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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Melanoma Mom's picture
Replies 10
Last reply 3/15/2011 - 10:54am

Our son has his quarterly PET and CT scans tomorrow .... the first ones since his initial diagnosis and scans this past Fall. They are skipping the brain MRI this time. He is doing great - sailing through his third month of low-dose Interferon and having little/no side effects. He got straight A's at school this trimester and is currently taking Driver's Ed. 

Results on Wednesday. Please keep him in your thoughts and prayers!

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Dear all, 
 
I'm writing you from Argentina.  My mother is 45 years old and was recently diagnosed with Stage IV Melanoma.  She already had a tumor removed from her brain.  The next step is to get a PET scan to see if the malignant cells have spread to other parts of the body, and to start the traditional treatment of chemotherapy and radiology.  We are a close family, she has 5 children.  We are ready to battle this illness, but as you know, this is a desperate, depressive and devastating situation.
 
I have been reading your post and it has given me a lot of hope!  Any help that you can give us would be so useful, there is so much that we want to know.  I have been reading a lot of information on the internet and I get confused. 
 
Although my mother is sick, with half her body paralyzed from brain surgery, she is still in great spirits, with energy, she eats and sleeps well.  We already have specialists on the case that are focusing on the next steps- treatments, medicines, etc, but I'd like to focus on keeping her spirits and strength up!  I've heard about certain diet regimens and dietary supplements like "Cellect" that have had a high success rate.
 
Please keep in mind that I am in Argentina.  Any help/advice/tips that anyone can give me will be greatly appreciated, especially if they are accessible from Argentina.  Thank you!
 
 
+540291154029474 

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jag's picture
Replies 9
Last reply 3/15/2011 - 9:10am

If my scans in April are negative that is....NEM means no evidence of melanoma by the way, although I suppose NERD no evidence of recurrent disease (coined by Sharon in Reno) would be a more accurate description 

I am a very lucky man-never thought I would say that.  Reading my profile you will see that my last surgery where melanoma was detected was March 11 2008.  I have had 2 brain surgeries since-last one in September, but they have both been necrotic material secondary to radiation in my noggin-which can cause a dirty mind(that's my excuse anyway-I have less and less dirty thoughts as this material is removed).  My life is slowly coming back to normal(well maybe a new normal).  Despite all of the bumps in the road, (6 rounds of (hospitalized) biochemotherapy,4 rounds of interleukin 2(hospitalized), 2 skin surgeries, 2 lung surgeries, and 6 brain surgeries epilepsy and loss of driving privileges for 1 year) my life is coming back to the way it used to be, I have learned to walk on the I beams of a sky scraper and not look down-even with loss of feeling/function in my left leg from during one of my brain surgeries-still would probably have a hard time passing a DWI test sober .  

Good things have happened along the way too,got engaged on New Years Eve in Nantucket, got married, bought a house, worked in a lot of interesting places every NYC borough except Staten Island-not of my own but beats sitting at home watching Springer and Maury, started my own business with my wife doing mobile veterinary housecall work-We are in negotiations with a company to purchase a custom built mobile practice unit-beats working out of the back of your car.   We have traveled most of the United States-a giant cross country trip on our honeymoon-now just a few remaining national parks to go see, but we have seen all of the big ones that I know of, and just this weekend, 3 years to the day after my last brain tumor removal, Merry underwent embryo transfer (keeping fingers crossed and saying prayers hoping that it works)-I honestly think the thought of  being a dad is scarier then having melanoma.

I am thankful to:

God

my wife and family

my doctors

all of the people on this board that I have met over the years.

I wish all of the people struggling with this disease the best,  Hang in there, do your best, and keep on living.

God Bless

John

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Simmy from Oz -Melbourne's picture
Replies 1
Last reply 3/15/2011 - 8:42am
Replies by: Vermont_Donna

Ive been on PLX4032 for 7 weeks, and so far fabulous news!!  Im rapt and couldnt have asked for better results :-)  My brain tumour has disappeared... YAY!  And all of my tumours (liver, lungs, skin, everywhere basically) have all shrunk by an average of 70 - 80%  Although I am feeling great emotionally and mentally, I am suffering from the side effects pretty badly.   My entire body has been covered in this rash since week 2, but it is especially bad now on my face.  It looks terrible and the itchiness is unbearable!  Does anybody have any advice? or has anyone experienced this?  I also have aches and pains in all my joints, and terrible pains in my calfs and feet (my feet are blistered and painful to even walk on?)  Im not sure what to do, should I be resting to get better, and keeping my feet up,etc, so that I dont push it all too quickly and end up worse?  Or should I be attempting to do some little exercises and perhaps rehab stuff at the swimming pool? 

Also, Ive just spent the past week in hospital for a bit of a 'spruce up'!  I had a blood transfusion, which my doc sent me in for, by while in there they did a  blood test and discovered that

1. my calcium was too high (only by a little bit).  they gave me something thru IV, then lots of water thru there.  What does all this mean? Someone told me that CAlcium % CAncer go together.. Can someone please explain.... 

2. my potassium was low, so they gave me some of that thru IV too.  Anything I should know here?

ALSO...... PLEASE I hope somebody can help me with this BIG BIG problem of mine....... I CANT STOP WETTING MYSELF WHEN IM SLEEPING.  I WEAR 3 NAPPIES TO BED, HAVE SPECIAL WATERPROOF THINGS DOWN ON THE BED, BUT EVERY MORNING I END UP SATURATED AND HAVE TO CHANGE EVERYTHING......This problem is driving me mental.  My partner sleeps separately now, and nothing helps it, like not drinking at night, etc.  Im on methodone and gabapentin, I think these tabs just 'knock' me out so much, that when Im sleeping, Im just too relaxed to wake up?? But the doctors dont think this could be the reason.  Ive been tested and nothing is seriously wrong??? so im just lost and goin mental!!!  PLEASE CAN ANYONE HELP ME ON THIS ONE???    

God bless you all and hope that many of you have also been experiencinng good news and results, with all these new drugs emerging. 

love always, u are all always in my thoughts,

Simmy from Melbourne, Australia. 

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heg50heg's picture
Replies 10
Last reply 3/15/2011 - 3:51am

I just got done with my 3rd interferon treatment today. So far it is going about like everyone has warned me about. I get the treatment and first two days the shakes and symptons start to kick in. feel pretty cold and lightheaded. The electric blanket that we bought was definately a good investment. Start feeling bad within two hours. Went in today at 12-15 and got done at 2-45 so I know by 4-30 or 5 I will be in bed. The most worst part so far outside of the major syptons are the headaches I cant seem to shake. It seem as though my eyes ache and in turn causes headaches. Could have went in earlier today but it took me all morning to motivate myself to go again. Hoping this is gonna get a little easier or I will probably have to have someone start pushing me out the door to get to these appointments everyday

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Terra's picture
Replies 11
Last reply 3/14/2011 - 11:53pm

Hi, my husband would like to create something for our kids, we are not sure how much time he has left and we have two daughters, a 4 year old and a 2 year and another daughter on the way in June - he mentioned something like a timecapsule, but right now our heads our spinning and I am hoping someone here could suggest something they did or a loved one did for young kids to always have - thank so much

 

Terra  

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Hello everyone,

I'm hoping everyone reading this is having better health & feeling well. I'm hoping also that someone might recommend a specialist that would know a lot about Stage IV melanoma in the NY/Long Island area. The doctors I'm taking my sister to are all associated with Winthrop Hospital. They may all be well qualified, but I'd like to try for someone who's main concern is melanoma that's progressed to lungs.

Thanks to everyone who's written to me. It seems there are some truly great people on this site.

Take care,

Tom Mennin

Always hoping for the best, Tom M

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Shelby - MRF's picture
Replies 5
Last reply 3/14/2011 - 10:50pm

The Melanoma Research Foundation has partnered with EmergingMed to offer a free, confidential, personalized service that helps melanoma patients navigate clinical trials.  Online or by phone, customer service representatives will help you quickly search for clinical trials that match your specific diagnosis and treatment history.  Learn more about this new service by following this link: http://www.emergingmed.com/networks/MRF/  ..  

It is our hope that this partnership will result in melanoma patients learning more about every possible treatment option available to them.

Shelby Moneer, MRF

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mom3girlsFL's picture
Replies 3
Last reply 3/14/2011 - 9:05pm
Replies by: BethA in VA, mayeast, lhaley

Had CT abdomen/pelvis and chest xray on Tues 3/8 (a week ago)...posted no news is good news...got tired (anxious) of waiting and called thurs aft and left voice mail-didn't want to have to wait through wknd...no call back.  Got brave and called today (okay, not too brave, called at 5:45) and left another voice mail.

Not to be a pest, only NED since november after groin dissection...what would you make of this???  I'm thinking "no news is good news", but I've also called -they know I'm nervous-and no one has called me back...

Thoughts?

Do not fear tomorrow, God is already there.

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My ipi re-induction wasn't effective so I'm onto Avastin and Taxotere. I've read that it's used to treat other forms of cancer...I was wondering if any other melanoma person has tried it or is in a trial at this time? I've read a few studies that seem promising.

http://professional.cancerconsultants.com/conference_main.aspx?id=42117

http://afp.google.com/article/ALeqM5ida8la7KM6OiBzS0tOSiXaQLWu7Q

Andy

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LynnLuc's picture
Replies 1
Last reply 3/14/2011 - 5:49pm
Replies by: lhaley

Since I finished the basic part of my trial on March 2, 2011...I have the MRI of my brain, the CT of  my neck, chest, pelic etc, apheresis and blood work tomorrow....my first app't is at 715 AM and my last scan is at 630 PM...what a long day down in Tampa...

I am back to work and looking forward to only having booster infusions of the Anti-PD-1 every 3 months...hoping to remain NED and getting some energy back!

I won't see Dr Weber tomorrow so he will call me with the results on Thursday.

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then Thorocotomy...now "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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adgesoph's picture
Replies 13
Last reply 3/14/2011 - 4:34pm
Replies by: LynnLuc, Linda J, Anonymous, adgesoph, NicOz, KatyWI, Carmon in NM

 

Hi, I've posted here just a couple of times for my dad.  He has stage IV mel. - lung mets, and a couple tumors in his head and neck area.  This past week he has been at Vanderbilt getting ready to start the GSK Braf/Mek combo trial and passed all the screenings until they did a cat scan of his brain and found 2 small brain mets.  So now he's not eligible for this trial-talk about a major let down-we were all so excited he was going to start this medicine.  But Vandy does have the GSK Braf trial for brain mets and they are now trying to get him into this.  Is this the way to go or should he do gamma knife??  The brain mets have thrown a huge curve ball in everything because I thought I was up on my melanoma research but haven't looked into what's best for brain mets.  

My parents are still at Vandy waiting to here if my dad can get into this new trial (they live 12 hours away).  He's had radiation before for tumors in his head/neck area and it didn't work and he lost all of his hair in that area and still has big issues with dry mouth and not tasting things well.  So radiation isn't something my parents want to do again because it was a bunch of pain and trouble for nothing.  Is Gamma knife the same??  Any thoughts on this braf trial for brain mets?  I know it's new and has had some success but with only a small number of patients.  Also, anyone else have experience at Vandy?  So far my parents love it (doctors, staff just impressed in general), just wish they could start a trial.  

Thanks for any input you can give me.  I feel we really need to so something fast with this small brain mets!

 

Adrienne

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chrisS's picture
Replies 9
Last reply 3/14/2011 - 6:23am
Replies by: akls, Jan in OC, Anonymous, Carmon in NM, chrisS, Vermont_Donna

I wrote 2 weeks ago before our Maui vaca that my wife found out about brain mets. Was concerned about flying. The vacation was awesome! Came back and had her stereoscopic surgery on Wed. She was fine that night, and went to work the next day. Yesterday received a call from her work that she was having multiple seizures! She was taken to the ER and I'm in the ICU 15 hours later. There was no bleeding, thank GOD! She is under now and I'm waiting for neurology for the next step.
Has this happened to anyone else? I'm so mad at the stereoscopic surgery doctors made it seem so chill and never warned me that this was a possibility. Maybe I'm stupid for not thinking about it but I can't think of everything! What if she was home alone or driving??
I assume she will lose her license for safety. Anyone know of services in san Diego for this?

Concerned husband

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Cancer Sucks

What else do you tell yourself when naked fear once again seeps inside your bones and curls around your heart to hang on for dear life, Cancer Sucks. Driving home Bob and I become lost in our own thoughts, each trying to catch our breath with the news given at his doctor’s appointment. I notice tears falling slowly against my husband’s cheek as he tries to compose himself, my heart is breaking. We are both in shock once more and losing control in our life has become familiar ground. Talk of summer vacation this week has slowly disappeared in the background as we come to grips as our reality swiftly changes not knowing what our future may bring us.

In only 30 days 2 new lesions have appeared by Bob’s left eye. The melanoma cells have traveled from the tumor bed site that he recently had surgery on in January and gamma knife in February. The cells left there and have traveled in the lining of his brain (meninges) and have settled around his left eye becoming large enough for the MRI to detect. The doctor has recommended Whole Brain Radiation, 5 minutes per day/15 days. It’s the only way to treat the whole lining of the brain and for any melanoma cells that could be located anywhere else in his brain.

Radiation kills the bad cells and good cells, we know this... some memory loss, loss of his white hair and it will make him tired. He will start by Thursday end of day. Bob is getting headaches more often now and has difficulty sometimes with speaking, he is still working.

Also, I ask of those who are on this discussion board and know of WBR and have gone through it themselves to please add to this thread. My husband could use the support as this has shaken him badly. I do appreciate it and whatever words of encouragement you can give we certainly will appreciate it.

Thank you.

Please keep Bob close to your hearts in the following weeks.

Peace to all.

lovingwife to Bob, stage 4
Deb

If you would like to contact Bob
bob.rogers2010.gmail.com

If you would like to contact our family blog site:
http://redesign08.blogspot.com/

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Ellen's Brother's picture
Replies 7
Last reply 3/13/2011 - 11:40pm

Hi, My sister has melanoma stage IV. It would be great if there were any support groups, people in the same boat that she (and me) could meet. We live in New Hyde Park, NY.  I'm also perplexed by our health system. My sister is on disability using Medicare. Getting appoints, treatments... everything is in slow motion, meanwhile her health declines by the day. I'm frustrated, disgusted, and worried. Any advice would be welcome. Right now my sister is being treated through Winthrop Hospital. The tumors on her lungs were discovered December. It's now March. It's like all her doctors have forgotten her.

 

Thanks all,

Tom Mennin

tomillustration@yahoo.com

Always hoping for the best, Tom M

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