Hi Mar, Exactly where are you located? Are there any CML speciallists where you live? If so then try to get an appointment to see them. The more knowledge you can have about CML the better you will understand.
There are many on this site that have or still going through some of the same things that you are experiencing. It may be a long road but it is worth every second because in todays world there are still a lot of different kinds of treatments for CML. When I was diagnoised with CML it was in the summer of 1988, and there was nothing available but having a bone marrow transplnt which I had to have and i'm still here today. Try not to worry too much there will be something that will work for you. I know that it is very stressful for you but just try to relax and find a good CML doctor. Take real good care of yourself and have a very happy and healthy holiday season. 18's Marty On Fri, Dec 13, 2013 at 6:34 AM, <[email protected]> wrote: > Hi Mar, I've been with this group of people starting I think back in > 2001. Found out I had CML two weeks before Xmas of 1998. Was put on > Interferon for 3 months which almost killed me. A couple of months later > my Doctor in Chicago, Northwestern University put me in a study with 7 > others people from Chicago land. I was the only one from Northwest > Indiana. Their were 200 people from the US in this study. Novartis > was head of the research of this study. This was before Gleevec was > approved by the FDA. > > Within 6 months I was in remission and I've been on STI571 (Gleevec) all > these years. Started on Jan. 10th of 2000. You will find out that in this > CML group you will get more information from our members and their care > takers that you won't get from most Doctors. If at any time you have any > questions this is the place to get the real facts. Good luck to you and > welcome to the group. > > Dave (Greenie) Greenberg > > In a message dated 12/13/2013 2:15:03 A.M. Eastern Standard Time, > [email protected] writes: > > Thank you everyone for responding. Feels less like you are on an isolated > island... there are no support groups in my area... so, I do appreciate > your emails with encouragement and support. > > I was glad to hear there are other medications. I gather this is a long > journey... to figure out which drug and at what level... not one that can > be answered quickly. I find the side effects difficult to deal with as I > continue to work. Not sure if it is possible to work while all of this is > being figured out. Do most people continue working? > > Richard, diagnosed in 2003 and there are still mountains? I guess I am > expecting to much to soon. > > Beth, My hematologist specialist didn't put me on the 100mg I was on at > the beginning because of the first toxicity. I have been on 20 mg which > doesn't seem to be much but, I can't believe my body doesn't even like the > 20 mg... I just learned today I am back into the toxicity and cytopenias. > I have side effects to Diasanatib I didn't have on the Gleevec as well. I > found the 100 mg gave me insomnia, medically induced depression and rash... > I only have the rash at 20mg. But, seem to have a lot of bone pain lately. > > I am giving you all a big hug and thank you for your emails as it is nice > to know there are people who understand much more than I do (being such a > newbie). I look forward to hearing from all and learning from you. I hope > all of you are doing well in your own journey :) > > Ididn't know that 1and 8 meant life.. will post this in front of me for > inspiration! > > Cheers, > Mar > > On Thursday, December 12, 2013 8:25:25 PM UTC-8, Richard H wrote: >> >> Welcome to this group. Almost every one has had problems adjusting to >> the meds. Try your best to remain positive as that seems to help most of >> us. We are here to listen and in return we give back what we have learned >> to get over this little hill at this moment. I was diagnosed in 2003 and >> the mountain I have to climb is still on the horizon. >> >> Richard H. >> >> On Thursday, December 12, 2013 8:42:51 AM UTC-6, 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 > ------------------------------------------------- > > 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. > -- -- [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.
