Hi Trey, I had an appointment with the hematologist on May 29, and I requested the BMB. He said you will have to have it done at some point. I am booked to have it done on June 11/14 at 8 am. He will not use the same meds that they use for colonoscopy, I will have to suffer Will I be able to drive after the procedure is done? Regarding my BCR/ABL main report that I thought was missing, he said there is no other report, the Addendum means that they added a line to it. I asked about the numerical numbers, the percentage, he said 100%. Last week he ordered another BCR/ABL Quantitative PCR peripheral blood test, we will see what the percentage is on that one. Thank you Trey, I value your opinion.
Bone Marrow Biopsy
Posted 03 June 2014 - 09:03 PM
Posted 04 June 2014 - 12:33 PM
Regarding the BMB, if they only use the local anesthetic at the point of needle insertion then you will be able to drive home afterward, but ask before you go. That is how I have had my BMBs. It will hurt when you sit on it, so maybe take a small pillow for the car.
So you say your 6 month PCR was 100% ? The report you posted did not say that, so how does the Hem/Onc know? Your report only said the PCR result was "positive". Maybe it was a Qualitiative PCR instead of a Quantitative PCR (first one is only positive/negative without a % number, and second one has a percentage result).
I would ask the Onc where the 100% number comes from. Ask to see it on a report. Otherwise, I wonder if the Onc knows what he is doing. If it was a PCR and it really was 100% at 6 months, then the drug is not working and you need to change drugs.
When you have the BMB done you should also have a FISH and PCR done using the marrow fluid. Ask the Onc if he is doing that and make sure they do them.
If it were me, I would get a new Onc. Yours seems to be either unclear on how to treat CML or very poor at communicating. Either is bad.
Posted 04 June 2014 - 01:23 PM
Trey is correct. My initial PCR before starting Tx was 70%, down to 2.1% after 3 months of Gleevec.
Posted 04 June 2014 - 10:49 PM
Hi Trey, thank you for the response, it is appreciated. You will find my report under MOLECULAR ONCOLOGY RESULTS (BCR-ABL, it must have been a qualitiative PCR instead of a Quantitative PCR. On May 29th he ordered a BCR-ABL quantitative PCR, this was done before I saw him. He probably has the results already, I requested a copy, he said that I will get a copy at my next appointment with him. I said in two months? He said I have to interprete it for you. He does not know that I have you and all our other friends on this board to help me. Sometimes I feel that you came down from heaven to guide us! I was diagnosed March 6, 2014, only three months ago. I asked him if he has other patients with Leukemia. He said that his specialty is leukemia and lymphoma only and that he has done lots of BMB. I will not be asking him any more questions regarding the first BCR-ABL report. I could see that he is not too happy with me. He scared me to death when I requested the BMB. He said that I could have pain for the rest of my life at the site of the BMB, or that I could have pain for two weeks or more. He said if I wanted that I could have a second opinion. He said that it will be done under local anesthesia. He gave me a pamphlet with some information about the BMB and it says that I will have a blood test after the BMB. I will keep him as my hematologist, to have a second opinion I would have to go to a larger city, we have 4 hematologists in my city, but they all work together on the same floor. I am pretty sure that he can treat my leukemia. I will let you all know how the BMB went on the 11th. Thank you Trey and Ray T. ACG
Posted 05 June 2014 - 05:10 PM
Your Onc is more of a pain in the a$$ than a BMB would be. Just sayin'
You have not had a quantitative PCR, no FISH, and no BMB. Your Onc is using very poor procedure. Also, his saying your qualitative PCR (not quantitative PCR) was "100% positive" is seriously stupid. The qualitative PCR by definition does not assess the degree of positivity, only that it has some amount of BCR-ABL (leukemic genes).
Your Onc uses poor procedures and tries to intimidate you into not asking questions. If you stick with him, it carries some level of risk to you.
Posted 05 June 2014 - 05:44 PM
Adela. . .you need to get a new oncologist. I'm on my 4th oncologist and I like him. It takes some effort to find a new doc, but you need to find someone you trust and who has a communication style that works for you. You are paying for your doctor's services. You should get your money's worth of information from your doctor each time you see him (or her). Your doc sounds like an arrogant ass who doesn't know how to treat patients or leukemia.
Posted 05 June 2014 - 10:47 PM
Hi Trey, I am not impressed with the hematologist, but it is not possible to make a change at this time, I have to wait. I received my appointments list in the mail today. I am booked to have blood work every Wednesday for the next eight weeks, and an appointment with him (hematology follow up) July 21st. I had a blood test done today he does not know that I have a copy of all my blood tests, I go to the hospital medical records department and I ask for a copy and they always give it to me. My liver is perfect, and everything looks good to me. The CBC and Diff. is not perfect, but I am not worried about that. Last week he change my dosage of Gleevec, I now take 400 mg. Monday, Wednesday and Friday, and 300 mg. Tuesday, Thursday, Saturday and Sunday, I guess that's why he is ordering the blood work every week, I am happy with that. The BMB test is sent to another city, that's why I have no access to a copy of the report, that is mailed directly to him, I will have to get a copy from him on July 21st. Thank you ACG
Posted 05 June 2014 - 11:10 PM
Hi Marnie, thank you for the advice, it is appreciated. If it was possible I would get a new oncologist, there are 4, but they all work together at the cancer clinic, to make a change I would have to go to the best Hospital we have, which is The Princess Margaret Hospital in Toronto, it's about 60 miles from were I live, I am going to wait and see. I am very grateful to all the people on this board, for the advice and encouragement. Thank you ALL.
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