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 ran across this and thought it may be of interest.

http://therapy.collabrx.com/

 

From the Cancer.net website:

Targeted Therapies

This section is the result of a collaboration between ASCO and Cancer Commons – Melanoma and is updated dynamically.

As mentioned in the Treatment section, a patient’s treatment plan can be tailored or personalized based upon known subtypes of melanoma. This approach, known as targeted therapy, is designed to target or inhibit specific genes or pathways that contribute to melanoma cell growth. This is a major focus of research for melanoma.

Patients can learn more about these genes and pathways by using the Targeted Therapy Finder, a search tool that provides information on possible therapies and diagnostic tests based upon a patient’s melanoma diagnosis. Patients are encouraged to use this tool and share the results with their doctor when making treatment decisions.

The information provided through this resource is maintained by the Cancer Commons – Melanoma editorial board.

http://www.MelanomaResources.info

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KevinM's picture
Replies 14
Last reply 4/5/2011 - 11:23am

I can't believe that it has been 5 years since the surgery to remove the axillary lymph node that turned out to be melanoma. I have an unknown primary and after a full lymph node dissection, the one lymph node (2/3rds of a golf ball size) was the only one found positive for melanoma. I did 3 rounds of bio-chem in a clinical trial which was very challenging.......but I am still glad I chose this route.

To help celebrate my 5th anniversary, I am running The Boston Marathon for the 11th time and second with the "Running for Cover" Melanoma Foundation of NE marathon team. This will be my 19th marathon and 7th since my diagnosis. Running has certainly helped me get through the past 5 years and it has also provided an avenue to promote melanoma prevention and early detection. I feel great that my message has changed the mindset of many friends, family and colleagues.

This  year I am running in honor of my healthcare team at Beth Israel...but please know I always run with those of you engaged in the battle with melanoma in my heart.

My best to you all!!

Kevin

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archer's picture
Replies 17
Last reply 4/5/2011 - 10:34am

I admit my human frailties are in this area.  I have never been comfortable doing this but I will learn if it will help my wife.

Only been married less than a year, her age 55.  She is the bubbliest, strongest female I have ever met.  We exercise daily and eat 90%  healthy.

The diagnosis this past Thursday has turned our world upside down, (more so it seems for me than her)  She has the best attitude and there isn't any

pity party going on.

 

I can't understand how she got to this place.  On Jan. 15, 2011, she felt a lump in her armpit.  Went to family doc, he felt it said it didn't feel like cancer

and thought is was an infection in the lymph.  Medicine for 10 days. Nothing changed.  Then on to a surgeon who immediately ordered an ultrsound

and then they did a biopsy the same day.  This biopsy was taken to the local lab and then transferred to Mayo Clinic.  After waiting for 3 weeks, Mayo

told us they couldn't find anything and asked for more tissue.  The surgeon suggested trying to remove the lump which she did.  She said it was the size

of a golf ball.  She also said it was watery with some solids and no tentacles growing out of it.  That lump was again sent to Mayo Clinic and then we 

found out it was sent from Mayo to the Massachusetts General Hospital.  So, again after 3 weeks, they tell us that it is a spindle cell that they feel is

caused by a metastasized melanoma.  She never goes in the sun and there aren't any detected on her skin.  We are really confused and scared.

 

We are to meet with an oncologist this week and see from there.  I am sure they want to make sure she does not have anymore cancer present in

her body.  That is what we are hoping for.

So, I hate that I have to be writing this story but for me, it seems to help to do this... Sort of a therapy.

One question, I am wondering why it took 3 labs, different pathologists and 6 weeks to come up with this diagnosis.  Does that make sense to anyone?

Is it a good idea at this stage to ask for a second opinion?

Thanks for listening.  We are not sure what to do....

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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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emilypen's picture
Replies 12
Last reply 4/5/2011 - 12:17am

HI All,

This is my first time posting, after lurking for a while.. laugh

My husband was diagnosed  Dec. 2008 with stage 3B after he had a mole removed on his chest, it had spread to 2 lymph nodes so further removed another 30 nodes in that side of his body. He did the high dose interferon and then was given a clean bill of health for almost a year.

June 2010 - we went to the emergency room because he had severe chest pain, and after a CT scan and x-ray they told us he had a soft tissue tumour in his upper left back area that was pressing on nerves and causing the chest pain. They also discovered 4 lytic lesions on various bones in his back and one in his jaw.

He tested Braf positive so our doc tried to get him into the Roche trial but he was "randomized" ( god i hate that word!) to the dacarbazine arm. He's done 2 cycles of that and he had scans on the 11th, the trail nurse said the scans show some progression. We see the doc tomorrow to hear the full story.

We also meet with a new doc tmo to see if he can get on the GSK Braf/Mek trial, which our current doc thinks is likely. (he reserved a place for him on the trial even before the 2nd cycle of dacarbazine)

Just wondering if anybody else out there is doing the combination trial? side effects? is it working?

Also any advice on how to fight the fatigue that comes with morphine? My husband is on 30mg slow release x 2 a day, with 5 mg for breakthrough ( which luckily he rarely needs to use), but he could sleep for 12- 14 hours every day.... or longer if i don't wake him up.

He's also seeing an integrative oncologist ( chines herbal medicine) who is a medical doctor just trained in chinese meds as well who has him on a herbal tinture that seems to be helping him. He doesn't look sick or feel sick, just major fatigue.

We also have cut out, gluten, sugar and cow dairy.

We're doing anything we can. He is so positive and convinced he's going to get better, it's just a matter of time and the right meds... i think sometimes i'm having a harder time dealing with it than he is... lol

Oh well... any and all advice or info appreciated.

thanks,

Emily

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Terra's picture
Replies 2
Last reply 4/4/2011 - 10:55pm
Replies by: Sharyn, washoegal

Hi - Derek's brain MRI done last week - before he started the P13 K and MEK combo trial - results were:

- a tiny dot (2 - 3 mm in diameter) of enhancement is noted centrally in the pons as well as on the coronal and sagittal reconstructions

- there is no clear evidence of edems but a small region of blooming noted in this are on the gradient echo sequence - could represent a small capillary telangiectasia but a metastic deposit cannot be ruled out - follow up is needed

They wetnt ahead and started his treatment.  My question is I have another MRI of the head done in Aug 2010 at another cancer centre should I ask them to compare the two to see if these were there or just wait for follow up - I am a little afraid to wait and afraid to know if these are mets to the brain

I woulod have thought they would have thought to compare them already - need help

 

Terra

 

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Hey Everyone....

generally speaking, do melanoma primaries have pigment.  We noticed a small pencil-eraser-sized non-pigmented 'lesion' near the temple by the hairline last night and I don't know to be concerned or not.  She sees the derm in a few weeks, but sometimes a few weeks can be a really long time.  Do melanomas tend to be pigmented ?

Thanks to all

 

peter

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Our family is walking in the ACS Relay for Life in May, in honor of my battle with stage 4 thyroid cancer and our 15 year old son's current battle with melanoma. Do any of you have any info/statistics/personal stories on how ACS has aided melanoma research or patients? I would like to have some melanoma-related info to share with friends when asking if they would like to contribute. Thank you in advance!

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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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