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CLL and Mayo Clinic

Posted by @alanswife in Cancer, Sep 20, 2011

My husband was diagnosed with Chronic Lymphocytic Leukemia this past April 2011 and is in in watch and wait mode. His FISH results are unfavorable yet his hematologist said lets wait. I have been researching the latest on CLL for the past 3 months and everything leads to the Mayo Clinic as the best. I guess I am now looking for someone to tell me that this really is the place to go. Everyone we talk to (friends, family, co-workers, etc) has their own belief of where my husband would receive the best care and the latest treatment. I am just not comfortable with his current hematologist and would like another opinion. If we were to come to the Mayo Clinic, has anyone found it easy of difficult to have the Mayo Clinic doctor prescribe treatment back home with the current doctor. Any information would be appreciated.


Tags: Cancer


Posted by @beckyr, Sep 24, 2011

My husband has had an aggressive version of CLL for 5 years. We treated through our local cancer center when he was originally diagnosed using FCR chemo for 6 months and our doctor consulted with Mayo doctors during the treatment process. He was in remission for 4 years and it has returned again and now has a p17 deletion mutation. He is also an insulin dependent diabetic, which complicates his treatment. We've been working with our local cancer center again this time but are now going to Mayo for guidance because of the complications my husband is experiencing. Once again our doctor has been consulting regularly with an expert at Mayo and said she can support certain treatments so we don't always have to travel to Mayo. She said she has done it before so that's our plan as much as possible. She also let us know that if it's too complicated she'll let us know and we'll go through Mayo. Example, one of our options is autologous bone marrow transplant. She may be able to do part of the treatments through her center and other parts will have to be done at Mayo. We're working with Rochester, MN.

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Posted by @eastcoastgal, Jan 5, 2012

My husband was diagnosed with CLL in October 2011. We are also in the watch and wait mode. His white blood cell count on his first visit was 19,000. His next visit will be February 7. So far, we have been pleased with his hemotologist. He has a very good name and reputation in our area for taking good care of his patients. We were advised at any time if we would like a second opinion to feel free to get one. My husbands elevated white blood cell count was discovered during a heart cath during which he had to have a stent due to a blockage. I have read and researched countless hours to learn all I can about CLL and its treatments. Not sure how old your husband is or if he has any military background but it appears my husbands CLL is a result of exposure to Agent Orange during the Vietnam era. We hear lots of positive comments and ofcourse some negative ones but for now we take one day at a time and try to live life to its fullest. With or without CLL we are never promised a tomorrow. Wishing you both the best.


Posted by @alanswife, Jan 5, 2012

My husband was not in the service, he is 55 years old. After he was diagnosed at a local hospital, we went to a second opinion hematologist. After a few visits there, we decided to take a look at Dana Farber Cancer Institute in Boston. We were so pleased with the hematologist, his staff and everyone in general that we decided that's where we will get his care. I am still learning as much as I can and we do have an interest in the new clinical trial that is being talked about (PCI 32765). His FISH revealed that he has the 17p deletion (12.5%). I don't know exactly what the percentage really means - - does this change with time. And he also has 11q deletion at 69%. His white blood cells were at 46,000 this past Fall.

Since his diagnosis about 9 months ago, the only change we have noticed is that small cuts or scratches don't heal as quickly. Unlike if I cut my finger, I throw a band-aid on it and it's fine. He needs several days of anitbiotic cream because it gets infected very easily. His next appointment will be in mid-January.

We also take one day at a time and I try to act as normal as I can. But the honest truth.... I am a mess underneath it all. We were high school sweethearts and then moved on into adulthood. But we always wanted to be with each other and 26 years later, we are finally together and newly married, and the happiest we've been in our lives. Let's hope that "Love conquers all"... !
Happy New Year to you!


Posted by @anon10029851, Jan 26, 2013

Dr Timothy Call provided a CLL expert opinion for me. Results were reviewed with me and forwarded to local Hematologist/Oncologist. In early stages of W&W…this confirms accurate current approach and provides prognosis based on factors. I plan to get more Mayo consults if anything changes, especially when and how to treat future progression…

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