Hi Mar, and I do know and sympathize with what your are going through. My first onc never ever told me to quit the meds because of side effects. He just made sure to keep checking my blood counts all the time. His nurse asked me once why didn't I just put in a bed an stay at his office hehe. Since my blood would not get back to normal, (my platelets and WBC were too high) he was giving me other meds as well and I had to have blood drawn all the time. It was a hard year, and after almost 5 years Gleevec quit working for me. Just take one day at the time and deal with the side effects as they present themselves. I too had a terrible rash and horrible sores that looked like boils. They would appear in circles of three and were very painful. My PD took care of these and the rashes. Hang in there warrior and fight on, Jeanie<3 In a message dated 12/14/2013 2:31:12 A.M. Eastern Standard Time, [email protected] writes:
Thank you all for sharing your experience and journeys with CML. I was glad to hear others continue to work as well. I love what I do. I have a great job and would hate to go on sick leave (even short term). I do have the support of my co-workers and director. But, I must admit I am exhausted much of the time and wondered if my working was causing more problems than helping since I am now into my 2nd TKI and fourth toxicity. (Maybe I am not taking care of myself if I am working?? question) It has been tough to think about this disease and how it is changing my life. I keep thinking "Fight and keep on fighting, don't live the disease, live life!'. Easier said than done some days. I was suppose to leave for my daughters today. However, I am not able to be around many people with my neutrophils being very low... as I could get infections etc. So, this is very disappointing and I know it will take me a few weeks for my blood levels (platelets, wbc and neutrophils) to reach even the lower end of the normal range. It typically takes me 4 to 5 weeks to recover from cytopenia. I just came off of a month of being sick with a cold/flu, my one eye enlarging so big I could not see out of it (from the medication) and an itchy rash (again from the medication). The bone pain is in my legs and it often feels like the muscles are being ripped from the bone. Excruciating. My doctor keeps telling me to take the medication and doesn't want to hear about side effects. So, I keep taking my medication. I know I am going to a well respected place, Vancouver General Hospital and the Bone Marrow Transplant Centre's clinic. My hematologist specializes in Leukemia and BMT's so she is well educated and experienced with the disease. But, I don't feel supported.. holistically.. they appear to be focused on 'quantity' rather than 'quality' of life. Does that make sense? I just hope the side effects get easier to handle and that there is one drug that will work for a longer period of time. (The roller coaster and with toxicity and different side effects from different drugs is exhausting). I apologize if this sounds like 'bah humbug, poor me'. But, I am exhausted from this journey already. However, I will repeat 'Stay strong and stay happy and 1 and 8'. Maybe I will have a good post next week when my genetic report comes back. (Fingers crossed). Mar On Thursday, December 12, 2013 6:42:51 AM UTC-8, Mar wrote: Hi, I am new to the group. I was diagnosed January 10 2013. Since then I have been on Gleevec, failed (due to toxicity twice) and was switched to Dasatinib which I have toxicity to as well and had to stop taking the medication. Each time I have had the toxicity my blood levels are so low that it takes 4-5 weeks for them (neutrophils, platelets and wbc's) to go back to even the lower range of normal. Thus, I have not yet had any cytogenic or molecular recovery.. if anything, my last result was going backward. I have another appointment on December 19th to see if there is any recovery at all... I am keeping my fingers crossed. It has been quite the roller coaster... I am not sure if others have had the same type of roller coaster in the first year. I just ran into this group tonight and I appreciated reading others emails about their recovery... thank- you.. Hope to be able to post one of my own recovery stories one of these days. Mar -- -- [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 [email protected] To unsubscribe from this group, send email to [email protected] For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to [email protected]. For more options, visit https://groups.google.com/groups/opt_out. -- -- [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 [email protected] To unsubscribe from this group, send email to [email protected] For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to [email protected]. For more options, visit https://groups.google.com/groups/opt_out.
