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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Jim in Denver's picture
Replies 7
Last reply 8/9/2010 - 1:09pm

 I have been meaning to post, but have had a busy July with family.  I have not posted since late May, I think.  I have waited until I have news to report, so here it is!

As background, I was diagnosed in March this yearas Stage IV with lung mets, no primary identified then or since.  Tested negative for BRAFe, k, and g. Limited treatment options locally, so went to MD Anderson almost 3 weeks ago for 3 days,  My Onc there is Dr. Wen Jen Hwu.  I am extremely impressed with MDA - a large operation, but very personal and caring.  Scans showed barely measurable growth in lung mets, since they are barely measurable in the first place (.5 cm).  Dr. Hwu said the mets may not have grown at all over the 3 months since the first scan.  MRI of brain also negative.  She offered me the opportunity to enroll in the Ipi/Temador Trial at MDA, which I gratefully accepted.  She answered all my questions over about an hour about the trial, and I spent around another hour with her our first appointment.  Had a small tumor removed from my left shoulder that appeared about 8 weeks ago, but Dr. Ross left another on on my left thigh to use for measuring possible progress from treatment.

So Tuesday I will travel to Houston with my wife for two days to begin treatment.  The Ipi part is "high dose" - 10mg/kg.  The Temodar is oral chemotherapy taken over 4 days of each 3 week cycle.  The treatments are scheduled for every 3 weeks for 4 cycles, or a total of 3 months.  Scans are done at 6 and 12 weeks.  Maintainence can occur indefinitely if there is a benefit to the initial treatment, on a reduced frequency schedule.  Current research on Ipi is focused on using it in combination with other therapies that have shown effectiveness.  The idea is that there should be at least an "arithmetic" benefit to such a combination (i.e. 1+1=2) but possibly "geometric" benefit (e.g 1+1=3).  This is the purpose of this study.  High dose Ipi has more side effects than the lower dose (3mg/kg - available in the Compassionate Use Study), but also higher efficacy.  The side effects to both treatments should be manageable, but the list of possible ones is long.  I have read here today and in the past about side effects for each drug seperately, but will post again about how everything is going as we go forward.

My kids are at camp this two weeks, so no family issues with my first treatment.  My wife will be with me for the first treatment, and she has arranged family leave.  Our insurance (though her work) and her benefits are very good, so we are fortunate in that regard. I just spent time with my Mom and my sister and her family during vacation.  I emailed them a couple of weeks before that to let them know about my diagnosis.  They have taken the news pretty well, I think, and now understand that I have a good plan to fight this disease.  My wife and kids are encouraged, as am I, by my initial visit to MDA. I will need to tell friends here very soon since my hair may soon be a slightly different color (white!) and I will be a regular visitor to Houston for the forseeable future.  

So that is my story for the recent past, in a nutshell.  I am encouraged somewhat that the disease has not progressed much, if at all, since initial diagnosis in March.  Although my work with the U of Colorado over 3 months did not yield any results, the time spent there has not harmed me either. MDA will keep my Onc at CU informed by email about significant developments in treatment, and they will be my local backup if needed.

In the meantime, I apologize for not keeping in better touch with those of you who have become friends and correspondents through this Board.  You have helped me sustain a positive attitude and sense of humor about this disease, as well as helped with information.  I will write when I can, but may resort primarily to posting here, depending on my energy level this week.  Thank you all for your support, good wishes, and prayers - they have helped us more than you can know.

 

Many Thanks,

Jim in Denver

 

 

 

 

 

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Lori C's picture
Replies 6
Last reply 8/2/2010 - 6:53pm

Will is now about 11 days post chemo (carboplatin and taxol, to hopefully reduce tumor burden and allow him time to participate in a better treatment, perhaps Oncovex if we still cannot get ipi).  His main problem is extensive liver tumors.  However, he had a number of skin lesions that had shown up since April - bumps on his head and two on his face.  Since the chemo, all the sub Qs seem to have reduced significantly or disappeared.  I know one cannot extrapolate response to other organs, but would this indicate these tumors are responding to the chemo?  They also went down fast after the biochemo (but that was so toxic it was stopped after 2 rounds - and the tumors returned just as fast as they'd disappeared).  Are sub Qs just more responsive to treatment?  

For what it's worth, Will has been feeling quite good the past week.  I have not seen much of any side effects from the chemo - mild fatigue but he's actually feeling better now (he's on better pain management for hip mets) and has been walking further and more than he has since April.  His appetite is good - no hair loss - no other apparent effects.  In fact, I would say he's actually feeling overall better than I've seen him feel since perhaps March.  His quality of life/performance status is considerably improved.  It could be the pain management but perhaps it is also the chemo - I guess only the scans will tell.  His former oncologist painted an extremely bleak picture three and a half weeks ago - basically suggested things may be hopeless and would go quickly downhill.  And obviously it's far too early to tell - but I was expecting things to be much worse - and today we were out having coffee and donuts and chatting like we did before he became so ill.

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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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