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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Replies by: EricNJill, Anonymous, premedy

This weekend Eric had a new tumor pop up in his groin.  The other tumors that were in/on his leg are nearly gone so I am very confused by this.  He also had increased tumors in and around the heart in his scan on 03/18/11.  We weren't worrying too much about them because of the progress in his leg but now with this new tumor that is almost the size of a lemon I am shocked.  Has anyone hear of this on BRAF/MEK?

[URL=http://www.mediafire.com/imageview.php?quickkey=r1f2584j0td1d0b&thumb=5][IMG]http://www.mediafire.com/imgbnc.php/b6d73b5f3bf97007c89ad36df88bee797c5715aaede9a84a6866f02e2b7076592g.jpg[/IMG][/URL]

Picture of the new growth.

JillNEric in OH

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Jeff's Mom's picture
Replies 14
Last reply 4/3/2011 - 9:11pm

My son was diagnosed with melanoma (stage 3C) in February, 2011 and has been recuperating from 2 surgeries during this past month of March (you can read my profile about his experience).  He has no unresected tumors so does not qualify for any vaccine clinical trials and does not have the MAGE 3 mutation.  And since the FDA has approved IPI, he doesn't qualify because he is Stage 3.  We have searched for any possible trials with an interferon and IPI arm (there is one at the University of Pittsburg but it is not recruiting yet) and have come up with nothing.  So, his options are somewhat limited, unfortunately.  He is "under the gun" so to speak and only has a few days to decide.  His oncologist does not feel biochem is the way to go since Jeff is at Stage 3 and wants to reserve that option if Jeff ever goes to Stage IV.  We have had many second opinions and many of the main melanoma centers say the same thing:  wait and see.   Jeff is not willing to do that - he wants to get rid of any lingering cells that may be floating around in his blood or  in the lymph system.  He is leaning towards Interferon because of its track record in delaying recurrence.  My questions to those of you who did Interferon:  did any of you have a complete response? Any of you with no recurrence and NED for an extended period of time?  Did you complete the first month of high dose infusion and then make it through the year with self-injections?  Did any of you just complete a one month high dose infusion regime?  If so, did it work??  

Are any of you at Stage 3 and on IPI???  If so, how did you get it??

For those of you who did Interferon and relapsed...what were your next steps?  How long did it take to recur?  Did you follow a set protocol or timeline?   I know it makes a difference where the mets shows up, but did you have a set plan for "just in case"?   IL-2, PLX4032, IPI, chemo/biochem?   I don't want to go there, but I guess I need to know what the next steps will be just in case (I really hate even having to type those words).  This totally sucks - I hate that my son has to suffer and go through all of this.  It's not fair!!  I HATE IT!! 

Thanks in advance to those of you willing to respond to a very worried and confused mom.

Jeff's MOM

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Lisa13's picture
Replies 4
Last reply 4/3/2011 - 7:51pm
Replies by: AndyD, RMcLegal, KevinM

I had a very deep primary  (nodular) with 1 node positive (macro). In researching treatment options, biochem along with Interferon has been the only options I'm faced with (other than clinical trials). That being said, for those of you who have done biochem - what are your experiences? Is this chemo and adjuvent therapy together?  Is it successful?

I'm in a race to get going on treatment so that I can try and stay ahead of this beast. Before I meet with my oncologist I wanted to have some info ahead of time.

Thank you,

Lisa

Many impossible things have been accomplished for those who refuse to quit

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Hello, If you are wondering why there seems to be so little money spent on melanoma research see the article "Hitting Hard to Treat Cancers" at 
 
The article starts on page 20. Possibly the best answer why melanoma research money is so low can be found in the last paragraph on page 21. Also in this article is about targeting cancer cells for melanoma, very interesting.
 
Best wishes,
Gene 
Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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I am a melanoma survivor.  Yesterday I met with the folks at MRF and they encouraged me to share a resource I created with all of you!  I hope it brings you all as much support and inspiration as it has to me and many others! www.treatmentdiaries.com

 

TreatmentDiaries.com is a unique online resource, providing REAL information exchange between people coping with or caring for anyone with a chronic illness or rare disease. This virtual support group is free and always available; offering a safe place to anonymously keep multiple diaries of your daily journey, across more than one condition - either privately or shared out with others, allowing for shared coping strategies, support for others and the exchange of information.

TreatmentDiaries.com is dedicated to the needs of ALL types of users including; individual patients, caregivers, family members and advocates. We promote the importance of keeping a diary of life changing experiences and the significance of engaging in behaviors and activities which promote health, mental wellness and the self-management of chronic conditions.

TreatmentDiaries.com was inspired by REAL stories of people struggling with chronic conditions and in desperate need of support. Our goal is to connect those facing similar circumstances and facilitate the sharing of valuable information and support at every stage of an illness through wellness! Finding and sharing genuine information and experiences is a powerful thing. Our goal is to give you the tool to do just that.  

Connect...Share and Inspire!

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JerryfromFauq's picture
Replies 2
Last reply 4/1/2011 - 11:23pm

 

 

Pissed at UNITED HEALTH CARE-MDIPA. 2/28/2011 They sent a 15 1/2 day supply of Gleevec that has held me staple for 2 years. Playing games since then, but sent me no more medicine. Tells me 1 thing. Tells mandatory specialty pharmacy a different story. This is in the government run Federal Employee Health Program.
 FedWeek today reported that OPM has requested that theFederal run insurance plans reduce their drug expenses for 2012.Problemsgetting drugs from UHC.  Dr has been working on problem renewing prescription for 3  weeks.

 

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

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Thank you all for your kind words of wisdom and responses to my previous post about Interferon.  It is comforting the hear that many of you struggled with this same tough decision and were able to come to peace with your treatment choice.  I will pray that Jeffrey is able to do the same.  Thank you, Carol, for the link to your blog.  Your message was so beautiful -  we are determined too.

Thanks,

Jeff's MOM

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sharmon's picture
Replies 1
Last reply 4/1/2011 - 6:00pm

We just got the news from MDA that the tumors in his lungs are growing.  He has been on MEK for 13 months.  His regular Doctor was not available and we will be able to talk to him on Monday.  We are off the trial for now or at least until we can find the exact amount of increase, there seems to be room for interpertation.  But for now my question is WHAT NEXT?.  He is braf negative and Hla-2 negative.  NIH has a Til trial for HLA-2 negative Melanoma patients.  He has done luekine 2008,  Ipi with carbo and taxol 2009,  biochemo in jan of 2010, and MEK for the last 13 months.  Stil no surgery for melaona in the lungs.  Any Ideas or thoughts would help right now.  Thanks to all.

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Hi Jim,

Jonathan from MIF recommended that I get your opinion regarding a Phase 1 MDX1105 (anti-pdl1) trial. He told me that you wanted to get into a trial of anti-PDL that your doctor at MDAnderson, a Dr. Hwu, is extremely enthusiastic about.

http://clinicaltrials.gov/ct2/show/NCT00729664
http://utm-ext01a.mdacc.tmc.edu/dept/prot/clinicaltrialswp.nsf/Index/2008-0756

Would appreciate any input you can share with me, particularly, Dr.Hwu's opinion regarding this trial & MDX1105

Is anti-PDL1 as effective as PD1. Has any results been published on effectiveness of this drug?

Thanks so much for your help.

Douglas

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We just got the news from MDA that the tumors in his lungs are growing.  He has been on MEK for 13 months.  His regular Doctor was not available and we will be able to talk to him on Monday.  We are off the trial for now or at least until we can find the exact amount of increase, there seems to be room for interpertation.  But for now my question is WHAT NEXT?.  He is braf negative and Hla-2 negative.  NIH has a Til trial for HLA-2 negative Melanoma patients.  He has done luekine 2008,  Ipi with carbo and taxol 2009,  biochemo in jan of 2010, and MEK for the last 13 months.  Stil no surgery for melaona in the lungs.  Any Ideas or thoughts would help right now.  Thanks to all.

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Adriene's picture
Replies 17
Last reply 4/1/2011 - 6:39am

Hi everyone! I just like to update here and there. I was diagnosed 11 years ago with stage III nodular melanoma. I had a positive node in my groin, had lymph node dissection followed with 4 four months of biochemo. Darkest days of my life, but I'm here and so grateful. During that time I
became MPIP obsessed. I made and lost wonderful friends. Don't lose hope, keep fighting! God bless all of you.

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Charlie S's picture
Replies 6
Last reply 3/31/2011 - 11:49pm

Here is a link to an article that might offer some insight into what possibly lies ahead for Medicare to approve Yervoy.

Though the article is about Provenge, a Prostate cancer drug, the similarities are striking when comparing to Yervoy.

Provenge is an immunotherapy as is Yervoy.

Provenge extended overall  survival about 4 months in trials, about the same as Yervoy

Both are pricey: Provnege is 93K, Yervoy (at least now) 120K.

The troubling part is that Provenge was FDA approved in April of 2010 and it will still be another 90 days, following public input, before Medicare gives final approval to pay for Provenge.  Lets hope it doesn't take another 15 months for Yervoy.

Anyway, here is the article:

http://www.charlotteobserver.com/2011/03/30/2183972/medicare-to-pay-for-93000-prostate.html

Cheers,

Charlie S

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ADSCLT's picture
Replies 5
Last reply 3/31/2011 - 10:38pm
Replies by: ADSCLT, lhaley, MichaelFL

Hi Everyone,

 

I've been reading post often since my father was diagnosed in November, 2010.  We recently found out he has 6 brain mets, most are small but one is larger located on his brain stem.  It caused his eyes to cross and his vision is very blurred.  His last WBR is tomorrow.  We also see the Chemo doctor for the first time tomorrow to find out our options.  I have no idea what to ask.  I've researched RG7204, IPI, and other treatments.  I don't know what my dad will qualify to take.  Any advise will be appreciated.  We are in Charlotte, NC.  Thank you.

Give it all to God.

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PeterO's picture
Replies 5
Last reply 3/31/2011 - 6:36pm
Replies by: LynnLuc, Anonymous, Janis B., jim Breitfeller

It’s interesting to consider the paradigm shift occurring in therapy for MM. The FDA approval of ipi raises many questions in my mind (as stage IV m1a), so perhaps others will offer their thoughts on them:

  1. Is ipi likely to replace IL-2 as first-line therapy for most patients? It seems to be less toxic and offers a higher rate of durable remission.  Is that correct? It’s my understanding that IL-2 never reached phase III trials and thus its impact on OS has never been quantified. True? So is it only anecdotal evidence that suggests durable remissions for a small percentage of IL-2 patients? Anything published on that?
  2. Reimbursement for ipi is the next big hurdle. It seems BMS set an extremely high price point knowing it would have to negotiate the price down with the formularies. Any reason to think this process won’t take many months given what’s been happening with Provenge? In the meanwhile, are compassionate use trials with ipi permanently closed? What happens to those who need/want ipi but can’t get into a trial and clearly can’t afford self-pay? Will BMS pony up until Medicare and the insurance companies make a judgment?
  3. Is there drug trial data that shows higher effectiveness for ipi at 10 mg/kg vs. 3 mg/kg? Does higher dose affect the rate of durable responses? Do FDA guidelines allow higher dosages?
  4. The assumption seems to be that BMS will now sit on its trials of anti-PD1 agents, which I’ve heard showed promise in phase I—higher response rate, lower toxicity. Are there other companies developing similar agents that might therefore accelerate their trials for melanoma patients?
  5. What other agents are there in trials that might ultimately replace current first-line treatment options? What about the tyrosine kinase inhibitors? Any way of judging their prospects?
  6. Any hope for OncoVex being a reasonable treatment options for m1a’s? Where is it in the development pipeline? What would it take for it to become competitive with ipi for those with sub-qs only?
  7. Sorry, I can't resist: Does anyone know how much BMS execs are paid?

Lots of questions. Anyone with informed answers? Thanks. 

www.theogler.blogspot.com

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MaryMary73's picture
Replies 6
Last reply 3/31/2011 - 6:08pm

A girl I work with knows someone who passed away this morning from melanoma. She isn't sure if it was nodular or superficial spreading but apparently it was quite deep at diagnosis and ended up spreading to her brain quite quickly and eventually her spine and bones. She was 36 years old and a lifelong sun-worshipper. She leaves behind 2 young teenagers. So flippin' sad.

What drives me insane is the fact that we work at an insurance company that handles group Long Term Disability claims. We know all about cancer yet I have some coworkers who are actually SURPRISED that skin cancer can be deadly.

The only real wisdom is knowing you know nothing -Socrates

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