I have an appointment at MDANDERSON on March 3, which is a Thursday! I will be having BMB and PCR and usual blood work. I have read from this sight not to test on a Thursday. Since MDanderson has their own lab, is it ok? Or should I change appointment? Thanks
Appointment on a Thursday
Started by
Kellyb333
, Jan 10 2016 02:25 PM
11 replies to this topic
#2
Trey
-
- PS Beta Group
-
- 1,705 posts
Advanced Member
- LocationSan Antonio, Texas
Posted 10 January 2016 - 10:21 PM
I assume they are one of the few places which tests Mon-Fri. Should be OK.
#4
MarCap73
-
- Members
-
- 48 posts
Advanced Member
Posted 11 January 2016 - 03:32 PM
I assume they are one of the few places which tests Mon-Fri. Should be OK.
Trey (or someone else) can you provide a bit more info or clarity about NOT getting tested on Thursdays? I looked for any prior posts Kelly referenced about "not to test on a Thursday".
Thanks!
Dx: 11/2015
Sprycel: 100mg
May-17: 0.0095% IS
Aug-17: 0.0048% IS
Nov-17: 0.0066% IS
#5
Buzzm1
-
- Members
-
- 972 posts
Advanced Member
- LocationSilicon Valley
Posted 11 January 2016 - 05:39 PM
Trey (or someone else) can you provide a bit more info or clarity about NOT getting tested on Thursdays? I looked for any prior posts Kelly referenced about "not to test on a Thursday".
Thanks!
MarCap73, in brief, most blood draws, especially where special tests are required, are sent to outside labs for processing; to help prevent the somewhat remote possibility that your blood wouldn't be processed in a timely manner (i.e., sitting over a weekend), it is highly recommended that you have your blood drawn Monday through Wednesday. Most blood draw stations are well aware of the requirement for expedient processing in the case of PCR BCR-ABL blood samples and will have explicit written instructions regarding this. For your own ease of mind ask about it the next time you have blood drawn. Kaiser, where I go, ices down the PCR draw immediately and it goes to the outside lab within a few hours.
For the benefit of yourself and others please add your CML history into your Signature
02/2010 Gleevec 400mg
2011 Two weakly positives, PCRU, weakly positive
2012 PCRU, PCRU, PCRU, PCRU
2013 PCRU, PCRU, PCRU, weakly positive
2014 PCRU, PCRU, PCRU, PCRU (12/07 began dose reduction w/each continuing PCRU)
2015 300, 250, 200, 150
2016 100, 50/100, 100, 10/17 TFR
2017 01/17 TFR, 04/18 TFR, 07/18 TFR 0.0012, 08/29 TFR 0.001, 10/17 TFR 0.000
2018 01/16 TFR 0.0004 ... next quarterly PCR 04/17
At the earliest opportunity, and whenever possible, lower your TKI dosage; TKIs are toxic drugs and the less we take longterm the better off we are going to be ... this is especially true for older adults.
In hindsight I should have started my dosage reduction two years earlier; it might have helped minimize some of the longterm cumulative toxic effects of TKIs that I am beset with.
longterm side-effects Peripheral Artery Disease - legs (it's a bitch); continuing shoulder problems, right elbow inflammation. GFR and creatinine vastly improved after stopping Gleevec.
Cumulative Gleevec dosage estimated at 830 grams
Taking Gleevec 400mg an hour after my largest meal of the day helped eliminate the nausea that Gleevec is notorious for.
Trey's CML Blog - Stopping - The Odds - Stop Studies - Discussion Forum Cessation Study
Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt
#6
Trey
-
- PS Beta Group
-
- 1,705 posts
Advanced Member
- LocationSan Antonio, Texas
Posted 11 January 2016 - 05:59 PM
MC73,
The reason is the sample might not arrive at the lab in time for processing Friday afternoon (which takes about an hour), which is why I have said to avoid Thursdays, and never on Friday. Early Thursday AM might be OK, but I would still avoid it. Also, some labs do not process the samples every day, so Friday might be a non-processing day at some labs. The key is to ensure the sample does not sit over a weekend. PCRs require the WBC DNA to be intact. So if the DNS unzips, the sample is useless. The PCR should be done within 48 hours of the draw, and that is only possible when chilled and in preservative (always inside the sample tube).
#7
Widgeonus
-
- Members
-
- 47 posts
Advanced Member
Posted 12 January 2016 - 07:58 AM
I have an appointment at MDANDERSON on March 3, which is a Thursday! I will be having BMB and PCR and usual blood work. I have read from this sight not to test on a Thursday. Since MDanderson has their own lab, is it ok? Or should I change appointment? Thanks
I go to MD Anderson, and all testing is done in house at the campus in the medical district. Just for note, their reporting structure is not International Standard, so if you've had testing done at other labs that report in IS, you're results will be different based in this. A rough conversion for getting from MD Anderson to IS is multiplying MD Anderson results by .35. Basically .28 at MD Anderson is equivalent to .1 IS.
Back to your original question, I would not hesitate having an appt on Thursday.
#8
Gail's
-
- Members
-
- 634 posts
Advanced Member
Posted 12 January 2016 - 09:56 PM
So would like to know if it's normal for response to slow down as you get lower and lower values. I was dx in Jan 2015 and immediately my pcr started dropping like a rock with imatinib. The good thing is that it's still going down just more slowly. 3 months ago I was 0.88 and today was 0.35. Doc not seeming real worried and I'm happy to be headed in the right direction, down. She wants to do a BMB next week to see where I am with the break point. Does that seem normal? Is she looking for a mutation? Or am I nervous over nothing?
Diagnosed 1/15/15
FISH 92%
BMB 9:22 translocation
1/19/15 began 400 mg gleevec
1/22/15 bcr 37.2 IS
2/6/15 bcr 12.5 IS
3/26/15 bcr 10.3 IS
6/29/15 bcr 7.5 IS
9/24/15 bcr 0.8 IS
1/4/16 bcr 0.3 IS
Started 100 mg dasatinib, mutation analysis negative
4/20/16 bcr 0.03 IS
8/8/16 bcr 0.007 IS
12/6/16 bcr 0.002 IS
Lowered dasatinib to 70 mg
4/10/17 bcr 0.001 IS
Lowered dasatinib to 50 mg
7/5/17 bcr 0.004 IS
8/10/17 bcr 0.001. Stopped TKI in prep for September surgery.
9/10/17 bcr 0.006
10/10/17 bcr 0.088
FISH 92%
BMB 9:22 translocation
1/19/15 began 400 mg gleevec
1/22/15 bcr 37.2 IS
2/6/15 bcr 12.5 IS
3/26/15 bcr 10.3 IS
6/29/15 bcr 7.5 IS
9/24/15 bcr 0.8 IS
1/4/16 bcr 0.3 IS
Started 100 mg dasatinib, mutation analysis negative
4/20/16 bcr 0.03 IS
8/8/16 bcr 0.007 IS
12/6/16 bcr 0.002 IS
Lowered dasatinib to 70 mg
4/10/17 bcr 0.001 IS
Lowered dasatinib to 50 mg
7/5/17 bcr 0.004 IS
8/10/17 bcr 0.001. Stopped TKI in prep for September surgery.
9/10/17 bcr 0.006
10/10/17 bcr 0.088
#9
MarCap73
-
- Members
-
- 48 posts
Advanced Member
Posted 13 January 2016 - 08:58 AM
Buzz / Trey,
Thanks to you both for the responses. Every appointment I have they do a blood draw and then I see my Onc who has the lab results. I realize that the PCR is a more extensive test, but do the big hospitals do this themselves? I go to one of the major hospitals in Boston.
Dx: 11/2015
Sprycel: 100mg
May-17: 0.0095% IS
Aug-17: 0.0048% IS
Nov-17: 0.0066% IS
#10
kat73
-
- Members
-
- 884 posts
Advanced Member
- LocationWashington, DC area
Posted 13 January 2016 - 12:44 PM
Gail's - I think you are right on target according to NCCN Guidelines. I think it's sort of a mathematically-induced illusion that it's slowing, as reducing something by half (say) continually gets to be a smaller increment each time. (Only, eventually and hopefully, it gets so close to zero as to be un-measureable!)
No one has ever ordered a BMB for me, including at dx, so I can't address why your onc wants to repeat that. I'm sure Trey or someone else will jump in here. I'm unfamiliar with the BMB recommended schedule in the Guidelines.
Dx July 2009 on routine physical. WBC 94. Started Gleevec 400 mg Sept 2009. MMR at 2yrs. Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved. Kidney issues developed because of Gleevec. Switched to Sprycel 70 mg in Aug 2011. Above side effects disappeared or improved. Have been MR3.5 - 4.5 ever since. Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017. After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS. Pleural effusion returned within a couple of months, same as before (moderate, left side only). Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved. At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.
#11
Melanie
-
- Members
-
- 219 posts
Advanced Member
- LocationArizona
Posted 16 January 2016 - 08:35 AM
Kellyb333 - I've had many BMB, PCR, etc, on Thursdays at MDA. No issues at all. Wishing you good results!
Dx - 05/2011; PCR: 15.04; Fish: 87% Slow responder due to pancytopenia. Current - Bosulif - Nov: 2012, Mar 2016 lowered to 300 mg. 07/16 back to 400 mg. Clinical trial drug, Promacta, Feb 2013, for low Platelets.
CyCR - Aug 2014, Positive for 1 chromosome Sep 2015. PCR: 12.77 in Oct, 2012 to 0.04 (MDA) in Mar, 2016. 4/2016 - 0.126 (Local lab (IS); 05/2016 - 0.195 (local); 6/2016 - 0.07 (MDA); 7/2016 - 0.03 (local) 9/13/2016 - 0.16 (MDA); 9/26/2016 - 0.31 (MDA); 11/2016 - 0.012 (local); 01/2017 - 0.24 (MDA); 04/2017 - 0.09 (MDA); Cytogenetics show der(1:7)(q10;p10)7 chromosome mutation. Repeat of Sep 2015. PCR - 6/2017- 0.035 (local); 10/2017- 0.02 (MDA)
CyCR - Aug 2014, Positive for 1 chromosome Sep 2015. PCR: 12.77 in Oct, 2012 to 0.04 (MDA) in Mar, 2016. 4/2016 - 0.126 (Local lab (IS); 05/2016 - 0.195 (local); 6/2016 - 0.07 (MDA); 7/2016 - 0.03 (local) 9/13/2016 - 0.16 (MDA); 9/26/2016 - 0.31 (MDA); 11/2016 - 0.012 (local); 01/2017 - 0.24 (MDA); 04/2017 - 0.09 (MDA); Cytogenetics show der(1:7)(q10;p10)7 chromosome mutation. Repeat of Sep 2015. PCR - 6/2017- 0.035 (local); 10/2017- 0.02 (MDA)
1 user(s) are reading this topic
0 members, 1 guests, 0 anonymous users
