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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triciad's picture
Replies 9
Last reply 12/11/2012 - 4:28pm

I was wondering if anyone has heard from LynnLuc.  I believe she was in an AntiPD1 trial at Moffitt and had great success.  I've seen several posts with questions about his new treatment.  I know it't the holidays, but perhaps she will weigh in.  Sending prayers Lynn that you are having continued success.

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Anonymous's picture
Anonymous
Replies 2
Last reply 12/12/2012 - 4:15pm
Replies by: mcanova, PSD

This might sound like a crazy question, but I had 2 nodes removed after they did the lymphangioscintography with radionuclide injections surrounding the melanoma excision site.  In the pathology report they describe the nodes as "yellow-tan, pink-tan" lymph nodes.  Wouldn't the nodes they removed, if they removed the right ones, be blue in color (from the radionuclide)? 

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Caretaker's picture
Replies 15
Last reply 12/12/2012 - 12:15am

Hello,
I wrote at the end of October when my beloved, three months on Zelboraf, started exhibiting Alzheimer type symptoms. Everything spiraled out of control thereafter, until he literally lost his mind and died a violent death on Nov. 17. As my sweetheart patiently waited for Zelboraf to work, it stopped what little it was doing. He had 10 new brain lesions and the melanoma was in his spinal fluid. I actually lost him weeks before his death, as he was hallucinating, needed a "sitter" while in the hospital, and couldn't talk or meaningfully communicate. Two grand mal seizures landed him another hospital stay, during which he lost all faculties, including the ability to swallow.
At this point, there was nothing left except to take him home and watch him starve and dehydrate to death for six days. He had another seizure four hours prior to death, at which point green bile constantly oozed out of his mouth. Immediately following his last breath, black liquid came out, causing the hospice nurse, a great-grandmother, to declare, "Oh my God, I've never seen anything like this."
In the end, Zelboraf gave him a decent 5-6 days, if you don't factor in fatigue. It stopped working within three months and, as others have noted, the cancer ate him up with a vengeance thereafter. The fellow who wrote that his oncologist told him Z is an end of the road drug & wouldn't let him take it should go kiss his oncologist's feet and praise that person's honesty.
I write to beg you to PLEASE PLEASE PLEASE do your research. Question your oncologist; hold his/her feet to the fire. We had absolutely no idea the end would come some quickly and horribly with all options immediately gone, including the ability to say goodbye.
I miss him terribly. He won't see his 60th birthday. We won't grow old together. PLEASE don't let this happen to your loved one/s.
Caretaker

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KMT2003's picture
Replies 6
Last reply 12/11/2012 - 1:02pm

I haven't posted in awhile but I hope everyone is having a good holiday season! I have been taking "Z" now since Oct. 18 and in the beginning the side effects were very minimal. However, now I think the side effects are showing up more...rash, red bumps on skin with a few new freckles/moles that I am watching, very sore feet (soles), sore joints and knuckles on fingers are swollen (can't take rings off), tired more and low grade fever/chills at night only (99-100). On a few of the red bumps on my legs I can feel a small pea size bump just under the skin. Are all these side effects normal and how long do they normally last? I was hoping they would fade away after awhile. I really don't want to have to cut my rings off so I am waiting to see if it goes down. Any ideas, suggestions or input on your experience with Z will be helpful. Thanks!

Kelly
Stage lV
Fight the beast with all we got!

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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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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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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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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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Tracy Chicago's picture
Replies 6
Last reply 12/7/2012 - 2:25pm
Replies by: audgator, rlowe, Tina D, Anonymous

So I have my cat scan today and I'm trying to suck down this disgusting barium drink and dreading the whole process, when I thought, hey, let's try to laugh about this and come up with new flavor ideas for barium.

What flavor do you wish barium came in? My vote is for a nice Pinot Noir from Napa Valley. Comment below with your suggestion!

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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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TSchulz's picture
Replies 8
Last reply 12/17/2012 - 3:00pm

Hi everyone, 

It has been awhile since I've updated my status here but I figured I should share my continued good results from my NIH TIL treatment.  

Just to recap - I completed the randomized TIL trial at NIH in late May of 2012.  I randomized to the non-radiation arm of the study.  I had my 4th follow-up visit last week and all of my tumors have shown remarkable response thus far.  

The scans showed that over 90% of the total tumor volume is gone. All that remains is a smudge of the big tumor in my right lung (maybe just scar) and a spot in my femur that hasn't really changed much in over 1.5yrs of watching it. Two more of the tumors they've been following are no longer seen. Bye-Bye suckers.... 

The other good news is (the physicians have never said this to me before)... They said that they've found if they can get all of the cancer to go away with this treatment - it usually stays away! Of course, no guarantees but I'll take any reassuring words. 

I go back in another 2 months for studies and scans and am looking forward to spreading these trips out even farther. 

 
My family has so much to celebrate this year. When I was first diagnosed as Stage 4 my wife was 7 months pregnant and my little girl turns 3 next week. I am lucky! 
 
 
Happy holidays to you all and may 2013 be one filled with positive results for this community. 
Troy

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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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Gene_S's picture
Replies 2
Last reply 12/7/2012 - 12:42am
Replies by: DeniseK, Snickers60

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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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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Snickers60's picture
Replies 7
Last reply 12/6/2012 - 11:14am

And is not feeling well at all.   I cannot go because I am too ill and I'm anxious after reading such disappointing results for folks on

Zel.     He is still having horrible leg and foot pains.   The strange thing is it hurts the most after he goes to bed.   Shooting pain....terrible,

terrible, CRYING shooting pains.   While he is up on his feet they seem to be better, but the minute he tries to lie down and get rest, they

start and are so very bad.   WE DO NOT KNOW WHAT IS CAUSING THEM.

He had the before they did the heart cath and stent 2 weeks ago, so we do not THINK it is related to that.  We know there's a hand/foot

syndrome with Zel, but this is even different from that.   He is worried he may not be able to take full dosage much longer and IF it is

the ZEL causing them.

I'm dreadfully distressed for him to go alone.   We do nothing without each other, but I've just been so sick, I cannot go.  Waiting on knee

surgery soon.    He will fly in and out in one day which will really be hard on him.   LONG DAY !   Thank you for any prayers you might

say for him.     GOD BLESS ALL OF YOU WONDERFUL FIERCE FIGHTERS OF THIS MONSTER BEAST ILLNESS !    You are all

HEROES in my book !     LORD, give us all strength to endure these very hard trials.   

Nancy and Wayne (3 X Warrior)   <>< 

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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