In a message dated 9/5/2010 6:20:34 A.M. Eastern Daylight Time, cmlhope+nore...@googlegroups.com writes:
Today's Topic Summary Group: _http://groups.google.com/group/cmlhope/topics_ (http://groups.google.com/group/cmlhope/topics) * _Chest heaviness_ (mip://08b75260/default.html#group_thread_0) [2 Updates] * _Genetics Blood Test Results_ (mip://08b75260/default.html#group_thread_1) [4 Updates] Topic: _Chest heaviness_ (http://groups.google.com/group/cmlhope/t/97d9c8a874caffa5) kellyelise <kellyeli...@aol.com> Sep 04 02:47PM -0700 _^_ (mip://08b75260/default.html#digest_top) Hi Folks! Been a long time since I posted anything. I have a question.....I've been on Sprycel 100 mg since May of 2009. Much, much better than Gleevec....whew!! Anyway, I've been experiencing chest heaviness any time I exert myself, AT ALL. Even walking DOWN stairs, I feel like someone is pushing down on my head, shoulders and chest. Sometimes I get really dizzy just bending over. I get so winded, I shuffle. Can't even pick my feet up. I have to stop, rest, then resume. I went to the doc and had chest x-rays, abdominal ultrasound, echocardiogram and blood work. I will get the results when I return to the doc 9/13. Are these symptoms of COPD, CML or side effects from the Sprycel.....? I just can't figure out why I am so weak. Any input, suggestions and experiences would be greatly appreciated!! Blessings! Kelly "Nadiia Noles" <nadia...@earthlink.net> Sep 04 10:19PM -0400 _^_ (mip://08b75260/default.html#digest_top) I Kelly, Just read your mail and I feel like you talk about me. I have the same, and I am on Gleevec. Last week I have a lot of tests and the cardio show a diastolic dysfunction!!!! Now I have to see a crdio and hope for the best. Take care and kip fighting, life is still wonderful even with CML Nadia -----Original Message----- From: cmlhope@googlegroups.com [mailto:cmlh...@googlegroups.com] On Behalf Of kellyelise Sent: Saturday, September 04, 2010 5:48 PM To: CMLHope Subject: [CMLHope] Chest heaviness Hi Folks! Been a long time since I posted anything. I have a question.....I've been on Sprycel 100 mg since May of 2009. Much, much better than Gleevec....whew!! Anyway, I've been experiencing chest heaviness any time I exert myself, AT ALL. Even walking DOWN stairs, I feel like someone is pushing down on my head, shoulders and chest. Sometimes I get really dizzy just bending over. I get so winded, I shuffle. Can't even pick my feet up. I have to stop, rest, then resume. I went to the doc and had chest x-rays, abdominal ultrasound, echocardiogram and blood work. I will get the results when I return to the doc 9/13. Are these symptoms of COPD, CML or side effects from the Sprycel.....? I just can't figure out why I am so weak. Any input, suggestions and experiences would be greatly appreciated!! Blessings! Kelly -- [CMLHope] A support group of _http://cmlhope.com_ (http://cmlhope.com/) ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at _http://groups.google.com/group/CMLHope_ (http://groups.google.com/group/CMLHope) Topic: _Genetics Blood Test Results_ (http://groups.google.com/group/cmlhope/t/c1bcef05da898c64) icandoall...@aol.com Sep 04 08:24AM -0400 _^_ (mip://08b75260/default.html#digest_top) yahoooooooooooooooooooo Great news margoo...@aol.com Sep 04 02:45PM -0400 _^_ (mip://08b75260/default.html#digest_top) This is really great news and so encouraging for people like me, a year and a half into Gleevec but not quite at zero. Does this mean that you have reached undetectable, stayed on the same dose of Gleevec and then had the numbers go back up? If so, did the doctors increaase the amount of Gleevec to get you back to zero? And now that you are undetectable, does that change your medication amount or routine? Thanks, Suzieq, and all of you out there who continue to provide information, answers and hope to the rest of us who are newer Warriors! Marcie in Baltimore -----Original Message----- From: Suzieq <sheila.a.wat...@gmail.com> To: CMLHope <cmlhope@googlegroups.com> Sent: Thu, Sep 2, 2010 5:44 pm Subject: [CMLHope] Genetics Blood Test Results Would you believe the blood was drawn on July 12th and the test esults from Genzyme Lab finally came back to my doctor on Aug. 26th. t's never ever taken that long, so don't know what the problem was. ut, I am happy.......they came back "non-detected".......YIPPEE!!!! his is only the 3rd time this has happened since I was dx'ed Jan. of 004. Gleevec is still doing it's job. Keep looking up everybody, Suzieq -- CMLHope] support group of _http://cmlhope.com_ (http://cmlhope.com/) ------------------------------------------------ You received this message because you are subscribed to the Google Groups CMLHope" group. o post to this group, send email to CMLHope@googlegroups.com o unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com or more options, visit this group at _http://groups.google.com/group/CMLHope_ (http://groups.google.com/group/CMLHope) Suzieq <sheila.a.wat...@gmail.com> Sep 04 06:44PM -0700 _^_ (mip://08b75260/default.html#digest_top) Marcie: I was dx'ed back in Jan. '04 & put on 400 mgs. of Gleevec within about three or four weeks afterwards. I have been on the same since then. They had me go off of it for one week about a couple of months on it as my blood counts dropped dangerously low, but they were back up within a weeks time and I went right back to the 400 mgs. They've never changed me to anything else. Within six to eight months of Gleevec, I was right at the 0.001% and have fluctuated the whole time.......being "not detected" thrice.....2/'07..... 11/'08.....& 7/'10. Once I jumped to 0.013%, but my doctor was not concerned about it & I went right back down 4 months later. We had quite a lengthy discussion about this and she told me that they felt that this was just the way Gleevec was going to work for me, that since I've been on it this long, it has probably leveled off in my system & worked as well as it's going to for me. And, that if I went off of it, the CML would just come right back. Being a part of this survivor group for several years and reading so many different stories from others, it seems that we all react differently. I think there are a couple of people listed here whose had the same sort of results as I have with Gleevec. My doctor's nurse practitioner told me a while back that with the 0.001%, I could live for a very long time............so, I'm very thankful to Dr. Druker and the other two guys for developing Gleevec for CML, because I remember reading an interview he had with some reporter that asked him what he told newly dx'ed patients before Gleevec & he said "I more or less told them to go home and get their affairs in order. Most were given 3 to 5 years"........I will hit my 7th year this coming January, so yeah, I'm extremely grateful to all the research & developers....doctors & scientists.....a great big THANK YOU! So, Marcie, you just hang in there and keep taking your Gleevec and doing what the dr. tells you to do. Take it faithfully, too. No missing here and there. Keep looking up, Suzieq Suzieq <sheila.a.wat...@gmail.com> Sep 04 06:45PM -0700 _^_ (mip://08b75260/default.html#digest_top) I just want to say "thanks" to all who have responded to this post. You are the greatest bunch of people & really bless my heart. Love to all, Suzieq -- [CMLHope] A support group of _http://cmlhope.com_ (http://cmlhope.com/) ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at _http://groups.google.com/group/CMLHope_ (http://groups.google.com/group/CMLHope) -- [CMLHope] A support group of http://cmlhope.com ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
