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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mayeast's picture
Replies 2
Last reply 2/28/2011 - 10:07pm
Replies by: mayeast, MichaelFL

I have been waiting 2 weeks for results. Is this normal? I am anxious to start a clincical trial because I am now stage 4 with METs. Thanks.

Stay in the moment.

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carol b's picture
Replies 5
Last reply 3/2/2011 - 11:01am

well ill be back at vandy in the morning at 8:20 for round 2. im so dreading it. i still havent gotten rid of the itchies yet from round 1.any ways, im mostly out of it while im there so im sending u all a bunch of prayers at one time tonite. Take care all.

carol bellinger

Believe all thing are possible, believe faith can move mountains, believe in the healing power of prayer and never ever give up on your dreams

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ValJaneMB's picture
Replies 15
Last reply 3/3/2011 - 8:21am

Hi everyone, i am in Pittsburgh and just finished round 1 of IL-2 at UPMC. I am being treated by Dr. Kirkwood. Right now i look like the Michelin Tire man - with really bad acne. Day 3 into the treatment I developed all these white pustules (gross I know) all over my face, neck chest and shoulders. They then broke and began to bleed. Has any one experienced this? We are staying in town for two weeks before round 2 starts and I need to know if there is any way I can prepare my skin for the next round? All the staff at the hospital were great giving me benedryl, lotions, etc but not able to help me further. After the 2nd round is complete we will be flying back to Winnipeg Manitoba and I am not looking forward to flying in this condition. The fact that I gained 40 lbs of water weight that is slowly coming off doesn't help either. I am thinking of cabin pressure on the plane.

Are the symptoms during the rounds always the same? Hopefully not worse. By the way the IL-2 tip sheet posted by another of our forum members (sorry can't remember her name) was INVALUABLE. I would have been lost without it!

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RMcLegal's picture
Replies 5
Last reply 3/11/2011 - 7:55am
Replies by: RMcLegal, ShariC, Anonymous

I underwent biochemotherapy treatments at the University of Colorado Cancer Center in 2003, after receiving a Stage IIIc diagnosis (14 malignant nodes).  Today, I'm still above ground and healthy, showing no evident disease.  I've blogged about the lighter side of the journey at www.hotelmelanoma.blogspot.com.  Any other biochemo veterans out there?  Please share your stories.  Best wishes.  Rich McDonald

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Riluzole is drug that is used to treat ALS (Lou Gehrig's disease) and is now showing promise in treating melanoma.

http://www.medicalnewstoday.com/articles/156789.php

For info on a phase 1 trial see:

http://clinicaltrials.gov/ct2/show/NCT01303341

 

Frank

I urge everyone to thoroughly educate themselves about melanoma. No part of this post should be considered to constitute any form of medical advice. Please consult a competent oncologist. (I think that prayer can help in ways that we don't always expect).

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Hey All

Just wondering if anyone out there who is on a BRAF trial has any experience with bone mets and how the pain levels may have changed whilst on the trial? Craig has just started about 2 weeks ago, for a met in his rib and one in his abdomen. I know its early days, but he thinks the rib one may be feeling a bit more sore, so we were just wondering what to make of this and if anyone else has had similar experiences?

Thanks

Lisa - Aust

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emilypen's picture
Replies 1
Last reply 2/28/2011 - 11:35am
Replies by: King

Hi All,

So my husband had been responding really well to a combo study of Mek & pI3k inhibitors but after being taken off the drugs for 3 weeks to allow a rash to subside the tumour in his back has aggressively been growing and even being back on the drugs for 3 weeks has had no effect.

After an MRI on Friday they docs have determined he needs immeadiate surgery to stop the tumour from compromising his spinal cord. And most likely radiation. After that on to a new trial....

so onwards from here.....

 

Any advice appreciated.

thanks,

Em

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TLR's picture
Replies 6
Last reply 2/28/2011 - 5:51pm
Replies by: TLR, Joan C, Anonymous, lhaley

I was diagnosed with stage 1 one year ago (site was right back). Had wide excision, negative SN. Now ultrasound is showing enlarged lymph node in my left neck. Wouldn't this be an unlikely area considering my original location and stage? The doctor has me scheduled for a ct scan on Thursday.

Any insight would be appreciated.

Thanks,

Tracey

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NeilG's picture
Replies 3
Last reply 2/28/2011 - 2:10pm
Replies by: MichaelFL, Becky, Anonymous

I am about to start external radiation on my back for 4 weeks does anyone know the time frame of safe conception after this treatment?  My doctor has said to wait 2 months after treatment but i have also heard 1 year is appropriate.

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I am about to start external radiation on my back for 4 weeks does anyone know the time frame of safe conception after this treatment?  My doctor has said to wait 2 months after treatment but i have also heard 1 year is appropriate.

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Anonymous's picture
Anonymous
Replies 4
Last reply 2/27/2011 - 9:01am
Replies by: MichaelFL, lindas58, Janner

A person gets a biopsy & a pathologist report. In the report it state breslow depth, clarks level & wether its ulcerated. Surgery is done to remove the melanoma & more measurements are done which are smaller. My question is does a person add the two measurements together? Which one is accurate/

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Here is an interesting article about mebendazole, a commonly available anthelmintic drug. 

http://www.asco.org/ASCOv2/Meetings/Abstracts?&vmview=abst_detail_view&c...

For more info see: http://www.drugs.com/cons/mebendazole.html

 

Frank

I urge everyone to thoroughly educate themselves about melanoma. No part of this post should be considered to constitute any form of medical advice. Please consult a competent oncologist. (I think that prayer can help in ways that we don't always expect).

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After 3 months I failed the IPI. Most of my tumors have grown alot and 8 new ones have arrived. For me... The IPI was like feeding melanoma candy that it loved.

Dr Weber told me I have a couple of months to live if I do nothing. He reccommended sending me to get  Carbotaxol this week in Moffit while I am waiting for the processing for an appointment to MD Anderson in 2, 3 or 4 weeks if I am lucky.

Does anyone know if the Carbotaxol treatment would cause a delay in getting any kind of trial 1 treatment. I have heard of so many things that cause delays with trials........I don't want to agree when I should disagree.

Please help.

Rocky (Stage IV LIver Mets)

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Hi All!!

 

I have been battling stage IV melanoma and some how was lead to the biological medicine approach. It has been a great success and I am doing very well. My tumors are dissipating and I feel better than I ever had in my life.

I am now passionate about sharing my story. Follow my blog to hear more about my journey through not only healing my body one cell at a time but also learning a wealth of information about what does our bodies good (and what doesnt).

 

Happy Reading.

 

http://peacelovemelanoma.blogspot.com/ 

 

Please feel free to contact me at lmato17@gmail.com  or on Facebook at Lisa Amato Formato.

 

Peace & Love,

 

Lisa

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Hi All!!

 

I have been battling stage IV melanoma and some how was lead to the biological medicine approach. It has been a great success and I am doing very well. My tumors are dissipating and I feel better than I ever had in my life.

I am now passionate about sharing my story. Follow my blog to hear more about my journey through not only healing my body one cell at a time but also learning a wealth of information about what does our bodies good (and what doesnt).

 

Happy Reading.

 

http://peacelovemelanoma.blogspot.com/ 

 

Please feel free to contact me at lmato17@gmail.com  or on Facebook at Lisa Amato Formato.

 

Peace & Love,

 

Lisa

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