Guest guest Posted September 23, 2008 Report Share Posted September 23, 2008 Hi all, I have to jump in here reading about the pain of BMB, your are right it does hurt! I had 3 done, one each year when I was first diagnosed but they don't do them any more here in New Zealand, well not in my city anyway. I have a wonderful specialist who has a special blood test done, I can't explain the technicalities, but somehow from this test he gets the results of my " molecular arrangement " and this is sufficient for him to determine where I am... which at the moment is .7 (just had to add that). But anyway do continue to ask about this because BMB are horrible, my first one was the day I was diagnosed which was probably the scariest day of my life and I can remember nearly breaking my poor best friends hand the pain was so horrible and even then they couldn't really get enough. And as for the lady who wasn't allowed to stay with her Granny while she had hers, that just about made me cry, I couldn't imagine going through it on my own. Anyway just had to add my bit, good luck to you all in finding out about this blood test. Hugs from New Zealand. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2008 Report Share Posted September 23, 2008 Hi all, I'm new to this list. I just had a BMA and BMB and I had so much pain after the surgery, you just wouldn't believe. My hip turned black and blue and was so sore. I was dx with accelerated Phase CML and have been taken off Gleevec and put on Tasigna. I had my first dose this morning. Would like any input on this drug from those on it. Thanks, Jeanie > > Hi all, I have to jump in here reading about the pain of BMB, your are right it does hurt! I had 3 done, one each year when I was first diagnosed but they don't do them any more here in New Zealand, well not in my city anyway. I have a wonderful specialist who has a special blood test done, I can't explain the technicalities, but somehow from this test he gets the results of my " molecular arrangement " and this is sufficient for him to determine where I am... which at the moment is .7 (just had to add that). But anyway do continue to ask about this because BMB are horrible, my first one was the day I was diagnosed which was probably the scariest day of my life and I can remember nearly breaking my poor best friends hand the pain was so horrible and even then they couldn't really get enough. > And as for the lady who wasn't allowed to stay with her Granny while she had hers, that just about made me cry, I couldn't imagine going through it on my own. > Anyway just had to add my bit, good luck to you all in finding out about this blood test. > Hugs from New Zealand. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2008 Report Share Posted September 24, 2008 HI JEANIE, CAN'T HELP YOU OUT WITH INFO ON TASIGNA, I'VE BEEN ON EVERYTHING BUT THAT. JUST WANT TO SAY WELCOME TO THE LIST, THE ONES ON TASSIE WILL CHIME IN PRETTY SOON I'M SURE. GOOD LUCK, BOBBY a (Bobby) Doyle Brecksville, Ohio, USA DX 05/1995 02/2000 - Gleevec Trial/OHSU 06/2002 - Gleevec/Trisenox Trial/OHSU 06/2003 - Gleevec/Zarnestra Trial/OHSU 04/2004 - Sprycel Trial/MDACC, CCR in 10 months #840 - Zavie's Zero Club 09/2006 - out of CCR 04/29/08 - XL228 Trial/ U.of Michigan 06/02/08 - CCR ( in 4 weeks) From: jeanies <jeanies@...> Subject: [ ] Re: Re BMB Pain Date: Tuesday, September 23, 2008, 4:48 PM Hi all, I'm new to this list. I just had a BMA and BMB and I had so much pain after the surgery, you just wouldn't believe. My hip turned black and blue and was so sore. I was dx with accelerated Phase CML and have been taken off Gleevec and put on Tasigna. I had my first dose this morning. Would like any input on this drug from those on it. Thanks, Jeanie > > Hi all, I have to jump in here reading about the pain of BMB, your are right it does hurt! I had 3 done, one each year when I was first diagnosed but they don't do them any more here in New Zealand, well not in my city anyway. I have a wonderful specialist who has a special blood test done, I can't explain the technicalities, but somehow from this test he gets the results of my " molecular arrangement " and this is sufficient for him to determine where I am... which at the moment is .7 (just had to add that). But anyway do continue to ask about this because BMB are horrible, my first one was the day I was diagnosed which was probably the scariest day of my life and I can remember nearly breaking my poor best friends hand the pain was so horrible and even then they couldn't really get enough. > And as for the lady who wasn't allowed to stay with her Granny while she had hers, that just about made me cry, I couldn't imagine going through it on my own. > Anyway just had to add my bit, good luck to you all in finding out about this blood test. > Hugs from New Zealand. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2008 Report Share Posted September 24, 2008 Jeanie Check the files section of this list. I posted all the tasigna info on it a while back. I have been on it since January of this year. Barb Stanley 57 DX 5-5-2002 age 51 Hydroxurea 5-5-02-6-3--02 Gleevec 400 mg 6-11-02 MMR 8-1-02 CCR 12-10-02 PCRU 3-17-03 Gleevec break: Feb. 15 - May 1-2007 (severe side effects) Gleevec 300 mg. May 1 - Dec. 15- 2007 800 mg tasigna Dec. 27 -Jan 12 ( stopped because of side effects) 400 mg tasigna Jan 20 - present (Minimal side effects) Continuing strong PCRU > > > > Hi all, I have to jump in here reading about the pain of BMB, your > are right it does hurt! I had 3 done, one each year when I was first > diagnosed but they don't do them any more here in New Zealand, well > not in my city anyway. I have a wonderful specialist who has a > special blood test done, I can't explain the technicalities, but > somehow from this test he gets the results of my " molecular > arrangement " and this is sufficient for him to determine where I > am... which at the moment is .7 (just had to add that). But anyway do > continue to ask about this because BMB are horrible, my first one was > the day I was diagnosed which was probably the scariest day of my > life and I can remember nearly breaking my poor best friends hand the > pain was so horrible and even then they couldn't really get enough. > > And as for the lady who wasn't allowed to stay with her Granny > while she had hers, that just about made me cry, I couldn't imagine > going through it on my own. > > Anyway just had to add my bit, good luck to you all in finding out > about this blood test. > > Hugs from New Zealand. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2008 Report Share Posted September 24, 2008 & #65007; & #65007; > > > & #65007; & #65007; > > > Hi all, I have to jump in here reading about the pain of BMB, your & #65007; & #65007; > > are right it does hurt! I had 3 done, one each year when I was first & #65007; & #65007; > > diagnosed but they don't do them any more here in New Zealand, well & #65007; & #65007; > > not in my city anyway. I have a wonderful specialist who has a & #65007; & #65007; > > special blood test done, I can't explain the technicalities, but & #65007; & #65007; > > somehow from this test he gets the results of my " molecular & #65007; & #65007; > > arrangement " and this is sufficient for him to determine where I & #65007; & #65007; > > am... which at the moment is .7 (just had to add that). But anyway do & #65007; & #65007; > > continue to ask about this because BMB are horrible, my first one was & #65007; & #65007; > > the day I was diagnosed which was probably the scariest day of my & #65007; & #65007; > > life and I can remember nearly breaking my poor best friends hand the & #65007; & #65007; > > pain was so horrible and even then they couldn't really get enough. & #65007; & #65007; > > > And as for the lady who wasn't allowed to stay with her Granny & #65007; & #65007; > > while she had hers, that just about made me cry, I couldn't imagine & #65007; & #65007; > > going through it on my own. & #65007; & #65007; > > > Anyway just had to add my bit, good luck to you all in finding out & #65007; & #65007; > > about this blood test. & #65007; & #65007; > > > Hugs from New Zealand. & #65007; & #65007; > > > & #65007; & #65007; > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2008 Report Share Posted September 24, 2008 --- Hi all, I don't know what happened to this post. For some reason it sent the message before I was ready to send it. I wanted to thank you for the file on Tasigna. I have had a headache and was wondering what to take for it. I know on Gleevec, you weren't supposed to take Tylenol. Thanks a lot. This is my second day. I'm very tired and still getting over the painful BMA and BMB. Jeanie In , " jeanies " <jeanies@...> wrote: > > & #65007; & #65007; > > & #65007; & #65007; > > & #65007; & #65007; > > Jeanie & #65007; & #65007; > > & #65007; & #65007; > > Check the files section of this list. I posted all the tasigna info > on & #65007; & #65007; > > it a while back. I have been on it since January of this year. & #65007; & #65007; > > & #65007; & #65007; > > Barb Stanley 57 & #65007; & #65007; > > & #65007; & #65007; > > DX 5-5-2002 age 51 & #65007; & #65007; > > & #65007; & #65007; > > Hydroxurea 5-5-02-6-3--02 & #65007; & #65007; > > & #65007; & #65007; > > Gleevec 400 mg 6-11-02 & #65007; & #65007; > > & #65007; & #65007; > > MMR 8-1-02 & #65007; & #65007; > > & #65007; & #65007; > > CCR 12-10-02 & #65007; & #65007; > > & #65007; & #65007; > > PCRU 3-17-03 & #65007; & #65007; > > & #65007; & #65007; > > Gleevec break: Feb. 15 - May 1-2007 (severe side effects) & #65007; & #65007; > > & #65007; & #65007; > > Gleevec 300 mg. May 1 - Dec. 15- 2007 & #65007; & #65007; > > & #65007; & #65007; > > 800 mg tasigna Dec. 27 -Jan 12 ( stopped because of side effects) & #65007; & #65007; > > & #65007; & #65007; > > 400 mg tasigna Jan 20 - present (Minimal side effects) & #65007; & #65007; > > & #65007; & #65007; > > Continuing strong PCRU & #65007; & #65007; > > & #65007; & #65007; > > & #65007; & #65007; > > & #65007; & #65007; > > & #65007; & #65007; > > & #65007; & #65007; > > --- In , " jeanies " <jeanies@> wrote: & #65007; & #65007; > > > & #65007; & #65007; > > > & #65007; & #65007; > > > Hi all, & #65007; & #65007; > > > I'm new to this list. & #65007; & #65007; > > > I just had a BMA and BMB and I had so much pain after the surgery, & #65007; & #65007; > > > you just wouldn't believe. My hip turned black and blue and was so & #65007; & #65007; > > > sore. & #65007; & #65007; > > > I was dx with accelerated Phase CML and have been taken off & #65007; & #65007; > > > Gleevec and put on & #65007; & #65007; > > > Tasigna. & #65007; & #65007; > > > I had my first dose this morning. & #65007; & #65007; > > > Would like any input on this drug from those on it. & #65007; & #65007; > > > Thanks, & #65007; & #65007; > > > Jeanie & #65007; & #65007; > > > --- In , " Liddy " calicolid@ wrote: & #65007; & #65007; > > > > & #65007; & #65007; > > > > Hi all, I have to jump in here reading about the pain of BMB, > your & #65007; & #65007; > > > are right it does hurt! I had 3 done, one each year when I was > first & #65007; & #65007; > > > diagnosed but they don't do them any more here in New Zealand, > well & #65007; & #65007; > > > not in my city anyway. I have a wonderful specialist who has a & #65007; & #65007; > > > special blood test done, I can't explain the technicalities, but & #65007; & #65007; > > > somehow from this test he gets the results of my " molecular & #65007; & #65007; > > > arrangement " and this is sufficient for him to determine where I & #65007; & #65007; > > > am... which at the moment is .7 (just had to add that). But > anyway do & #65007; & #65007; > > > continue to ask about this because BMB are horrible, my first one > was & #65007; & #65007; > > > the day I was diagnosed which was probably the scariest day of my & #65007; & #65007; > > > life and I can remember nearly breaking my poor best friends hand > the & #65007; & #65007; > > > pain was so horrible and even then they couldn't really get > enough. & #65007; & #65007; > > > > And as for the lady who wasn't allowed to stay with her Granny & #65007; & #65007; > > > while she had hers, that just about made me cry, I couldn't > imagine & #65007; & #65007; > > > going through it on my own. & #65007; & #65007; > > > > Anyway just had to add my bit, good luck to you all in finding > out & #65007; & #65007; > > > about this blood test. & #65007; & #65007; > > > > Hugs from New Zealand. & #65007; & #65007; > > > > & #65007; & #65007; > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2008 Report Share Posted September 24, 2008 Hi Jeanie, You can take Tylenol according to docs I know. Just don't take more than the suggested dosage. If you'd prefer you can take Ibuprofen instead (like Advil). Excedrin specializes in headache medicine. Cheers, L [ ] Re: Re BMB Pain --- Hi all, I don't know what happened to this post. For some reason it sent the message before I was ready to send it. I wanted to thank you for the file on Tasigna. I have had a headache and was wondering what to take for it. I know on Gleevec, you weren't supposed to take Tylenol. Thanks a lot. This is my second day. I'm very tired and still getting over the painful BMA and BMB. Jeanie In , " jeanies " <jeanies@...> wrote: > > & #65007; & #65007; > > > > & #65007; & #65007; > > > > Hi all, I have to jump in here reading about the pain of BMB, > your & #65007; & #65007; > > > are right it does hurt! I had 3 done, one each year when I was > first & #65007; & #65007; > > > diagnosed but they don't do them any more here in New Zealand, > well & #65007; & #65007; > > > not in my city anyway. I have a wonderful specialist who has a & #65007; & #65007; > > > special blood test done, I can't explain the technicalities, but & #65007; & #65007; > > > somehow from this test he gets the results of my " molecular & #65007; & #65007; > > > arrangement " and this is sufficient for him to determine where I & #65007; & #65007; > > > am... which at the moment is .7 (just had to add that). But > anyway do & #65007; & #65007; > > > continue to ask about this because BMB are horrible, my first one > was & #65007; & #65007; > > > the day I was diagnosed which was probably the scariest day of my & #65007; & #65007; > > > life and I can remember nearly breaking my poor best friends hand > the & #65007; & #65007; > > > pain was so horrible and even then they couldn't really get > enough. & #65007; & #65007; > > > > And as for the lady who wasn't allowed to stay with her Granny & #65007; & #65007; > > > while she had hers, that just about made me cry, I couldn't > imagine & #65007; & #65007; > > > going through it on my own. & #65007; & #65007; > > > > Anyway just had to add my bit, good luck to you all in finding > out & #65007; & #65007; > > > about this blood test. & #65007; & #65007; > > > > Hugs from New Zealand. & #65007; & #65007; > > > > & #65007; & #65007; > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2008 Report Share Posted September 24, 2008 Jeanie My computer went down last night about the time I sent the email. I think that is what happened to it. So sorry. Here is my info again: Barb Stanley 57 DX 5-5-2002 age 51 Hydroxurea 5-5-02-6-3--02 Gleevec 400 mg 6-11-02 MMR 8-1-02 CCR 12-10-02 PCRU 3-17-03 Gleevec break: Feb. 15 - May 1-2007 (severe side effects) Gleevec 300 mg. May 1 - Dec. 15- 2007 800 mg tasigna Dec. 27 -Jan 12 ( stopped because of side effects) 400 mg tasigna Jan 20 - present (MINIMAL SIDE EFFECTS) Continuing strong PCRU & #65007; & #65007; > > > > > & #65007; & #65007; > > > > > Hi all, I have to jump in here reading about the pain of BMB, > > your & #65007; & #65007; > > > > are right it does hurt! I had 3 done, one each year when I was > > first & #65007; & #65007; > > > > diagnosed but they don't do them any more here in New Zealand, > > well & #65007; & #65007; > > > > not in my city anyway. I have a wonderful specialist who has > a & #65007; & #65007; > > > > special blood test done, I can't explain the technicalities, > but & #65007; & #65007; > > > > somehow from this test he gets the results of > my " molecular & #65007; & #65007; > > > > arrangement " and this is sufficient for him to determine where > I & #65007; & #65007; > > > > am... which at the moment is .7 (just had to add that). But > > anyway do & #65007; & #65007; > > > > continue to ask about this because BMB are horrible, my first > one > > was & #65007; & #65007; > > > > the day I was diagnosed which was probably the scariest day of > my & #65007; & #65007; > > > > life and I can remember nearly breaking my poor best friends > hand > > the & #65007; & #65007; > > > > pain was so horrible and even then they couldn't really get > > enough. & #65007; & #65007; > > > > > And as for the lady who wasn't allowed to stay with her > Granny & #65007; & #65007; > > > > while she had hers, that just about made me cry, I couldn't > > imagine & #65007; & #65007; > > > > going through it on my own. & #65007; & #65007; > > > > > Anyway just had to add my bit, good luck to you all in > finding > > out & #65007; & #65007; > > > > about this blood test. & #65007; & #65007; > > > > > Hugs from New Zealand. & #65007; & #65007; > > > > > & #65007; & #65007; > > > > > Quote Link to comment Share on other sites More sharing options...
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