Could anyone tell me how often a newly diagnosed patient should have a bone marrow test, when I was first diagnosed in 2000 I was having them every 3 to 6 months at first until I was clear then if went to 12 months and now I just have PCR tests. I have a friend who has only been dianosed since January 09 she had one bone marrow test then and has now been told by a consultant at Calderdale that she doesn't need one for 12 months. Also she if worried as she is on 400mg gleevic and her platlets have dropped down to 80 and has been told by her doctor that the gleevic dose would be dropped or stopped if they are still the same or dropped down again when she next goes to the hospital in 5 weeks time does anyone know anything about this. She has tried to get on this site but is having problems thanks Sue D
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bone marrow tests in newly diagnosed patients and falling platelet counts
Platelet counts of sub 50 is the point that problems occur,I have a 62 platelet count at the moment and have been for some time,but my bone marrow has improved so I am waiting for my platelet count to climb once the cells mature,
you have to look at blood results as a whole to get a decent understanding whats going on,I would say bone marrow tests twice a year,but fish tests on blood can give more detail on a larger number of cells.
Get your friend to a specialist CML unit,CML specialist consultants are in the ideal position to judge the best treatment path.
Dear Sue,
Michael is correct. She needs to see a CML expert or at least see a consultant who follows the established guidelines set out by the top CML doctors. Her consultant is making them up as he/she goes along.
Here are a couple of sites that you can go to that explain in detail the frequency of when to do testing (BMBs, PCTs, WBCs).
http://cme.medscape.com/viewarticle/448490
http://www.cdhb.govt.nz/chlabs/miscdocuments/CML_Monitoring_Guidelines_J...
http://www.leukemia-lymphoma.org/graphics/National/051909CMLTranscriptFe...
Take the time to look at them. You may not understand or follow many of the items, but don't let that discourage you.
The experts (Dr. Goldman et al) say to do bone marrow biopsies every 3 or 6 months until the patient reaches CCR. Waiting a full year without achieving CCR is the wrong thing to do.
The experts will never drop the Gleevec dose unless they have evidence that the serum level is too high. Using a sub optimal dose of Gleevec can lead to resistance of the drug Gleevec.
The experts will allow the platelets to drop down to 20 before they stop Gleevec treatment. They will then restart the Gleevec at the full 400 mg dose.
I would love to know the consultant's name so that I can search the literature to see the papers and studies that he/she has published that contradict what the experts say.
Zavie
Zavie Miller (age 71)
67 Shoreham Avenue
Ottawa, Canada, K2G 3X3
dxd AUG/99
INF OCT/99 to FEB/00, CHF
No meds FEB/00 to JAN/01
Gleevec since MAR/27/01 (400 mg)
CCR SEP/01. #102 in Zero Club
2.8 log reduction Sep/05
3.0 log reduction Jan/06
2.9 log reduction Feb/07
3.6 log reduction Apr/08
3.6 log reduction Sep/08
3.7 log reduction Jan/09
3.8 log reduction May/09
e-mail: zmiller@sympatico.ca
Tel: 613-726-1117
Fax: 613-482-4801
Cell: 613-282-0204
Yahoo ID: zaviem
YM: zaviemiller
Skype: Zavie Miller