Guest guest Posted November 30, 2006 Report Share Posted November 30, 2006 Hi Cam, We are in BC and saw the BMT specialist the other day (she was fantastic) We may have to also consider BMT as my husband has a translocation of 3 chromosomes and may be only partially responding but there are many things to take into consideration. His brother is being tested as a donor next week so we have all our ducks lined up if need be. So your counts have dropped - but what is your PCR? I am sure you are frustrated with everything right now- there seems to be no reason your neutrophils should be down as well as platelets...let us know how it goes.. shalyn > Hello all, > > I have been off Gleevec for more than 2 months because my neutrophil > and platelet counts > have been dangerously low. I have had two platelet transfusions and > my counts do not seem > to be improving. I'm sure more transfusions are coming my way. My > doctor is considering > getting me on Interferon or going back up to the cancer clinic in > Calgary to talk to the BMT > doctors again. Is there anyone out there who had to go off Gleevec? > What were your options? > Did any of you choose the BMT? I would appreciate advice from anyone. > > Cam > > " Catch on fire with enthusiasm and people will come for miles to watch you burn. " - Wesley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2006 Report Share Posted December 4, 2006 At 05:33 PM 12/3/06 -0800, you wrote: >What is dasatanib? And what is log reduction? And BMS? Don't know the >lingo yet! > >I'm new, been on gleevec only 5 wks, lotsa side effects..some days I think >I'm doing pretty good, other days are awful! > >Margaret Hi Margaret, The 2nd CML drug that is now approved is made by BMS (Bristol Meyers-Squibb)......the scientific name is dasatinib.....trade name is Sprycel. So, all of these relate to one drug....which is a 2nd generation drug developed after Gleevec. When you get a PCR value......it is a number, maybe like 2.4 When you have a one log reduction in this value (which represents how many leukemia cells you have) the number is reduced to 0.24.............. a 2-log reduction is 0.024..............a 3-log reduction is 0.0024 The goal is to reach a 3-log reduction, as the chance of relapse is almost nil then. A log is 10X.......so you just move the decimal point one place, for an increase or a decrease. Let the list know about your side effects and someone might have a suggestion. It takes a bit to stabilize on the drug and usually the side effects get less over time. C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2006 Report Share Posted December 4, 2006 Thanks, for the information. My diagnosis was made with the fish blood test 2 months ago. I'll have a bone marrow in 5 more months. On 600 mg gleevec which reduced my w. blood count from 128,000 to 9,000 in 3 weeks. Side effects are numerous but bone/muscle pain, nasaua, fatigue, fluid retention in my face, muscle cramps, bleury vision are the worse. it seems like one is quickly replaced by another and they can change every day. As example, nasaua was a real problem but by the time I got a script from the doc it went away. It seems almost like a variety of " phantom symptoms " which makes me feel like a hypochondriac. Davocette works best for bone pain and I take about 5 - 6 a week, no more than one a day...also take 2 Aleve daily. I'm working mornings but usually spend the afternoons and evenings napping. There's been major diet change. I have to eat starchy food when I take gleevec so am using a number of food supplements because I can't eat many green veggies, fruit or protein anymore. I guess all this gets to be too much and I feel depressed because I can't seem to get a handle on everything. One of the things I hate the most is seemingly having to define who I am by the side effect of the day! Sorry for the long email but I've learned more from this group than I ever did from my oncologist (who I've only seen 2 times) and I end up instructing my primary care physician about CML and gleevec from what I've learned from this group...so if anyone would like to comment, I'd appreciate it. Thanks, Margaret Cogan <ncogan@...> wrote: At 05:33 PM 12/3/06 -0800, you wrote: >What is dasatanib? And what is log reduction? And BMS? Don't know the >lingo yet! > >I'm new, been on gleevec only 5 wks, lotsa side effects..some days I think >I'm doing pretty good, other days are awful! > >Margaret Hi Margaret, The 2nd CML drug that is now approved is made by BMS (Bristol Meyers-Squibb)......the scientific name is dasatinib.....trade name is Sprycel. So, all of these relate to one drug....which is a 2nd generation drug developed after Gleevec. When you get a PCR value......it is a number, maybe like 2.4 When you have a one log reduction in this value (which represents how many leukemia cells you have) the number is reduced to 0.24.............. a 2-log reduction is 0.024..............a 3-log reduction is 0.0024 The goal is to reach a 3-log reduction, as the chance of relapse is almost nil then. A log is 10X.......so you just move the decimal point one place, for an increase or a decrease. Let the list know about your side effects and someone might have a suggestion. It takes a bit to stabilize on the drug and usually the side effects get less over time. C. Margaret , mpraymond@... margaret-raymond@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2006 Report Share Posted December 4, 2006 I looked up my beginning meds,first let me say I was diagnosed from the Texas cancer research in Harlington Tx.I was a winter texan. 800 gleevec 500 hydroxyurea both are to kill off bad wc,and a by product is gout 300 mg allopurinol takes care of that. Also it was the cheapest med. I was monitored every week .I came down from 154000 wc to 40000 in 2 weeks.But a lot of side affects ,those 2 weeks. Tn. Hope this helps Margaret RE: [ ] What are my options? Thanks, for the information. My diagnosis was made with the fish blood test 2 months ago. I'll have a bone marrow in 5 more months. On 600 mg gleevec which reduced my w. blood count from 128,000 to 9,000 in 3 weeks. Side effects are numerous but bone/muscle pain, nasaua, fatigue, fluid retention in my face, muscle cramps, bleury vision are the worse. it seems like one is quickly replaced by another and they can change every day. As example, nasaua was a real problem but by the time I got a script from the doc it went away. It seems almost like a variety of " phantom symptoms " which makes me feel like a hypochondriac. Davocette works best for bone pain and I take about 5 - 6 a week, no more than one a day...also take 2 Aleve daily. I'm working mornings but usually spend the afternoons and evenings napping. There's been major diet change. I have to eat starchy food when I take gleevec so am using a number of food supplements because I can't eat many green veggies, fruit or protein anymore. I guess all this gets to be too much and I feel depressed because I can't seem to get a handle on everything. One of the things I hate the most is seemingly having to define who I am by the side effect of the day! Sorry for the long email but I've learned more from this group than I ever did from my oncologist (who I've only seen 2 times) and I end up instructing my primary care physician about CML and gleevec from what I've learned from this group...so if anyone would like to comment, I'd appreciate it. Thanks, Margaret Cogan <ncoganuoregon (DOT) edu> wrote: At 05:33 PM 12/3/06 -0800, you wrote: >What is dasatanib? And what is log reduction? And BMS? Don't know the >lingo yet! > >I'm new, been on gleevec only 5 wks, lotsa side effects..some days I think >I'm doing pretty good, other days are awful! > >Margaret Hi Margaret, The 2nd CML drug that is now approved is made by BMS (Bristol Meyers-Squibb) ......the scientific name is dasatinib... ..trade name is Sprycel. So, all of these relate to one drug....which is a 2nd generation drug developed after Gleevec. When you get a PCR value......it is a number, maybe like 2.4 When you have a one log reduction in this value (which represents how many leukemia cells you have) the number is reduced to 0.24........ ...... a 2-log reduction is 0.024....... .......a 3-log reduction is 0.0024 The goal is to reach a 3-log reduction, as the chance of relapse is almost nil then. A log is 10X.......so you just move the decimal point one place, for an increase or a decrease. Let the list know about your side effects and someone might have a suggestion. It takes a bit to stabilize on the drug and usually the side effects get less over time. C. Margaret , mpraymond@sbcglobal .net margaret-raymond@ cherokee. org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2006 Report Share Posted December 4, 2006 Dear,: (from sunny London) I am worried to hear that you are having alot of shortness of breath. I was on Gleevec from June of 2001 to Oct 2006. For the last 6 to 9 months I had alot of shortness of breath also, I did my best to just ignore it, but I remembered hearing the Gleevec ( as well as other new leukemia drugs) have been linked to heart damage, they are calling it (CHF- congestive heart failure). Well I mentioned to my Onc, that I have heard of this study then I told him that I had been having shortness of breath. He did an office exam, but found no signs of CHF, but he said that to be sure, he would do a (echo- ultra sound on the heart). That test showed that indeed I have CHF and they did surgery right away and installed a defibrillator. My heart feels better but we stoped all meds for the leukemia. My last fish test showed that Im no longer a member of Zavie's Zero club, but we are still not sure what to do next. Dr. Weeks is checking on that and I see him again soon. Anyway what Im trying to say is that you are right to be worried about the shortness of breath, maybe think about getting the echo test on your heart. Best wishes to the group. TTFN. ________________________________________________________________________________\ ____ Have a burning question? Go to www.Answers. and get answers from real people who know. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2006 Report Share Posted December 4, 2006 At 05:12 AM 12/4/06 -0800, you wrote: >Thanks, for the information. > >My diagnosis was made with the fish blood test 2 months ago. I'll have a >bone marrow in 5 more months. On 600 mg gleevec which reduced my w. blood >count from 128,000 to 9,000 in 3 weeks. That is showing a good response. You have mostly leukemia white cells and the drug is killing them off quickly. >Side effects are numerous but bone/muscle pain, nasaua, fatigue, fluid >retention in my face, muscle cramps, bleury vision are the worse. it seems >like one is quickly replaced by another and they can change every day. As >example, nasaua was a real problem but by the time I got a script from the >doc it went away. It seems almost like a variety of " phantom symptoms " >which makes me feel like a hypochondriac. Bone and muscle pain in typical and is thought to be because leukemia cells are being killed off. Fatigue is typical....many find they need to pace themselves and even nap. Blurry vision can be from some edema (excess tear formation). You might ask your doctor about trying a mild diuretic like diazide as needed. I think the side effects are more acceptable when you realize that you are on a drug (that is causing them) that is killing off your leukemia cells. >Davocette works best for bone pain and I take about 5 - 6 a week, no more >than one a day...also take 2 Aleve daily. I'm working mornings but usually >spend the afternoons and evenings napping. OHSU/Dr. Druker do say that some people need drugs for the bone pain initially....for most, this gets better over time. >There's been major diet change. I have to eat starchy food when I take >gleevec so am using a number of food supplements because I can't eat many >green veggies, fruit or protein anymore. Are you taking Gleevec at one or two meals? I always needed more food when I took my Gleevec....but the rest of the day, I could eat healthy. >I guess all this gets to be too much and I feel depressed because I can't >seem to get a handle on everything. One of the things I hate the most is >seemingly having to define who I am by the side effect of the day! Having cancer to deal with means losing some control......that can be hard for many of us. But how you feel about this and the attitude you have.....that's up to you. When you are feeling negative, try to turn it around to another perspective and try to see something positive.........like, " I am really lucky to have this drug " ......monitor your self-talk and practice some positive affirmations. If you wonder where my crazy ideas come from, I was a physical therapist for 30 years. If you focus on the negative, you will feel negative.......you can just as easily (almost always) find something positive to focus on. That's my 2-cents on all this stuff. C. >Sorry for the long email but I've learned more from this group than I ever >did from my oncologist (who I've only seen 2 times) and I end up >instructing my primary care physician about CML and gleevec from what I've >learned from this group...so if anyone would like to comment, I'd >appreciate it. >Thanks, >Margaret > > Cogan <<mailto:ncogan@...>ncogan@...> wrote: >At 05:33 PM 12/3/06 -0800, you wrote: > > >What is dasatanib? And what is log reduction? And BMS? Don't know the > >lingo yet! > > > >I'm new, been on gleevec only 5 wks, lotsa side effects..some days I think > >I'm doing pretty good, other days are awful! > > > >Margaret > >Hi Margaret, > >The 2nd CML drug that is now approved is made by BMS (Bristol >Meyers-Squibb)......the scientific name is dasatinib.....trade name is >Sprycel. So, all of these relate to one drug....which is a 2nd generation >drug developed after Gleevec. > >When you get a PCR value......it is a number, maybe like 2.4 >When you have a one log reduction in this value (which represents how many >leukemia cells you have) the number is reduced to 0.24.............. >a 2-log reduction is 0.024..............a 3-log reduction is 0.0024 >The goal is to reach a 3-log reduction, as the chance of relapse is almost >nil then. >A log is 10X.......so you just move the decimal point one place, for an >increase or a decrease. > >Let the list know about your side effects and someone might have a >suggestion. It takes a bit to stabilize on the drug and usually the side >effects get less over time. > > C. > >Margaret , ><mailto:mpraymond@...>mpraymond@... ><mailto:margaret-raymond@...>margaret-raymond@... > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2006 Report Share Posted December 4, 2006 Hi , Once you get a number in the Zero Club, it is a lifetime membership. So, #1007 remains your number. Some patients will drop out and come back to Zero. Also, if you use the most accurate PCR test available, you will always find some pH+ cells. I was surprised to hear that they installed a defibrillator right away. When I was diagnosed with CHF as the direct result of taking Interferon all they did was put me on an ACE inhibitor. That was 7 years ago. Maybe they do things differently today. My EF runs around 25%. I started Gleevec in March 2001 and have been on 400 mg ever since. It troubles me that you are not on any CML medication at all. Perhaps a consultation with the people at OHSU will get you on some medication for your CML. CHF is a well known side effect of Interferon. CHF is a very rare side effect of Gleevec. Zavie Zavie (age 68) 67 Shoreham Avenue Ottawa, Canada, dxd AUG/99 INF OCT/99 to FEB/00, CHF No meds FEB/00 to JAN/01 Gleevec since MAR/27/01 (400 mg) CCR SEP/01. #102 in Zero Club PCRU 5/02 at RVH (Questionable) 2.8 log reduction Sep/05 3.0 log reduction Jan/06 e-mail: zmiller@... Tel: 613-726-1117 Fax: 309-296-0807 Cell: 613-202-0204 ID: zaviem > > > Dear,: (from sunny London) > > I am worried to hear that you are having alot of shortness of breath. > I was on Gleevec from June of 2001 to Oct 2006. For the last 6 to 9 > months I had alot of shortness of breath also, I did my best to just > ignore it, but I remembered hearing the Gleevec ( as well as other new > leukemia drugs) have been linked to heart damage, they are calling it > (CHF- congestive heart failure). Well I mentioned to my Onc, that I > have heard of this study then I told him that I had been having > shortness of breath. He did an office exam, but found no signs of CHF, > but he said that to be sure, he would do a (echo- ultra sound on the > heart). That test showed that indeed I have CHF and they did surgery > right away and installed a defibrillator. My heart feels better but we > stoped all meds for the leukemia. My last fish test showed that Im no > longer a member of Zavie's Zero club, but we are still not sure what to > do next. Dr. Weeks is checking on that and I see him again soon. Anyway > what Im trying to say is that you are right to be worried about the > shortness of breath, maybe think about getting the echo test on your > heart. > Best wishes to the group. > TTFN. > > > > > > _____________________________________________________________________ _______________ > Have a burning question? > Go to www.Answers. and get answers from real people who know. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2006 Report Share Posted December 4, 2006 While I agree that anyone with shortness of breath should pursue heart testing, I want to reassure you that just because you have this symptom, doesn't mean you have CHF. I had shortness of breath to the point where I was panting vigorously after just bending down to tie my shoes and it turned out to be nothing. This was long before there were reports of Gleevec causing CHF but I had it checked anyway since it was severely impacting my life at the time. I had a variety of tests done including stress tests, echos, xrays, holter monitors and lung function tests. Everything showed my heart to be in terrific shape. I guess the point of all this is to say that yes, I think everyone who has shortness of breath, should have it evaluated, but on that same note, don't panic before you have to because it could be nothing. Tracey dx Jan 2002 > > > Dear,: (from sunny London) > > I am worried to hear that you are having alot of shortness of breath. > I was on Gleevec from June of 2001 to Oct 2006. For the last 6 to 9 > months I had alot of shortness of breath also, I did my best to just > ignore it, but I remembered hearing the Gleevec ( as well as other new > leukemia drugs) have been linked to heart damage, they are calling it > (CHF- congestive heart failure). Well I mentioned to my Onc, that I > have heard of this study then I told him that I had been having > shortness of breath. He did an office exam, but found no signs of CHF, > but he said that to be sure, he would do a (echo- ultra sound on the > heart). That test showed that indeed I have CHF and they did surgery > right away and installed a defibrillator. My heart feels better but we > stoped all meds for the leukemia. My last fish test showed that Im no > longer a member of Zavie's Zero club, but we are still not sure what to > do next. Dr. Weeks is checking on that and I see him again soon. Anyway > what Im trying to say is that you are right to be worried about the > shortness of breath, maybe think about getting the echo test on your > heart. > Best wishes to the group. > TTFN. > > > > > > _____________________________________________________________________ _______________ > Have a burning question? > Go to www.Answers. and get answers from real people who know. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2006 Report Share Posted December 4, 2006 Thanks for your good suggestions and insight. Yes, staying positive has been a challenge for me. I'll try harder. Margaret Cogan <ncogan@...> wrote: At 05:12 AM 12/4/06 -0800, you wrote: >Thanks, for the information. > >My diagnosis was made with the fish blood test 2 months ago. I'll have a >bone marrow in 5 more months. On 600 mg gleevec which reduced my w. blood >count from 128,000 to 9,000 in 3 weeks. That is showing a good response. You have mostly leukemia white cells and the drug is killing them off quickly. >Side effects are numerous but bone/muscle pain, nasaua, fatigue, fluid >retention in my face, muscle cramps, bleury vision are the worse. it seems >like one is quickly replaced by another and they can change every day. As >example, nasaua was a real problem but by the time I got a script from the >doc it went away. It seems almost like a variety of " phantom symptoms " >which makes me feel like a hypochondriac. Bone and muscle pain in typical and is thought to be because leukemia cells are being killed off. Fatigue is typical....many find they need to pace themselves and even nap. Blurry vision can be from some edema (excess tear formation). You might ask your doctor about trying a mild diuretic like diazide as needed. I think the side effects are more acceptable when you realize that you are on a drug (that is causing them) that is killing off your leukemia cells. >Davocette works best for bone pain and I take about 5 - 6 a week, no more >than one a day...also take 2 Aleve daily. I'm working mornings but usually >spend the afternoons and evenings napping. OHSU/Dr. Druker do say that some people need drugs for the bone pain initially....for most, this gets better over time. >There's been major diet change. I have to eat starchy food when I take >gleevec so am using a number of food supplements because I can't eat many >green veggies, fruit or protein anymore. Are you taking Gleevec at one or two meals? I always needed more food when I took my Gleevec....but the rest of the day, I could eat healthy. >I guess all this gets to be too much and I feel depressed because I can't >seem to get a handle on everything. One of the things I hate the most is >seemingly having to define who I am by the side effect of the day! Having cancer to deal with means losing some control......that can be hard for many of us. But how you feel about this and the attitude you have.....that's up to you. When you are feeling negative, try to turn it around to another perspective and try to see something positive.........like, " I am really lucky to have this drug " ......monitor your self-talk and practice some positive affirmations. If you wonder where my crazy ideas come from, I was a physical therapist for 30 years. If you focus on the negative, you will feel negative.......you can just as easily (almost always) find something positive to focus on. That's my 2-cents on all this stuff. C. >Sorry for the long email but I've learned more from this group than I ever >did from my oncologist (who I've only seen 2 times) and I end up >instructing my primary care physician about CML and gleevec from what I've >learned from this group...so if anyone would like to comment, I'd >appreciate it. >Thanks, >Margaret > > Cogan <<mailto:ncogan@...>ncogan@...> wrote: >At 05:33 PM 12/3/06 -0800, you wrote: > > >What is dasatanib? And what is log reduction? And BMS? Don't know the > >lingo yet! > > > >I'm new, been on gleevec only 5 wks, lotsa side effects..some days I think > >I'm doing pretty good, other days are awful! > > > >Margaret > >Hi Margaret, > >The 2nd CML drug that is now approved is made by BMS (Bristol >Meyers-Squibb)......the scientific name is dasatinib.....trade name is >Sprycel. So, all of these relate to one drug....which is a 2nd generation >drug developed after Gleevec. > >When you get a PCR value......it is a number, maybe like 2.4 >When you have a one log reduction in this value (which represents how many >leukemia cells you have) the number is reduced to 0.24.............. >a 2-log reduction is 0.024..............a 3-log reduction is 0.0024 >The goal is to reach a 3-log reduction, as the chance of relapse is almost >nil then. >A log is 10X.......so you just move the decimal point one place, for an >increase or a decrease. > >Let the list know about your side effects and someone might have a >suggestion. It takes a bit to stabilize on the drug and usually the side >effects get less over time. > > C. > >Margaret , ><mailto:mpraymond@...>mpraymond@... ><mailto:margaret-raymond@...>margaret-raymond@... > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 2006 Report Share Posted December 6, 2006 Cam, Have you spoken to your oncologist about Sprycel. I have been on Gleevec for 10 months and then had to come off to do side effects. Sprycel has only been FDA approved since July of this year so there isn't a ton of information out there. One of the prerequisites is to have been on Gleevec and had to quit taking it. I hope this helps, Chuck Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2006 Report Share Posted December 7, 2006 Cam, I am not sure, you will have to ask your oncologist on that. I am currently in remission and I was when they switched me over to the Sprycel. Chuck -- In , Corakee <coralee.williams@...> wrote: > > Hi Chuck, > > Do you know if Sprycel greatly affects your blood counts? Can I go on it if > my counts are still quite low? > > Cam > > > On 12/6/06 4:32 PM, " full_of_chuckles " <no_reply > wrote: > > > > > > > > > > > Cam, > > Have you spoken to your oncologist about Sprycel. I have been on > > Gleevec for 10 months and then had to come off to do side effects. > > Sprycel has only been FDA approved since July of this year so there > > isn't a ton of information out there. One of the prerequisites is to > > have been on Gleevec and had to quit taking it. > > I hope this helps, > > Chuck > > > > > > > > > > This email has been scanned by Barracuda Network's Anti-Virus and Spam Firewall. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2010 Report Share Posted August 8, 2010 I cant believe they made you clean it the first time. doesn't sound like you have many options if you cant quit. document everything. is there a cleaner,uncontaminated area that you could be tranfered to? > > Last December my work place had a really bad mold outbreak. We were made to clean it without any protection for our breathing or anything like that. My bosses took measures to rectify the problem, but there is still what appears to be a mild mold problem (of course they always say that what you don't see is much worse than what you do see). > Anyhow, around that time I started having really really bad allergy-like symptoms. I chalked it up to...allergies. Until I had an allergy test and came back allergic to NOT A SINGLE THING, not even dogs (this is important because I work with dogs)! So they did a pulmonary function test. My PFT came back at 40%... I have a friend who is 32 and has cystic fibrosis, that is HER pulmonary function. I am now on a daily dose of Singulair and an inhaler. I also have to have surgery on my sinuses to have my turbinates reduced because they are so enlarged from irritation. > For information, I'm 24 years old and have no medical history Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2010 Report Share Posted August 8, 2010 mold causes respiratory problems, get out asap if you can! a lot of people on this list wish they had gotten out sooner before their health deteriorated further and sometimes irreversibly bleach kills but doesn't remove toxic mold particles, the improper cleaning is probably just spreading it all around and making it worse if singular is a steroid inhaler, that can encourage fungal growth in the body, but i'm not suggesting you shouldn't use it, i am not a doctor most doctors don't recognize mold as a health issue or cause of health problems so don't be surprised if your doctor says the mold is nothing your employer/landlord will not help you, he has no interest in understanding or fixing the problem the right (expensive) way best of luck, sue v >Last December my work place had a really bad mold outbreak. We were made >to clean it without any protection for our breathing or anything like >that. My bosses took measures to rectify the problem, but there is still Quote Link to comment Share on other sites More sharing options...
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