Hi Mar and welcome to our group. I have been fighting CML since Jan of 2004. I started on Gleevec, and it took a lot of ups and downs to get my blood to behave. I never reached PCRU while on Gleevec. This first year was a nightmare, but I made myself get up off the couch and walk or work. I didn't work outside the home, but have always been very active in gardening and yard work. One day at a time is all I can tell you. I had so many side effects while on Gleevec that were so awful it's hard to talk about them. I never knew what was going to happen next as I fought each side effect the best I could. We call ourselves Warriors and that is because we fight this disease with everything in our power to live on for another day. Read and collect all the information you can on CML, and listen to others as they tell you their journey with CML. Of course you will have your own journey to tell, and we are all different when it comes to side effects and etc. At the end of the day we never know what the night will bring. I re member I had chills and fever every night in the beginning. I kept a diary and this helped me a lot. Good luck and ask questions; someone here will have the answer. Jeanie<3 In a message dated 12/13/2013 10:24:09 P.M. Eastern Standard Time, [email protected] writes:
Hi Mar: Welcome to our group where you will always find support, friendship, information sharing and warmth. As others have spoken to some issues you've raised, I thought I would address your question about work. I was diagnosed in March 2009 and started on Gleevec which I continue to use. While it was initially challenging to integrate the side effects of the drug and illness into my daily life, I knew that the only path for me was to be positive and grateful that CML can be managed for many, many patients. I work full time for a highly placed elected official in Baltimore as the Senior Aide so it can be a stressful job, especially since elections come every 4 years and my job is by appointment and therefore never guaranteed. It requires a great deal of focus and often long hours, days in the office and nights at community meetings, sometimes getting home between 10 and 11 pm. Add in campaign work on weekends and it is a lot of work. Fortunately, I've been blessed to work for two great men who have given me the flexibility to work from home some days, come in late, take time off whenever needed, etc. My point is that I've continued to work and I'm so thankful to do so and have a job I love that comes with fantastic health care benefits. I'm tired plenty of the time but I push through because I need to do so and I try to get a good night's sleep as often as possible. Staying well hydrated and knowing what foods to stay away from because they will cause stomach issues and diarrhea is vital. Keep your hands clean and make sure your co-workers know that they need to communicate with you immediately if they don't feel well. I've managed for 4 and 3/4 years to stay pretty healthy and I'm convinced that working at something I love is very helpful. Use good common sense, listen to your body and follow your doctor's advice. It's worked for me and I pray that this will be successful for you as well. To all my fellow warriors, I haven't been on the site much in terms of posting but I read every email. All of you are constantly in my thoughts and prayers and may everyone be blessed with a happy, healthy and joyous New Year. Thanks for the affection always directed my way. Marcie Sent from my iPad On Dec 13, 2013, at 9:50 PM, [email protected]_ (mailto:[email protected]) wrote: Thank you Marty. I just drew five deep slow breaths because of your email to Mar. The positive side effect of reading your emails :) RELAX....thank you. Beth -----Original Message----- From: Marty Gartenberg <[email protected]_ (mailto:[email protected]) > To: cmlhope <[email protected]_ (mailto:[email protected]) > Sent: Fri, Dec 13, 2013 7:23 am Subject: Re: [CMLHope] Re: Getting Results 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]_ (mailto:Myvety2 [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]_ (mailto:[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_ (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]_ (mailto:[email protected]) To unsubscribe from this group, send email to [email protected]_ (mailto:[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]_ (mailto:[email protected]) . 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