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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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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Tim--MRF's picture
Replies 15
Last reply 4/11/2011 - 9:23pm

I will be seeing some of the people from BMS (makers of Yervoy/ipi) next week and wonder if you have any questions you would like me to address to them.  If so, just post a reply and I will collate them and see what I can find out.  I can then post all the answers here when I get back.

I have already talked to people who have questions about price, questions about dose levels, and questions about availability, etc.  I can't promise to get every possible answer but should be able to get some key clarifications.  I would need these posted by mid-afternoon Monday.

We are working on organizing a webinar on ipi and other developing drugs, hopefully for sometime in May.  We will probably co-host it with the Melanoma International Foundation--Catherine and I are in agreement about what we have in mind and we will likely work out the details in the next few days.

Tim--MRF

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I finally made it to MD Anderson this week for consultation with Dr. Falchook. My creatine level was elevated and kept me out of the pi3k trial I wanted. He  told me the next best option was Avastin & Revlimed. It looks like I start on April 14th for first infusion then go back every two weeks alternating with revlimed.

Hopefully someone can help.

Thanks for all your help,

Rocky (Stage IV Liver Mets)

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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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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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Anonymous's picture
Anonymous
Replies 7
Last reply 4/5/2011 - 8:21am
Replies by: Terra, Anonymous, jim Breitfeller, killmel

Hi Everyone,

Would appreciate your help. I live on the west coast and all the pd-1 trials are on the east coast so I am considering this trial- Unfortunately not able to travel to east coast.

So we are considering this is an open label, multicenter, dose escalation and multidose study of MDX-11-5, a fully human monoclonal IgG4 antibody targeting the Programed Death-Ligand 1 (PD-L1).

http://clinicaltrials.gov/ct2/show/NCT00729664

I know that there has been  success with MDX 1106 PD-1.Wondering if this drug is similiar?? Anyone have any feedback on drug MDX1105-01=Anti-PDL1 or this trial.

Thanks so much.

Douglas

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claudia-uk's picture
Replies 7
Last reply 4/6/2011 - 7:08pm

My husband received his first infusion of Ipilimumab 2 weeks ago. He was tired before, but since then he sleeps most of the time. About every 3 hours (during the day) he has to sleep for 1-2 hours. Then he goes to bed at about 9pm and can still sleep all night.

And he does barely eat anything.

Has anyone else on Ipilimumab experienced the same? Will it get better eventually?

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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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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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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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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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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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Hello, I'm new here. Was instructed by someone on another message board to come here, post my report, and ask for "Regs or Janner".  Thanks in advance to all for your thoughts and advice, it is appreciated.

I had a small mole removed recently, after the pathology report came back the dermatologist said we needed to do further excision.  This is the first mole I've had removed with any suspicious findings.  Basically, the findings are equivocal, they say that they cannot exclude melanoma and report recommends conservative re-excision. This has already been scheduled, basically I need to know what questions to ask.

*********
DX: Lentiginous compound nevus dysplastic type with severe dysplasia, extending to all the margins with postinflammatory pigmentary alteration. Conservative re-excision is advised.  Comment: Pagetoid extension of melanocytes are seen. Special stains are pending.

Tissue measured 0.3x0.3cm in greatest dimension. Entire specimen submitted in one cassette.

Dermoepidermal junction contains a primarily nested melanocytic proliferation. Within the superficial dermis, discrete nests of melanocytes with slightly smaller nuclei are present. lateral to the dermal portion of the lesion moderately atypical melanocytes proliferate which bridge and fuse adjacent rete and are associated with a superficial fibrosis of the papillary dermis.  There is a proflieration of solitary melanocytes at the dermal-epidermal junction. In the superficial dermis, melanophages and scattered mononuclear cells surround capillaries.

Immunohistochemical studies reveal with anti-melan-A stain, a diffuse melanocytic hyperplasia with focal pagetoid extension of melanocytes.

Comment: it is difficult to exclude an early, evolving malignant melanoma in situ, superficial spreading type, arising in association with compound nevus dysplastic type with severe dysplasia, extending to all the margins.

*********

The pathology analysis was done by dermatopathologists, reviewed by a fellow as well as intradepartmental review session (all from a teaching hospital in NYC). All agreed on report.
 

My question is -- what stands out for you? what should I be asking my doctor? In the NYC area who should I ask for a 2nd opinion from?  what will they be able to tell from this larger excision, if anything? if they still can't tell if it's melanoma, then what?  Also, I'm in my mid-late 30s, female, if that's of use to know.

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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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