Update on Lymphoma
Le Mans Master
Joined: Aug 2004
Posts: 9,420
Likes: 8
From: Southern New Jersey, The wet part at the bottom
St. Jude Donor '08-'09-'10
Hoping for everything good and positive in your treatment with Sloan-Kettering in the near future. Keep up the good work Debbi. God bless you and yours especially this year, as you recover from this nightmare of a medical adventure. 
Le Mans Master
Joined: Jun 2005
Posts: 9,948
Likes: 0
From: Hudson Valley Region, NY The "sonoma/napa" of the Northeast~~~~~ Are we there yet?
St. Jude Donor '08
Le Mans Master
Joined: Apr 2002
Posts: 6,927
Likes: 3
From: Glendale NY
St. Jude Donor '08-'09-'10-'11-'12-'13-'14-'15-'16-'17-'18- '19
What he said...
We love you.
that is all
Thread Starter
Race Director
Joined: Dec 2005
Posts: 12,078
Likes: 2
From: Palm Coast, FL
St. Jude Donor '08-'09-'10-'11-'12
Thanks everyone - I don't get on the forums much these days. Four more days to MSKCC and hopefully some real answers and less invasive treatments that work this time - I appreciate all the good wishes
Race Director
Joined: Aug 2004
Posts: 14,639
Likes: 39
From: Winston-Salem North Carolina
St. Jude Donor '08-'09
Safety Car
Joined: Jul 2006
Posts: 4,325
Likes: 0
From: You can't get there from here NJ
St. Jude Donor '08-'09
They know their stuff over there. Someday this will just be a memory for you, but you'll think back to all the folks that cared enough to pray for you and wish you well. It's because we all appreciate who you are Deb, and the kind of friend you are to us.If we could all just will you into getting better, you'd be tearing up the roads right now, making us laugh and shake our heads.
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Thread Starter
Race Director
Joined: Dec 2005
Posts: 12,078
Likes: 2
From: Palm Coast, FL
St. Jude Donor '08-'09-'10-'11-'12
For those of you following my thread.....first, thank you so very much.
Second, I owe an incredible amount of thanks to Barry for spending half the day at Sloan Kettering with me and for keeping me laughing all the way through the appointment (what gave it away? the skinny jeans?
) This is not a "happy place" to be so having him there made all the difference in the world. I place a huge burden on his shoulders with this whole thing and I know it hasn't been easy and for that I am eternally grateful xoxo
We met with the Chief of the Lymphoma Dept (as well as one other doctor and whole league of nurses). After years of seeing doctors who I felt knew less than me about this, the doc quickly tested my knowledge of what I knew and then let me know in no uncertain terms that I basically knew nothing!
He offered several treatment options as well as different combinations of treatments that could be done in addition to several clinical trials coming up in the next few months. He seemed very optimistic about them all.
Pending another clean scan (which I go for next Friday) he is going to start me on a treatment of Targretin, a chemical retinoid in the Vitamin A family. It could take a few months before we see a difference and its an EXTREMELY expensive drug, but has none of the side effects or long term damaging effects that chemo does. The plan is to go from there to see what works, what doesn't, what can be added etc. The idea is to find a "long term" treatment since there is no cure and to exhaust all options before opting for a complete stem cell transplant or bone marrow transplant.
Its far from over, but this is the most promising news I've heard in four years!
Now if the weather would clear up just a little I could go lay some rubber with this shiny (well sort of, lol) red vette that was left in my possession for a week or two
As always thank you for the kind words of encouragement and wishes
Second, I owe an incredible amount of thanks to Barry for spending half the day at Sloan Kettering with me and for keeping me laughing all the way through the appointment (what gave it away? the skinny jeans?
) This is not a "happy place" to be so having him there made all the difference in the world. I place a huge burden on his shoulders with this whole thing and I know it hasn't been easy and for that I am eternally grateful xoxo We met with the Chief of the Lymphoma Dept (as well as one other doctor and whole league of nurses). After years of seeing doctors who I felt knew less than me about this, the doc quickly tested my knowledge of what I knew and then let me know in no uncertain terms that I basically knew nothing!
He offered several treatment options as well as different combinations of treatments that could be done in addition to several clinical trials coming up in the next few months. He seemed very optimistic about them all.
Pending another clean scan (which I go for next Friday) he is going to start me on a treatment of Targretin, a chemical retinoid in the Vitamin A family. It could take a few months before we see a difference and its an EXTREMELY expensive drug, but has none of the side effects or long term damaging effects that chemo does. The plan is to go from there to see what works, what doesn't, what can be added etc. The idea is to find a "long term" treatment since there is no cure and to exhaust all options before opting for a complete stem cell transplant or bone marrow transplant.
Its far from over, but this is the most promising news I've heard in four years!
Now if the weather would clear up just a little I could go lay some rubber with this shiny (well sort of, lol) red vette that was left in my possession for a week or two
As always thank you for the kind words of encouragement and wishes
Le Mans Master
Joined: Aug 2004
Posts: 9,420
Likes: 8
From: Southern New Jersey, The wet part at the bottom
St. Jude Donor '08-'09-'10
For those of you following my thread.....first, thank you so very much.
Second, I owe an incredible amount of thanks to Barry for spending half the day at Sloan Kettering with me and for keeping me laughing all the way through the appointment (what gave it away? the skinny jeans?) This is not a "happy place" to be so having him there made all the difference in the world. I place a huge burden on his shoulders with this whole thing and I know it hasn't been easy and for that I am eternally grateful xoxo
We met with the Chief of the Lymphoma Dept (as well as one other doctor and whole league of nurses). After years of seeing doctors who I felt knew less than me about this, the doc quickly tested my knowledge of what I knew and then let me know in no uncertain terms that I basically knew nothing!
He offered several treatment options as well as different combinations of treatments that could be done in addition to several clinical trials coming up in the next few months. He seemed very optimistic about them all.
Pending another clean scan (which I go for next Friday) he is going to start me on a treatment of Targretin, a chemical retinoid in the Vitamin A family. It could take a few months before we see a difference and its an EXTREMELY expensive drug, but has none of the side effects or long term damaging effects that chemo does. The plan is to go from there to see what works, what doesn't, what can be added etc. The idea is to find a "long term" treatment since there is no cure and to exhaust all options before opting for a complete stem cell transplant or bone marrow transplant.
Its far from over, but this is the most promising news I've heard in four years!
Now if the weather would clear up just a little I could go lay some rubber with this shiny (well sort of, lol) red vette that was left in my possession for a week or two
As always thank you for the kind words of encouragement and wishes
Second, I owe an incredible amount of thanks to Barry for spending half the day at Sloan Kettering with me and for keeping me laughing all the way through the appointment (what gave it away? the skinny jeans?
) This is not a "happy place" to be so having him there made all the difference in the world. I place a huge burden on his shoulders with this whole thing and I know it hasn't been easy and for that I am eternally grateful xoxo We met with the Chief of the Lymphoma Dept (as well as one other doctor and whole league of nurses). After years of seeing doctors who I felt knew less than me about this, the doc quickly tested my knowledge of what I knew and then let me know in no uncertain terms that I basically knew nothing!
He offered several treatment options as well as different combinations of treatments that could be done in addition to several clinical trials coming up in the next few months. He seemed very optimistic about them all.
Pending another clean scan (which I go for next Friday) he is going to start me on a treatment of Targretin, a chemical retinoid in the Vitamin A family. It could take a few months before we see a difference and its an EXTREMELY expensive drug, but has none of the side effects or long term damaging effects that chemo does. The plan is to go from there to see what works, what doesn't, what can be added etc. The idea is to find a "long term" treatment since there is no cure and to exhaust all options before opting for a complete stem cell transplant or bone marrow transplant.
Its far from over, but this is the most promising news I've heard in four years!
Now if the weather would clear up just a little I could go lay some rubber with this shiny (well sort of, lol) red vette that was left in my possession for a week or two
As always thank you for the kind words of encouragement and wishes
Retired Admin
Joined: Apr 2002
Posts: 46,405
Likes: 34
Founder St. Jude Fundraiser
Stay strong, and we'll wait to hear about your next clean scan next Friday
DEB
PHILIPPIANS - Chapter 4; verses:
6: Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God.
7: And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.
6: Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God.
7: And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.