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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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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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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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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Terra's picture
Replies 7
Last reply 3/12/2011 - 3:04pm

we just received news that derek has mets in his liver, largest 1.3 cm, in his lung and one on his 6th rib that is 4.5 cm - we will discuss treatments in one week a Princess Margaret in TO - with this news and no trt or worse yet no trt that works how fast might this happen - please give me hard facts - he is trying to balance quality of life with treatment - I know he won't continue with trt after trt if 1 or 2 doesn't work and need to know e.g. for leave at work etc. - not making sense I know pls answer as you might be able to

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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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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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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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Newmom's picture
Replies 10
Last reply 3/12/2011 - 11:07am
Replies by: Newmom, alicia, lhaley, KellieSue, Anonymous

I had my 6-month ultrasound today - conclusions appear normal except the following: "Complex right ovarian follicle or cyst with an increased volume of free fluid in the pelvis.  The cyst may or may not be related to the cyst identified on prior study.  Advise a 2 month follow up examination for resolution".

Anyone know what the above means?  I am particular concerned on the "increased volume of free fluid in the pelvis" and the following for resoluation.  What do they mean?  Something bad was observed during the ultrasound?  I have made an appointment to speak with my doctor on this but just want to run this by everyone here first to get some sight.  Thanks.

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I was diagnosed in November of 2010 with a 6mm Melanoma on the inside left thigh.  Since then I have had the wide excision and sentinel node  biopsy in December 2010.  One of three nodes had microscopic cancer cells which prompted the superficial groin excision in February.  Thankfully all nodes were clear.  

 

So I still have three drains in and will likely not be ready for the next step until late April or May.  I am presuming it will be Interferon but since I am a 3A with the larger tumor , I am not sure.

 

Just looking for advice to boost immune system or what preparation I can do now while I am waiting for the next step to begin.

"Hope is the only antidote for fear" Lance Armstrong

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Anonymous's picture
Anonymous
Replies 8
Last reply 3/12/2011 - 12:54am

Hi All

I am interested in any feedback regarding the GSK BRAF/MEK combo trial. Anyone in this trial??? What are the side effects & how are you managing them?? Thanks so much for your feedback.

http://clinicaltrials.gov/ct2/show/NCT01072175

 

Wishing everyone a lifetime of NED

Jan

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kbc123's picture
Replies 12
Last reply 3/11/2011 - 11:23pm

I am up in the air here wondering if I am not treating myself as I should.

My surgeon says watch and wait because it is so microscopic in my one node..  All the studying I do on here tells me I should be looking further into this.  My surgeon also said to me that technically, yes I am 3A but he doesnt put me in that category because of what they found in lymph node. To me?  It was still found there so I am 3A?

I was making my second opinion phone call today but I do hear that Sloan Kettering in NY will not even offer a treatment either?  Maybe I should make the appointment in NYU or Penn or whereever...this is so confusing.

Help !  And have a blessed day !

 

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heg50heg's picture
Replies 7
Last reply 3/11/2011 - 10:59pm

Interferon treatments to start on Monday. If anyone else is in this posistion, maybe we can share experience. Kind of afraid of the next month and then the second 11 month period as I am hearing many different stories on the side effects, but after talking with the melanoma team at St. James in Columbus Ohio I feel I really need to make it through for best chance of relapse. I will try and stay in touch

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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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Does anyone else know about chitosan being used to treat meelanoma successfully?  I just heard about it today and was told UCSF Mt. Zion Melanoma Center is selling it and the friend of the woman that told me about has had melanoma remission using it.  I am going to call UCSF Monday but in the meantime was hoping for some info.  Thanks.

Blessings, Shari

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