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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Tim--MRF's picture
Replies 3
Last reply 6/27/2012 - 10:11pm

The news reported a few days ago that the the review panel for Britain's National Health Service have said that Zelboraf is too expensive and the long-term benefits are unclear, so they recommend the NHS not cover the drug.  This is devastating news for melanoma patients in Britain, and I believe we need to help reverse this recommendation.  My colleagues in the UK and Europe have asked for our help, and here is what they recommend:

If you are a melanoma patient or the family/friend of a patient in the UK, please submit a comment on this issue.

If you have taken Zelboraf--particularly if you are a long-term responder--please submit a comment even if you don't live in the UK.  Your story can have an impact.  

You can submit comments here:  http://guidance.nice.org.uk/TA/Wave27/5/Consultation/DraftGuidance

My personal feeling on this is driven by a few widely-reported facts:

--clinicians have a biomarker that predicts response

--response rates are high among those patients receiving the drug

--while the median duration of response is 6 to 7 months, those months tend to be characterized by high quality of life

--some patients have much longer responses

This seems like a strong case for approving the drug in the NHS.  

Tim--MRF

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awillett1991's picture
Replies 5
Last reply 6/28/2012 - 6:43am

I feel like the last unicorn being a BRAF V600D but I'm posting this in the hopes it can help someone else. I can't be the only one. Despite there being no data available on its efficacy, Dr Sosman believed that Zelboraf would work on my tumor. I started 4-17 and was on and off for the horrid rash, then joint pain. I also suffer through the other many nasty side effects like so many people. I have been steady on 3 pills 2 times a day for 9 weeks or so. In April I had a cardiac met measuring 24x25mm and yesterday It measured 18x16mm. It's working and we are rejoicing for however long it lasts.

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Iowa98's picture
Replies 3
Last reply 6/28/2012 - 8:21pm
Replies by: NYKaren, LynnLuc

Hello,

With my father coming off of some chemo treatments, he has been using steriods to bolster his energy level.  While not the prescribed usage, it has helped with his energy and overall emotional state.  However, he is now starting IPI / Yervoy and I've read that the use of steriods may impact the effectiveness of the treatment.  Has anyone heard or experienced this?

Thanks, what a journey......

Jessica

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bikerwife's picture
Replies 6
Last reply 6/27/2012 - 8:46pm

Lynn started taking his pills Monday not sure what to expect hoping for the best. I do know thems some big pills. Lynn is trying to stay out of the sun and I did go buy him a uv shirt to ride in not that we get to ride a lot but hoping he gets to feeling better soon.

He's lost so much weight really hoping he can gain some of it back.

Lynn has a lot of little tumors on his body a lot of them disappeared after ippi. Will zelobraf make them disappear.

Anyone that can give me some ideas of what to expect or things I can do to help him. It would be greatly appreciated. As allways love and pray s for you and your families.

Thanks Belva

What God leads u to he will. Lead you through

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Angelica Camargo's picture
Replies 8
Last reply 6/27/2012 - 11:15pm

Hello, 

 

My mom was diagnosed with Mucosal Melanoma March 2012. She already had surgery to remove the tumor (stage IV) and completed her Radiation treatment. She never felt sick and has had an amazing energy throughout all the past months. It is sacry to know that cancer can be so silent. To be honest, only reason we know she "had" (hopefully) cancer is because of the biopsy. Her scans came clean and we are so greatful and hopeful that she is truly clean. But of course we know that this melanoma cells are very sneaky and they can be small and hiding around the body. Our oncologyst 100% suggested "INTERFERON". We are not scare of the side effects but I would love to hear from people that has had or have this same type of cancer. It is so rare that it is so frustrating to hear from the Doctors "We just don't know"

 

Greatfully, 

 

Angelica (Gely's daughter)

BTW: Bastyr Clinc (Naturopathic University) has helped us so much make my mom's body so strong and healthy. I 100% recomment to complement any treatments with Viatmins, supplements and an extremly healthy food routine. 

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yoopergirl's picture
Replies 8
Last reply 6/26/2012 - 10:32pm

Tomorrow morning at 10:30 will have a punch biopsy on several of my melanoma's, then radiology at 1:45 for an ultra sound and then at 3 pm start the draining of the fluid around my lung and that will take until 5 pm. Hopefully that will help with my shortness of breath. One week after that will find out when I start my clinical trial. Getting anxious now.

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On Sunday, August 12th, lace up your sneakers and join the Melanoma Foundation of New England at the starting line for the 2012 New Balance Falmouth Road Race. You can help spread awareness and educate others in the fight against melanoma.

Runners have been raising funds and awareness for the Melanoma Foundation of New England since 2004. Running for Cover, the Foundation's running team, has been running Falmouth for the past four years. We aim to raise more than $15,000 this year! Runner will be required to raise a minimum of $1,000 to help us reach our goal.

If you, or someone you know, is interested in joining Running for Cover, please visit our website, apply online, or email jshea@mfne.org.

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Snickers60's picture
Replies 2
Last reply 6/25/2012 - 4:21pm
Replies by: Snickers60, Anonymous

Wayne and I have found www.houstongroundangels.org and they are FABULOUS !

It only cost a "THANK YOU" -  and they are precious people.    We used them the first time last trip and they were

very lovely, kind and TIMELY people.   Oh for Joy, as they celebrated with us over our good news.   (and they don't wear perfume,

colgone - big for us with the treatment and my chemical allergies)

The lady who picked us up had family who has had Melanoma.  Her husband had had it...MOLE  - and his sister had died of it,

so when we got the news, that Wayne was "NED" -  I called her.   I said, I know I'm not suppose to use your personal number but I had to tell you this in lieu

of your family's history !   She was soooo grateful I did and so happy for us, and said she would look for us on the board for the next time

we came to Houston to be our GROUND ANGEL.     She was a hoot and we laughed the entire trip........crying laughing that is.  What

great endorphins.   We really hit it off. 

We were paying around $70-80 for a round trip to MDA from Houston Hobby by cab - shuttle will cost you that too, and they are soooo rough

it will undo your spine.   Now it only cost a THANK YOU !    This amount really adds up when you know you will be going there once a

month for the rest of your life !

I hope and pray this blesses and helps someone.

Nancy (Devoted wife of #3 time Warrior Wayne)

Matt. 15:13 "Every plant that my Heavenly Father hath not planted shall be pulled up by the roots". "With God all things are possible" ! Keep the FAITH !

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Guten Tag's picture
Replies 13
Last reply 7/1/2012 - 2:55pm

I finally registred an account on melanoma.org and I thought I would say hello and give a quick update.  I've been NED since my last surgery and radiation treatment sometime in 2003.  For those of you who don't know, I was originally diagnosed as either Stage IIIC or Stage IV -- I had a total of 16 of 19 lymph nodes from my right axilla test positive for melanoma.  

I had  3 surgeries: a surgical biopsy, a WLE, and a final surgery (I had a recurrence about a year after original dx).  I did the high dose interferon for the first month, but did not do the 1 year long treatment.

I feel extremely fortunate to be alive and to also have a great quality of life.  Other than a few scars, I haven't had any complications, except that lymphedema in my right (also dominant) arm showed up last year -- over 7 years after final surgery and radiation.  It was a bit surprising, but I won't complain, given that I had a canteloupe sized mass removed on my 2nd surgery, plus radiation treatment, I was lucky to not have it right away.

I'm back in Austin, TX and a full time student at the University of Texas -- studying Psychology and Computer Science -- with about 1 year left.  I have a girlfriend of a little over 3 years now, who has a 9 year old daughter.  I adore them both.  I've also started a new company, Predictable Data, and it is going well.

OK, just wanted to say hello to old friend and give an update. 

-Dwayne

Be so good they can't ignore you. -Steve Martin

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Anonymous's picture
Replies 8
Last reply 6/25/2012 - 9:11am
Replies by: JerryfromFauq, Minnesota, Anonymous, Charlie S, Linny

A friend of mine just send me this information

New Report About Melanoma Statistics: “9 of 10 Melanoma Surgeries Not Necessary”

Is it really true? My wife has an ugly scar in her face after a surgery in a general clinic. Maybe she did a mistake not to get a second opinion from a specialized?

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MaryEllen's picture
Replies 1
Last reply 6/25/2012 - 12:21am
Replies by: Swanee

Hi everyone,

I would like to know if anyone has done IPI with an autoimmune disease and how you have made out. Still trying to sort out treatment options. I have very light MS and am not gene positive. Was headed for IL-2 but now doctor is looking at IPI with my neurologist.

Many thanks to all,

MaryEllen

 

PS Thanks Eileen L for your quick answer. What did your Dr think about IPI and MS?

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deardad's picture
Replies 2
Last reply 6/24/2012 - 10:08am
Replies by: Linny, Gene_S

Hi Ipi is no longer FDA approved in Australia which means we would have to pay a total of $120,000AUD for the treatment.

My dad has brain mets x 7, liver x 4, lung x 2, spleen x 3 and subcutaneous spots x 3. Over all they are all still small under 10mm I believe.

Does anyone recommend this drug? I know it won't cure him but a few on this board have had some success with it, what are your thoughts?

Thanks in advance.

Nahmi

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Origin adfAnyHere'dsf.......................................................
Anyone else see/hear about this?  Is this common practice at all school districts across the country? 

Students sunburned at school field day

Originally printed at http://www.kval.com/news/health/Students-sunburned-at-school-field-day-159782085.html

By Halley Griffin KOMO Communities reporter June 20, 2012

TACOMA, Wash. - Jesse Michener was horrified Tuesday evening when she returned home from work to find two of her three daughters severely sunburned after field day at Point Defiance Elementary School.

It was raining when the girls left for school Tuesday morning, but the sun came out midday and ended up burning Violet and Zoe so severely that their mother took them to Tacoma General Hospital that evening.

Tacoma Public Schools policy prohibits teachers from putting sunscreen on students. Students can apply their own, but are required to have a doctor's note authorizing them to use it.

District spokesman Dan Voelpel says the doctor's note policy is actually based on a statewide law, and is aimed at preventing kids from sharing sunscreen with someone who might have an allergy. He says there are many students in the district with allergies to common additives in sunscreens and lotions.

Parents are encouraged to apply sunscreen before sending their children to school, or dress them appropriately for sunny weather.

Michener takes full responsibility for her decision not to put sunscreen on the girls before they left the house, but says ultimately, that point is irrelevant. For the sunscreen to be effective, it would have had to be reapplied midday anyway.

Michener says she has trouble understanding why the adults who reportedly commented on her daughters' worsening burns didn't simply remove them from the sun and have them wait inside for field day to finish, or give Michener a call and ask her to stop by with sunscreen for her children.

"There's a break in common sense," she says. "If they were over a hive of bees, you would remove them from the problem."

One of her daughters has a documented type of albinism - and Michener says teachers and administrators at the school are well-aware of her sensitivity.

Today Violet and Zoe are home from school, with peeling faces, headaches and chills.

Michener spent her morning writing letters to the district and school board members asking for a more "parent-friendly" policy.

"I mean having a doctor's note, that's the most unintuitive policy I've ever heard of, and not only that, it's impractical," she said.

Depending on a family's medical coverage, that bottle of sunscreen could end up costing quite a bit.

Michener says she's spoken with other parents whose children were also burned during field day, and at least one told her that she was considering filing a complaint with the district.

She says she'd like the district to consider a policy change, enabling staff to make decisions in the best interest of their students, or consider allowing parents to sign some sort of waiver allowing staff to apply sunscreen to their children.

Voelpel says a change would require a district-wide policy change.

"In the end, this is not about a sunburn," Michener says. "It's about the administration's inability to act when a child is in danger." 

 

 

Luke 1:37

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Cooper's picture
Replies 3
Last reply 8/8/2014 - 1:28pm

I haven't seen his posts for a while and hope he's ok!

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momof2kids's picture
Replies 5
Last reply 7/16/2013 - 10:49pm

Anyone heard from Lisa13?  Haven't seen her post anywhere lately, hoping some things got taken care of with the brain tumors?!

Lisa if you're out there, or if anyone has talked to her, let us know!

 

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