Guest guest Posted May 15, 2006 Report Share Posted May 15, 2006 Hello Jane I am sorry about your diagnosis and hope you find a doctor that be able to help you feel comfortable with your choices about BMT or not and help you handle this disease. My 22 year old son was diagnosed with CML in March this year and this board and the http://asia./group/AsianCMLSupportGroup/ have been absolutely wonderful! Anjana and Roy and so many others are a mine of information and so helpful and kind. Regarding " asking the universe..... " I have learned to be reeeeeaaaallly careful how I word those questions and requests! LOL We are from CT South Africa and live in Tennesse now. Take care Annie (Mom of ) www.livingwithcml.blogspot.com www.roadrunnersusa.blogspot.com > > Hi there > > Been lurking but not posting for a while. Mainly because I know I > have questions but I haven't been sure how to form them. Now I am > feeling really low so I am just gonna take a shot at it. So many of > you are so wise, I can only benefit huh? > > During the whole oflast year I was fighting a horrible battle at > work which looked like it was going to end up in the labour court. > > I got really stressed out in November and asked 'the universe' to > find a way for me toget out of the situation with a little money and > without having to go to court. Later that same week, I took myself > off to the doctor to deal with the " stress " symptoms and got the CML > diagnosis! Bummer. > > Anyway, it now became a possibility to apply for disability benefits > and to leave the organisation that way so I stopped fighting my > employer and concentrated on fighting the CML. > > The insurers are now suggesting that, because of Gleevec, the CML is > not a disability but something more like Diabetes and therefore I am > not disabled. Which, I guess, is probably true except that I am so > exhausted on the Gleevec that I can hardly do anything! > > I am 47 years old, I have 3 kids and a husband and am under pressure > to go full steam ahead for a BMT. My gut is shrieking " NO " but the > doctors are really keen to try it. I do not have a sibling match. > > I really need to talk with a CML specialist because the more I see > of my oncologist, the more I understand that her knowledge is > shallow. Also, she just doesn't have the skill to help me make my > case. > > I live in South Africa and, to my knowledge, we don't have any CML > specialists here (unless one of you knows better) so I was wondering > if any of the amazing docs that you all talk about would be willing > to enter into an email conversation with me. > > There is a chance that I may get the opportunity to travel to > England in September - are there any really good specialists there? > > Another strange thing - a close friend and work colleague who has > also gone through the kind of work stress that I did and is also > fighting a legal battle has also been diagnosed with CML - do you > think that is at all significant? > > I will be interested to hear your responses > > Regards > > Jane > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2006 Report Share Posted May 15, 2006 At 10:32 AM 5/15/06 +0000, you wrote: >The insurers are now suggesting that, because of Gleevec, the CML is >not a disability but something more like Diabetes and therefore I am >not disabled. Which, I guess, is probably true except that I am so >exhausted on the Gleevec that I can hardly do anything! > >I am 47 years old, I have 3 kids and a husband and am under pressure >to go full steam ahead for a BMT. My gut is shrieking " NO " but the >doctors are really keen to try it. I do not have a sibling match. Hi Jane, You should always bring your questions and concerns to the list....others will share their knowledge and experience with you. Some folks on Gleevec are able to work and others are not, and some of those are on disability. Yes, the CML is under control....the disabilty comes from the side effects of the treatment. You need to start a diary documenting these on a daily basis for a record.... with some specifics. Like did you need a nap....what could you not get done because of fatigue, etc. Even rate the side effects on a 5 point scale. The thing for your disability analysts to realize.....when they think remission, they think you have had treatment and are stable in remission. Most other cancers have a course of treatment that stops. This is different.....we keep taking the same drug that causes the side effects every day....it does not stop! Tell them it is like having 'chemo therapy' every day! NO NO NO......you are not an ideal candidate for a BMT............because of age, the fact that it would be an unrelated donor..........you chances of dying from the procedure itself are at least 20% (more I am sure) and all the possible complications like GVHD. And if you are having a good response from Gleevec......why would you decide to play Russian Roulette!! If you have doctors that are so keen to try a BMT......suggest that they do one on a relative of theirs!! I do not believe that ANY cml specialist in the US would be recommending a BMT to you......if you wanted one, that would be your choice. Yes, there are very good cml specialists in England. You might go onto the European CML site and ask there about how you might get an appt. That site is www.cmlsupport.org If you simply wanted a statement with his opinion, in response to your question (here is my brief history, my response to Gleevec.....should I consider a BMT)..........Dr. Druker at OHSU is very good about replying to e-mails................ drukerb@... Keep in touch with the list. They are good for a reality check....no one knows better what it is to be dealing with CML than those who also have it. C. Eugene, OR.....patient at OHSU Quote Link to comment Share on other sites More sharing options...
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