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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Just checking to see if anyone has heard how the little girl Kadynce's check up went?  I did check her caringbridge site but there wasn't an update.  Thanks!

You don't know what your future holds but you know who holds your future!

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ValinMtl's picture
Replies 1
Last reply 8/1/2010 - 9:01pm
Replies by: Alicia15

I am beginning to like the new BB but would really like to see a few additions..the ability to click to left of board and go straight back to bulletin board after reading.  Would like to see longer pages...too few reads per the page, hate having to click to the next and then the next...would it be possible to lengthen taking out the info at bottom of page "Learn More"...isn't it up at the top already?  Val

Live Laugh Love Nothing is worth more than this day!

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I am beginning to like the new BB but would really like to see a few additions..the ability to click to left of board and go straight back to bulletin board after reading.  Would like to see longer pages...too few reads per the page, hate having to click to the next and then the next...would it be possible to lengthen taking out the info at bottom of page "Learn More"...isn't it up at the top already?  Val

Live Laugh Love Nothing is worth more than this day!

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Anonymous's picture
Anonymous
Replies 2
Last reply 8/1/2010 - 11:42am
Replies by: ValinMtl, Anonymous

I am trying to get used to the new board format....not too crazy about it as some things are not working. The Expand All option doesn't work and closes  my browser - Explorer 8.0.

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ipi in DC's picture
Replies 12
Last reply 8/15/2010 - 10:23pm

Hey everyone,

I went for two month scans last week at MD and was upstaged to stage 4. Dr Bedekian gave me my options and I am going for the IPI and Temador they have started. Luckily my insurance is paying for it with a $100 copay on the Temador. I will have a IV for 90 minutes for the IPI and take the Temador one pill a day for four days at home. And repeat every three weeks. They will do scans at six weeks (two doses) to see if it is working and to go further or stop if no responce. 

I would love any thoughts, concerns or advice for these drugs and their side effects.

Thank You,

David

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Everymoment's picture
Replies 11
Last reply 8/16/2010 - 11:35pm

Hi,

As you all know, I have had four melanomas and a SNB, all clear and still stage 1. I was a pretty balanced person before this, no pills or alchohol or really anything. All my friends used to joke that I was "naturally high." Since my last melanoma over a year ago, things have started to change. Not only I am on Cymbalta, at a high dose, but I am now drinking like a fish. I am also using food as an addiction. What happen to the balance! Has anyone else gone through anything similar?

Everymoment

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So when I got on this evening, I noticed that the format was different but after I played around for a while, I liked it!

Everymoment

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Fen's picture
Replies 4
Last reply 8/3/2010 - 5:22pm

 Yesterday I noticed the info to the left of the messages indicating how many people are online.  The number has varied from 50 to over 200!  I find this new format difficult to learn too, but so many of you have knowledge, insight and compassion - don't give up on the board.  Many people are counting on you.

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Sharon in Reno's picture
Replies 17
Last reply 2/21/2015 - 6:36am

Hello Friends,

Im serioulsy considering Ipi over BARF and was looking for Ipi success stories and or anyt thoughts or comments on Ipi. Thanks, love, Sharon in Reno, Stage IV

To Thy Own Self Be True & Move Fast When You "Know" You Have To!!

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Sharon in Reno's picture
Replies 9
Last reply 12/5/2011 - 2:44pm

Hello Friends,

Im serioulsy considering Ipi over BARF and was looking for Ipi success stories and or anyt thoughts or comments on Ipi. Thanks, love, Sharon in Reno, Stage IV

To Thy Own Self Be True & Move Fast When You "Know" You Have To!!

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In Stage IV melanoma patients, a high percentage of Tregs appears to be associated with shorter survival.

Remember I said "Blame it on the Tregs!!!"

Received 12 February 2008 published online 03 June 2008.

Background

Melanoma often elicits a profound immune response, and this response has been exploited by various immune therapies. These immunotherapies ultimately fail, however, and advanced melanoma is uniformly fatal, suggesting the development of an immune escape mechanism. In this study, markers of immune escape including regulatory T cells (Tregs), dendritic cells (DCs), and TGF-β were evaluated in 14 Stage IV melanoma patients and correlated with survival.

Source:http://www.journalofsurgicalresearch.com/article/S0022-4804(08)00344-2/abstract
 

Just follow the Science!!!!!!

 

Results 

Stage IV melanoma patients had a doubling of regulatory T cells compared to both normal subjects and stage I melanoma patients. There was a significantly higher number of DCs in all melanoma patients compared to normal subjects. Stage I melanoma patients had a significantly higher number of pDCs than normal subjects, and all melanoma patients had a higher concentration of mDCs than controls. Serum IL-4 and IL-10 were not detectable but serum TGF-β levels were significantly higher in stage I and stage IV melanoma patients compared to normal controls.

Conclusion

 Advanced melanoma is associated with increased numbers of circulating dendritic cells and regulatory T cells. These data suggest that melanoma induces immunosuppressive DCs and regulatory T cells in the systemic circulation.

Source:http://www.springerlink.com/content/k0gk8740u3n75744/
 

 

Take care

Jimmy B

 

melanomamissionary.blogspot.com/

 

 

 

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ocularmonster's picture
Replies 3
Last reply 8/7/2010 - 7:02pm
Replies by: sselig, jim Breitfeller, bcl

anyone out there have ocular melanoma that has metastized to your liver?

feel like a million bucks, look good, thought I was in perfect health until a MRI revealed my liver monster.

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Drew N's picture
Replies 2
Last reply 7/31/2010 - 8:58am
Replies by: akls, Sharon in Reno

I had a bunch of checkups stacked up, but was nervous about "tweaks" near my surgical site. So in the last month I've seen my onco, dermatologist, surgeon, and have had a CT scan and a colonoscopy for good measure. Plus the usual xrays and bloodwork. All negative. Have a few spots on my liver that haven't budged since late 08, but who knows how long they've been there. So that's nothing new since November 08.

My surgeon told me that my tweaks were simply nerves in the area where there'd been cutting. BTW, he (Dr. Gershenwald) defies surgeon stereotypes--truly a great guy to talk to, and from everything I've seen and heard, a darn good cutter.

Gonna keep pounding the curcumin and enjoying each day. Y'all keep the faith.

Drew Nelson

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joy_'s picture
Replies 3
Last reply 7/30/2010 - 7:49pm
Replies by: MichaelFL, FertilityDoc

Just got my husbands pathology report from his LND today, and I am curious what this means:  "No areas of unequivocal capsular invation were demonstrated."  That sounds like a good thing.  Anyone know what "capsular invasion" is or if that tells us anything important?

Sorry if this is a dumb question or if I'm over-analyzing things.  I just want to understand everything about it that I can.

5 of 28 nodes were positive.  Amelanotic (same as primary 2 years ago) Currently Stage IIIC.  He's on the road to recovery and looking forward to life as an NED-er again!

Tracy

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DebbieW's picture
Replies 3
Last reply 8/3/2010 - 2:15am
Replies by: Nebr78, Kimmer, kwahlbin

This is really going to take some getting used to.  Do you have to go back after each series of posts on one subject?  I keep having to go back to the beginning to see the next post.  Is there a next button that I am missing?  I don't find this as user friendly or after 9 years I just knew what to expect on the old board.

Have a great day and NEVER give up.  Cancer really hates that!

DebbieW

9 years NED! 

Never give up!

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