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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Julie Griffiths's picture
Replies 11
Last reply 6/1/2011 - 1:22am

I haven't been on the board for a LONG time --- I used to be julieincanada but I can't figure out how to sign in under that with the brand new site!!!

Briefly my husband Peter was dx Stage 3 in August 2001. He was given the very dismal px of the time and had a node dissectrion, another surgery for a regional recurrence, a year of IFN and radiation. The treatment took a huge toll on him and our family. Peter ( we think because of having IFN and radiation at the same time) had severe brain fog and was off work for 7 years ( unable to drive for 3). He still has peripheral neuropathy , some bone necrosis in his rib from the radiation, and scarring from the radiation.

BUT he is here to tell about it. Was it easy ....no way....

the reason I decided to reconnect was a result of a conversation I had with our daughter yesterday. She was dx with a Brain Tumour 18 months ago.. the short term is wait and see post surgery and the long term in not very promising ... she is 40. She has connected through a similar board for BT with a 16 year survivor ... how great is that! Then I was thinking that there are probably many out there - they just get on with their lives and the "Board" time dwindles.

Soooo there is a survivor in BC In Canada who is 9 years post dissection, IFN, radiation and more that one bump in the road. He has a life, he has seen two grandchildren born and he has been back working for 3 years. Are we terrified everytime he goes for his annual check - you have to believe it .... He recently qualified for life insurance!!!

Soooo have the faith, focus on the success stories and in your darkest moments ( you have to believe we have had many) remember there is hope.

Julie

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JerryfromFauq's picture
Replies 2
Last reply 5/31/2011 - 4:23pm

LONG and Interesting Article which will have running on-line updates.

http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0018257

Abstract:
While advanced melanoma remains one of the most challenging cancers, recent developments in our understanding of the molecular drivers of this disease have uncovered exciting opportunities to guide personalized therapeutic decisions. Genetic analyses of melanoma have uncovered several key molecular pathways that are involved in disease onset and progression, as well as prognosis. These advances now make it possible to create a “Molecular Disease Model” (MDM) for melanoma that classifies individual tumors into molecular subtypes (in contrast to traditional histological subtypes), with proposed treatment guidelines for each subtype including specific assays, drugs, and clinical trials. This paper describes such a Melanoma Molecular Disease Model reflecting the latest scientific, clinical, and technological advances.

I'm me, not a statistic. Praying to not be one for years yet.

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Replies by: boot2aboot, LynnLuc

Although melanoma vaccines sound good in theory, it looks like researchers still have a
lot of work to do. Here is an abstract of a review of the relevant clinical trials:
http://journals.lww.com/melanomaresearch/Abstract/2011/06000/Vaccine_therapy_for_metastatic_melanoma__.1.aspx

Frank from Australia

I urge everyone to thoroughly educate themselves about melanoma. No part of this post should be considered to constitute any form of medical advice. Please consult a competent oncologist. (I think that prayer can help in ways that we don't always expect).

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debandmike's picture
Replies 2
Last reply 5/31/2011 - 6:47pm

My husband, Mike is going to attempt to return to work tomorrow after 6 wks. off work and his first series of IL-2. He is still a bit under the weather but wants to try returning to work. He was wondering how long other patients took after IL-2 treatments to return to "normal?" He will have a scan on June 17th, results of scan June 21st and than more than likely back for another round of IL-2 in July.

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Replies by: miu2, NYKaren, boot2aboot, nicoli

Hi guys,

i will target my posting for those of you with hair loss and trying to figure out options...as i looked for something to slap on my head that was'nt

A ugly

B hot as heck

C affordable

i came across stuff that looked like i belonged in Iran...or looking like i was 80 years old...or looking like a bad biker chick...BUT

i found this really cool site (of course not in U.S.) that answers all of my problems with chemo cap...

it is made from a company called Buff

and they make a product called Buff UV visor evo2 which is way hip and cool...they make this visor in all kinds of combos, totally reversable, totally adjustable and wearing it doesn't make me feel like 'ugly victim'...it's great for UV protection and you can wear it when your hair grows back and still look hipcat...

http://www.buffwear.com/catalog/index.php/cPath/53_90

even though it's a UK company, you can still order from the states...i thought the melanoma website should maybe sell these here...

 

stay away from the pink ones...i opted for the black one...i thought that was 'appropriate'...

boots

don't back up, don't back down

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Anonymous's picture
Anonymous
Replies 5
Last reply 5/31/2011 - 9:37am

Has anyone had an issue with an increase in eye floaters with their diagnosis?  I've noticed an increase (or maybe they were there before and I didn't really concentrate on them like I do now?).  I have been to the eye doctor who said things look ok and brain MRI's say things are fine. 

Guess it's just another thing to stress us out!  :) 

Thanks!

www.melanomaandthecity.blogspot.com "people will forget what you said, people will forget what you did, but people will never forget how you made them feel' Maya Angelou

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Gene_S's picture
Replies 10
Last reply 4/18/2012 - 7:14am

 

Scientists reverse stance on sun and cancer: Now they admit sunlight can prevent skin cancer

Learn more: http://www.naturalnews.com/032533_sun_exposure_skin_cancer.html#ixzz1Nrwxbjb9

I am a firm believer in this. The only way to know your vitamin D levels is to have them tested.

The best test is the "25-hydroxy" vitamin D test.

Best wishes,

Gene

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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Hope Returning's picture
Replies 6
Last reply 7/27/2011 - 8:11am

Looking for an active kidney cancer discussion group for recommendation on kidney surgeon for a melanoma long term survivor withe tumore (met?) to kidney that needs to be operated.

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Gene_S's picture
Replies 5
Last reply 5/31/2011 - 12:33pm
Replies by: Gene_S, Anonymous, LynnLuc, boot2aboot

see:   http://naturalstandard.com/news/news200602007.asp

Please note that there is a difference in CoQ10 products.

The best one should have "Ubiquinol" on the label not "Ubiquinone".

Best wishes,

Gene

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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shellebrownies's picture
Replies 5
Last reply 5/31/2011 - 8:00am

Don had his chemo treatment yesterday afternoon/evening and he tolerated it extremely well. His liver function tests that Dr. Lawrence had ordered did show a drop in the high levels, but was not stable enough to earn him a reprieve on the trial, so they went ahead with the chemo.

His pain at this time is extremely well managed but is IV; the pain management team still have to figure out a way to get him this level of control with oral medications. Well, we take one step at a time, right? : )

Michelle, wife of Don, Stage IV

Gonna stand my ground, won't get turned around, And I'll keep this world from draggin' me down; Gonna stand my ground and I won't back down. ~Tom Petty

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Terra's picture
Replies 3
Last reply 5/30/2011 - 6:03pm

Does anyone have any comments or knowledge on TIL or IPIand brain mets. 

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sheri47's picture
Replies 6
Last reply 5/31/2011 - 7:34am

hi all got a ? my moms cancer is back this will be 4 times in the same foot.  they will want to amputate  but i think this will  kill my mom  , she has had a stroke that affected the right side the masses 3 of them r on the left, she has been getting blood transfusions for 2 years now 18 in all. fluid around her heart from cardiomyopothy.

 gues my ? is how long can she live doing nothing, we know its no\t in any major organs, not in bones or brain, thank you sheri from ohio

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hi all got a ? my moms cancer is back this will be 4 times in the same foot.  they will want to amputate  but i think this will  kill my mom  , she has had a stroke that affected the right side the masses 3 of them r on the left, she has been getting blood transfusions for 2 years now 18 in all. fluid around her heart from cardiomyopothy.

 gues my ? is how long can she live doing nothing, we know its no\t in any major organs, not in bones or brain, thank you sheri from ohio

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hi all got a ? my moms cancer is back this will be 4 times in the same foot.  they will want to amputate  but i think this will  kill my mom  , she has had a stroke that affected the right side the masses 3 of them r on the left, she has been getting blood transfusions for 2 years now 18 in all. fluid around her heart from cardiomyopothy.

 gues my ? is how long can she live doing nothing, we know its no\t in any major organs, not in bones or brain, thank you sheri from ohio

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hi all got a ? my moms cancer is back this will be 4 times in the same foot.  they will want to amputate  but i think this will  kill my mom  , she has had a stroke that affected the right side the masses 3 of them r on the left, she has been getting blood transfusions for 2 years now 18 in all. fluid around her heart from cardiomyopothy.

 gues my ? is how long can she live doing nothing, we know its no\t in any major organs, not in bones or brain, thank you sheri from ohio

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