MPIP: Melanoma Patients Information Page

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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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amybusby's picture
Replies 20
Last reply 9/18/2010 - 7:29pm

A mixed bag, as usual.  The leptomeningial mets (around the brain) are stable, maybe even somewhat better.  I had no problems with WBR or with the temodar.  No idea yet if my spinal fluid is still clear or not, we'll check that next week when I go in for another intrathecial IL2 dose in my head port.

It's been a long time since I last had the GSK BRAF inhibitor (end of May), so we've been expecting at some point  that the effects would wear off.  I've had some growth in the subq system, and the lymph nodes, but the main problem is the growth of bone mets.  I think all were there previously but now are growing & compromising the bones more.  I have a pretty substantial right femer met that's come on strong recently in terms of pain, so I knew something was wrong there.  It's going to need immediate attention.  So the plan is to try for the next few days to get my hands on some BRAF inhib. drug somehow.  I am open to all suggestions, companies, trials, compassionate use plans, inside information, etc.

Assuming we can't do that (a fairly likely assumption) Dr. Papa recommends radiation for the femer & a couple of spinal mets.  The spinal ones aren't hurting yet but as long as we're there....  (radiation would go along again with another round of radiation).

I'm going on Thursday for an infusion of Zometa - anyone done that?  Anything I should watch out for?  (to try to build bone density)

So it's discouraging of course.  It torments Dennis to know there is something out there is practically assured of controlling my systemic disease now that we have the CNS disease stable.  My quick and almost complete response should make me a terrific candidate for other cohorts of the BRAF trials that allow CNS disease, or for compassionate use - you'd think.  But then again we all know rational, reasonable thought processes have zero to do with FDA procedures and / or drug manufacturer business decisions.

So right now I am focusing on staying off my leg and making sure there are no bone breaks im future.  We all know how great I am about letting others do stuff for me (and letting them do it their own way!) so this should be fun.  But I have agreed to do my best. 

Love,

Amy

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sofiaeli's picture
Replies 4
Last reply 12/15/2014 - 10:40pm

Hi everyone.

My husband is currently fighting stage IV melanoma and is about to enter the TIL study at NIH.  Anyone have any experience with it? 

Thanks!

Melissa

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Nicky's picture
Replies 5
Last reply 9/14/2010 - 10:56pm
Replies by: washoegal, Pekoe, Fen, Nicky

Hi everyone

I've just been on State Television in Australia.  I was diagnosed with Stage III melanoma 10 years ago and I am currently NED.  I was treated with radiation therapy, my patnet is under "nicky".  I'm not financially well off but this being my 10 year NED anniversay, and having just moved to Brisbane, Australia, I decided to scrape up all the coins I could find and donated $100 to the Princess Alexander Hospital  Research Foundation in Brisbane who are doing ground breaking work in Cancer research for melanoma and other cancers including the vaccination program by Dr Fraser with the Giardisal vaccine for cervical cancer.

Anyway, if you donated $5.00 you would get a plastic duck with a number on it and it would be raced down the Brisbane River.  The first prize was a toyota yaris and out of 21,000 ducks worth of donations from people, my duck came first, and I am so excited, it is unbelievable.

So here is the interview and also a little bit more of a press release to any one contributed below it.

www.youtube.com/watch?v=GagCONDT4us  

 

"When going Quackers really saves lives

Thank you so much for supporting the PA Research Foundation for the Great Brisbane Duck Race.  The sale of over 21,000 ducks has raised in excess of $100,000 for cancer research which will literally helps save lives.  This is a record achievement for the event and you have helped our goal become a reality.  Thank you.
The Winners are:
1st Place: 19544 Nicola from Windsor, QLD
2nd Place:13842 Raymond from Richlands, QLD
The winner of the Great Brisbane Duck Race Nicola from Windsor said “I owe my life to the PA, the least I could do when I heard about the event was to buy a Flotilla of ducks to show my support, I never thought I would win”.
Nicola was almost in tears when we called her to tell her the good news and she said the timing could not have been any better as her old car was about to pack it in.
Nicola owes her life to a PA funded research project headed up at the PA Hospital by Professor Bryan Burmeister. She has been part of the special 17 year international project which is the first of its kind to prove the effectiveness of radiation therapy in curing melanoma.  It is now benefiting patients across the globe including Nicola.
“I am a lucky duck in more ways than one, thank you so much to the PA and the invaluable research that they have helped make possible.” She said
The funds raised from Great Brisbane Duck Race will go to support cancer research in the areas of prostate cancer, skin cancer, leukaemia and breast cancer research.
There are more projects that need our funding than we can support so money raised like this is just wonderful.  Thank you so much.
All the live action and photos of the event will be up on the website later this week.
Many thanks from Quackers and the PA Research Foundation Team. 

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 September 29 2010 at 7:00pm to 8:00 pm

Everything You Want to Know about B-raf, MEK and other Targeted Therapies for Melanoma
PART 2 Webinar with Dr. Flaherty and Dr. Schwartz

 

https://www1.gotomeeting.com/register/132174457

) 29th @ 7:00pm(EST)

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Nancy's picture
Replies 6
Last reply 9/14/2010 - 10:27pm
Replies by: Charlie S, Kevin from Atlanta, lhaley, rj, jag, Anonymous

The day is drawing near, at least I think so, when difficult things must be answered,  Charlie S. I have printed out nearly everthing you wrote over the past 2 years, Jerry Sullivan, you've been a welcome guest to us, Tim in Fl = Jill & Eric, Kevin in Atl., michel in FL. Betsy, Ellis, who now suffers, and Sharyon in Reno, linda, so many more,   but my writing is this- I don't think Buddy has a chance one of overcoming this melanma thing.   He still wants to get the 4th treatment of IPI.  He missed the 3rd injection, due to the fact he fell, was hospitilized with brain swelling, now in rehab center on 4mg steroids 3 x day,, The doctor is now reducing Steroids to 4mg in morning and night, and 2 in afternoon.  He must be off the 2 in afternoon to be allowed to get the IPPI....His tumors were getting smaller, but now there are more, and the others are growing,,..,.He was not allowed to get treatment @3 due to the steroids.   So, its now time for #4- who knows if he'll be allowed to take it.  He tried so hard in physical theraphy to get strong..The good fairies at the rehab said they wanted to discuss after care and hospice but I told him he was looking  forward to getting this over and be on his way to the orchard, am I the one to mention this to him,  or should I leave this to higher ups...I don't want to give up, but it seems a time is around the corner when something must be said === his torso ha numerous tumors, scan showed multiply spots on brain, its in his liver, both lungs--/////////////// If anyone sees an unused miracle laying around, send it our way.... How can I prepare him for the worst?   I've tried to stay up and heed advise given, but I must have not paid attention somewhere, or messed up, I cannot be the bearer of bad news, when I've tried to be so positive.

Hes had the Interferon, Temador, IL-2, Gamma Knife, WBR, the brain surgery, trying IPPI ===should hehave another brain surgery  if they find more tumors in the old tumor beds, try gamma knife again, should he try Taxol ETC --He was not tested for B-RAF, even tho I asked for it..

All in all, his doctor, Dr. William Sharfman at Johns Hopkins i, I believe, one of the best in melanma, He was one of the keynote speakers at Chicago a few months ago...

Thinking of all the good friends I've made on my journey and thanking each one of them for smothing out that road--hopefully, someone, somewhere will be there fo you,...Who ever thought Jerry Ellis could ride a horse:::  or even try!!! He has to be a redneck~!

Nancy - origianal WV gal (must be a redneck too)

Good Luck Everyone = Luv ya

 

 

 

 

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Anonymous's picture
Anonymous
Replies 9
Last reply 9/16/2010 - 1:08am

I am looking for information from other people who have had mucosal melenoma. Do to the fact that this is a rare aggressive melonoma I would like to find out  about any level of successful treatments. I have completed 25 radiation treatments with the disease growing right through the treatments. I have tried ipi and temodar with continued growth. I am now on Carboplatin &Taxol and Avastin. Will do imaging in about 5 weeks to see if this is working. I have been to MD Anderson, Mayo Clinic Jacksonville and Moffitt Cancer Center in Tampa. I would just like to hear someone has found something to slow this stuff down or reversed it  to ned.Thanks in advance for taking the time to respond.

It's agood life if you don't weaken--- borrowed from a friend

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bri11iance's picture
Replies 1
Last reply 9/13/2010 - 9:31pm
Replies by: Charlie S

I received an incorrect bill from a local pathology lab and called their large national billing service today.  I was put on hold and - to my delightful surprise - listened to a recording of information about the dangers and prevalence of melanoma and about sun safety.  I was quite impressed with the wide audience this simple strategy will reach and also pleased to be spared from the usual elevator music or sales pitch.

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emilypen's picture
Replies 6
Last reply 9/16/2010 - 11:28am

Hi all,

So met with the oncologist today and the new CT scan shows very minimal growth on the one tumour they haven't radiated. It's the one they're leaving as is in order to guage how the trial drugs work. Is that normal? Do tumours just slow down sometimes? The radiated areas show scarring but no new cancer anywhere. PET scan results later this week.

All the tests are done, and my husband starts the trial on Wednesday. http://clinicaltrials.gov/ct2/show/NCT01155453

Has to spend the 24 hours in the hospital in order to make sure he has no bad reactions to the drug and they'll take his blood every hour to check for dispersion rates.

Our fingers are crossed. I'll keep you posted.

 

Em

 

 

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Charlie S's picture
Replies 2
Last reply 9/13/2010 - 9:20pm
Replies by: Anonymous, washoegal

There are several hospice locations in Reno and due to HIPPA rules, it is difficult to find her.  Does anyone know which Hospice she is at or her last name?

Thanks,

Charlie S

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Lori C's picture
Replies 6
Last reply 9/19/2010 - 5:22am
Replies by: Janet2, James from Sydney, Lori C, Anonymous, Jackie W, jag

Will is doing okay - going for 4th chemo next week.  All visible lesions very small, flat, etc.  However, he is SO tired.    He's on cisplatin and taxol.  Is this pretty normal?  Pain is much better.  But I'm worried - of course.  He's just so worn out.

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Will is doing okay - going for 4th chemo next week.  All visible lesions very small, flat, etc.  However, he is SO tired.    He's on cisplatin and taxol.  Is this pretty normal?  Pain is much better.  But I'm worried - of course.  He's just so worn out.

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himynameiskevin's picture
Replies 16
Last reply 9/19/2010 - 10:32am

Good thoughts, prayers, stories and vibes would be greatly appreciated this week. I hear the second week is worse by far. But I'm ready, I kind of know what to expect as far as the hospital, treatment and side effects go. So hoping to use that to my advantage. Also, my mom flew in last week and she'll be here to keep me company until Wednesday, and a mothers love is, well, to me, is pure and unabashed, and it's great to have her here. I hope all is going well for everyone. Let's keep our heads up. Keep learning and progressing towards positive outcomes. One day at a time. I'll talk to you all soon. -Kevin

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The Melanoma Research Foundation, in conjuction with the H. Lee Moffitt Cancer Research Center in Tampa and the Massachusetts General Hospital in Boston, will host 2 FREE patient education symposia in October. 

"Living with Melanoma:  Science to Survivorship" will be held on:

Saturday, Oct. 16, 2010 at the H. Lee Moffitt Cancer Research Center - Tampa, FL

Friday, Oct. 22, 2010 at the Massachusetts General Hospital - Boston, MA

 

You can register on our website to attend this free event.  Patients, caregivers, family members, and healthcare providers are invited to attend.

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lovingwifedeb's picture
Replies 10
Last reply 6/30/2017 - 1:54pm

September 12, 2010

 

It’s been 7 weeks since the original surgery on his leg/groin area; 2 weeks since his last surgery to fix the lymph channel/fluid leak and infection and it’s the best he has felt since this has all began. It’s a reminder that my husband, Bob didn’t feel sick or in pain when he was first diagnosed with this life threatening disease just before Father’s Day. A lump in his leg was his only warning signal to get checked, the diagnoses of stage 3c melanoma.

 

My husband and I were sitting in the morning sun having coffee earlier today, a beautiful day in the northwest, when he turns to look at me and says, “just one day at a time, that’s how I will try to take this. Look at this day, it’s gorgeous, take it in will you… what more could I ask for?”

 

Really? I could give you a list, I thought to myself… the summer vacation we had to cancel because of the surgery you had to have. Halloween decorations, which we do big every fall that take 3 months out of the year are being postponed because we don’t know what to expect because of your treatment or your health? The deck we want to build next summer. New patios added to the house? New flooring downstairs? I mean just where does this list end? We were talking of getting remarried again… planning these things, the timing, our future together? I couldn’t help wonder to myself just where this melanoma road would lead us.

A smile on his face, his blue eyes twinkling at me and I knew his heart was speaking to me. Our lives were being forced to slow down due to his health no matter how much we hated it. No matter how difficult it was for us to deal with, maybe we couldn’t do everything we wanted to, when we wanted to, maybe we had to choose what was important to us.

 

We both were feeling that time was our enemy now, and needed to find a way to work around it, to adjust. The secret was how… how to look at each day through eyes like a child to be explored and to not take life for granted now. To take one day at a time on a conscious level and try to leave the stress behind. How to live daily and still get the things we needed to get done and not be too greedy? Boy, do I have some personal work to do…

 

I love you my dear husband.

 

 

If you would like to leave Bob a message please send one here:

bob.rogers2010@gmail.com

 

 

If you would like to follow our family blog page please go here:

http://redesign08.blogspot.com/

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Anonymous's picture
Anonymous
Replies 0

Has anyone heard how Rocco is doing??/ His scans were last week. Hoping for the best for him.

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