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: miu2, NYKaren, boot2aboot, nicoli

Hi guys,

i will target my posting for those of you with hair loss and trying to figure out options...as i looked for something to slap on my head that was'nt

A ugly

B hot as heck

C affordable

i came across stuff that looked like i belonged in Iran...or looking like i was 80 years old...or looking like a bad biker chick...BUT

i found this really cool site (of course not in U.S.) that answers all of my problems with chemo cap...

it is made from a company called Buff

and they make a product called Buff UV visor evo2 which is way hip and cool...they make this visor in all kinds of combos, totally reversable, totally adjustable and wearing it doesn't make me feel like 'ugly victim'...it's great for UV protection and you can wear it when your hair grows back and still look hipcat...

http://www.buffwear.com/catalog/index.php/cPath/53_90

even though it's a UK company, you can still order from the states...i thought the melanoma website should maybe sell these here...

 

stay away from the pink ones...i opted for the black one...i thought that was 'appropriate'...

boots

don't back up, don't back down

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ncdaniel's picture
Replies 8
Last reply 7/25/2014 - 12:50am

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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casagrayson's picture
Replies 2
Last reply 7/25/2014 - 12:38am
Replies by: Swanee, vicuk

I'm worried.

Strength and Courage,

Susan

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Hi-

I had a melanoma on my thigh last year that was removed. It was also in the lymph nodes and I went back in for another surgery in Feb. to have the rest of the nodes taken out of my right groin.

On Monday I went for a check up and there is a hard lump near the area where I had the surgery. I am having an ultra sound needle biopsy on Friday. My surgeon said that it could be a seroma or the Melanoma has grown back. Has anyone else ever experienced this? I know that seromas are common but it's pretty hard.

 

Thank you!!!

 

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MattF's picture
Replies 3
Last reply 7/24/2014 - 6:56pm

quick question...

hey everyone...various bone mets....Spine (few spots), bilateral humerus and bilateral femurs, pubic bone hips etc.

currently in between Chemo Treatments

switching from BRAF Combo to Yervoy in the next week.

 

I have pain in hips and legs and understand that pain from 

Has anyone had physical pain on the skin over or above a bone met?

 

I mean the outside of my shoulder/arm is burning....in a very small spot. But it is intense.

please let me know

Matt

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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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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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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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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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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

Login or register to post replies.

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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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
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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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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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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