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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jenniperry's picture
Replies 23
Last reply 4/5/2011 - 10:16pm

Miss you baby!  I can't believe what melanoma does to someone.  I was so angry at the cancer in your body when you died.  It's so unreal how bad it can get.  My heart breaks for those who are suffering this disease or are caregivers of those suffering.

Cherish every day you have.

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emilypen's picture
Replies 1
Last reply 4/5/2011 - 8:17pm
Replies by: Terra

Hi All,

What a journey the last few months have been. My husband has been Stage IV since June 2010 and after being randomized to chemo on the Roche PLX 4032 trial he started on the MEk & PI3K trial in Sept. 10.

Six months later and 15% reduction of the tumours he had a bad reaction to the drug ( a all over body rash) and was taken off the study for 3 weeks. Unfortunately during that 3 weeks one of the tumours in his back decided to start growing again and this time grew right towards his spinal cord. We found out it had only grown 14% which meant he could have gone back on the study but because it got so close to his spine, he needed emergency surgery. The study does not allow you back on if you have an "event". Talk about frustrating!

Now 3 weeks after surgery he is almost finished with 4 treatments of stereotactic radiation ( to take care of any remaining tumour near his spine) and he has been allowed to crossover to the PLX 4032 side of the study through the expanded access program. Our Oncologist is hoping it will work, there are some concerns because he was on the Mek drug that it might not.

His plan is keep my hubby on PLX until it fails and then start Ipi (Yervoy) if there is not anything else better at that time. In Canada Ipi is still on trials as our FDA has not approved it yet.

Anyone else go from a Mek to a Braf inhibitor?

I'm also wondering how long those of you on PLX have been taking the drug with success? And has anyone gone from Braf inhibitor to Ipi? Outcomes?

Thanks so much,

Emily

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Peter L's picture
Replies 8
Last reply 4/5/2011 - 7:05pm

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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Yesterday my husband had his first two week doctor's appointment after beginning the GSK BRAF/MEK trial at UCSF.  We thought that some of his skin lesions looked smaller, but were afraid it was just wishful thinking.  The doctor confirmed that our observations were not merely wishful thinking. He looked at one lesion and said "You call yourself a tumor?"  Apparently, our doctor believes in trash-talking tumors.  We both left feeling more hopeful than we have in a long time.

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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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