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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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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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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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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Replies by: Janner

I had my initial wide excision 8 years ago in April. Then another one at MD Anderson Cancer Center a few months later. Every once in a while, it begins itching at that site, but rarely but this past several days it has been driving me nuts and in asking hubby what is going on back there (I can't see well in the mirror), he said there is a ridge of swelling and it is red (since I ask him every few minutes to scratch it, that may be the reason for the redness). However, the itching, day and night, is driving me crazy.

This is how I first found my initial melanoma lesion....it was either a mole I was unaware of or a mole that popped up at that site suddenly but it itched like mad. I spent a lot of time brushing against doorways to scratch for a while, until I finally went to the doctor for what turned out to be a cracked rib (from simply bending over to pick up purse) and had him look at my itching mole.The mole was removed  immediately and I got the word the next day that it was melanoma. It turned out to be deeper than thought and had spread to 5 nodes (three filled with melanoma and two with micromets). Thank God it was caught in time and I have the cracked rib to thank for that!  The rest is history. I went to MD Anderson Cancer Center where the metastasis was caught in time and I have been doing very well.

Okay, getting wordy here. My question is this:  Could this be MORE melanoma presenting at the scar site after all these years? Why would an old scar begin swelling and itching so badly? Anyone else have this happen?

Of interest is that I just had my scans and all a couple of weeks ago. Another year of being NED. I do have an appointment with a dermatologist at MDA in May to look at a site of interest on face (looks like age spot and likely is) and do an overall exam, and was told that this was the first available appointment. Should I call the Mel and Skin Center at MDA if this itching and swelling continues and see if I can get in on an emergency basis? Taking an antihistimine does not help with the itch and I hesitate to put anything on it. It is NOT a bug bite.

Any thoughts or advice will be greatly appreciated. By the way, I think I like the changes here on this site, but it took me by surprise. I opened a new account under GiniaJM but am formerly Jeannie in Texas, as my longtime friends here know me as. Hello all!

The heart often accepts what the head refuses to.

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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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