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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Melanoma Mom's picture
Replies 10
Last reply 3/15/2011 - 10:54am

Our son has his quarterly PET and CT scans tomorrow .... the first ones since his initial diagnosis and scans this past Fall. They are skipping the brain MRI this time. He is doing great - sailing through his third month of low-dose Interferon and having little/no side effects. He got straight A's at school this trimester and is currently taking Driver's Ed. 

Results on Wednesday. Please keep him in your thoughts and prayers!

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mom3girlsFL's picture
Replies 3
Last reply 3/14/2011 - 9:05pm
Replies by: BethA in VA, mayeast, lhaley

Had CT abdomen/pelvis and chest xray on Tues 3/8 (a week ago)...posted no news is good news...got tired (anxious) of waiting and called thurs aft and left voice mail-didn't want to have to wait through wknd...no call back.  Got brave and called today (okay, not too brave, called at 5:45) and left another voice mail.

Not to be a pest, only NED since november after groin dissection...what would you make of this???  I'm thinking "no news is good news", but I've also called -they know I'm nervous-and no one has called me back...

Thoughts?

Do not fear tomorrow, God is already there.

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LynnLuc's picture
Replies 1
Last reply 3/14/2011 - 5:49pm
Replies by: lhaley

Since I finished the basic part of my trial on March 2, 2011...I have the MRI of my brain, the CT of  my neck, chest, pelic etc, apheresis and blood work tomorrow....my first app't is at 715 AM and my last scan is at 630 PM...what a long day down in Tampa...

I am back to work and looking forward to only having booster infusions of the Anti-PD-1 every 3 months...hoping to remain NED and getting some energy back!

I won't see Dr Weber tomorrow so he will call me with the results on Thursday.

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then Thorocotomy...now "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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jag's picture
Replies 9
Last reply 3/15/2011 - 9:10am

If my scans in April are negative that is....NEM means no evidence of melanoma by the way, although I suppose NERD no evidence of recurrent disease (coined by Sharon in Reno) would be a more accurate description 

I am a very lucky man-never thought I would say that.  Reading my profile you will see that my last surgery where melanoma was detected was March 11 2008.  I have had 2 brain surgeries since-last one in September, but they have both been necrotic material secondary to radiation in my noggin-which can cause a dirty mind(that's my excuse anyway-I have less and less dirty thoughts as this material is removed).  My life is slowly coming back to normal(well maybe a new normal).  Despite all of the bumps in the road, (6 rounds of (hospitalized) biochemotherapy,4 rounds of interleukin 2(hospitalized), 2 skin surgeries, 2 lung surgeries, and 6 brain surgeries epilepsy and loss of driving privileges for 1 year) my life is coming back to the way it used to be, I have learned to walk on the I beams of a sky scraper and not look down-even with loss of feeling/function in my left leg from during one of my brain surgeries-still would probably have a hard time passing a DWI test sober .  

Good things have happened along the way too,got engaged on New Years Eve in Nantucket, got married, bought a house, worked in a lot of interesting places every NYC borough except Staten Island-not of my own but beats sitting at home watching Springer and Maury, started my own business with my wife doing mobile veterinary housecall work-We are in negotiations with a company to purchase a custom built mobile practice unit-beats working out of the back of your car.   We have traveled most of the United States-a giant cross country trip on our honeymoon-now just a few remaining national parks to go see, but we have seen all of the big ones that I know of, and just this weekend, 3 years to the day after my last brain tumor removal, Merry underwent embryo transfer (keeping fingers crossed and saying prayers hoping that it works)-I honestly think the thought of  being a dad is scarier then having melanoma.

I am thankful to:

God

my wife and family

my doctors

all of the people on this board that I have met over the years.

I wish all of the people struggling with this disease the best,  Hang in there, do your best, and keep on living.

God Bless

John

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Hello everyone,

I'm hoping everyone reading this is having better health & feeling well. I'm hoping also that someone might recommend a specialist that would know a lot about Stage IV melanoma in the NY/Long Island area. The doctors I'm taking my sister to are all associated with Winthrop Hospital. They may all be well qualified, but I'd like to try for someone who's main concern is melanoma that's progressed to lungs.

Thanks to everyone who's written to me. It seems there are some truly great people on this site.

Take care,

Tom Mennin

Always hoping for the best, Tom M

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MaryMary73's picture
Replies 3
Last reply 3/13/2011 - 10:00pm

Maybe I'm being paranoid but after being diagnosed with a thin tumour back in late 2010, I'm wondering if a beauty mark on my calf may be another melanoma. It's small and round but kinda dark but not black or blue...it's brown. It doesn't fit the ABCDE's of melanoma lesions but not all melanomas fit that mold.

Should I speed up my first appointment with my dermatologist or just see him in April like I am suppose to (which is the 6 month mark post-diagnosis)?

Also, what will the dermatologist do during that first follow up appointment? Will he look at my skin from head to toe?

The only real wisdom is knowing you know nothing -Socrates

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Lisa13's picture
Replies 3
Last reply 3/13/2011 - 5:27pm
Replies by: Erica A, Carver, RMcLegal

I've recently had a wide local excision as well as the superficial lymph nodes removed from my right groin. 1 has tested postive for cancer, 1 other was very enlarged since my immunity was fighting the cancer and I'm still awaiting the remainder of my pathology report. My melanoma is deep (at least 8mm). PET scans show NED, but I'm high risk for re-occrurance.  That being said, I'm researching high dose Interferon and clinical trials using ipillmumab and a vaccine hoping to keep this away for as long as possible.  I'm also meeting with a naturopath next week

Is there anyone whose had a deep melanoma and lymph node involvement who've done any of these treatments and feel it's been beneficial?  My oncologist doesn't think Interferon is worth the side effects for the low benefit it's claimed to have.  I have a 16 month old daughter, so I feel I need to do whatever I can do keep this away for as long as possible, or until a fabulous drug becomes available that gives Stage 3 a much better prognosis in life.

Thanks,

Lisa 

 

Many impossible things have been accomplished for those who refuse to quit

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Anonymous's picture
Anonymous
Replies 1
Last reply 3/12/2011 - 11:01pm
Replies by: aestep

My brother passed away from Melanoma in November, 2010.  One request he had was for me, his brother, to get involved with Melanoma Awareness and fund-raising if possible.  I've started a small awareness campaign and blog called "Black is the New Pink" (http://blackispink.blogspot.com) but I am having difficulty finding any fund-raising or awareness events in the Raleigh, NC area.  If anyone knows of something...a run, walk, auction or whatever, I'd love to know about it personally and mention it in my blog.

Thank you...

Black is the New Pink - Fight Melanoma

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Anonymous's picture
Anonymous
Replies 2
Last reply 3/13/2011 - 1:29pm

It loads, and loads, and loads, but no chat window.  Running win xp with chrome, IE9, Firefox, dual core processor pentium 4.  All my internet EXCEPT this chat room works fine.  Whassup?

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tricialeigh44's picture
Replies 6
Last reply 3/26/2011 - 10:55am

My mom has just got her results from her second round of IL2. Her tumors have again shrunk, so she will be heading back to Roswell Park for round 3 of IL2. I was just wondering from any NED patients, what happens next. After 3 rounds of IL2, do you go back yearly? What happens if the tumors grow again?

 

It is so hard not to focus on all the what ifs. I should and am eternally grateful that she is an IL2 responder. Her recent CT showed most of her tumors disappeared! This is FANTASTIC news. I will keep praying that the rest of the tumors disappear as well.

I have picked up tonnes of information regarding IL2 from Roswell park. I keep meaning to post it on this bulletin board for all those that are beginning this treatment. This disease is terrifying, so if I can help inform anyone about IL2, I will certainly do my best to pass on our experiences.

Can anyone tell me what happens next????

 

Thanks so much

Tricia

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MaryD's picture
Replies 18
Last reply 3/16/2011 - 8:21pm

I feel very fortunate to say that my latest CT scan was still clear - 2 1/2 years after the last reucrrence.   In January, it was my 10 year anniversary since the start of my journey with melanoma.   Since that time I've had 5 recurrences including the lung met in 2007 when I joined the Stage IV club.

Treatments have included 1 year of interferon, vaccine trial, radiation on the arm, Ipi, and in 2009, a 6 month course of pulsed IL-2. 

I have been very blessed to not only live with this disease with a decent quality of life, but also to have met amazing patients and health care professionals  who have touched my life.

I volunteer at a local Children's Hospital and for the past year I have have been visiting a little 2 year old girl with neuroblastoma.   She has been hospitalized for 2 years, been through everything imaginable , and yet perseveres every day.   She is a daily reminder of how precious life is and what it means to fight for it.

Know that there is hope!

Best wishes to all ..

Mary

 

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Replies by: adgesoph, NicOz

If anyone here is interested in reading it, there is a GSK melanoma trial for brain mets at clinicaltrials.gov/

 

http://clinicaltrials.gov/ct2/show/NCT01266967?term=melanoma+gsk+brain&rank=1

 

A Study of GSK2118436 in BRAF Mutatant Metastatic Melanoma to the Brain

 

Michael
This information is for general patient educational & information purposes only. It should not be used for diagnosing/treating a health problem or disease. If you have or suspect you may have a health problem, you should consult your healthcare provider.

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I have not heard anything back from my CT abdomen and pelvis nor my chest xray from Tues 3/8 yet.  I called Thurs afternoon and left a message and still did not receive a call back.  I am putting the "no news is good news" mantra to the test this weekend!  Clear scans would put me "officially" 6 mths NED from a radical groin dissection in september. 

So, doing a partial happy dance and hoping to shake my booty full force by next week!

Laurie

Do not fear tomorrow, God is already there.

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Ellen's Brother's picture
Replies 7
Last reply 3/13/2011 - 11:40pm

Hi, My sister has melanoma stage IV. It would be great if there were any support groups, people in the same boat that she (and me) could meet. We live in New Hyde Park, NY.  I'm also perplexed by our health system. My sister is on disability using Medicare. Getting appoints, treatments... everything is in slow motion, meanwhile her health declines by the day. I'm frustrated, disgusted, and worried. Any advice would be welcome. Right now my sister is being treated through Winthrop Hospital. The tumors on her lungs were discovered December. It's now March. It's like all her doctors have forgotten her.

 

Thanks all,

Tom Mennin

tomillustration@yahoo.com

Always hoping for the best, Tom M

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adgesoph's picture
Replies 13
Last reply 3/14/2011 - 4:34pm
Replies by: LynnLuc, Linda J, Anonymous, adgesoph, NicOz, KatyWI, Carmon in NM

 

Hi, I've posted here just a couple of times for my dad.  He has stage IV mel. - lung mets, and a couple tumors in his head and neck area.  This past week he has been at Vanderbilt getting ready to start the GSK Braf/Mek combo trial and passed all the screenings until they did a cat scan of his brain and found 2 small brain mets.  So now he's not eligible for this trial-talk about a major let down-we were all so excited he was going to start this medicine.  But Vandy does have the GSK Braf trial for brain mets and they are now trying to get him into this.  Is this the way to go or should he do gamma knife??  The brain mets have thrown a huge curve ball in everything because I thought I was up on my melanoma research but haven't looked into what's best for brain mets.  

My parents are still at Vandy waiting to here if my dad can get into this new trial (they live 12 hours away).  He's had radiation before for tumors in his head/neck area and it didn't work and he lost all of his hair in that area and still has big issues with dry mouth and not tasting things well.  So radiation isn't something my parents want to do again because it was a bunch of pain and trouble for nothing.  Is Gamma knife the same??  Any thoughts on this braf trial for brain mets?  I know it's new and has had some success but with only a small number of patients.  Also, anyone else have experience at Vandy?  So far my parents love it (doctors, staff just impressed in general), just wish they could start a trial.  

Thanks for any input you can give me.  I feel we really need to so something fast with this small brain mets!

 

Adrienne

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