Re: [CMLHope] have you ever had a pcr increase?
the same happened to my mother, after 7 years undetactable her pcr raised, then went down again, now she is 0,09, I don`t know if it is too much, but is better than 2 months ago when she was 1,09 -Mensaje original- From: daniel Sent: Tuesday, December 06, 2011 2:41 AM To: CMLHope Subject: [CMLHope] have you ever had a pcr increase? Hi all, This is my first post here. I have had CML for a bit over 4 years now. I took gleevec for the first 2 and tasigna since. My pcr has been low for about 3 years now (about 2.5 log decrease), but never undetectable. Once in the past I had a pcr rise on a single measurement that then went down again on the next test. I have had this again in my most recent test. The rise was not large and the pcr value is still low in absolute terms. My onc wants to test again in 6 weeks. As you might guess, I am pretty nervous. My question is, has anyone else ever had an increase in their pcr after years of treatment? If so, was it temporary or did it signal treatment resistance? Just trying to get a sense for how frequently fluctuations occur. Thanks for any input. Thanks, Daniel -- [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 -- [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
Re: [CMLHope] Re: nosebleeds
I was wondering if anyone has had any problems with pins and needle feeling in there hands. I thought i have read in the past about hand cramping with Gleevec is that true. This is mostly pins and needle feeling in hands...once or twice hand cramping.. Could any of you on the list tell me anything you know about this Thank You Teepee In a message dated 10/25/2011 3:08:16 P.M. Eastern Standard Time, rszim0...@aol.com writes: The first brain bleed, my face and arm on the right side went numb. I happened to be in a doc's office with someone I was watching over. They insisted on shipping me via ambulance to the E.R. across the street. They saw it on an MRI. A cat scan showed it also. Then 2 yrs later I had a full-blown stroke when I was NOT on gleevec. Had an eye bleed again this week, so am becoming a little concerned. Last week my cbc showed normal. 18's, Susan Hi and how did you know you had a brain bleed? Jeanie<3 In a message dated 10/1/2011 4:41:07 P.M. Pacific Daylight Time, _rszim0702@aol.com_ (mailto:rszim0...@aol.com) writes: Teepee, I have been off gleevec for 4 1/2 years now since the first brain bleed. I'm still in cellular remission and am so glad. I am on no medication for CML at all, but very very slowly my numbers are climbing up there. I had been in total remission for 2 years before going off. I'm sure that helps. More doctors are giving vacations from the drugs as they see people are holding their numbers if they've been in total remission for a long time. My doc wants me on something, but I am waiting until I come out of cellular remission. Blessings, Susan F. Zimmerman -Original Message- From: Teepee710 <_Teepee710@aol.com_ (mailto:teepee...@aol.com) > To: cmlhope <_cmlhope@googlegroups.com_ (mailto:cmlhope@googlegroups.com) > Sent: Sat, Oct 1, 2011 12:59 pm Subject: Re: [CMLHope] Re: Problems with Food and Gleevec MaggyMay Thanks... i had mentioned that to him about the saline solution, as our weather is changing. TEEPEE In a message dated 10/1/2011 8:36:18 A.M. Eastern Daylight Time, _kneesrbad2@gmail.com_ (mailto:kneesrb...@gmail.com) writes: Gleevec dries out the sinuses which then creates nose bleeds. Use a saline nasal mist and a neti pot. It helps a lot. Be sure if u live in the snow country your furnace has a working humidifier. On Sep 30, 2011 9:46 PM, <_Teepee710@aol.com_ (mailto:teepee...@aol.com) > wrote: > Could anyone tell me if thee is any connection between nose bleeds and > gleevec. > > teepee > > In a message dated 9/30/2011 3:38:41 P.M. Eastern Daylight Time, > _maggymay@bellsouth.net_ (mailto:maggy...@bellsouth.net) writes: > > > Was on Sprycel and experienced shortness of air. Hematologist stopped the > Sprycel. Before that was on 400mg Gleevac and it was stopped due to Eye > bleeds, bilateral. Now am reinitiated on Gleevac 100mg every day and all > is well. Barely detectable Philadelphia Chromosomes per the BCR ABL. > > > > > > > From: kellyelise <_kellyelise5@aol.com_ (mailto:kellyeli...@aol.com) > > To: CMLHope <_cmlhope@googlegroups.com_ (mailto:cmlhope@googlegroups.com) > > Sent: Friday, September 30, 2011 1:05 PM > Subject: [CMLHope] Re: Problems with Food and Gleevec > > Thank you for the info on Dr. Talpaz - I had sent him an email a while > back but received no reply. My onc NP recommended Dr. Jorge Cortes at > MD Anderson in Houston - and that's where I'm going!! They called > yesterday and I have an appt. on Oct. 10. Thank God for my mother, I > could not afford to go without her. Wishing you all the best!! Those > on Sprycel, please watch for symptoms of SOB, weakness, inability to > climb stairs, weight loss (initially I had a lot of weight gain - > Aldactone and Demadex took most of the fluid off), loss of appetite, > etc. You can find the symptoms of PAH through any search engine > (Google). It is a disease that is VERY difficult to diagnose!! > > Bless you all!! > > Kelly > > On Sep 27, 9:30 am, kellyelise <_kellyeli...@aol.com_ > (mailto:_kellyeli...@aol.com_ (mailto:kellyeli...@aol.com) ) > wrote: >> Suzieq, >> >> You are not whining or complaining!! We all have to vent sometime! >> Quite frankly, I am grateful to be off all TKIs as of now. The Sprycel >> about did me in. I don't know if you remember, but, I now have PAH >> (pulmonary arterial hypertension) as a result of the Sprycel. I >> underwent a heart cath in 1/11 and am now sporting a continuous >> infusion pump carrying Remodulin through a central venous catheter. >> Not pretty, but I feel better than I have in YEARS. I can actually >> walk around town now whereas I could barely climb 3 steps withou
Fwd: [CMLHope] tingling in hands....
From: teepee...@aol.com To: cmlhope@googlegroups.com Sent: 12/6/2011 3:30:48 P.M. Eastern Standard Time Subj: Re: [CMLHope] Re: nosebleeds I was wondering if anyone has had any problems with pins and needle feeling in there hands. I thought i have read in the past about hand cramping with Gleevec is that true. This is mostly pins and needle feeling in hands...once or twice hand cramping.. Could any of you on the list tell me anything you know about this Thank You Teepee -- [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
Re: Fwd: [CMLHope] tingling in hands....
I have been on Gleevec for almost 11 years now, and I still get hand muscle cramps...actually, cramps anywhere and everywhere when there is sustained pressure on the muscles..e.g. drying lots of dishes, cutting with scissors, polishing silver, rolling cookie batter, walking a long time, etc and etc. You just have to shake out the muscles and get on with life. What lies behind us and what lies before us are tiny matters compared to what lies within us Angie From: "teepee...@aol.com" To: CMLHope@googlegroups.com Sent: Tuesday, December 6, 2011 3:32:31 PM Subject: Fwd: [CMLHope] tingling in hands From: teepee...@aol.com >To: cmlhope@googlegroups.com >Sent: 12/6/2011 3:30:48 P.M. Eastern Standard Time >Subj: Re: [CMLHope] Re: nosebleeds >I was wondering if anyone has had any problems with pins and needle feeling in >there hands. >I thought i have read in the past about hand cramping with Gleevec is that >true. >This is mostly pins and needle feeling in hands...once or twice hand cramping.. >Could any of you on the list tell me anything you know about this > Thank >You > Teepee-- > [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 -- [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
Re: [CMLHope] Re: nosebleeds
I have been on Gleevec since March '09 and get hand and leg cramps fairly often. Somewhere along the way I read that I should put a bar of soap in between my bottom and top sheets and it would help. I know it sounds crazy, but it actually has worked for me because when I've changed sheets and forgotten to put the bar back, the cramps return. I don't have the tingling but hand cramps are a problem. I've also had at least 5 eye bleeds in the last year. I try to look at the big picture and I am beyond grateful that my life, for the most part, continues as normal. What would we do without Gleevec, Sprycel and Tasigna??? Marcie Baltimore -Original Message- From: Teepee710 To: cmlhope Sent: Tue, Dec 6, 2011 3:31 pm Subject: Re: [CMLHope] Re: nosebleeds I was wondering if anyone has had any problems with pins and needle feeling in there hands. I thought i have read in the past about hand cramping with Gleevec is that true. This is mostly pins and needle feeling in hands...once or twice hand cramping.. Could any of you on the list tell me anything you know about this Thank You Teepee In a message dated 10/25/2011 3:08:16 P.M. Eastern Standard Time, rszim0...@aol.com writes: The first brain bleed, my face and arm on the right side went numb. I happened to be in a doc's office with someone I was watching over. They insisted on shipping me via ambulance to the E.R. across the street. They saw it on an MRI. A cat scan showed it also. Then 2 yrs later I had a full-blown stroke when I was NOT on gleevec. Had an eye bleed again this week, so am becoming a little concerned. Last week my cbc showed normal. 18's, Susan Hi and how did you know you had a brain bleed? Jeanie<3 In a message dated 10/1/2011 4:41:07 P.M. Pacific Daylight Time, rszim0...@aol.com writes: Teepee, I have been off gleevec for 4 1/2 years now since the first brain bleed. I'm still in cellular remission and am so glad. I am on no medication for CML at all, but very very slowly my numbers are climbing up there. I had been in total remission for 2 years before going off. I'm sure that helps. More doctors are giving vacations from the drugs as they see people are holding their numbers if they've been in total remission for a long time. My doc wants me on something, but I am waiting until I come out of cellular remission. Blessings, Susan F. Zimmerman -Original Message- From: Teepee710 To: cmlhope Sent: Sat, Oct 1, 2011 12:59 pm Subject: Re: [CMLHope] Re: Problems with Food and Gleevec MaggyMay Thanks... i had mentioned that to him about the saline solution, as our weather is changing. TEEPEE In a message dated 10/1/2011 8:36:18 A.M. Eastern Daylight Time, kneesrb...@gmail.com writes: Gleevec dries out the sinuses which then creates nose bleeds.Use a saline nasal mist and a neti pot. It helps a lot. Be sure if u live in the snow country your furnace has a working humidifier. On Sep 30, 2011 9:46 PM, wrote: > Could anyone tell me if thee is any connection between nose bleeds and > gleevec. > > teepee > > In a message dated 9/30/2011 3:38:41 P.M. Eastern Daylight Time, > maggy...@bellsouth.net writes: > > > Was on Sprycel and experienced shortness of air. Hematologist stopped > the > Sprycel. Before that was on 400mg Gleevac and it was stopped due to Eye > bleeds, bilateral. Now am reinitiated on Gleevac 100mg every day and > all > is well. Barely detectable Philadelphia Chromosomes per the BCR ABL. > > > > > > > From: kellyelise > To: CMLHope > Sent: Friday, September 30, 2011 1:05 PM > Subject: [CMLHope] Re: Problems with Food and Gleevec > > Thank you for the info on Dr. Talpaz - I had sent him an email a while > back but received no reply. My onc NP recommended Dr. Jorge Cortes at > MD Anderson in Houston - and that's where I'm going!! They called > yesterday and I have an appt. on Oct. 10. Thank God for my mother, I > could not afford to go without her. Wishing you all the best!! Those > on Sprycel, please watch for symptoms of SOB, weakness, inability to > climb stairs, weight loss (initially I had a lot of weight gain - > Aldactone and Demadex took most of the fluid off), loss of > appetite, > etc. You can find the symptoms of PAH through any search engine > (Google). It is a disease that is VERY difficult to diagnose!! > > Bless you
