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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 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 9
Last reply 9/13/2010 - 8:24pm

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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Kevin from Atlanta's picture
Replies 14
Last reply 9/13/2010 - 10:24am

I got my scans after taking 4 treatments of Ipi. All of my mets grew, lungs, brain, along the spine and esphogus, intestine ect. Two new ones, one at where the brain and spine meet and thyroid. I will wait six weeks, get new scans to see if I am a late responder. I still do not have a plan B, there really isn't anything out there that I am eligable for or perks my interest. I meet with my reg Onc on Monday. The next six weeks I plan on working on my pain. My knees and overall back give me pain 24/7. I have a hard time taken opiates, Ibpruphen just takes a little edge off. I told the onc office to order bloodwork for the thyroid to see if it out of wack. I might ask for a fine needle aspiration of the thyroid just to get a biopsy since the last biopsy didn't get a great sample. I plan to use for mutation testing.

 

I must give kudos to Ft Sanders hospital and Thompson cancer center in Knoxville, TN. I got a bone scan, ct scan and brain MRI within 5 hours and the results the next morning.

 

Professional patient

Stage IV 

 

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KatyWI's picture
Replies 8
Last reply 9/14/2010 - 12:45pm
Replies by: Anonymous, jag, killmel, KatyWI, mimi0201, Rocklove, Sharyn, lhaley

Howdy,

My 3-month post-IL-2 PET wasn't what I hoped for - three new itty baby nodules in my butt.  One option my doctor is suggesting is the OncoVex trial.  It's the new phase III trial.  2/3 get OncoVex; 1/3 get subcutaneous GM-CSF in the control arm.  I thought of two questions that I didn't ask tonight, and am hoping somebody out there can give me some interim answers while I wait0for Monday to roll around.  First, does anybody know if the OncoVex trial has a crossover design?  (If I got GM-CSF and progressed, would I get OncoVex?)  Second, while I'm aware of the phase III trial results for adjuvant GM-CSF, I'm not immediately aware of any efficacy data for its use in active stage IV disease.  I have visited the trial page (http://www.oncovexgmcsf.com/index.html) and the NCI page (http://www.cancer.gov/search/ViewClinicalTrials.aspx?cdrid=617439&version=HealthProfessional&protocolsearchid=8173351) and cannot find the answers.  Anybody out there know more?

Thanks!

KatyWI

Just keep going!

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himynameiskevin's picture
Replies 3
Last reply 9/11/2010 - 9:23pm
Replies by: SuzannefromCA, Fen, KatyWI

Hi everyone. I think I'm fully recovered from round one of IL-2, been home for 6 days and I'm feeling good.  Feeling really good actually, I hope that's not a bad thing. I start my second round on Monday and am wondering, if I am fortunate enough to be one of the positive responders to the treatment, what would I expect to see? I was told that I'd probably be waiting for about 3 weeks to know if it's working.  I can't find much information about IL-2 working on people, at least in detail. Do tumors just shrivel and die? I have a good sized cluster on my back and one on my chest about  the size of a lima bean that I can actually see under my skin. The internal ones, I just have to hope for shrinkage. But would I actually be able to see these things physically get smaller? Also, I've heard from some people that tumors could actually swell or enlarge while being defeated. Has anyone heard or experienced this? I plan on asking my doctor these questions next time I see him, but until then, any information from anyone here would be really appreciated and put my sometimes worried mind at ease. Thankyou.

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