Update on Lymphoma
Retired Admin
Joined: Apr 2002
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Founder St. Jude Fundraiser
It' good to see that you're feeling good.
Keep up the fight and know that you're never alone
As always, you're in my thoughts and prayers - God bless.
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Race Director
Joined: Dec 2005
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From: Palm Coast, FL
St. Jude Donor '08-'09-'10-'11-'12
I take my victories one small one at a time!
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Race Director
Joined: Dec 2005
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From: Palm Coast, FL
St. Jude Donor '08-'09-'10-'11-'12
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Joined: Jul 2004
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From: .... NJ
Cruise-In VII Veteran
St. Jude Donor '05 thru '19
Drifting
Joined: Jan 2001
Posts: 1,879
Likes: 21
From: Bradenton Florida
Got the results back from that scan - it looked worlds better than the last but still showed some light activity in the lymph nodes in the groin area, but nothing that would alarm them so that was good news!...
...I went for treatment #5 this past Monday - as long as I'm on some form of chemo, it seems to keep it in check. The doctor is thinking that the trial drug (SGN-35) will be approved for mainstream use by the end of this month so he's scheduled me for one more treatment. As long as its approved by the FDA, after the next treatment he is going to take me off of it to see what happens......this is the nail biting part......
If it comes right back again as it did the first time, then I'll be able to go back on the SGN-35 and if its out of the clinical phase, we can then "tailor" it more to my specific needs........maybe every other month as opposed to the every three weeks that I get it now.
But overall, aside from fatigue a few days after treatment and some minor tingling in my feet, I feel pretty good!!!
Thank you all so very much!
...I went for treatment #5 this past Monday - as long as I'm on some form of chemo, it seems to keep it in check. The doctor is thinking that the trial drug (SGN-35) will be approved for mainstream use by the end of this month so he's scheduled me for one more treatment. As long as its approved by the FDA, after the next treatment he is going to take me off of it to see what happens......this is the nail biting part......
If it comes right back again as it did the first time, then I'll be able to go back on the SGN-35 and if its out of the clinical phase, we can then "tailor" it more to my specific needs........maybe every other month as opposed to the every three weeks that I get it now.
But overall, aside from fatigue a few days after treatment and some minor tingling in my feet, I feel pretty good!!!
Thank you all so very much!
Approval for SGN-35 (Adcetris) is looking very good by month end. The review board meeting in July voted 10-0 unanimously in recommending approval to the FDA. The FDA alone decides on approval, but the recommendation from the review board carries alot of weight.
Good luck and keep up the fight
.Charlie
Drifting
Joined: Jan 2001
Posts: 1,879
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From: Bradenton Florida
Hi deb, hope you're doing well. You may have already heard the great news that the FDA gave Adcetris (SGN-35) approval on Friday afternoon. Good luck with the treatments and please keep us posted .
Charlie
.Charlie
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From: Palm Coast, FL
St. Jude Donor '08-'09-'10-'11-'12
If this works.......it could mean the beginning of a "new" life for me!!!
How in the world did you hear about this so darn fast?
Racer
Joined: Apr 2008
Posts: 284
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From: Wildwood Florida
St. Jude Donor '08-'09
Hi, Deb! Sounds like things are finally going your way! This is great news about your drug being approved for mainstream use. At least then you should be able to get some help from your heath insurance. It is wonderful to hear that you are feeling better and you have got this thing on the run again!
Drifting
Joined: Jan 2001
Posts: 1,879
Likes: 21
From: Bradenton Florida
I've been following Seattle Genetics for almost 10 years now. Having lost both my sister and my mom to lymphoma, I researched and came upon the work that they were doing. What I read really impressed me, so I purchased some stock in the company, hoping that they would be successful in finding a treatment/cure. Sadly it is too late for my family, but I am very excited about the prognosis for others like yourself.
Keep up the fight Deb, I see good things in your future.
Charlie
Keep up the fight Deb, I see good things in your future.
Charlie
Safety Car
Joined: Jul 2006
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From: You can't get there from here NJ
St. Jude Donor '08-'09
WOW!!!!! Charlie, no I didn't know! Thank you so much for keeping up with the progress of this new drug and with me!! This is such exciting news! This means that my last treatment will be this coming Monday. Its both exciting and nerve wracking because I'll get to stop treatment, yet on the other hand I'll have to hold my breath every day waiting to see how long it pushes this into remission.
If this works.......it could mean the beginning of a "new" life for me!!!
How in the world did you hear about this so darn fast?
If this works.......it could mean the beginning of a "new" life for me!!!
How in the world did you hear about this so darn fast?
Ahem.....I told you the NECF Mojo was workin'.
No one listens to me. 
Well, I told ya so. Really great news. I am so happy for you Deb.
Advanced
Joined: Jul 2011
Posts: 93
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From: Western PA
brother
Deb , i am glad u seem to being doing better it seems they are on the right track.
my brother is to start autologous stem cell transplantation shortly. I guess they plan to hit him hard with chemo ( he just finished radiation) then and put in the stem cells he donated months ago. It seems like a very serious process he will be in the hospital for at least a couple weeks with limited visitation due to risk of infection etc. but i am hoping that this will do the trick. i am trying to talk him into going on vacation with me and my friends but he thinks he wont be able to tolerate the trip. you are still in my prayers, i wish u well kevin
my brother is to start autologous stem cell transplantation shortly. I guess they plan to hit him hard with chemo ( he just finished radiation) then and put in the stem cells he donated months ago. It seems like a very serious process he will be in the hospital for at least a couple weeks with limited visitation due to risk of infection etc. but i am hoping that this will do the trick. i am trying to talk him into going on vacation with me and my friends but he thinks he wont be able to tolerate the trip. you are still in my prayers, i wish u well kevin
Thread Starter
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Joined: Dec 2005
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From: Palm Coast, FL
St. Jude Donor '08-'09-'10-'11-'12
Deb , i am glad u seem to being doing better it seems they are on the right track.
my brother is to start autologous stem cell transplantation shortly. I guess they plan to hit him hard with chemo ( he just finished radiation) then and put in the stem cells he donated months ago. It seems like a very serious process he will be in the hospital for at least a couple weeks with limited visitation due to risk of infection etc. but i am hoping that this will do the trick. i am trying to talk him into going on vacation with me and my friends but he thinks he wont be able to tolerate the trip. you are still in my prayers, i wish u well kevin
my brother is to start autologous stem cell transplantation shortly. I guess they plan to hit him hard with chemo ( he just finished radiation) then and put in the stem cells he donated months ago. It seems like a very serious process he will be in the hospital for at least a couple weeks with limited visitation due to risk of infection etc. but i am hoping that this will do the trick. i am trying to talk him into going on vacation with me and my friends but he thinks he wont be able to tolerate the trip. you are still in my prayers, i wish u well kevin
I will continue to keep him in my thoughts......if my treatment doesn't work, that is the next option for me also, but I am unable to use my own stem cells and would have to rely a doner so my recovery process would be roughly three months. We're hoping it doesn't come to that because like you said - it is a serious procedure but I personally know of someone on CF who had a successful SCT done and he's doing great! Keep up the positive attitude and please let your brother know he is not alone - there are so many pulling for him.....myself included!!
Hang in there! We're always here to talk!
Melting Slicks
Joined: Dec 2004
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From: *MIDDLETOWN NY* "I thought I was an OLD-GUY, till I met Charlie"
Le Mans Master
Joined: Aug 2004
Posts: 9,420
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From: Southern New Jersey, The wet part at the bottom
St. Jude Donor '08-'09-'10
With Bob Seger (and The Silver Bullet Band!) coming to Philly (Ruthann and I ARE going!) I've been listening to some of my favorite Seger tunes, and thought of you Deb while listening to one of my favorites from the first album with The Silver Bullet Band as whether we're 18, 38, or 68 years young I hope you're "Like a Rock" and stadin' arrow straight now and always. Seger had his own medical bump in the road of life, and came out the other side just fine as I'm sure you will too, but has posted that this tour will be his last, so if you ever wanted to catch him again this would be the time. I especially like Rick Vito's guitar and slide ride in this song along with Bill Payne's (from Little Feat fame!) keyboards. Ya'll will note the cool C1 Corvette in the video. Hope you're well and "Like a Rock!" 
I couldn't embed this youtube, but the copied link should work.
http://www.youtube.com/watch?v=keIvA2wSPZc
I couldn't embed this youtube, but the copied link should work.http://www.youtube.com/watch?v=keIvA2wSPZc
Last edited by Ol'55; Oct 4, 2011 at 02:30 PM.
Thread Starter
Race Director
Joined: Dec 2005
Posts: 12,078
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From: Palm Coast, FL
St. Jude Donor '08-'09-'10-'11-'12
Thanks everyone!! I'm in a holding pattern at the moment. Ran into a few issues with damage to my heart over the past two months so I am now on medication to treat the damaged heart to help it pump more efficiently (its very weak). Now I have to go for heart tests every two months. I experience shortness of breath, fluttering (almost like anxiety) and occasional chest pain from it.
Holding my own and so far the treatment is doing exactly what its suppose to be doing!!!!
Now if the rest of my life would follow suit......the universe truly would be balanced
Holding my own and so far the treatment is doing exactly what its suppose to be doing!!!!
Now if the rest of my life would follow suit......the universe truly would be balanced