Guest guest Posted August 3, 2011 Report Share Posted August 3, 2011 Hi Lori- You can have a complete response-(CR) with lymph nodes, blood and spleen. The BMB will show if you have minimal residual disease-(MRD) or not. This is a marker for how long your remission will most likely last. Remember we are all different though. If you have NO disease that can be detected in your bone marrow then you should enjoy a long remission from CLL. The key word here is " remission " . CLL patients have always finally relapsed from past treatments, but some are in long lasting remissions up to over 5 years. One of the marker's for CLL is low immunoglobulin serum levels. Treatment usually doesn't help these serums. Your platelets are very good and I would not even think twice about them. I feel that concern for platelets starts around the 60 level. There are a lot of CLL'ers who live with platelets under 100 and do just fine. Congrats on the CR. Now, let's wait for the BMB. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 2011 Report Share Posted August 3, 2011 A CR requires less than 30% lymphocytes in the bone marrow trephine and normal counts in the blood and no palpable lymph nodes and spleen. MRD negativity on the blood is sufficient - you don't need a BMB for that. The 1996 guidelines are probably out of date on this since we can now differentiate those 30% lymphocytes in the bone marrow by immunohistochemistry. Patients who go by the 2008 Guidelines can have what is known as a CRi which means that they have no residual disease but their bone marrow has not fully recovered. A BMB is necessary for a further 2008 Guideline diagnosis which is PRn. This is when there seems to be less than 30% involvement of the marrow, but the lymphocytes are found in nodules. This type of finding has a similar type of outcome as PR not CR. Patients with CR and MRD negativity have longer remissions. I know of some who are in remission 10 years out after FCR. Almost without exception these have mutated IGHV genes. Sorry it is so complicated. Terry Hamblin MD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 2011 Report Share Posted August 3, 2011 Lori: There are posts from those who know more about all this than me. has studied the disease extensively and Doctor Hamblin is the greatest. I don't know how many times he has helped me in the last several years. I remember best once when I was especially worried about a node of pretty good size that popped up under my chin. I just knew it was the CLL getting out of control. He said it was an infected tooth as nodes do not come that quick. The dentist confirmed the infected tooth. But what I really wanted to say is in my experience a remission is unimportant. I finished treatment in mid July of 05. On August 15, 05, my lymph percentage was 32. On December 2, 05, my lymph percentage was 47. I was worried and thought I would be needing treatment again soon. The percentage continued to climb over the years, but now six years later, I still have not needed treatment and there is none in my immediate future and I have no B symptoms. My point is, don't worry about the numbers or whether you have a complete remission. We are all different as to how we react to things. But someone told me the most important things a patient can do is exercise, eat a healthy diet, and have a positive attitude. It would be great if you are CLL free, but if not, don't let it worry you. Dave Quote Link to comment Share on other sites More sharing options...
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