Forum Replies Created
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- January 22, 2014 at 2:20 am
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 )
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- January 22, 2014 at 2:20 am
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 )
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- January 22, 2014 at 2:20 am
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 )
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- January 30, 2014 at 1:16 am
Alrighty then……..IGNORED ……..did my best and that's all one can do. ???????????
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- January 30, 2014 at 1:16 am
Alrighty then……..IGNORED ……..did my best and that's all one can do. ???????????
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- January 30, 2014 at 1:16 am
Alrighty then……..IGNORED ……..did my best and that's all one can do. ???????????
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- January 23, 2014 at 2:41 pm
Ha Ha Ha LINNY ! You would be surprised how this little BIRD got back here. :-)))))))))) Hope you are doing well. 🙂
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- January 23, 2014 at 2:41 pm
Ha Ha Ha LINNY ! You would be surprised how this little BIRD got back here. :-)))))))))) Hope you are doing well. 🙂
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- January 23, 2014 at 2:41 pm
Ha Ha Ha LINNY ! You would be surprised how this little BIRD got back here. :-)))))))))) Hope you are doing well. 🙂
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- January 22, 2014 at 10:11 pm
Tina – SOOOO Happy to hear your GOOD NEWS ! We all need to hear the GOOD REPORTS ! It gives those (all of us) HOPE when going through a tough time. I'm always HAPPY for folks when they get a good report. ROCK ON TINA !!!!! GOD HAS BLESSED YOU – ENJOY !
Nancy (Devoted wife of 3 X Warrior Wayne)
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- January 22, 2014 at 10:11 pm
Tina – SOOOO Happy to hear your GOOD NEWS ! We all need to hear the GOOD REPORTS ! It gives those (all of us) HOPE when going through a tough time. I'm always HAPPY for folks when they get a good report. ROCK ON TINA !!!!! GOD HAS BLESSED YOU – ENJOY !
Nancy (Devoted wife of 3 X Warrior Wayne)
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- January 22, 2014 at 10:11 pm
Tina – SOOOO Happy to hear your GOOD NEWS ! We all need to hear the GOOD REPORTS ! It gives those (all of us) HOPE when going through a tough time. I'm always HAPPY for folks when they get a good report. ROCK ON TINA !!!!! GOD HAS BLESSED YOU – ENJOY !
Nancy (Devoted wife of 3 X Warrior Wayne)
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- January 22, 2014 at 9:12 pm
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 ! :-))))
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- January 22, 2014 at 9:12 pm
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 ! :-))))
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- January 22, 2014 at 9:12 pm
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 ! :-))))
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