Hi, I have been diagnosed with CML last week after a routine plasma donation . I have otherwise been fit and healthy with no symptoms. I had a BMB on Friday and due for the results this Friday. I am wondering who the best docs are to monitor treatment?? Is it best to have a hematologist/oncologist and does your GP have much to do with your care. I am a 38 yr old mother of 4 sons and have been floored by this diagnosis. Unfortunately still at the stage of skipping positive info and looking at the worst case scenario.. Thankful to have found this site.
Posted 05 June 2013 - 07:59 AM
GP won't have much to do with care for cml you'll still go to GP for regular stuff by hem/onc will be your primary Dr.
CML can be quite flooring but it is a highly treatable disease with very good survival rates. Take things slow be careful what you read lots of stuff out there that will scare you, the information on this site is very good
Posted 05 June 2013 - 09:37 AM
You might want to read this overview first:
Your GP will not be able to help much. You must be treated by a hematologist/oncologist.
Let us know what the BMB says. As long as the diagnosis is Chronic Phase CML you should do just fine over the long term using drug therapy and you will see your grandchildren grow up.
Posted 05 June 2013 - 03:29 PM
Hi: Lucky and Trey gave you the best information right now. i am glad you got in contact with other people who have and are going through what you are. We all remember what it was like when we were given that diagnosis, but it does get better. You have had your basic testing done so your doctor can determine where you stand, and how to treat you.
Yes, you need a good Hematologist/Oncologist who treats many cases of CML per year. Always check to see how much your doctor knows about the latest treatments for CML.
You will be put on a TKI drug, which will be explained by your doctor, and you should have gotten some basic information if you read the website that Trey posted for you.
Once you get started, just ask us anything. We have all been through it, and we have a lot of old timers on here as well as newly diagnosed people. I think you will find a lot of information and good friends to help you along through all of this.
I have had CML for almost 15 years, so maybe that will ease your mind a bit. Please keep in touch. We want to be here for you.
Posted 05 June 2013 - 04:37 PM
You can also call the Leukemia and Lymphoma Society and get a lot of info via phone. They have a free package of 5 or 6 books and pamphlets all about different aspects of cml which they will mail out to you. It is good accurate info. Hope this helps.
dx cml 7/2012; 100 mg sprycel; splenectomy 9/2012; reached prcu 10/2013; dx smoldering myeloma 1/2015; 80 mg sprycel 12/2015; 50 mg sprycel 7/13/16; discontinued sprycel 11/15/16
Posted 07 June 2013 - 01:34 AM
After my first post I saw the responses the next day and cried (again). While having amazing friends and family around me I still felt so alone. I was glad I had read some information from Trey's Blog and went into my appointment today armed with questions. After a lot of anxiety awaiting the results of my BMB I find myself feeling relieved today as it was confirmed it is CML in the chronic stage (it's weird how you can go from devastation to relief so quickly!). I am due to start Gleevec in a week to 2 weeks.
Posted 07 June 2013 - 08:53 AM
It's an amazing drug and while there are bound to be challenges along the way, the likelihood is that you are going to do fine. Keep up the good work, communicate with us here, it definitely helps to talk with people who know what you are dealing with.
Posted 07 June 2013 - 04:24 PM
I also remembering i almost cried of releaf when the onc told me it was CML. I had been waiting a week for the results, but i was 99% sure it was Leukemia as my gp had told me so. That is over a year ago, and i wont lie and say it has been an easy year, but compared to some of those other cancers, we have a very good chance at a "normal" life, and im thankfull every day that i will probably get to see my kids grow up
Posted 12 June 2013 - 12:00 AM
Very new here. In remission for 2 years now with cll. Had chemo for 6months , was in hosp. 3 times with adverse reactions. I did overcome all this and will be considering Bone Marrow transplant if relapse occurs. I know that this will be very risky, since my only brother is not a match!. Can anyone give me some encouragement, IM 60 years old young. Marie, Would love to hear from anyone with some positive info. Call me Hansey, thats my nic name.
Posted 12 June 2013 - 06:35 AM
There is a very good discussion board on this site you may want to check out: http://community.lls...transplantation. There is also a Living with CLL discussion board. Bone marrow transplant is the last resort nowadays for those of us with CML and most of us have never had to deal with chemo since CML really doesn't respond. That's not to say it's never been done but we have several options before we would get to that point.
I am also 61 years young so I understand your anxiety about this. Please try the CLL discussion board because you will be talking to people who have been where you are now and understand your concerns better than those of us with CML. Here's the link http://community.lls.../livingwith/cll
You may need to copy and paste into your browser - this site doesn't appear to work very well with Chrome (my browser).
"You can't change the direction of the wind but you can adjust your sails."
DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>
Posted 12 June 2013 - 01:59 PM
So glad you are doing well. My doc here in Scotland wants me to meet the transplant team 'in case' things don't go well for me. Although I have CML I am far from the situation most of my follow CMLers are in with remission.
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