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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JerryfromFauq's picture
Replies 2
Last reply 10/15/2010 - 9:48pm

i have  posted an update on the off Topic Bulletion Board in response to the many requests for my status and updates from my great Melanoma Patients Information Page (MPIP) Family.  I love this group of caring, compassionate, and intelligent people that I have met during the last 4 years since finding the fabulous group Founded in 1996 by Jeff Paterson to honor his sister-in-law.

My update is under the JerryFauq post by JackieW.

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donswife's picture
Replies 6
Last reply 10/19/2010 - 5:28pm
Replies by: emilypen, donswife, Anonymous, Sherron

Hi.  I am a new user who has a friend who found this site extremely helpful and informative.  It has been recommended to my husband that he participate in a clinical trial with the drug mek kinase.  Does anyone have any experience with this?  We are in Canada.  

Thank you so much!

Never Give Up, Never Surrender

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Sherron's picture
Replies 6
Last reply 10/14/2010 - 10:01pm

Hi Linda - thinking of you today and wishing you the very best on your surgery tomorrow...Prayer & Hugs.

Take Care,

Sherron

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Jen07's picture
Replies 3
Last reply 10/13/2010 - 10:36pm
Replies by: Jaime.30, Anonymous, ChrisB

Hi everyone.  Its been so long since I have been on here.  I had to take a break from this site last year after Andy was done with his interferon.  I love all the support you get from everyone on here but its also sad b/c this disease is just so horrible and is so heart breaking.  Andy has recently had a constant headache that goes from dull to really hurting.  I don't want to say severe b/c it hasn't hurt so bad that he's been layed up in the bed all day from pain.  Anyway, he went to see his PCP for his and they did a CT scan which was negative.  They put him on a 10 day regiment of inflammatory and muscle relaxers which he said eased the pain some but never took it completely away.  He does have some days where the headache goes completely away but not for long.  Anyway, the headache has been going on for 7 weeks now and last week when we went for his 6 month follow up with his oncologist, they suggested he have a MRI done since the ct scan was without contrast and pretty much useless.  His Dr. said she didn't think it was melanoma related since he is showing no other signs such as numbness, slurring speech, visual problems, not being able to focus or keep track of thought.  He's just simply had a constant headache.  She seemed to think a constant migraine.  Either way, i am super worried.  We have been told twice now that he's had cancer and are only 2 1/2 years into remission.  He made it to 3 years last time before we found out it had come back. He's stage 3, btw.  What do you guys think?  Does anyone else suffer from this kind of headache? 

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lmato17's picture
Replies 14
Last reply 10/20/2010 - 5:50pm

I am being offered PLX4032 at Yale. Im not sure if I want to take the drug as I feel like it is a tease. All the research shows that the tumors start dissipating and then after months they come back with a vengeance. Has anyone taking this drug and had long term positive results? What are the side effects? Decisions decisions!! Im so sick of it. Any help would be greatly appreciated.

 

Lisa

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Janet2's picture
Replies 3
Last reply 10/13/2010 - 9:49pm

My first whole brain radiation and my subcutaneous tumour on a different machine is planned for tomorrow morning (stomach) and brain afternoon and my second session is Monday for both. I don't know how I will be after it, but keeping my fingers crossed.

Janet 

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sarahandkawika's picture
Replies 2
Last reply 10/13/2010 - 9:54am

Okay, I blew it and let the stupid Derm do a scrape biopsy on my arm. I won't bore you with details. But this spot is a dyspastic nevus. and of course there are leftover cells in my skin. So, this derm says let him remove all the cells (nope!). MY derm specialist says it is all up to me whether I do or don't, everyone has varied opinion...So I would have the surgeon who did my graft remove the rest if I do...but the question is do I ?

Any Opinions?

Thanks

Sarah, stage 3A NED 3 months

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emilypen's picture
Replies 4
Last reply 10/12/2010 - 8:31pm
Replies by: King, Brandi, lhaley, Fen

HI all,

My husband had a PET scan this morning as it's day 28 of the study he is participating in.

http://clinicaltrials.gov/ct2/show/NCT01155453

We just heard that all the previously existing lesions and tumours have up to 50% SUV reduction. The doctors are thrilled and so are we.

CT scan on Nov. 3rd will hopefully show shrinkage, but we know it's working. He's reduced his pain meds and is in no pain.

woohoo!

Finally something is going in the right direction. :-)

em

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Lori C's picture
Replies 4
Last reply 10/14/2010 - 11:40am
Replies by: Sherron, rj, Fen, Pat from Ohio

I want to thank the remarkable people - patients, caregivers, and everyone else - from this board for their unending support during the time Will was fighting this disease and now, for your overwhelming kindness to me. 

Having lived in Israel & Australia, where melanoma is epidemic, I long had a fear of this disease.  3 years ago, I lost one of my dearest friends to it, after a courageous 9 month battle during which the cancer responded to absolutely nothing.  As she was guardian to her brother's 3 children - he and his wife had been killed in a car accident a year before - this disease seemed to me a vicious, relentless thief.

Will, and his fight, became a part of me in a way that I guess only caregivers can quite understand.  No matter where I was or what I was doing, all of my love and attention really belonged to him.   Will's lifelong fight for autonomy and independence astonished me in it's focus, and he brought the same courage to the fight against this disease.  But he could not do the research, find the resources, and weigh the many variables needed to really battle this monster, and that is where you all provided the most invaluable help.  My only regret is that I didn't find this board far earlier, and that is a profound regret. 

Right now I am feeling, as Jung said, "a fatal resistence to life in this world."  I miss him too desperately to imagine getting through this day, let alone those which may come.  For anyone who didn't know Will, but might like to, here are two - very incomplete - pieces I wrote about him

 
 
I will keep checking this board because I care so about all of you and because I need to stay connected to you.   I owe all of you more than I could ever possibly repay.

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Has anybody heard from Kevin from Atlanta?  He used to be on here quite a bit.  I hope everything is ok.  If you read this Kevin please post and let us know how things are going.  I think you may be finished with the Ipi by now???

 

Linda/Kentucky

I can do ALL things through Christ who strengthens me! Phillipians 4:13

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Misty Dobson Duanes sister's picture
Replies 6
Last reply 10/13/2010 - 12:45am

Hi friends,

This bulletin board is all too familiar to me....I just lost my brother January 30,2010 after he fought Melanoma for almost 8 years. I found this bulletin board years ago and after my brother passed and I posted the news I did not return to the bulletin board because for many reasons related to grief and coping.I miss my brohter desperately and I was with him until after his last breath, I told him I would continue fighting Melanoma in his name and that I would tell people how amazing he was.....this is my Mission in life until the day I die I will fight Melanoma.

Now I need your help. I am putting together a presentation so that I can talk to school aged kids about Melanoma and hopefully prevent a Melanoma diagnosis. I need to put some stories together ..I especially need to accompany the stories with a picture of the person who has had Melanoma whether they are a survivor or since passed from this horrible cancer. I need these young people  to relate and the best way to do that is to put together something that will keep their attention....in particular younger people and people that as a young person did something they feel may have led to a Melanoma diagnosis.

Please contact me at mistydobson@gmail.com. I would love to share yours or your loved ones story with others so that we can make a positive impact and save lives with awareness..... Please help. I look forward to hearing from you.

Sincerely,

Misty Dobson

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I am starting the 2nd week of iv interferon.  I am stage 3a.  I was told I only need to do 30 days iv, but a friend that was also diaganosed stage 3a was told he must do the entire year of treatment.  What are your thoughts? 

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I am starting the 2nd week of iv interferon.  I am stage 3a.  I was told I only need to do 30 days iv, but a friend that was also diaganosed stage 3a was told he must do the entire year of treatment.  What are your thoughts? 

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ed_CT's picture
Replies 16
Last reply 1/14/2011 - 2:15pm

More good news to share with "the community".   Just had my latest CAT scans and I'm still NED now just over 5 years since going Stage IV, 6 years since initial diagnosis at Stage III.    A brief history-  Diagnosed with Melanoma on left ear  Sept 2004.  One sentinal node microscopic involvement.   Went on a Cancer Vax trial in Jan 2005.   Scans 6 months later showed it had spread to liver and neck.  Had tumor removed from Neck - left Mel in liver so I could do a trial.   Started trial of Nexavar and Temodar.   Also went on an almost Vegan diet (ate some fish) and started taking Tumeric supplements.   Within 4 months liver Met had shrunk to "scar tissue".  Stayed on drugs at full strength for 1 year.   After 1 year they reduced the Nexavar dose by 1/2 and kept Temodar the same.  Stayed on this regimen for another year and then dropped the Temodar (this ended my involvement in trial).   Stayed on the Nexavar alone (still 1/2 dose with lots of breaks - more as time wore on) until I finally ended it in Dec 2009.   I still take Tumeric but not as regularly as I probably should and I have started eating some meat, eggs - dairy in the last couple years  although I still eat lots of vegitables and drink soy milk and avoid meat most of the time thanks to a very good wife (I guess she still wants to keep me around).  Unfortunately from what I understand out of 146 people in my trial of Nexavar / Temodar,  I was the only one with a "complete response".  I'm sorry it didn't work out for more people. I'm a little disappointed that my Onc at Yale still thinks I should get scanned in six months but I guess caution is a good thing.   Maybe I can convince the people at U of Penn I see to let me go 9 months.  

Hope this post gives people here some  bit of inspiration.   There a quite a few of us "Stage IV" survivors lurking on this board.  

 

Best wishes

Ed from Connecticut ("Ed_CT" - formerly just "Ed" until they forced me to change it.)

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Charlie S's picture
Replies 11
Last reply 11/14/2010 - 6:18pm

Almost to this minute, four years ago is when my ear on your chest  heard your last and final physical heartbeat ..

Wherever you are, the beat goes on.

Smooch.

Charlie S

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