UPDATE-Aldakota22

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1/21/2014 5:55pm
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Replies: 30

Results of brain MRI & docs visit not very good from 01/15/14. Told to get affairs in order.Not words anyone really wants to hear who has mel stage 4.Melanoma has traveled to the brain but not as tumors but as mel cells into the cellephane wrapper around it.Meaning WBR would not be of any use cause there will be mel cells in the spinal cord that would only get back in.The thing I am fighting with is the addition of a Mekinist drug with the Tafinlar drug .Dual treatment was just approved this 01/08/14/.Praying that this works.Still have high PMA and faith in healing miracles.Will see Dr Pavlick on 01/29 than brain MRI last week of Feb.Still feel really fine.Major problem is constpation & anything I drink or eat taste really horrible.Force myself to eat.Any ideas of what I should do? Get another opionion or maybe a trial.Appreciate oppions and prayers.We will beat the beast. thanks      aldakota22

awillett1991 - (1/21/2014 - 6:51pm)

So very sorry to hear this Al! I PMd you.  Keep fighting!

Amy

Janet Lee - (1/21/2014 - 7:33pm)

Al, sorry to hear this news. Unfortunately, I don't have much to add, except to offer you our support and prayers. I've learned over the past year to keep on plugging, keep on hoping, keep on praying.

Janet Lee

tschmith - (1/21/2014 - 8:05pm)

I've heard great things about Dr. Pavlik.  You are in my prayers.  I will be watching for further posts from you.  Best wishes!!!!

Terrie

Snickers60 - (1/21/2014 - 9:20pm)

AL, this is what Wayne has.  It's called LEPTOMENINGEAL DISEASE - same thing Valerie Harper has and there's only one treatment for it.  We are in MDA hospital NOW with Wayne getting his 16th treatmetnt of IL-2 into the Skull OMAYA PORT whereby they put it into the LINING OF THE BRAIN and it flows down to the SPINAL CORD and FLUID.   THIS IS THE ONLY HOPE THERE IS FOR IT.   Get yourself to MDA to see DR. Papadolpus ASAP.   You cannot mess with this one.  It's a DEATH SENTENCE and can be in as little as 4-12 weeks.  Since you are not SYMTOMATIC, you have a great chance of being helped.  We got just report last week that Wayne's has STOPPED GROWING and NONE IN THE SPINAL CORD.   We have been at MDA Houston since early Nov.   We RUSHED back over here in 6 days after learning how quickly and deadly it is.   Only 3-5% percent of the people get it.     PLEASE - do not pass go - Do not collect $200 - GET ON THE PHONE and GET AN APPT. here with Dr Papa ASAP.    He developed this treatment and now SEVERAL HERE DO IT but no where else.    It has been a long hard frantic and panicking time for us, but the REPORT last Wednesday was worth it all.   You will need to be here several months.   Start PACKING - there is HOPE - but you must move very fast.   One young man we know passed away after 12 weeks - was diagnosed right after Wayne.  NONE OF THE STUFF you are talking about will help LEPTO.   Not Taflinar - not WBR - none of that.  You need IL-2 through an intrathecal omaya port straight into the skull.   Dr. Papa said Wayne has done better than anyone he has ever seen.  YOU ARE TOUGH and CAN DO THIS TOO. 

I hope Amy gave you my personal email if you want to chat.   PLEASE - DO NOT WAIT.   This is truly a drastic and fast moving cancer once it's in the lining of the brain.   You can do your research on LEPTOMENINGEAL DISEASE, tho there's really not a LOT out there. 

I'll PM you my email address too. 

THERE IS HOPE, but you must HURRY !!!!!!!!!!!!!!   Sorry to scare you, but it was FEAR that moved us to

HOPE YOU WILL GET HERE AND GET THIS TREATMENT ASAP !    

Nancy (devoted 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 !

Owl - (1/22/2014 - 2:04am)

Dear Al,

so sorry to hear that MRI didn't went well. I trust in your fighting spirit, keep on kicking Mel, you have done this so well in the past. Nancy's mail shows that this is the right place to be.

My thaughts are with you,

Jenny

GAngel - (1/22/2014 - 2:18am)

Dear Al,

I'm so sorry to hear the news, I'm praying for you. It sounds like you need to contact the doctor recommended by Nancy! What a blessing that she read your post and was able to get this information to you so quickly! That is not a coincidence. It is the Lord at work, guiding you in the right direction. I believe that with all my heart.  God's speed in getting you there!

Stay strong and as you so eloquently say, "Beat the Beast!"

Blessings and love to you!

 

Gina 

"Don't worry about anything; instead, pray about everything. Tell God what you need, and thank Him for all He has done."- Philippians 4:6

JerryfromFauq - (1/22/2014 - 3:57am)

The IL-2 treatment by Dr Papa is the treatment that cleared Amy Griggs Busbs's Lepto back in 2010 before her body tumors started growiing like mad when GKS refused to return her back into their BRAF trial that had been working outstaning for her, before the Lepto arose.

I'm me, not a statistic. Praying to not be one for years yet.

JerryfromFauq - (1/22/2014 - 4:02am)

See : 

THANK YOU, AMY GRIGGS BUSBY
Posted By

1/15/2014 7:45pm

I'm me, not a statistic. Praying to not be one for years yet.

Fen - (1/22/2014 - 6:22am)

Wish I had info for you, Al, but all I have is prayers.  Nancy's post is encouraging and i hope it's possible to do the treatment.  Keep us posted, please.    Fen

Snickers60 - (1/22/2014 - 4:12pm)

AL - they also need to do a Lumbar Puncture to see if they can find any MEL CELLS in your spinal fluid and they also do MRI'S on Wayne's entire spine. 

 

Wayne was still NED from NECK down in June 2013 - then came two brain mets that he had Gamma Knife on.  Did well and recovered quickly.   THEN CAME SEPT. 2013.   The brain MRI showed very early growth in the meninges (the lining) around the brain.   It was decided by his Doc at that time to watch it for a month.  We did - came back in Oct.   There was a LITTLE progression and so the DUCK finally quacked to tell them it was LEPTO.   WAYNE STILL HAD NO SYMPTOMS !   GOOD THING !   REALLY GOOD THING !  

It was decided by our Doc that Wayne do WBR OR SEE DR. PAPA soon about his treatment  - he was already fitted for the frame, when JERRY (here) wrote to tell us what that treatment was and about AMY he mentions.   I felt a STRONG PUSH OF THE LORD to GET IN THERE THEN and SEE DR. PAPA before we left Houston.   DID IT - SAW HIM at 4 PM on that Friday afternoon before flying home in a panic and very discouraged. 

He explained the IL-2 Treatment to us and Wayne decided to go with it.   There are many problems with WBR as you already know.   

So, we head home on next flight, and in 6 days we were LIVING IN HOUSTON !   He went through about 2 weeks of every kind of test you can imagine.  DR. PAPA did a good job of studying him and all of his history.  He felt Wayne was an IDEAL candidate for the LEPTO treatment.   Turns out he was right.  Having NO SYMPTOMS is the key.   Catching it early. 

He went into the hosptial on Nov. 24, 2013 for the induction treatment.  TOUGH WEEK, but not so unbearable as not to do it.   It was every day that week.  Second week - only 3 times - third week - only 3 times. and one more time.   Upon discharge 3 1/2 weeks later, Dr. Papa thought he was doing SO WELL with it that he skipped doing it twice a week for 2 months and went straight to doing it once a week    Today, he did the second of EVERY TWO WEEKS.   Then we weill move out to every three weeks OR once a month after 2 months of EVERY TWO WEEKS.   Hope I did not lose you get - but you get the jest.   The treatments get further and further apart.   The hope is to get to every 3 months.

There is a man who is 15 YEARS OUT doing this treatment and HIS SISTER also had it and is 10 YEARS out and living life.    There are MANY who are 5 plus years out. 

The port was no biggee to put in and I can send you all the pics you want.   Wayne never even took a pain pill afterwards.   Can barely see it through his ZEL CURLS.   :-) 

There are only 3 kinds of cancer that can produce LEPTO.   Lung, Melanoma and breast.  For some reason they will seed off to the lining of the brain.   LIke Valerie Harper - had LUNG CANCER - she has LUNG CANCER IN ESENCE around the lining of her brain.   Wayne has Melanoma around the lininig of his and so on with the breast cancer.   Only 3-5% of people get this.  Aren't we the LUCKY ones !   :-(((

They have kept Valerie alive by giving her the LUNG CANCER DRUG she was on back in 2010 through a port in her spine - SO WE UNDERSTAND.   All we can find on it.   

BUT YOU NOW UNDERSTAND A LITTLE MORE ABOUT IT. 

I think Doctors are missing this 90 to nothing.   I can't believe they did not even GIVE YOU THE NAME OF It  .    FIRE THEM !!!!!!!!!!!   :-))))   Seriously I am enraged that they did not know about this treatment at MDA to tell you all this himself.   

I, like others here, believe that GOD sent us this treatment and is also sending you the KNOWLEDGE to make DECISIONS about your health that ONLY YOU CAN MAKE, but we all know KNOWLEDGE IS POWER and I am so grateful that Jerry pushed us on to see Dr. Papa before we left that trip or we may have gone the long way around with WBR FIRST and then THIS - TIME is of the ESSENCE and that would not have been a good thing.   GOD LEADS HIS CHILDRES and IS GOOD TO DIRECT THEM even as half crazy as we were.   It was a very devastating time for us.   AS YOU ARE NOW FEELING....but I pray if I have done nothing else - I have given you HOPE ! 

Wayne is willing to talk to you and tell you anything you want or need to know about it.   We can also direct you about apartments etc. here.   Had some errors in the beginning, but are happy in a one bedroom right around the corner from MDA.   We have not been back home.   Will probably be here about 2 more months and then will consider moving here since this is a LIFETIME TREAMENT.   BUT HEY - only 4 times a year is not bad to GET YOUR LIFE BACK !  

Pray you are having a good day.   Pray the Lord will give you the direction and answers you need to make this most important and CRITICAL QUICK DECISION. 

Love in Christ JESUS,

Nancy (Devoted wife of 3 X Warrior Wayne) - talk about a warrior - he is now a GENERAL !  :-))))

 

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 !

jjw2014 - (5/20/2014 - 3:32pm)

Nancy,

Hi my name is Jennifer and I have a sister who has Melanoma (MD Anderson) and her husband also has Melanoma at MD anderson.  Both have STage VI.  My brother in law is 51 and was just diagnosed today with Lepto Meningeal.  He has to do a spinal tap to confirm.  

 

I so hate to bother you but they have two small children and are fighting for their lives. 

 

Can you possibly email me back to let me know you received this email and then possibly answer questions about the IL2 and Lepto. 

 

Thank you!

Jennifer Whitehouse

954 218 3957

Tina D - (1/22/2014 - 4:11pm)

Al, I am very sorry to read this update. Looks like Nancy may have a good direction for you to look in to. I will be praying for you as you make these decisions and move forward.Yes, God does still do miracles... Please keep us posted.

With Prayer, Tina

kpcollins31 - (1/22/2014 - 4:36pm)

Al - Very sorry to hear this. I will keep you in my thoughts and prayers.

Kevin

 

Linny - (1/22/2014 - 6:06pm)

Al, you just got an earful of grat advice from Snickers/Nancy. :-)

Nancy hasn't been posting much recently and she really showed up at a good time with an update on Wayne. It sounds like you and he need to become good buddies. So, please get yourself down to MD Anderson ASAP and BEAT THE BEAST!!!!

 

Stage III, Unknown Primary; 1 positive node in left axilla; currently participating in GSK DERMA (MAGE A3 vaccine) trial

Brendan - (1/22/2014 - 6:36pm)

Al,

Sorry to read about your latest battle. Keep fighting, brother.  Beat the Beast!

Brendan

jahendry12 - (1/22/2014 - 8:42pm)

Keep fighting Al.  You're in my prayers.

Snickers60 - (1/23/2014 - 9:41am)

Ha Ha Ha LINNY !   You would be surprised how this little BIRD got back here.   :-))))))))))    Hope you are doing well.   :-)

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 !

bj63 - (1/23/2014 - 10:31am)

Sorry to hear about your latest developments. I'm kind of in a similar boat.  I have brain mets - too many for SRS/Gamma Knife at this time.  I did 3 weeks of WBR when they were first found at the end of October.  And my doctor just switched me from vemurafenib to the dabrafenib about 6 weeks ago and my last MRI shows that I appear to still be responding.  I'll be adding the trametinib next week.

My Oncologist suggested that I see Dr. John Kirkwood at UPCI, who I met with last week.  He and I discussedd a couple of potential alternatives if the BRAF/MEK drugs should stop working, including Ipi or possibly some potential PD1 trials.

As for the taste problems, when I first had WBR, my sense of taste was completely wiped out and the only thing I really could stomach was soup.  Most things just tasted like salt.  I had to force myself to eat and to drink water.  I could kind of taste hot peppers and hot pepper sauce, so I was adding Tobasco sauce to everything.  And I must have eaten about 5 gallons of soup over those two months.  Getting more liquids probably will help with your digestive issues, too.

I hope you find these suggestions helpful!

bj63

Sometimes no news is the best news!

bj63 - (1/23/2014 - 11:41am)

One Correction: I posted "UPCI" but it's actually "UPMC" (University of Pittsburgh Medical Center).

Sometimes no news is the best news!

Maureen038 - (1/23/2014 - 8:16pm)

You have gotten some wonderful advice Al. Keep fighting and let us know what decision you have made for treatment. Prayers being sent your way!

Maureen

Maureen038 - (1/23/2014 - 8:16pm)

You have gotten some wonderful advice Al. Keep fighting and let us know what decision you have made for treatment. Prayers being sent your way!

Maureen

JerryfromFauq - (1/27/2014 - 10:33am)

Al, Nancy, the Lord sure does work in mysterious ways!!  He sure uses some amazing people (Angels) to get us going.  Al, Nancy and Wayne are our warrior leaders in education on this treatment.  They are amaziing fighters, that I have much respect for.

I'm me, not a statistic. Praying to not be one for years yet.

Dick_K - (1/28/2014 - 9:38am)

Al,

Ugh, so very sorry to read this update but glad to see there is still PMA.  You’ve have a number of items to talk to Dr. Pavlick about tomorrow and I hope whatever course you pursue, it is successful.

I see Dr. Pavlick for a normal follow-up tomorrow at 9:00 am; if your appointment is in the morning, I’ll try to meet you.  If I don’t, best of luck to you. 

aldakota22 - (1/28/2014 - 2:08pm)

Thanks Dick. Always consider you as the man to strive to be like.Did have a good run with "Z" for about 20 months before brain issues kicked in starting with tumors that was gamma knifed.Then this other mess took over.Still keeping my PMA and faith high.My visit with Dr Pavlick is tommorrow at 2:30 PM.Love to meet the "Z" Poster boy.Prayers you will be the part of the answer to cure this beast.Long healthy and happy life Dick.Fellow fighter & freind ...aldakota

Snickers60 - (1/29/2014 - 8:16pm)

Alrighty then........IGNORED ........did my best and that's all one can do.  ???????????

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 !

aldakota22 - (1/29/2014 - 9:51pm)

Dear Snickers 60, I say  in no way meant to ignore  you or anyone here.Will fill you in on doctors report.Just trying to sort things out.Beleive me so much to sort through.So Happy Wayne is doing so good.Find all the people here as a great means of support as I fight this mess.Love all you fellow fighters and care givers.Always in my prayers.Will update tommorrow Thursday. Beat  the Beast.     Aldakota22

KYDonna - (2/6/2014 - 2:49pm)

Al -

I am new to this forum -  I joined after doing some Googling this morning, and one of your posts popped up in the results. So, thank you, even though you didn't know you helped me!

My husband Darryel was diagnosed in January 2012 with Stage IV. Mets to liver, spine, pelvis, etc. He started on Z in February and seemed to be having good results, but had so much pain from the hyperkeratosis and joint pain that a week before this Thanksgiving (where we had a clean CAT scan!) we talked to the on.c about taking a short break. I had read that some patients had good success with keeping the side effects at bay by doing so. Doc agreed to a 3-week break. Day after Thanksgiving, hubby had something like a mini-seizure, turned out to be brain mets. He went through WBR, stopped Z and started on Tafinlar.

Now that I've bored you with all my details, :c) I wanted to touch base with you because your situation is very familiar to my husband's. We are part of a cancer support network, but it is not for melanoma specifically, and so I didn't really have anybody else to talk to about our specific situation.

Darryel's having the same problem with eating, which stinks. While he was off the meds, he got his sense of taste back and was really enjoying food again! I don't have any great suggestions to cope with this. I've found that what might taste good one day might taste like cardboard the next, so i just try to keep a lot of different types of food on hand. I don't worry so much about whether it's processed or not. Healthy food is useless if it doesn't get eaten!

As to trials, there is a company near us (Covington, KY) called Bexion which is hoping to get a product to Phase I trials this spring. I went to hear a rep from the company at one of our cancer support group meetings last year, so now of course I don't remember the details!), but basically they are hoping that they have a way of causing cancer cells to naturally die. It sounds really promising!

Will keep you in my prayers!

 

KYDonna - (2/11/2014 - 11:53am)

Al- 

Checking in to see how you're doing!

Anonymous - (2/11/2014 - 12:00pm)

Anyone heard from Al....

Nancy Gilbert how is Wayne doing??? Did Al ever contact you.

Wayne is in my prayers.

God Bless

kellygrl - (3/2/2014 - 6:46pm)

So sad to hear this......

Prayers, Kelly