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Mom diagnosed with CLL and I can't be there for her

Posts: 2
Joined: Sep 2009

My mom is 56 and was diagnosed with CLL in June. She was told by the doctor that she was in Stage 0 and that no treatment was necessary. She was told to come back every 3 months for tests and they would monitor her progression. About a month ago she started to become very tired, short of breath and was losing weight rapidly. She went to the family doctor and they ran all kinds of tests but never related this back to the CLL. She finally called her Cancer Doctor two weeks ago and ask for an earlier appointment than her 3 month check up. She went to the doctor last Thursday, September 24, 2009 and found that her WBC had increased to over 80,000. The doctor decided to order more tests including a PET Scan and Bone Marrow Biopsy (we are still waiting to get the final results). Now the doctors have fast tracked treatment she began Chemotherapy (Drug - Treanda - Bendamustin) Sunday, September 27, 2009. Based on the ACS website there are forms of CLL one that is slow to progress and may lay dormant for years without any symptoms and the other more aggressive and requiring treatment or it is deadly. I am having a difficult time dealing with the fact that my mom and dad have decided not to come to Houston MD Anderson for Treatment and that according to ACS site the CLL cells look alike but there are labs that can tell them apart. Why didn't the doctor order the additional labs? Is a small town hospital a good place to receive treatment? What questions should I be asking of my Mom's doctor? I'm so frustrated and worried because I'm 800 miles away and cannot be there for her.

sue Siwek
Posts: 280
Joined: Jun 2009

probably should wait to hear the results. if they are not hopeful then maybe your parents will be more inclined to go elsewhere for treatment. there is something to be said for convenience and if it is something that is just going to be a chronic disorder then probably a closer treatment center is fine. she is your mom and of course you a frustrated and scared. maybe there is a better place in a larger city near them that is an option to consider as well. good luck.

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