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
Replies 6
Last reply 7/22/2014 - 4:10am

Any suggestions?  Someone mentioned a favorite book of their's in the war against Melanoma in the past month or two.  I forgot to write down the title.  I already have some books and basically know how I should eat and live, but I'm always looking for more information/recipes, etc. 

What are your favorites?

Hoping for a cure! 

Terrie

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ScaredV's picture
Replies 7
Last reply 7/22/2014 - 3:32pm
Replies by: Thandster, ScaredV, vlmd1986, 5dives, Anonymous

Hello everyone,

My fiance and I will be meeting with a new surgeon/oncologist in two weeks to discuss him getting a SNB.  Unfortunately, this is happening after his WLE, which was done in April.  We are still hoping that this will give us some extra piece of mind and that it will come back negative.

I was wondering, what questions should we be asking at the consultation?

Are there any other tests we should be requesting at this point?

Also, how invasive is this type of surgery? His original lesion was on his jawline, so I am assuming the nodes will be taken from his neck... Is this correct?  How much time will he need to recover and return back to work?

Thank you so much, I dont know what I would do without this website. 

 

 

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Anonymous's picture
Replies 1
Last reply 7/22/2014 - 3:45pm
Replies by: Leslie'sHusband
Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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BrianP's picture
Replies 4
Last reply 7/23/2014 - 12:14am
Replies by: RJoeyB, BrianP

Live on line seminar today from 11:00 to 1:00 Eastern.  Topics include immunotherapies, targeted therapies, and emerging therapies.

Register Here:

http://www.omedlive.com/en_CA/br/melanoma/refcode=Elsevier-PracticeUpdate-Melanoma-072214%20

(form is for medical professionals but I answered as best I could as a patient and had no problems registering)

Advancing the Management of Patients with Metastatic Melanoma

Live! Complimentary, Online Continuing Medical Education

11:00 AM - 12:00 PM ET - The Evolving Role of Immunotherapy in Patients with Advanced Melanoma

Sapna Patel, MD, MD Anderson Cancer Center

Patrick Hwu, MD, MD Anderson Cancer Center

 

12:00 PM - 1:00 PM ET - Targeted Therapy in Melanoma

Michael A. Davies, MD, PhD, MD Anderson Cancer Center

Patrick Hwu, MD, MD Anderson Cancer Center

 

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ETF111's picture
Replies 42
Last reply 7/23/2014 - 2:36am

 

I am the 55 year proud father of two 38 day old twins (yes 38 DAYS old) and belive it or not, my first, but who is now so scared they will never know me. A few weeks ago, I got a spot on my lung detected in a routine Xray but a clean blood work run. A knot on my groin prompted a PET scan that showed "uptake" at two spots : my groin and one on my lung (there were two actually two spots or places in my lung but only one had "uptake"). They did an aspiration on my groin node last Thursday and got an oral report that it was melanoma while I was still on the table––. Having to wait for my doctors to say exactly what it is and stage, but everything I read says it will not only come back melanoma but Stage IV (because of nodes in two places  - no matter size or number of them) and my future is bleak. I've had no signs of symptoms other than a persistent cough for the last 3 months if I laugh hard. No night sweats, fatgue (still swim a half mile almost every other day) and no rapid weight loss (although, I will admit, since this news last week, I've lost 5 pounds but I hope it is due to stress - quite the appetite supressant ... as well as this eye sty I just got today).

I'm the typical fair skinned, bue eyed countless sunburned Florida kid all grown up. I survived Hodgkins 11 years ago (almost exactly 11 years ago) with chemo and radiation and never expected THIS news. I've had several melanomas on the skin but they always said they got them all and they weren't deep.

 

Anyone else have something like it and is my death as imminent as the studies say?

 

For the first time in my life I feel I've never had more to live for and never been so unsure of the future.

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JerryfromFauq's picture
Replies 1
Last reply 7/23/2014 - 6:52am
Replies by: theresar

Mucosal Melanoma: Durable Tumor Response Associated with Severe Hypothyroidism and Rhabdomyolysis
http://cancerimmunolres.aacrjournals.org/content/2/1/15.abstrac

To our kknowledge, this is the first case reported of a patient with advanced mucosal melanoma who responded to anti-PD1 therapy

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

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In order to know a very important question, if after Braf. Inh. people respond well to inmunotherapy would be very usefull that people who has been a complete responder to inmunotherapy (IPI OR PD1)  be here to make us know that is possible.

Thanks to all of you

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Anonymous's picture
Replies 2
Last reply 7/23/2014 - 5:02pm
Replies by: Bubbles, RJoeyB

Hi Everyone,

I hope there is someone out there who knows what this means.  My PET says there is decreased bone marrow activity and a trace of pleural effustion. This is in addivtion to tumor progression.   I've tried to google, but it's all too technical.  If anyone can shed some light on this, I would really appreciated it.  Thanks!

God bless to all!

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theresar's picture
Replies 15
Last reply 7/23/2014 - 6:58pm
Replies by: CHD, theresar, Anonymous, mary1233, JerryfromFauq, Phil S, Teochasse, Becky

This is my first post here and it is amazing and so supportive to read and hear others experiences and know that I really am not alone in this battle that I am facing.

I was diagnosed with vulvar melanoma almost 3 years ago had extensive surgical excision with "clean margins and negative lymph nodes". This past May I developed a fever that lingered for 10 days and after finally seeing my MD a work-up ensued that revealed Metastatic lesions in my liver and lungs. I will begin Yervoy treatments in 3 days. My tumor cells are "wild-type" not BRAF so my understanding is that the Meds to treat the BRAF type are not in the treatment plan at this time.

Wondering if there is anyone else out there being treated for the Mucosal type metastaic Melanoma and how it is going. Also wondering if others have been allowed by their oncologists to try adjunt therapies- specifically I'd like to try Essiac Tea. Will discuss with my oncologist this week.

My prayers go out to all of you. Thank you for your stories of HOPE.

Theresa

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Anonymous's picture
Anonymous
Replies 8
Last reply 7/23/2014 - 9:05pm
Replies by: drew5, Janner, Becky, Anonymous

My baby was just diagnosed with Spitzoid Melanoma on Wednesday. He is at the Huntsman Cancer Institute with Dr. Andtabackca. His surgery will be August 5th but on August 4th they will inject a radioactive dye into his tumor site on his back. They have not given a stage yet. Is that to be determined after the surgery? He had had the tumor for a year and half. The pediatrician thought it was a wart at first, but then it never went away. Any advice on what I should be doing to help my son. I don't want to reinvent the wheel, so any words of advice/encouragement will be gratefully welcomed!

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Velma Krumm my wife of 44 years died of melanoma. I want to thank all the people from MRF who post and read this site. I received advice several times on this site that was vital to my wife,s care ( thanks nykaren) . All who post and answer perform a vital service to all.  My wife and I were very fortunate to have a doctor in Boone, No who after removing her tumor and telling us she had stage four cancer to go to a melanoma specialist for treatment. We did that and in am sure because of her care at the university of Michigan she live a lot longer than initially thought.  So for all who read this please make sure you are seeing a melanoma specialist it could extend your life or pro idea cure. I know without a doubt Velma is in heaven and now NED.  All who post , read and answer keep up the good work.

    Daniel

 

 

Trust in God - Live one day at a time

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stampers's picture
Replies 4
Last reply 7/24/2014 - 1:56pm

I just had a mole shaved from my leg last week and then I got an email from lab stating that I need to see a dermatologist ASAP that I have superficial spreading melanoma.  I called my doctor and she referred me to a dermatologist but did not really give me much information.  I called the dermatologist office and she said he would explain everything on Monday when I get there and to be sure to have all my questions ready.  She said there was a chance I could need a plastic surgeon.  I asked her if I should be worried and she said that not too many of their patients ever need chemo but some do.  This is really all the information that I have received from the doctors or receptionist.  I have now been reading on this website and have been worrying ever since.  If anyone has any information that could help me until Monday, I would greatly appreciate.

Thank you.

 

Stampers

Stampers

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Anonymous's picture
Anonymous
Replies 3
Last reply 7/24/2014 - 2:00pm
Replies by: ltalley, BrianP, Anonymous

Hi just been diagnosed with sta lge 4 mm in spleen liver and brain. Just wondered who else stage 4 how long you been that way and What treatment you had
Thanks

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Anonymous's picture
Anonymous
Replies 1
Last reply 7/24/2014 - 3:25pm
Replies by: jualonso

Is there a washout period for Dabrafenib required before the start of antiPD1?  My hubs was supposed to start antiPD1, so he was taken offf Dabrafenib for a month long washout and almost immediately he started to feel sick, nauseous, tired.  Also, in 4 days, he started to feel some of his tumours starting to grow.  Dr. phoned a week later ( my husband was feeling progressively worse) and said it will be another month until hubs gets antiPD1, and when he heard my husband feels this's sick he recommended to go back on Dabrafenib until pd1 is available.  In two days his vomiting stopped, and  his tumours started shrinking again.  

It was shocking -to say the least- how fast everything changed.  I know it's a matter of time until he will get antiPD1. But now I'm really worried that his condition will deteriorate very rapid when he'll go off Dabrafenib in the washout so I'm wondering why a washout period and not take it  until the day before the first pd1 infusion.  Also, let's say, he's taking it without dr's knowledge, will this show up in blood tests?

we were aware how quick things may change when interrupting Dabrafenib, but to get this sick in a matter of days was shocking and eye opening.  And very scarry.

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jualonso's picture
Replies 3
Last reply 7/24/2014 - 3:59pm
Replies by: jualonso, leslieann79

Hi guys,

I have read in many places that is possible that fail in inhibitors could affect to response in inmunotheraphys, what is your opinion?

Did someone stop from inhibitors once he reduce tumors, go into inmunotheraphy and if failed, back again to braf/mek with succes?

 

Thanks to all of you.

All togheter we will beat the Beast

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