Guest guest Posted March 4, 2005 Report Share Posted March 4, 2005 Carol - no, those issues were not discussed at he beginning of the conference - they are good issues - please save them - I plan another teleconference within 2-3 months, possibly with Dr. Rai, the CLL guru - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2005 Report Share Posted March 4, 2005 Hi Carol, or anyone?? My Dad, to remind you has ITP and he is undergoing Rituxan for hopeful treatment to bring up his platelets. In his case however, his Platelets have not responded to 3 infusions thus far. We have one to go. So looks like he isn't one that reacts to Rituxan or else he has a different antibody giving trouble other than the CD20 related cells etc. So, next for him would probably be IgG or sterioids? I think thats what your both on now is Steroids or Pred??. I was wondering if you have any other info to help me out here with Dad? or maybe at least you could tell me the amont of Prednisone or ? you are taking and if thats being tolerated Ok by your bodys and immune systems? I took 40 mg of Pred a day for a month and had no problem etc. Howevr Dad is 86 and I'm afraid to do anything that will mess with his overall immune system? Geeeez this blood thing is the shits isn't it. Thanks, Kurt Teleconference Hello all- I really enjoyed the phone conference with Dr. -- He seems very knowledgable, up-to-date and willing to help us. I missed the first few minutes and wondered did he talk about why CLL patients can't get the Favrille vaccine study for our disease? Or did he talk about any T-cell manipulation vaccines or the accelerated T- cell study that is recruiting CLL and NHL patients right now? I liked his answers about deletions and Quest Labs doing the Vh mutation tests. I'm going to ask my onc about doing the test. Thank you Balan for setting this up. Carol Rhoades in Detroit SLL/CLL dx.98 CHOP, FRC,IVIG,R,Steroids for ITP age 54 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2005 Report Share Posted August 6, 2005 :Amm I registrated? How do I go about asking a qauestion Hope everythinj is good with you Its tough here Bestest Syril Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2005 Report Share Posted August 7, 2005 Syril - At 7pm dial 1 888 272 7337 Then you will be prompted to dial conference ID which is 4860999, plus pound sign The you're in It's too late for me to send new questions to Furman now but like the last time we will have time for questions not previously submitted I'll call on you Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2005 Report Share Posted August 11, 2005 Greg - the whole thing was recorded - I shall be posting on how to listen to the recording - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2005 Report Share Posted August 12, 2005 My understanding of Dr., Furman's view of treatment is that it should be ldelayed as long as possible and should be used to increase patient's quality of life when that becomes impaired. In other words, we should not get treatment until we are symptomatic and uncomfortable. What did people understand to be the doctor's view of flu shots? Carolyn, dx2004, asymptomatic --- Greg Wendholt <greg_w_41008@...> wrote: > , thanks for organizing the teleconference > with Dr. Furman. > > When the Dr. was talking about early treatments for > CLL there was static on the line which obliterated > his answer. I wonder if anyone heard this and knows > the dr. reply. > > greg > > > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2005 Report Share Posted August 13, 2005 My doctor's view of flu shots is paasted here: " Vaccines that are live attenuated may be a potential concern for CLL patients, but inactivated vaccines are no problem at all. In fact the flu and pneumonia vaccines (both inactivated) are very much recommended for CLL patients given thehigher risk for these infections. I do hope you will get your flu shot this year. " Carolyn, dx Sept 2004, asymptomatic --- Carolyn Swift <swift_carolyn@...> wrote: > My understanding of Dr., Furman's view of treatment > is > that it should be ldelayed as long as possible and > should be used to increase patient's quality of > life > when that becomes impaired. In other words, we > should > not get treatment until we are symptomatic and > uncomfortable. What did people understand to be the > doctor's view of flu shots? Carolyn, dx2004, > asymptomatic > > --- Greg Wendholt <greg_w_41008@...> wrote: > > > , thanks for organizing the teleconference > > with Dr. Furman. > > > > When the Dr. was talking about early treatments > for > > CLL there was static on the line which obliterated > > his answer. I wonder if anyone heard this and > knows > > the dr. reply. > > > > greg > > > > > > > > > > > > > > > > __________________________________________________ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2008 Report Share Posted March 27, 2008 I listened to the teleconference and found it very encouraging. Congratulations to Tracey for getting through with her question! I had a question but wasn't chosen. Maybe someone here can help me. I noticed Dr. Druker spoke quite a bit about cytogenic testing and pcr, but he never mentioned FISH testing! I wonder if he still does it or doesn't think it's valuable? My question is important to me, because although my cytogenics remain zero, and my pcr is 0.003%, my FISH came back 2 positive cells out of 500. How concerned should I be about that? My doctor mentioned increasing my Gleevec from 400 to 800, but I haven't done it yet. What do you think? Thanks, in NY **************Create a Home Theater Like the Pros. Watch the video on AOL Home. (http://home.aol.com/diy/home-improvement-eric-stromer?video=15?ncid=aolhom00030\ 000000001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2008 Report Share Posted March 27, 2008 Hi , I don't know what Dr. Druker's view on FISH tests is but I'm on my third doctor now (after being on this CML road for 6 years) and not one of them has done a FISH on me ...ever. I've always been told that once you reach CCR, FISH tests are pretty much obsolete due to their false positive rate and other variables that can effect the test. If there is ever any doubt about your disease status (such as a rising trend in PCR) then a BMB is the way to go to find out what is going on. For me personally, I would never increase my dose based on a FISH. If anyone out there knows what Dr. Druker's views on FISH tests are, please let us know. Tracey > > I listened to the teleconference and found it very encouraging. > Congratulations to Tracey for getting through with her question! I had a question but > wasn't chosen. Maybe someone here can help me. I noticed Dr. Druker spoke > quite a bit about cytogenic testing and pcr, but he never mentioned FISH > testing! I wonder if he still does it or doesn't think it's valuable? My question > is important to me, because although my cytogenics remain zero, and my pcr > is 0.003%, my FISH came back 2 positive cells out of 500. How concerned > should I be about that? My doctor mentioned increasing my Gleevec from 400 to > 800, but I haven't done it yet. What do you think? > Thanks, > in NY > > > > **************Create a Home Theater Like the Pros. Watch the video on AOL > Home. > (http://home.aol.com/diy/home-improvement-eric-stromer?video=15? ncid=aolhom00030000000001) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2008 Report Share Posted March 27, 2008 Maybe someone here can help me. I noticed Dr. Druker spoke quite a bit about cytogenic testing and pcr, but he never mentioned FISH testing! I wonder if he still does it or doesn't think it's valuable? My question is important to me, because although my cytogenics remain zero, and my pcr is 0.003%, my FISH came back 2 positive cells out of 500. How concerned should I be about that? My doctor mentioned increasing my Gleevec from 400 to 800, but I haven't done it yet. What do you think? _____________________ Hi in NY, I am a Dr. Druker patient and I just saw him for testing. On me he does cyto, pcr and FISH.....but that is because I have not been CCR for that long (just 6 months). My cyto was zero.....my FISH is 2.5% (or 5 bad cells in 200) and my pcr is about .52. YOU should not be concerned at all.......with your low pcr....your FISH value is most certainly a false positive (which happens with FISH). I don't think you need to change your dose at all....you have a very good response to Gleevec, which your prc indicates. IF you onc. does not understand this better than this, ask him/her to contact Dr. D for advice. _________________ To Lottie: about being the oldest turtle.....I think you may be, but I am one of your clan. The best I ever got to on 800mg Gleevec was about 25-35% ph+ (a major cyto response). Slowly on 100mg Sprycel, my number went down and at the 2 year mark I got my first zero (CCR). This was 9 years post dx. Dr. D told me just the other day that mostly he wants to see stable or a decrease in the ph+ count....that is the important thing. Us slow turtles should do fine....we already have! C. (the Maui Turtle) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2009 Report Share Posted May 10, 2009 Thank you, . I think it's a wonderful idea. Beth Recession-proof vacation ideas. Find free things to do in the U.S. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2009 Report Share Posted May 10, 2009 No question I would be one of the listeners! On Sunday, May 10, 2009, at 03:11 PM, jb50192@... wrote: > > > Hi - as many of you know, we had a month ago a very successful > teleconference with Dr. Keating at MD. > > I'm thinking that our next one might be with our own Dr. Furman. > > What do you all think about that? It's not worth it unless we have at > least 50 listeners. > > Just wondering...... > > > <image.tiff> > > The Average US Credit Score is 692. See Yours in Just 2 Easy Steps! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2009 Report Share Posted May 10, 2009 : Good idea as always. Teleconference Hi - as many of you know, we had a month ago a very successful teleconference with Dr. Keating at MD. I'm thinking that our next one might be with our own Dr. Furman. What do you all think about that? It's not worth it unless we have at least 50 listeners. Just wondering...... The Average US Credit Score is 692. See Yours in Just 2 Easy Steps! A Good Credit Score is 700 or Above. See yours in just 2 easy steps! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2009 Report Share Posted May 10, 2009 You can count me in. wayne From: jb50192@... <jb50192@...>Subject: Teleconference Date: Sunday, May 10, 2009, 5:11 PM Hi - as many of you know, we had a month ago a very successful teleconference with Dr. Keating at MD. I'm thinking that our next one might be with our own Dr. Furman. What do you all think about that? It's not worth it unless we have at least 50 listeners. Just wondering... ... The Average US Credit Score is 692. See Yours in Just 2 Easy Steps! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2009 Report Share Posted May 10, 2009 was able to record the Keating teleconference which was very informative and even I (I'm not good at this kind of thing) was able to download it to listen to it again. I think he can still send it to you. ???? Pat Teleconference Date: Sunday, May 10, 2009, 6:11 PM Hi - as many of you know, we had a month ago a very successful teleconference with Dr. Keating at MD. I'm thinking that our next one might be with our own Dr. Furman. What do you all think about that? It's not worth it unless we have at least 50 listeners. Just wondering... ... The Average US Credit Score is 692. See Yours in Just 2 Easy Steps! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2009 Report Share Posted May 11, 2009 Yes, I'd like to hear the Keating teleconference, too. Thanks. Jeanne From: bonnielevar@...Date: Mon, 11 May 2009 11:29:23 -0700Subject: RE: Teleconference Please send me one, too, if possible. Bonnie From: [mailto: ] On Behalf Of pkennedy16aolSent: Sunday, May 10, 2009 7:14 PM Subject: Re: Teleconference was able to record the Keating teleconference which was very informative and even I (I'm not good at this kind of thing) was able to download it to listen to it again. I think he can still send it to you. ????Pat Teleconference Date: Sunday, May 10, 2009, 6:11 PMHi - as many of you know, we had a month ago a very successful teleconference with Dr. Keating at MD.I'm thinking that our next one might be with our own Dr. Furman.What do you all think about that? It's not worth it unless we have at least 50 listeners.Just wondering... ...The Average US Credit Score is 692. See Yours in Just 2 Easy Steps! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2009 Report Share Posted May 11, 2009 Count me in. He is a wonderful speaker, as well as doctor! Bonnie From: [mailto: ] On Behalf Of pstein22@... Sent: Sunday, May 10, 2009 4:54 PM Subject: Re: Teleconference : Good idea as always. Teleconference Hi - as many of you know, we had a month ago a very successful teleconference with Dr. Keating at MD. I'm thinking that our next one might be with our own Dr. Furman. What do you all think about that? It's not worth it unless we have at least 50 listeners. Just wondering...... The Average US Credit Score is 692. See Yours in Just 2 Easy Steps! A Good Credit Score is 700 or Above. See yours in just 2 easy steps! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2009 Report Share Posted May 11, 2009 Please send me one, too, if possible. Bonnie From: [mailto: ] On Behalf Of pkennedy16@... Sent: Sunday, May 10, 2009 7:14 PM Subject: Re: Teleconference was able to record the Keating teleconference which was very informative and even I (I'm not good at this kind of thing) was able to download it to listen to it again. I think he can still send it to you. ???? Pat Teleconference Date: Sunday, May 10, 2009, 6:11 PM Hi - as many of you know, we had a month ago a very successful teleconference with Dr. Keating at MD. I'm thinking that our next one might be with our own Dr. Furman. What do you all think about that? It's not worth it unless we have at least 50 listeners. Just wondering... ... The Average US Credit Score is 692. See Yours in Just 2 Easy Steps! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2009 Report Share Posted May 11, 2009 Great idea !!!!!!!! Aviva On Sun, May 10, 2009 at 6:11 PM, <jb50192@...> wrote: Hi - as many of you know, we had a month ago a very successful teleconference with Dr. Keating at MD. I'm thinking that our next one might be with our own Dr. Furman. What do you all think about that? It's not worth it unless we have at least 50 listeners. Just wondering...... The Average US Credit Score is 692. See Yours in Just 2 Easy Steps! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2009 Report Share Posted May 12, 2009 , I for one would love to hear Dr. Furman. I enjoyed Dr. Keating's recording because I was out of town. Thanks, Carol Teleconference Hi - as many of you know, we had a month ago a very successful teleconference with Dr. Keating at MD. I'm thinking that our next one might be with our own Dr. Furman. What do you all think about that? It's not worth it unless we have at least 50 listeners. Just wondering...... The Average US Credit Score is 692. See Yours in Just 2 Easy Steps! Quote Link to comment Share on other sites More sharing options...
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