The Leukemia & Lymphoma Society Community: Message List - Miraculous results with GA-101 for treatment of CLL/SLL

Re: Miraculous results with GA-101 for treatment of CLL/SLL

communityreply@lls.org — Sat, 18 May 2013 23:18:16 GMT

BJ - Thanks for the link. I will go there and check it out. Hope you are doing fine right now. Regards, Daniel

Re: Miraculous results with GA-101 for treatment of CLL/SLL

communityreply@lls.org — Sat, 18 May 2013 22:37:54 GMT

Other forums are much easier to use: For example the CLL forum: http://www.cllforum.com

It isn't ideal, but much better than this one.

Re: Miraculous results with GA-101 for treatment of CLL/SLL

communityreply@lls.org — Thu, 16 May 2013 16:48:05 GMT

BJ -- I agree this site is not very user friendly, but since Chaya's site is not being updated this site is used by me by default. I have gained some helpful information from you here, and for that i thank you for posting your information. At some point, if i get motivated enough, I will try to see if the M D Anderson CLL website is helpful. I am just getting kind of apathetic regarding pursuing CLL treatments due to my entire medical situation which started 3 decades ago. Regardless, again you have helped me with your WBC information. Regards, Dan. PS -- I hope you got some positive feedback from your May Oncologist visit.

Re: Miraculous results with GA-101 for treatment of CLL/SLL

communityreply@lls.org — Wed, 15 May 2013 18:27:42 GMT

I don't know why my mailbox should be full....I have never sent or received a private message on this list. This is just a bad website and is not user friendly; it has very little to offer to CLL people so far as I can see. I didn't even know one could send a private message. The system, whatever it is, would not allow me to send one. I think maybe the best solution is to rely on other list/groups. I wish this was a more reliable, easier to use place.

Re: Miraculous results with GA-101 for treatment of CLL/SLL

communityreply@lls.org — Wed, 15 May 2013 15:06:43 GMT

bj -- I sent you a private message, but it said that your inbox is full thus the message would not go. Not sure if the message went to you or not. So, will try to send you a message here. To send a private message, go to the top of this page and click on 'Home' . From there you will see a list of 'Recent Contents' ... and to the right of the contents will be peoples names ... click on the name and it will give you the option to send a private message to who ever you click on. I agree that this site is not the easier to get around in. Dan here.

Re: Miraculous results with GA-101 for treatment of CLL/SLL

communityreply@lls.org — Wed, 15 May 2013 03:01:16 GMT

I have been trying to send a private message here... how does one do that?

I must say, this is the most difficult to place to get around in I ever saw.

Re: Miraculous results with GA-101 for treatment of CLL/SLL

communityreply@lls.org — Tue, 14 May 2013 18:03:33 GMT

CLL had reached the point where treatment could no longer be delayed. The WBC was the least problem. out of time now; need to go to physician's office,

More later,

thanks for the URL

Re: Miraculous results with GA-101 for treatment of CLL/SLL

communityreply@lls.org — Tue, 14 May 2013 17:35:57 GMT

BJ: Thxs for your reply. hey, at least the partial remission is working to this point approx. 6 months since Dec 2012. I agree with you that there is little interest on this site due to how it is organized, but we are also spoiled due to having Chaya's site for so long -- God bless Chaya. Now, regarding your passwords and log-on ID's, here is what i do. Since this is not a bank account etc I simply name my 'bookmark' for this site with my log-on & pass-word so that when i see the bookmark it has my logon & password in the bookmark title. And I try to use the same logon and password for each CLL site. Also you can get your PC to remember your passwords and logo names for you. The easiest is to just put the password and logon in the bookmark name. Hope that helps.

I have not found a site as good as Chaya's but i did find the M D Anderson site and will send the link if you do not have it already. Their number one cancer program right now is CLL. They call it their "moon-shot' project and they are serious about focusing on CLL to find a cure to it.Here is their link. When you set up your password etc, they ask you what you want sent to you ... they have a monthly news letter, or more. I choose the monthly news letter.

I forgot to mention in my last post to you that my knee surgery is much better now that 2 1/2 months has passed, so it is not a major issue for me at this point. I did get pretty darn sick with a cold on the 22 of April, and it took me until the last few days to get over it. I never in the past had any type of cold that would keep me down, but this one did for sure. I had a CBC run and it is moving up quickly, but i honestly have not and do not know what I am going to do regarding treatment? This is due to the other spinal issues i have had to deal with, and they run a person down, but this week i have been doing way way better.

In my last post i was asking if you started your Immuno therapy with GA101 due to your CBC numbers getting critical, or just due to GA101 being a trial. My Oncologist was very interested in your WBCcount being up to 211k. He starts chemo when WBC and ALC both hit 100k, but i told him no since i have info that folks can let their WBC go higher as you have. Hope this note is not to long BJ, and I for sure hope your remission lasts a long time. Please take care of yourself, and thank you for your reply. Regards, Daniel here.

PS -- forgot the link to M D Anderson ... here it is. http://www.cllglobal.org/

Re: Miraculous results with GA-101 for treatment of CLL/SLL

communityreply@lls.org — Sat, 04 May 2013 18:50:09 GMT

BJ - How did your follow up visit with your trial Oncologist go. I hope well. I re-read some of your notes here, as well as on Chaya's old site. Was trying to remember what was the determining factor that made you start your therapy for CLL and where was the clinic where you are trialing GA101. I've got, and have had some infections colds etc, but now this one is not seeming to abate, so may be time for me to start chemo and/or see what trials may be going on here (wish GA101 IS). . I have mentioned to my Onco your 211k WBC, along with some other folks that have had high WBC's. He was all ears since he has not had good results with high WBC's, thus he starts chemo when WBC is 100k along with 100k ALC. Thus he was/is interested in your high WBC before treatment, and I will try to see my Onco if this cold doesnt abate. Hope your pollen has let up ... we are over it, I think, BUT I have ASSUMED that 3 times, and it comes back. OK, hope all is well. GO GA101! Regard, Dan.

Re: Miraculous results with GA-101 for treatment of CLL/SLL

communityreply@lls.org — Fri, 26 Apr 2013 21:06:35 GMT

BJ -- Good to hear that your post GA101 life is still going well. I have been under the weather, which is totally not normal for me (regarding flu/colds/infections/etc). I have had the ortho/spine demons to deal with, but not colds/flu/infections etc. Since Dx'd with CLL in 2006 I have had some minor infections/strep etc which I never had before, or if i had them i just went on and did not know. Anyway this flu/cold? deal hit me last Tuesday and it is kicking my behind. This is like a CLL warning shot over the bow for me. I agree with you and others from Chaya's site that putting off chemo as long as you can is best, but this cold/flu? deal is not giving way as it should. Have not been in to see Onco since Jan 15th, so maybe I better see what the CBC says now vs where it was in Jan 15th. So, I might be at decision making time regarding chemo.

I have had to many medical issues going on besides CLL to even look at trial drugs such as your great working GA101. If I had more energy and less ortho/spine issues I would be very involved with CLL trial meds, but I just am out of energy to fight, thus will probably just default to the B&R chemo even though I do not like the information that Chaya posted on her site regarding B&R. I have been in drug trials in the past for other medications, so I know the rounds regarding trials. But again, just don't have the horse-power to pursue that right now. Maybe when this flu/cold? deal abates I will be more energized?

My Onco wanted me to start chemo due to 130k WBC & 100k ALC, but I have put it off since I do not have any external glands swollen, etc. maybe things are different now. Onco's major concern is treating high WBC and how it may overload the kidneys/liver etc with dead WBC's. But other Drs deal with this, just as your did with your very high 210k WBC. I assume other centers give a lite chemo to reduce the WBC so that there are not as many flooding the kidneys at one time ('tumor lysis'). Assume I will ask him when i see him. I should have put the knee job off since it has taken much more time & energy than I have right now.

Good luck on your May checkup .... I honestly wish you the best. Hope the pollen lets up there .... it has been OK here, but we had a second batch this week, but i have not been out to even see it until today when i forced myself to walk my son's dog. The knee deal has been put on hold until i can get out and walk to see if it holds up. It not weak, just worn down femur condyle. Will see how it does when i rebound from this flu/cold? ordeal. Post how your May check-up goes. Daniel