial around a single drug to designing a trial that selects from a range of drugs, for a specific patient.”

Lung cancer is the biggest cancer killer in the UK for men and the second-biggest for women. There are 42,000 diagnoses and 35,000 deaths from the disease every year. Globally it kills 1.6 million people a year and while rates are declining in men, women have become more susceptible because of changes in patterns of smoking. Dr Kumar said survival rates for the disease had remained low, making it a good candidate for these first clinical applications of scientists’ new genetic understanding of cancer.

Menelas Pangalos, executive vice-president of innovative medicines and early development at AstraZeneca, said it was “not beyond the realms of possibility” that targeted cancer drugs could, within a decade, dramatically lengthen survival times for patients with certain types of tumour.

“One of the challenges we have is how to get these targeted molecules to the right patients in a cost-effective and time-effective way … [Over the next decade] we could start to offer patients a sequence of therapies that could prolong their life and make this more of a chronic illness, rather than an illness that is fatal within months,” he said.

Professor Johnson said analysing the “molecular landscape” of cancer patients’ tumours from the moment of diagnosis could become the norm, allowing doctors to prescribe treatments aimed at the specific genetic characteristics of their cancers.

Patients from 18 Cancer Research UK centres, attached to NHS hospitals, will take part in the initial trial, which has been hailed as “ground-breaking by the Health Secretary, Jeremy Hunt.

Independent Print Ltd.

 

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Ased's picture
Replies 7
Last reply 4/16/2014 - 8:51pm

Hello to all. My wife has been diagnosed with melanoma stage 4. Mass in esophagus and small spots in both lungs. She started on zelboraf last Monday. We are in Canada, so ipi is only available as second line treatment.  First few days she felt great, but yesterday she started to develop red painfull lumps on her legs and a few on her arms. I read the side effects and it is listed as a possible side effect, but it did say to contact physician immediately if it was present. It's Sunday so we can't call the oncologist until tomorrow about them. She is having a really hard time today as they are extremely painfull.

Has anyone else on zelboraf experienced this, and if so did the symptoms last or go away?

Thanks,

 

Ased

 

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Anonymous's picture
Anonymous
Replies 1
Last reply 4/16/2014 - 8:00pm
Replies by: Anonymous

I have been hearing bout how anti pd1 drug is meant to be so good for patients on terms of long term survival but is there anyone that is 5 to 10 years out?

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Chellmarie10's picture
Replies 6
Last reply 4/16/2014 - 5:35pm

My husband Keith, 39 yrs old was just diagnosed.  No ulceration, 3.5mm thickness and we are seeing the oncologist today for the consult to do the sentinel lymph node biopsy.  Scared out of my mind.  We haven't even been married for 2 full years yet.  Any advice, help or even experience would be appreciated.  I come from a medical background so I know quite a bit already. I realize the thicker it is the more chance for metastasis. 

Any advice on what questions to ask the surgical oncologist today?

 

Thanks

Michelle

Chellmarie10@gmail.com

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Anonymous's picture
Replies 1
Last reply 4/16/2014 - 3:36pm
Replies by: BrianP

"Currently, there is no useful laboratory test to monitor patients with early stage breast cancer who are doing well, but could have an asymptomatic recurrence,"

 

same with melanoma, maybe someday there will be a blood test for it too

 

http://www.scienceworldreport.com/articles/14021/20140415/blood-test-may-determine-return-of-breast-cancer.htm

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Anonymous's picture
Anonymous
Replies 4
Last reply 4/16/2014 - 4:21am

Hi All

I was just looking for some guidance and advice really so my story:

Notice a mole on my breast which started out like a pin head over space of 6 months had grown had ABCD features so went to GP.

First GP wasnt sure so went back to see GP who specialises in dermatolgy Christmas eve during the appointment he mentioned it looked like Melanoma there was a superimposed speckling of melanin on a network of blood vessels and I would need to see a specialist. 

I went in January to see specialist who looked at in a reviewed it and confirmed he wasnt overly concerned it looked in the normal range and said would review in 3 months but didnt think there was an issue.

Went to follow up last week to be told its grown and he walked me to book me in for surgey next tuesday cause of the way the appointment went with him taking me to book me I didnt have time to think or ask any questions.

I had been suffering from headaches and got a rash in same area but didnt get chance to talk to him about or even mention it not sure do I wait till surgery or should I try and make contact.

At the surgery I dont know what to expect at all what do I need to wear? am I safe to drive? he is doing a shave on one on my neck as well. How long will I be in the appointment for? Am I ok to eat before hand?

I am staying positive at the moment at the moment as nothing has been confirmed but feels like a real rollercoaster of emotions christmas was so worried then in new year for three months no problem now back to worried.

Any advice or tips to try and keep it together would be much appreciated,

 

Ruth 26

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Anonymous's picture
Anonymous
Replies 1
Last reply 4/15/2014 - 9:40pm
Replies by: Anonymous

Once again Mollom has shut me out.  Tried to post recent melanoma related articles from e-alert of Journal of Investigative Dermatology.  There were quite a few, so I put them all in one post.  But it didn't go thru.  Tired of this.  What good does it do to then report it to Mollom?  Nothing ever comes of it.

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MattF's picture
Replies 4
Last reply 4/15/2014 - 6:40pm

I have not posted in a littel while so I wanted to just come in and say hello.

Been on the Combo since Dec 2013....so far so good. Next scans are first week of May.

I will say the combo seems to be doing great work and I really have had minimal side effects...although I did start getting a little down after the stage IV progression and I needed to let my oncologist know so he can address the issue.

other than that i seem to get a lot of gas and bloating from the combo and some constipation...I have had some combo constipation vomiting then diaharea....so far only a couple really bad episodes but each time i think the stomach shrinks and i lose some weight. 

Anyway...how is everyone else doing on it?

any issues with abdomen? constipation? diahrea? lack of appitite etc?

Matt

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Anonymous's picture
Anonymous
Replies 9
Last reply 4/15/2014 - 4:05pm

Hi 

Was wondering whether the stage v members of the group could answer me some question. 

1. How long have you been stage 4?

2. Where did metastics spread to  (dont have to answer if too personal)

3. What treatments have you been on and were they successful? especually interested to know about anyone on pd1. 

4. . have  you continued to feel well after you diagnosis - carry on working etc? 

Thanks 

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mosalazar's picture
Replies 2
Last reply 4/14/2014 - 8:53pm
Replies by: BrianP, Anonymous

Hi everyone...

My name is Maureen and I live in California I was originally Diagnosed with stage 1 MM with WLE. During my initial diagnosis and treatment I found this wonderful site and message board late 2006. I participated, posted and supported all of my melanoma friends for several years. Currently I read the email posts from the yahoo groups only.  I sure have missed keeping in touch and life kinda has kept on going.

As of the last year I have had increasing arm pain in the general area of where I had my WLE.  No burning but this general ache and muscle pain. It was just off and on and now its daily and nearly all the time. I went to see my Primary family doctor and I am waiting on having an MRI.

Have any of you on this board experienced this before and what kinda of testing did you do. What kind of physician should you see?

Any help or suggestions are much appreciated.

Maureen

Maureen

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scroggins's picture
Replies 4
Last reply 4/14/2014 - 6:27am
Replies by: scroggins, Janner, Anonymous

Hello everyone,

I just discovered this forum while searching for information about melanoma.  It's great to see such a supportive community, and I wish everyone the best with their fight.

I just had two suspicious moles excised and sent for biopsy, and I was hoping someone here could offer their opinion on my case, as it is slightly abnormal.  The condensed version is that I'm an American living in Oman, which is obviously a region where they aren't quite as familiar with melanoma as in the west.  As a result, it was a bit challenging to find a doctor who was semi-knowledgeable and knew the correct procedure to follow.

I first noticed changes in a mole on my shoulder about four weeks ago, but because of the lack of familiarity with the potential dangers of melanoma, it was not removed until today.  They removed a second mole at the same time which has also been changing (very slowly) for the last 4-5 months.  The biopsy results should be available after about ten days.

Given the significant wait between when I first noticed the changes and the excision, do you think it is okay to wait an additional ten days for the biopsy results without doing any further testing of any sort?  

Thank you in advance for sharing your thoughts!

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Nils's picture
Replies 4
Last reply 4/14/2014 - 2:20am
Replies by: Anonymous, Janner

Just had a suspicious mole/blemish removed Tuesday. Found out yesterday that it tested positive for melanoma. Have to go back and get it exited (which I think means completely removed) June 7th. I decided to look up melanoma this morning and am now freaked out. Us it OK to wait a month to get it exited (whatever that means)

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yazziemac's picture
Replies 2
Last reply 4/13/2014 - 10:27pm
Replies by: MattF, Jahendry12

Hello

My husband is currently undergoing 33 radiation treatments for Stage 3 melanoma in his neck.  His initial tumour was diagnosed last July and he had surgery to remove it.  It recurred in January and he had a radical neck dissection in mid-February, 2014.  Of the 26 lymph nodes that were removed, none were postive for melanoma.  We are still processing this situation emotionally and I am very thankful to have found this site.  The comments from those who are further along this path are very helpful.  We chose to do radiation because his margins in one area were not clear after the neck dissection.  The radiation treatment disqualified him from doing the clinical trial that was another option.  The third option would have been to follow the radiation with one year of Interferon Alpha, which we decided against.  My husband, Peter, has finished 13 out of the 33 radiation treatments so far.  He is very fatigued and his skin is quite burnt already.  His throat is so tender that he is very limited in what he can eat, and his appetite is small.  The symptoms will intensify over the next 4 weeks, which will be hard to see.  Hopefully the radiation will kill whatever cancer cells are left in his neck.  We live in Kitchener, Ontario, and he is being treated at Grand River Cancer Centre with Dr. Knight and Dr. Fortin.  We also had a second opinion from Dr. Hogg at Princess Margaret before making our treatment decision.  He is BRAF and NRAS negative.

Yasmin

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Rocco's picture
Replies 1
Last reply 4/13/2014 - 11:09am
Replies by: G-Samsa

Friend of mine notified me that their family member recently joined our ranks with advanced melanoma - brain and lung mets.  Mentioned that the individual is in the midst of a Phase I trial - Ipi and Whole Brain Radiation. I believe his Ohio based trial (at The James Cancer Center - part of OSU) is part of the National trial # NCT01703507.

Wondering if anyone out there has gone thru a trial with WB radiation and Ipi?  Any thoughts or experiences to share?

 

Thanks in advance - and hang in there everyone!

-Rocco

Stage IV since 2005, Ipi responder since 2009, NED

Luke 1:37

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