Hey Trey, I sent you a reply on the other discussin board and since I posted here, too, I will just do a copy and paste. WARNING IT IS WORDY!!
I was hoping you would follow up with me regarding the decimal & rational. You really pay attention! I have really been reviewing these reports. With the PCR LAB last week my emotions have been all over the place try to stay positive.
I am with you Trey, "very unusual coincidence." This whole year has been confusing for me on my PCR. The way the numbers are going up down seem weird to me, as the previous years have been undetectable. Before that I was felt so blessed to have such a wonder drug as Gleevec, except for that first year, and it was a ruff one.
By the way my ONC has been trying to get me to switch from Gleevec to Tasigna for about a year now. I have taken Gleevec since 2005, (6 years) My CBC are almost alway near perfect and my FISH is anywhere from 92% to 100 % normal nuclei.
The fish report for 10/18/2011 was 96 % normal 1 green BCR, 1 orange ABL and 2 yellow fusion signals (x1000).
I was just so excited today when I picked up my lab results. This last week I was have anxiety attacks just thinking of changing drugs 7 that my leukemia was on the rise or had mutations, I hear it not so good if you into blast or acute, that was my fear, going into a blast. In fact my doctor didn't even call me to tell me the labs were in yesterday like she did last Tuesday. Today I called the office and had them make a copy and went straight away to pick the lab report up. After reading the lab all I cold say was Thank You Jesus. Doc really had me scared last week.
I beginning to think something is not right with the laboratories, but what do I know I am not an expert.
The last two PCR are dated (1) 10/24/11, Collected 10/19/1011, The PCR before that one was, (2) date of report 10/18/2011, colleted 10/12/11.
The lab is BioReference Lab GenPath of New Jersey, (800-29905227.) I live in Greenwood, Indiana, just a couple miles south of Indianapolis, In. where my Oncologist office is.
I have the PCR reports in front of me. plus I am looking at the chart, that has a scale dated from 8/29/2009 to last report 10/24/11.
The reason the 2 PCR is because my ONC was alarmed that my b2a2 and b3a2 were both 23.45 and she wanted to switch me from Gleevec to Tasigna.
But then again Onc tried to get me to switch to Tasigna last year, when one number was up just a tad, but the report said they had made a mistake, had to draw from another well (whatever well means) and it was negative. Until I pressured the receptionist to check for more paper work, I found out there about 3 or 4 pages on the PCR report that Dr. didn't bother to tell me the lab made a mistake and drew from another well for PCR Then, I believe at that time the b3a2 ws only 0.19, which I though was strange to warrant another PCR and alarm me that Gleevec wasn't working and there were better drugs, and it would be in my benefit to change now!! Even though the lab had already corrected the mistake, she still did a another lab and sent away. I really didn't get the whole thing because first of all it was only up a tad and the lab had already corrected the mistake.
I am looking at PCR report dated 10/24/11. It shows B2A2 NOT DETECTED. B3A2 12.12 %. Now I a looking at the scale chart that saysPRIOR ACCESSIONS; Lab Rec 10/14/11 B2A2 & B3A2 both at 19.53 %.
Next one says Rec Date 11/23/10 B2A2 0.00 % & B3A2 0.10. Next line up says. Date rec. 11/23/10 B2A2 0.00 % & B3A2 0.19 %. Next line up says, date rec. 6/19/10 B2A2 & B3A3 both 0.00, Next line date rec 9/19/10 is the same. Next line is 8/29/09 is B2A2 0.00 % B3A2 1.20 %. ALL THE E1A2 are 0.00 %.
i noticed that from the date lab collected usually on a Wed to the date of report is usually 5 days, so wonder how quickly they get the blood lab and quickly it is processed in that there is a week end.
It does seem to odd to me that lab collected on 10/12/11 Wed, & lab collected on 10/19/11 Wed, b2a3 would go to 0.00 % from a 23.45 %.
It also seems odd to me that both b2a2 and b3a3 would be 23.45 % on 10/14/11 and both b2a2 & B3A3 would be 19.53 % on 2/24/11.
I really need to scan this document over to my laptop and attach it, but not sure I could figure it out in a short time. Have not scanned anything over and attached to a document for a long time. But I believe (if there are no type error) these number are correct.
I was glad to hear you question the numbers, as I don't know anyone to compare these notes with, just had a gut feeling the number seemed odd. However I am reminded that a drop of blood out of millions of cell could pull up anything just seems odd that some of the number are identical on two different genes. Is that what you call b3a3 and b3a3 genes?
I know most people just go along with whatever a doctor says, but I have been around the health care for so long and I have seen so many mistakes. We took care of my mother for 3 years before she passed and I spent many hours in the hospital. My husband was sick for 2 month last year and I thought I was going to have to put him in the nursing home. It turned out that he was allergic to the generic of mobic an arthritis medicine and the doctor kept increasing the dosage and added pain, pills, gabatone and predizone and he was over medicated. Think I misspelled some of those drugs. He swelled up, couldn't hold a utensil in his hand or button his shirt and falling down. His lab were so awful and he had a bleed. I was taking him to so many doctors, thought he might have cancer finally weaned him off the medicine and now he is working part time. Then my 38 year old son just got out of the hospital a couple of weeks ago, He was in 3 hospital for 88 consecutive days, and on full life support for about 30 days. I carefully documented his journal on caring bridge and kept daily notes. He is now home taking care of himself but still has pneumonia in the lower left lung and braces on his feet. Well enough said but I have been around this redo before. I am just getting to old at 63 and with CML stressing is not good thing. In fact back in Feb had to change my blood pressure med as developed irregular heartbeat, to much stress, also had 2 deaths in the family. Seems like I have spent a lot of my retirement years being a caretaker.
Thanks for your comments I really appreciate them, as have been stressing waiting to get this report, but I really feel relieved that the pcr is much better then the one two weeks ago 7 perhap the labs is have some difficulties. I told my Onc my CBC and Fish report are so good, and she said yes but this PCR is so much more sensitive, but added it does have room for error as it is magnified over and over. Also she said my CBC will not be good within the next 6 months. So she said lets just do another PCR go off gleevec for 2 weeks and then go on Tasigna, and it will be a piece of cake and you won't have to worry. But some reason I just had a bad gut feeling it was not a good ideal at this time to be thinking of switching from Gleevec. I read somewhere that over 88 % of patients that have been on Gleevec since 1997 are still alive and doing well that is a pretty good track record. I know these trials experiments are important but so much uncharted territory.
Was wondering where you get all your knowledge on the subject of PCR and the log, etc?