The Leukemia & Lymphoma Society Community: Message List

TBL-12, Anyone using it?

communityreply@lls.org — Wed, 08 Sep 2010 19:53:40 GMT

Is anyone using a product called TBL-12? Sea Cucurmber and others. This stuff cost like $500 per month. Do a search on youtube for

TBL-12 and you will see a few who claim it has saved them. I am not selling TBL-12. I haven't used it, but am considering it for a few months.

Would like to hear from someone who has tried it.

Re: Diagnosed with CLL and 7 months pregnant

communityreply@lls.org — Tue, 02 Aug 2011 21:38:53 GMT

I was treated with FCR 3 months after diagnosis. I was dx at age 43 in 2009. I would focus on your child at this time and come back to the CLL battle after the child gets here. My wife is 6 months pregnant with our first child.

Send me a PM and I will share with you some more information if you would like on some things you might consider after your birth of your child. There are some novel therapies in the works that may change the future of treating CLL-so take a deep breeath and relax....it is going to be OK.

Re: Rituxan Maintenance

communityreply@lls.org — Wed, 11 May 2011 04:37:14 GMT

You can read the report here www.clinicaloptions.com/.../Hematology%202010/CCO%20Slidesets/Chronic%20Lymphocytic%20Leukemia.aspx you have to sign up for this site to access the report.

So basically, it is a matter of opinion as to whether the cost is worth the chance of one being the exeption rather than the rule. Send me a PM if you cant get the report and I can email it to you.

Re: Rituxan Maintenance

communityreply@lls.org — Mon, 11 Apr 2011 05:36:32 GMT

Jeff,

I am currently doing Rituxan maintance therapy, I am doing this following full bore FCR-all six rounds. I can tell you the treatment is not supported by some doctors.

A few have had really good results-something like 20% of those getting it. I am getting Rituxan every 6 months for 2 years. I have already completed one and start the next one in May.

I get a weekly infusion for 4 weeks. This treatment is very mild compared to FCR but not without some risk. But most of us with CLL have to take some risk.

You can send me a personal message if I can answer soemthing for you.

Best Wishes

Tom

Re: Does anyone else have CD38 marker?

communityreply@lls.org — Mon, 03 Jan 2011 14:36:31 GMT

I know someone who got transplant at Fred Hutchison for CLL. He is doing very well. On the one hand, you are lucky to be close to the Hutch. I am 44 in some state of remission with CLL. Diagnosed Sept 2009. I got treated at CTCA. My doc there wanted to move to transplant as next action. I told him I do not want to do a transplant. He don't care-he is a transplanter. So I am seeing another doc.

I am now doing Rituxan maintance 6 months after my FCR that ended in May. There are some new treatments coming that may offer some hope, i.e. PCI-32765, CAl 101. These drugs are in same class as Gleevec for CML. Will it work for CLL like it does with CML??? We hope so. They are in Clinical trials now. You might want to speak to someone about getting in one of these trials if possible. What are your other prognostics? Unmutated,11q or 17P? If you have the 17P there may not be time to delay. Good thing about transplant is it can cure. But as you have found out it carries a huge risk. When I first got diagnosed I wanted a transplant...cure me...but after I found out about the transplant I said...well lets slow down a bit. the thing about transplant for it to be succesful is the CLL has to be knocked back pretty good before transplant. The German CLL 8 study regarding FCR came out with those with 17P should consider transplant. Other wise It looks like some maintance therapy or clinical trial as I recall reading the report. I had small amount of 11q and unmutated. I was CD 38 neg. I had a few small lymph nodes after 6 rounds of FCR. I had massive lymphs before treatment. Send me a personal message and I will send you my email if you want to talk more. We are all in this boat together. We will pray and hope for the breakthrough treatment to come fast-I truly believe it is coming-just a question of when. Dr Keating in recent interview with Andrew Schorr said 3-5 years!

http://vimeo.com/17763569

Re: I really need your input.

communityreply@lls.org — Sat, 11 Dec 2010 17:30:18 GMT

Some hematologist/oncologist utilize the BMB more than others. If you are in a clinical trial, they would be typically used to evualute the results. Same for CT scans. I have had one BMB and it was not the agonizing ordeal I feared although the more experienced the doctor performing it the less pain perhaps. What you should ask your oncologist is this. Will a BMB tell us something we might not already know? If the answer is no. Then there is perhaps no need to do it. If the answer is yes, then perhaps get it done.

Re: CLL Spotlight Article.Volume 3 Issue 1 Winter 2010 RE: PCI-32765

communityreply@lls.org — Thu, 02 Dec 2010 02:43:52 GMT

CLL Spotlight Article.Volume 3 Issue 1 Winter 2010 RE: PCI-32765

communityreply@lls.org — Thu, 02 Dec 2010 02:41:26 GMT

Promissing New Therapies

Re: STEM CELL TRANSPLANT

communityreply@lls.org — Sun, 21 Nov 2010 05:45:48 GMT

Robert. I sent you an email message to your personal email listed on your profile. Normally, they do a reduced intensity, Mini, allogenic transplant for CLL The bigger concern is not the chemo you get to conidtion you for the transplant but rather Graft Versus Host Disease later on. In my opinion, the transplant should be the last option but is good to know the option exist. There seems to be a movement with many centers to get younger CLL patients into transplant sooner.

Re: Blood count way too low for 2nd chemo treatment - anyone else go thru this?

communityreply@lls.org — Thu, 11 Nov 2010 21:21:51 GMT

Marie-Chantal keep a positive outlook. I pray/hope for your brother to be a match. I have 1 sibling and did not get a match. But a MUD is statistically just as good. But a brother/sister is so much easier and would feel much safer. But don't give up if they turn out to be a non-match-there is plenty of hope for a great MUD match.

My appt today resulted in if my insurance will approve, I am going to try the 2 year Rituxan maintence therapy.