I was hoping that someone could help me understand what these test results mean. I am anxious to reduce my Gleevec dosage due to the horrible diarrhea that I have had EVERY day while taking it. I am doing well with the numbers according to my Onc/Hem, I trust this group has the answers I need.
9 replies to this topic
#1
monmon
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Posted 15 December 2017 - 07:20 PM
Diagnosed March 2017
WBC 94,000
Started Gleevec April 2017
March 2017 - BCR-ABL1 p210 59.64 detected
June 2017 - BCR-ABL1 p210 11.65 detected
July 2017 - BCR-ABL1 p210 1.999 detected
Sept 2017 - BCR-ABL1 p210 .5690 detected
changed labs for November test. I don't know why
Nov 2016 B3A2 .094 detected
back to original lab Jan 2018
Jan 2018 BCR-ABL1 p210 .5595 detected
#2
kat73
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Posted 15 December 2017 - 11:19 PM
Not sure about the last line, but all the rest is very, very good. It is probably too early to reduce dosage, but I do think you can get on top of the diarrhea with your pc's help. The standard thing is Metamucil or Benefiber, a probiotic, don't drink too much water, and maybe (again, check with the doctor) an OTC anti-diarrheal (Immodium?). When you reach MMR (0.1) I'll bet your onc will let you reduce to 300 mg, and that, plus time, will probably help with the side effects.
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.
#3
cmljax
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Posted 16 December 2017 - 08:44 AM
Good PCR trend monmon. I agree with kat73 - start discussing dose reduction with your onc as soon as you reach MMR or maybe even sooner. Be relentless about it. I had to be, but it paid off. For my onc, the key justification for allowing my dose reductions was to alleviate my side effects, which were truly pretty bad (multiple squamous cell skin cancers; heart arrhythmia; dry mouth; swollen salivary glands; mouth ulcers). Most of these have gone away now that I am on 1/4 of the original dose. So, don't be shy about your side effects with your onc; you might even want to embellish just a bit to drive home the dose reduction discussion. But first things first - get to MMR which it looks like you will pretty soon.
I recall others on this site have discussed this topic and I think some have found that when you take the Gleevec and what and when you eat can make a difference. Use the search function and I think you will find a lot of suggestions on this issue.
Tasigna messed up my regularity quite a bit but I only had occasional bouts with diarrhea. My onc ok'd Immodium, which always worked almost immediately. Have always used Metamucil and used probiotic and digestive enzyme supplements for a while, but no longer necessary. I still have some irregularity, but not as bad as it was at first.
Dx 9/26/16 WBC 28800; platelets 749; FISH 97% PCR 43%
Tasigna 600MG per day
October 2016 PCR 22% IS
November 2016 PCR 5.8% IS
December 2016 PCR 0.1% IS MMR!!
March 10, 2017 PCR 0.006% IS MR 4.22
Tasigna 450MG per day
April 5, 2017 PCR <.003% IS
June 5, 2017 PCR <.003% IS (dose reduction validated!!!)
Tasigna 300MG per day starting June 15, 2017
6-day drug break starting June 20, 2017 due to multiple AE's
July 24, 2017 PCR <.003% IS
September 18, 2017 Negative, AKA PCRU
Tasigna 150mg per day starting 9/18/17
October 30, 2017 Negative
December 11, 2017 Negative
#4
monmon
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Posted 16 December 2017 - 06:47 PM
Thank you Kat73 and cmljax for replying. I don't know what is the difference between the BCR-ABL1 p210 (which was reported by the first lab) and the B3A2 (reported by 2nd lab) tests. Is it the same test?
As far as the diarrhea I have done all that has been suggested here (Immodium ,Benefiber, etc.) and none of it did very much for me. I have been working with a nutritionist and am on Banatrol Plus. (It has a prebiotic in it.) This is what they give people with C. diff who are in the hospital. It works somewhat. At least I don't lose so much fluid at one time that my body goes into chills. I am on rice porridge and bone broth and blended vegetables for my food. I also take a probiotic. Fighting electrolyte imbalance and dehydration is no fun.
That said I am very grateful that my body is responding well to the Gleevec (generic) and will be quite demanding when discussing dose reduction with my Onc/Hem once I reach MMR
Diagnosed March 2017
WBC 94,000
Started Gleevec April 2017
March 2017 - BCR-ABL1 p210 59.64 detected
June 2017 - BCR-ABL1 p210 11.65 detected
July 2017 - BCR-ABL1 p210 1.999 detected
Sept 2017 - BCR-ABL1 p210 .5690 detected
changed labs for November test. I don't know why
Nov 2016 B3A2 .094 detected
back to original lab Jan 2018
Jan 2018 BCR-ABL1 p210 .5595 detected
#5
jmoorhou
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Posted 17 December 2017 - 02:02 AM
Monmom, have you tried taking gleevec one hour after meal and less water, that should help. And take it one hour after you Start dinner...that seems to reduce gleevec's interaction with strong digestive fluids. I find the longer you can draw out eating the better.
Diagnosed 3/2014 WBC 28 Non detectable within 3 monthsGleevec 400 mg 5/2014 one hour after dinner really improves nausea300 mg 12/15/2016200 mg and 300 mg Gleevec 2/25/2017 (after 3 years on Gleevec) For last four months taking 300 mg per day. Last CMC showed liver enzymes elevated, went to a good Naturopath and he recommended 4 Tumeric, 10,000 mg Vitamen D, and 3 milk thistle (silymarin) daily. Also use One<p>Day Detox Dandeloin tea, and Nettle Tea and a slice of ginger every day...in two months liver tests were below normal.Janis
#6
Antilogical
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Posted 17 December 2017 - 03:45 PM
I'm also taking imatinib, and I, too, developed chronic diarrhea shortly after starting the drug. I ate a lot of yogurt, cheese, and Immodium to try to get control of it. Nothing helped.
About a year ago, after some trial and error, I discovered that imatinib wasn't the culprit at all. It was a recurrence of the dairy allergy that my mom said I had as a baby. The timing of it was a coincidence. I've since made a few adjustments in my diet, and the trots have gone away.
Dx: Sudden severe anemia detected 07/2011, followed by WBC spike. CML Dx 02/2012.
Rx: 03/2012-Gleevec400. Reduced 02/2013 to Gleevec300 due to side effects (low blood counts).
Response: PCR-Und within 7 mo. on G400. Maintained MMR4-MMR4.5 on G300. PCR-Und since 02/2016.
#7
Jan0080
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Posted 18 December 2017 - 06:04 PM
So Cedars Sinai Hospital has gone to the IS so they now report:
Major Breakpoint Cluster Region (M-BCR/ABL1) ratio: 0.0052
Major Breakpoint Cluster Region (M-BCR/ABL1) IS%:0.015%
While I was hoping to be Undetectable, my numbers have come down in a fine fashion. I am certain that I focus on the IS% but I don't understand what the "ratio" number means.
Thanks!
Major Breakpoint Cluster Region (M-BCR/ABL1) ratio: 0.0052
Major Breakpoint Cluster Region (M-BCR/ABL1) IS%:0.015%
While I was hoping to be Undetectable, my numbers have come down in a fine fashion. I am certain that I focus on the IS% but I don't understand what the "ratio" number means.
Thanks!
Diagnosed Dec 27, 2016 started Sprycel 100 mg Jan 7, 2017. Initial PCR 77.9 after 30 days 28.4, day 79 1.4 and day 115 0.1%. That is a 99.9% reduction! Sprycel 100 mg for 3 months, 80 mg for 1 month and now at 50 mg. Hooray for Sprycel!!! PCR June 5, 2017 0.04! Dose reduction to 40 mg 6/15/2017 due to shortness of breath. 20 mg as of June 29th. PCR .02 9/11/2017. PCR .015 IS as of 12/11/2017. Lungs substantially better. Low dose Sprycel works!
Adverse Effect - At about week 6 of Sprycel sharp muscle pain that would start at 2 AM and last for about 4 hours. This lasted about 4 weeks and went away, thank goodness.
Adverse Effect - At about week 6 of Sprycel sharp muscle pain that would start at 2 AM and last for about 4 hours. This lasted about 4 weeks and went away, thank goodness.
#8
Trey
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Posted 18 December 2017 - 08:12 PM
Mon,
B3A2 and B2A2 are the two types of P210 Philadelphia Chromosomes. You have the B3A2 version, which is very common.
Do you split dosage 200mg morning and evening? If not, do that.
Jan,
the raw % is 100 x ratio. Then the IS normalizes the result by an average of patients.
#9
tiredblood
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Posted 19 December 2017 - 07:59 PM
How is it determined which P210 one you have?
#10
Trey
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Posted 20 December 2017 - 09:28 AM
Certain PCR and FISH tests can define B2A2 vs B3A2, but often it is not on the reports. Need to ask the Onc about whether it has been determined.
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