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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Here is a link that you can look up your doctor(s) to see how much Medicare paid.

 

http://projects.wsj.com/medicarebilling/

 

 

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I know what a horrible battle you all fight. It gave me so much strength when I would come here and read your stories. This board kept me from losing my mind while my husband battled a Stage 3C and then Stage 4 agressive Nodular Melanoma diagnosis and treatment. I was a 39 year old mom with two little daughters when this entered our lives.

There is hope. And there were always people who came back here and posted to give others hope. After diagnosis, 3 surgeries that included a massive facial skin graft and over 70 lymph nodes removed, radiation, a year of interferon and many years of monitoring and scans my husband is still alive. I now say he is "living with cancer"

It was scary to log in and see these postings again, and I often wonder if posting this is asking for trouble from the evil cancer demons. 

It is my deepest hope that you get through this too, and live....no thrive....after this nightmare. 

Much love and appreciation for all that post here. You saved me in my darkest hours. I hope I can give you a thread of hope this evening.

 

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casagrayson's picture
Replies 5
Last reply 4/9/2014 - 6:43pm

https://www.facebook.com/battlewithbethanycobb

Bethany Rene Cobb, child of the One True King and on loan to us from our Savior is now with her Father in Heaven who came to take her home at 3:15 pm, Tuesday April 8th, 2014. She went peacefully in the arms of Jesus with many loved ones around her.

Strength and Courage,

Susan

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jahendry12's picture
Replies 2
Last reply 4/8/2014 - 5:25pm
Replies by: POW, arthurjedi007

Haven't seen Jerry post in a while.  Hope you are doing well Jerry!

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DZnDef's picture
Replies 16
Last reply 4/11/2014 - 10:35pm
Replies by: kylez, DZnDef, Anonymous, tcell, Janner, Carole K

Has anyone on this board chosen the Alternative Treatment path with any success?  I was just diagnosed Stage IV (mets in lung) unknown primary.  I'd like to look into ALL treatment option including both traditional and alternative.  Just wondering if anyone on this board had tried something they'd recommend.

Thanks,

Maggie

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Anonymous's picture
Anonymous
Replies 9
Last reply 4/11/2014 - 5:38pm
Replies by: DZnDef, Anonymous, arthurjedi007

Hi all,

I have been diagnosed Stage IV melanoma, unknown primary (melanoma found in my lung).  Does anyone have a recommendation for a good "melanoma speicalist" in my area?  I live in Orange County, California (that's Southern California).  I am willing to travel if necessary, but given all the sunshine here, I would expect we would be crawling with melanoma specialists locally, no?

I asked my Thoracic Surgeon for a recommendation to a melanoma specialist and he referred me to Dr. Jakowatz of UCI Medical.  He is a surgical oncologist.  Is that the right "type" for me to see?  I have my first meeting with him tomorrow (Wednesday) but I have heard mixed reviews about him so I may want to keep looking.

Everyone on this board seems to stress the importance of finding a good "melanoma specialist".  I'm all ears for recommendations.

Thanks,

Maggie

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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 6
Last reply 4/10/2014 - 10:16pm
Replies by: Anonymous, hdevlin, NYKaren, melissa ann, arthurjedi007

I'm wondering if anyone has had any experience with severe itching after IL-2 treatment. It has been almost six weeks and my dad is not getting any relief.  Nothing has helped so far (gabepentin, Benedryl, cold compresses, etc...), it's maddening. Any suggestions?

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Anonymous's picture
Anonymous
Replies 3
Last reply 4/8/2014 - 9:01am
Replies by: Anonymous, Phil S

Can anyone answer this for me. I know that mucosal melanoma is rare. How rare is the BRAF wild type mutation?

 

Thanks.

 

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DZnDef's picture
Replies 7
Last reply 4/8/2014 - 5:58pm
Replies by: Anonymous, SoCalDave, DZnDef

Hi all - I was diagnosed with Stage IV Melanoma in the lung unknown primary on 3/11/14.  I was mis-diagnosed in July 2012 with a carcinoid of the lung which was removed 10/31/12 via lobectomy and declared cured.  Several follow-up x-rays were clear until 1/27/14 when two nodules on my left lung were found measuring 13mm and 6mm, respectively.  Lung needle biopsy came back as melanoma.  The 2012 nodule was re-tested and came back as melanoma.  So.... I have been Stage IV Melanoma for almost 2 years with no treatment other than surgical.

I am meeting for the first time with a surgical oncologist this Wednesday (Dr. Jakowatz at UCI Medical).  I expect he will recommend surgical removal of the two newer nodes but I am not sure I want to do that.  Recovery from the last lobectomy was brutal and how much of my lungs can I have removed and still breathe?  Also, since it is malignant, won't more nodules just keep showing up?

Has anyone on this thread taken an Alternative approach to their disease with any success?  Drugs that stimulate the immune system scare me because I am currently deaf due to an over-active immune system. In other words, my immune system is very stupid and attacks healthy cells and ignores cancer cells.  Super-charging it, who knows what it would attack.

Just curious if anyone has pursued Alternative treatment.

Thanks,

Maggie

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joy_'s picture
Replies 3
Last reply 4/7/2014 - 10:47pm
Replies by: NYKaren, POW, BrianP

As some of you may remember, my husband was diagnosed with leptomeningeal disease in early Feb.  After only being given an option of WBR at Emory in ATL, we headed for MDA.  Just wanted to update to say that he has completed the induction period of intrathecal Il2 under Dr. Pappa's care.

He also has disease in body and brain mets so this is an uphill battle all the way, but he is a fighter with a great PMA!  Day before yesterday he had some speech problems, and they did an MRI a few days ahead of schedule.  Brain met near speech center has gotten a little bigger (but he hasn't received any tx for this yet other than starting dabrafenib yesterday.  MRI showed LMD pretty much unchanged which is GOOD!

He will now receive IT iL2 weekly.  Hopefully dabrafenib will help brain & body.  We will get evaluation this week with updated plan, and and still hoping for TILs therapy!

if anyone is interested in how his IL2 treatment went, I will be happy to share.  It was rough on him as far as toxicity goes with confusion and delusions but otherwise well tolerated.

wishing you all the best!

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