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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Shelby - MRF's picture
Replies 1
Last reply 4/18/2014 - 4:43pm
Replies by: Tina D

Dear MPIP Community,

We were recently contacted by Integrated Research and Data, a research company based out of Ft. Lauderdale, FL. They are currently searching for melanoma patients, diagnosed at different stages, to participate in an online survey. The goal of their research is to understand different aspects of patient needs and treatment plans. 

The first step would be a screening done by phone. Follow-ups would then be done to get the right amount of different types of patients. If you are selected to participate in the study, you will be given a $150 Visa prepaid debit card. The survey, if you are selected, is expected to take approximately 40 minutes of your time. The survey is encrypted to meet HIPAA compliance and particpants will not be contacted afterwards unless it is to confirm your mailing address to send your payment. 

If you are interested, please email MelanomaStudy@IntegratedResearchandData.com and you will be contacted to pick a time that is convenient for you to go through the 5 pre-screen questions. 

I hope everyone has a nice weekend!

Sincerely,

Shelby - MRF

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Anonymous's picture
Anonymous
Replies 0

For east coast there's now some listing.  On MIF's melanomaforum.org

 

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Shaggy 's picture
Replies 5
Last reply 4/18/2014 - 11:37am

Lets see how many of my old mates are still out there.Ive not been on here for about 2 years.SHAGGY...the Fireighter from England for thos of you that remember me.

 

Diagnosed with stage 3 MM in July 1995..nearly 19 years clear.im on facebook as well if you want to add me.Ian Mutch and my pic is me stood near my fire truck

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Anonymous's picture
Anonymous
Replies 3
Last reply 4/18/2014 - 11:08am
Replies by: kpcollins31, melissa ann, Anonymous

My husband had a melanoma mole removed over ten years ago before we even met,  and was fine ever since.  Last year he noticed a lump under his arm, had a ultrasound done and was told it looked benign. Now 7 months later, at the insistance of his dermatologist, he had it looked at again and asked for a biopsy.  They just told him today it is melanoma.  I am in shock.  we don't even know what stage yet, but since it was something he could feel and has been around since last year, that makes us feel worse about prognosis.  It would help if I heard from others who had been through somthing similar and had a positive outcome?  So sad today.

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5374brian's picture
Replies 7
Last reply 4/18/2014 - 7:59am

It has been several months since i was last looking over the boards and posting comments. We were scheduled to start a PD1 trial July 11 but that had to be canceled due to Keri getting DVT in left leg at 1 am that morning. Since then she has had surgery for the DVT against several doctors suggestions, After the surgery she did have a rough time and we went into hospoice care. Hospice worked with us on pain management for a few weeks and we thought she was climbing back up the hill. A few weeks later she was having sever pain attacks in the abdomen area. We went back into hospice for 10 days and on the 8th day she woke up feeling fine with no pain and a appetite. We have been back home since working on eating little meals each day and keeping pain under control. Her pain now is controled by a PCA pump. Today was a big day for us. Keri came out of Hospice care for a 3 rd time since her diagnosed Stage 4 in Dec 2012 and will be returning to Moffitt Sept 26 to get scans, tests, and a plan of treatment. She has been a miracle to all of us. She said 1 week again if i am going i want to go fighting. She is not 100% but she has been through 3 surgeries and told she wouldnt make it several times. I say all this to everyone so you can know not to every give up. She has been determined since the beginning to fight and now we are back again. I feel so blessed to have her in my life and cant wait for the doctors plans on Thursday. 

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Marianne quinn's picture
Replies 5
Last reply 4/17/2014 - 11:18pm

My husband was in the 10 mg. Ipi arm of the ipe vs. interferon trial. He did very well with the induction phase- being careful with his diet and a rash that is pretty easily controlled with Benadryl and lotion. He was 3C.

2 weeks after the induction phase, a CAT scan was done, then a PET.. It showed a 2 cm. nodule in the liver by his diaphgram.  We were devastated. A biopsy was done ( with difficulty) and it was positive.

Stereostatic radiation or ablation was offered. A very confusing story, but  another CAT scan for placement for stereosstatic radiation was done  2 weeks  later. and all the radiologist said was "very small, a blush. We elected to go with ablation for a variety of reasons. We are wanting another CAT scan before surgery as the radiation oncologist could not give us a dimension on the lesion. I don't know why as the lesion on the CAT scan and the biopsy done with CAT scan was very easily seen. This is upsetting.

My question is - has this happened to anyone? The oncologist says the ipi is obviously not working due to him being NED prior to entering the study .( December 31, 2013) I am not sure that is correct. We are seeomg  a general oncologist who we like very much but who admits she has little experience with ipi. I know that ipi can have a delayed reaction and can make a scan look horrible at first. The main concern seems ti be that he was NED prior to the study. He has been removed from the study.

If this lesion has disappeared, he wants to get back in the study. Is that possible?

Has anyone out there had good results with ablation?

Has anyone gone from NED to Stage 4 while on ipi? What happened to you?

I was so worried about the 10 mg ipi side effects etc. It never crossed my mind that a lesion would show up right after he reached therapeutic levels . This sucks.

Any info will be greatly appreciated. We will probably ask for a consult with a melanoma specialist after the surgery. We would have asked for one earlier, but things were going so well there did not seem to be a need.

Thanks.

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jswce77's picture
Replies 8
Last reply 4/17/2014 - 8:45pm
Replies by: jazzygal, tickyloo, Janner, dellriol, jswce77, Anonymous

My husband was recently diagnosed with an amelanotic T1b melanoma on his face. He is having it excised as well as a SLNB this week. Our doctor is hesitant to perform any scans. From what I've read, melanoma is unpredictable. We have young children and I want to error on the side of caution. Should I push for a scan of some sort? Is it typical for a T1b patient to get a scan or chest x-ray? Any advice would be greatly appreciated. Thank you. 

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MixtaJones's picture
Replies 11
Last reply 4/17/2014 - 5:15pm

Hello,

I am new to the world of melanoma and was only diagnosed with Melanoma 2 weeks ago. I just found out today I am most likely stage 4. I just met with a oncolgist today and will meet with radiation oncolgist tomorrow. Although I have full intention of giving this cancer hell and not giving in to it I am freaking out a bit. I feel the more research I do the less I feel I have a chance to survive. I had a ALND done and 24 nodes removed but they could not get them all. Everything I read says the drugs help people survive 10 months longer. That concerns me a ton.

I am hoping I can find some hope and guidence on this forum. I have tried reading some post but I have no clue what the lingo is. I feel like I am learning to text all over. what do "met" and "NED" mean? Are there any other terms I need to know?

Hope you all are winning your battles!

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Anonymous's picture
Anonymous
Replies 3
Last reply 4/17/2014 - 4:55pm
Replies by: 5374brian, Tina D, BrianP

I finished ipi last year and showed a major decrease in tumor size. Then in Feb...scan showed NED. In the meantime most of the side effects...itchiness, fatigue is gone...thyroid issue is still there. Would this mean that the drug has stopped working? I know it sounds silly but we all know the crazy thoughts that run through our head.

Let's work for better treatments....for a cure!!!!

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Replies by: Anonymous, Gene_S, Kim K
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 4
Last reply 4/17/2014 - 12:52pm
Replies by: Anonymous

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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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jend33's picture
Replies 6
Last reply 4/16/2014 - 10:24pm

Hi, im new to this site and my husband is starting to treatment but i always say we. He is my best friend and husband we have been together since I was 18 , that was 23 years ago. still the love of my life and I cant fix this one and it is killing me. i was with him the first time they removed the melanoma 15 yrs ago. i have gone threw everything with him with the MS. it really had its ups and downs but this again after 13 years of doing pet scans every year always clean, for the dr to say man i think you beat this we dont have to do them every year we can go every 2 . well let me tell you go every year PLEASE. He is stage 4 with them all over abdomen area one very large and other scattered threw out,  the brain they said way to many to count.we did whole head radiation it helped shrink the swelling and some of the lesions, he also has lesions from the ms in the brain and spinal cord. he was on rebif for a few yearsbut it made him feel worse so we made a deciosson together to give it a year with out the rebif , he did so much better was a ble to truly live without always feeling like you have the flu. didnt get anymore lesions while off it (yea). but now we are both scaredof what can come as side effects of the yervoy, but it is worth the risk. we already did the zelboraf first because tumor was so big and extremly painful in his abdomen. my poor baby is use to pain from the MS but good grief the zelboraf was a miricle drug worked great for 4 close to 5 month and stopped working . most lesions in brain gone only few left but there is a new one now and everything that went away from zelboraf is back full force in abdomen. my baby was a strong man this has kicked his azz. lost so much weight he can barely eat, and can ensure be any more expensive? sorry im rambling im not sure if this is even making sence my eyes keep tearing up as i write this . I am just praying that it works I cant loose him any time soon we were supose to grow old together. we are blessed to have three great children and other family who supports him.Has any one else with MS complete yervoy. and if so what wee the side effects i know everyone will be diff. we really are waiting for the pd-1 come on FDA. thanks for letting me ramble dont have anyone else totalk to about this thats going threw the same thing. we will keep fighting,

Jennifer Danko

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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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