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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Sherron's picture
Replies 1
Last reply 12/11/2012 - 12:28pm
Replies by: Sherron

My name is Sherron....my e-mail in Noni2@verizon.net    If you need to talk I am here.......

 

Take Care,

Sherron, wife to Jim FOREVER

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A couple articles that give hope for a cure.  The first article doesn't specifically mention mel but seems to have some real promise. 

 

http://www.foxnews.com/health/2012/12/10/girl-puzzling-diagnosis-helps-eradicate-cancer/?test=latestnews 

 

http://oregon.providence.org/patients/programs/providence-cancer-center/Documents/sbrt-ipressrelease-060512.pdf 

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Snickers60's picture
Replies 2
Last reply 12/10/2012 - 5:55pm
Replies by: triciad, Anonymous

Benfotiamine is a water soluble form of Thiamine = B-1.    It is essential in healing NERVES.   As most of you know Wayne has had unbearable neuropathy in his legs and feet with crying shooting pains at night espeically.    I actually bought this for myself for ENERGY.    Then we really read up on it and saw how much it has helped people with diabetic and chemo neuropahty.  

Wayne started taking it immediately.  He had just gotten his Neurotin script filled he got at MDA last week, but decided to give Benfotiamine a go first.     In 2 DAYS he had little,  if any SHOOTING PAINS and slept thorugh the night wth no waking in that  awful pain.   It has also changed my life in 3 days with ENERGY  - something I had NONE OF.   My pain and his is so much better.     This is in only 3 days !    

DO YOUR OWN RESEARCH ABOUT IT, and talk to your DOC, but by all means, and by all ways, take a look at this supplement they are using for a long list of very hard to treat ailments, but espeically Neuropahty, FATIGUE, Pain....and many other things.. 

We have been amazed, and have ordered 2 more bottles.   I'm sooooo excited that  it looks like Wayne will NOT have to be taking NEUROTIN - a very nasty drug with so many side effects.     GIRLS, it has also CURBED my cravings and is working on my balancing my blood sugar.  

It must be BENFOTIAMINE because the regular B-1 is not water soluble and we cannot get enough in our system.  

I HEARD ABOUT IT ON Dr. OZ  :-)  - and as a FLUKE and DESPERATE for HELP, bought some immediately.   We have been amazed.  Maybe this will help someone else too.   We are early on in this trial, but so far = FANTASTIC RESULTS !       

Nancy (devoted wife of 3 X Warrior Wayne)     BLESSING AND HEALTH TO ALL !

Matt. 15:13 "Every plant that my Heavenly Father hath not planted shall be pulled up by the roots". "With God all things are possible" ! Keep the FAITH !

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thrashter's picture
Replies 7
Last reply 12/10/2012 - 1:35pm

Went to oncologist tonight with all intentions of starting Biochemo therapy. First they tell me because last surgery and melanoma now in soft tissue under arm I am now moved to high risk stage 4. Still some activity they want to watch from pet scan on Monday. They will send scans to surgeon for his opinion. We set next scan for six weeks and see if activity becomes more. No biochemo. We leave with mixed feelings. 20 minutes later in car on way home surgeon calls it is cancer to close to nerves and pectoral muscle. I say to him okay where to next. He says go get chemo now don't wait. What arise. Back to oncologist tomorrow to schedule biochemo. What a night

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Nell's picture
Replies 13
Last reply 12/10/2012 - 12:55pm

Anybody have information on how often stage IIIC travels to the organs?  I have just had a resection of the right axilla..all lymph nodes and surrounding tissue removed...Path report was 4 infected nodes..2 we knew about before we went in as they lit up on the PET/CT  scan...the other 2 were surprises as there was no sign of them on the scan.  Surrounding tissue was clear.  Just trying to get a handle on this..There is not much offered for stage III.  Hard to know what to do.

One voice can make a song; one life can change the world.

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Stage III, Unknown Primary; 1 positive node in left axilla

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lrkg1234's picture
Replies 3
Last reply 12/9/2012 - 10:38pm
Replies by: LynnLuc, Phil S

My husband Scott just did his first round of IL-2.  I have heard good things about the vaccine above and the trials that they did at MD Anderson with it.  Is it FDA approved?  How could you go about getting it with your IL-2 if you are not in a study?  Worth checking into since it has fairly significant results. 

Please let me know if anyone here knows anything about it. 

Thanks, Lisa

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Jewel's picture
Replies 11
Last reply 12/9/2012 - 7:55pm
Replies by: POW, jim Breitfeller, Jewel

Hi Jim,

Since Nov 2010 I have been on this site daily just trying to learn all the things I can, I have to admit alot of your post are quite over

my head. The dedication that you have put into learning about this disease is amazing. My husband was diagnosed in 2010 with Stage 3

3.7 depth recurrance in leg 6 months later 3/19 nodes positive in LND. Clean scans since Sept 2011. He is Braf positive.

I of course hope that it never comes back again, but of course that is rather optimistic. With all the data you have researched what order of

treatment would you suggest? I know that is a pretty heavy question and I know everyones outcome is different but I think all of us take

great comfort in your knowledge and opinion.

 

Thank you,

 

Jewel

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Randy437's picture
Replies 16
Last reply 12/9/2012 - 3:37pm

My scans yesterday were negative - NED for 3 years now after having mets surgically removed from brain, each lung and small inestine.  I also learned that there is a newer genetic test for the BRAF mutation..  Some people (I don't believe it's many) who previously tested negative are testing positive with the new test.

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audgator's picture
Replies 11
Last reply 12/9/2012 - 3:31pm

Had my 3-month scans at Moffitt yesterday and follow-up PD-1 treatment today. The scans showed continued shrinkage. Of 4 mets still in the liver, the largest is 5x5 mm. Previous lung mets are undetectable.  Yea!!!    Dan

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Tina D's picture
Replies 16
Last reply 12/8/2012 - 7:14pm

I have been thankful for all the helpful posts in response to my question abt possibly going off the Zelboraf in December if scans are still clear. We are thinking we'd like to seek expert opinion and are considering traveling to one of the bigger hospitals to seek opinion. I have heard MD Anderson mentioned favorably many times. We live in SW Indiana, but are completely willing to travel this time to wherever is best. My Oncologist ( though he is absolutely brilliant) has limited experience with Z and before making this big of a decision we'd like to talk with someone who has more experience in this area.

What are your experiences or opinions?

I will not always be this high-maintenance wink  . Just that these decisions are so big to us right now.

Thank you!!

Tina

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Snickers60's picture
Replies 6
Last reply 12/8/2012 - 6:35pm

He really had a fantastic report !!!   Dr. B  told Wayne "again" that he was one of the very few COMPLETE RESPONDER'S they had seen.   His Billirubin was up a tad, but nothing to be alarmed about.   They gave him Neurotin for the NERVE pain in his legs and feet that is keeping him up nights in crying pain.   We expected that, and are hopeful it will fix that problem, and give him some much needed relief and sleep. 

Wayne's largest tumor was in his left lung.   It was 2.6 cm.   That tumor has not shown "any activity" on PET SCANS since June.  It remains there, but has died down to 0,9, so the stinker is SHRINKING away and dying off.    YES !!!

FUTURE TREAMENT PLAN:   Dr. B says that if all PETS continue to come back NED like they have been, they will probably take him completey off ZEL at the one year mark, which would be JUNE, 2013.   AND IF the little "STINKER TUMOR" has not totally died a miserable death at that point, they would probably consider removing it through surgery, just to know it's out of there, and has no chance of WAKING UP AGAIN !   WE BELIEVE that may be the SEED, or the first of the tumors to begin the mets.  Our humble opinion.  Largest one, toughest one to get rid of.  

They were sorry to hear he had the heart cath and about the 95% blockage in the one artery, but the nurse use to be a Heart Cath Nurse and said it was great they got that fixed and he would have more energy now with blood/oxygen beginning to flow better thorugh his arteries, and we have already seen that begin to happen.   If we can get this DREADFUL LEG/FOOT PAIN under control, I think we might actually really BREATHE HERE for a while !    TEARS.............sniff, sniff.   Even good news is very emotional with this monster isn't it !!!  

We are grateful to GOD for this awesome report !!!  

WE HOPE THIS WILL "ENCOURAGE" someone - everyone -  no matter what stage and circumstance you are in.   Remember Wayne had mets to lungs, liver, sternum, spine, and bone, so this was so small fete.   We know that every GOOD REPORT we read encourages us, and we hope this one will encourage you too !   (Sometimes it's hard to post GOOD REPORTS when so many are having such tough time, but hopefully it will be a post of encouragement ! )

OK, so I think I will go cry like a baby now.......let those PENT UP EMOTIONS OUT.    He is over there finding himself a couch or recliner to take a nap in right now, and will fly back in tonight.   We'll go back in Jan. for the next PET SCAN and VISIT !   We are so very GRATEFUL for M. D. ANDERSON CANCER CENTER and our beloved Dr. B. 

GOD BLESS YOU ALL and KEEP THE FAITH !    MIRACLES HAPPEN EVERYDAY !!!

Nancy (devoted and excited wife of 3 X Warrior Wayne)  <>< 

 

 

 

Matt. 15:13 "Every plant that my Heavenly Father hath not planted shall be pulled up by the roots". "With God all things are possible" ! Keep the FAITH !

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Replies by: alpineartist, POW

I like that there is another new option for those considering Interferon...

From the press release: http://www.polynoma.com/docs/PolynomaCommencesPhaseIIIMelanomaVaccineCli...

Polynoma’s melanoma vaccine has an extensive clinical history, having been safely administered to over 650 patients. The current Phase III study of POL 103A has been initiated based on the results of two randomized, placebo-controlled Phase II trials that demonstrated strong efficacy in terms of significantly improved Recurrence-free survival (“RFS”) and overall survival (“OS”). Additionally, POL 103A has exhibited an excellent safety profile.
Dr. Chiplin commented, “POL 103A’s strong safety profile and tolerability have a significant advantage over Interferon, which has limited efficacy and poor tolerability despite its being the current standard of care for resected Stage IIb – III melanoma patients, for whom there are currently no other alternatives.”

FROM CLINICALTRIALS.GOV

http://www.clinicaltrials.gov/ct2/show/NCT01546571?term=POL+103&rank=1

Eligibility:

Ages Eligible for Study:      18 Years to 75 Years
Inclusion Criteria:
Histologically confirmed Stage IIb, IIc, III melanoma
Surgical resection within 90 days of first dosing
Persons with positive sentinel nodes must have a complete lymphadenectomy
ECOG performance status 0 or 1

Exclusion Criteria:
Any prior melanoma treatment other than surgery or regional irradiation
Diagnosis of non-cutaneous melanoma or melanoma with unknown primary origin
Use of biologic response modifiers within 60 days of first dosing
Subjects with history of other malignancy within past 5 years (with exceptions)

Our experience with melanoma: http://emandmichael.wordpress.com/

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POW's picture
Replies 10
Last reply 12/8/2012 - 11:32am

Oh, dear! Last week's scans show that my brother's melanoma is progressing on Zelboraf. One tumor in his lung increased from 3 cm to 4 cm since the last scans 2 months ago. Thankfully, no other tumors in his body or his brain are growing yet. He started Zelboraf at the end of July. He had an excellent response and very few side effects but--alas--he's becoming resistant.

His oncologist at the VA would support him going into an anti-PD-1 clinical trial at Moffitt but I don't see Moffitt listed as a site for the GSK Phase 3 trial. Does anyone  know if Moffitt is doing any anti-PD-1 clinical trials?

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Snickers60's picture
Replies 9
Last reply 12/7/2012 - 5:45pm
Replies by: madeclaire, hope4cure1, Tina D, Snickers60, audgator, POW, Anonymous

I share a little devotion on my FB page as the Lord leads and this is the one HE gave me for today after reading so many of your post last night.   I thought it might bless and encourage someone in some small way.

 

OUR GOD OF "NUMBERS" ! 

Do you know what temperature it takes to melt 24 carat gold - the purest of all gold ? "1,948 degrees F"

Do you remember how God scattered a rebellious Israel to all corners of the earth, but promised to bring them back together again to a land of full of FRUIT and PROSPERITY ? Guess what year that was ?
"1948" - the year Israel became a Nation !!! WOW - WOW is right !!!

Happens to be the year of my own birth, and the birth of my classmates. The Lord said THIS GENERATION would not pass away before all these things (prophecies) came to pass. HIS GLORIOUS SECOND COMING !!! 

IS GOD AMAZING OR WHAT ! As I grow older and a "LITTLE" wiser in HIS WORD and WAYS, I am astounded at how things "ADD UP" with our Lord. He is NOT A GOD OF HAPPENSTANCE - NOTHING IS CO-INCIDENTIAL. HE IS NOT caught off guard by anything, and EVERYTHING has a rhyme and a reason in HIS PLAN for HIS PEOPLE ! Hang tight if you are going through a dark night of the soul.....HE SEE'S IT ......HE KNOW'S ABOUT IT......and HE CARE'S !!! 

KEEP THE FAITH - DO NOT LOSE HEART - this is not the ONLY WORLD there is, and we cannot think, dream, or imagine what the one HE HAS PLANNED for us is going to be like ; but we do know it's going to be awesome, and IF HE IS TESTING YOUR FAITH to the Max, so that it might come forth as 24 CARAT PURE GOLD, take heart, know you're in HIS PERFECT WILL, and this is a process all the Saints are going through in order to be purified to receive the Kingdom He talks about in the scripture below, so that our lamps might be full of oil, ready on THAT DAY the Trumpet sounds. Even so come quickly Lord Jesus ! WE PRAY LORD, FOR YOUR KINGDOM TO COME ! 

REV. 21:4. And God shall wipe away all tears from their eyes; and there shall be no more death, neither sorrow, nor crying, neither shall there be any more pain: for the former things are passed away. 

(WHOOOOOO HOOOOO, AMEN, PRAISE THE LORD is all I have to say). :-)))

Matt. 15:13 "Every plant that my Heavenly Father hath not planted shall be pulled up by the roots". "With God all things are possible" ! Keep the FAITH !

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