My WBC went down from 164K last week to 43K this week. I am on Sprycel for just two weeks now. I know I'm not in the normal range yet, but is this typical for a drastic drop like that?
WBC went down
Started by
mscl
, Mar 08 2012 10:35 AM
7 replies to this topic
#1
mscl
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Posted 08 March 2012 - 10:35 AM
Dx 2/10/12.
Sprycel 100. mg.
10/2015, Pleural effusions, both sides, about a 3-4 week break in Rx, reduced to 70 mg.
PEs, weren't completely gone, started building back up, about a 6-8 week break in Rx.
01/2016, Reduced to sprycel 50 mg.
10/2016, developed severe skin rash, mainly upper arms and upper legs, smaller rashes on lower arms, lower legs, upper back/neck. Rx break of about 6 weeks.
1/25/17, reduced to Sprycel 20 mg.
7/19/17, still at 20 mg Sprycel, undetectable.
11/9/17, 20 mg Sprycel, undetectable.
Sprycel 100. mg.
10/2015, Pleural effusions, both sides, about a 3-4 week break in Rx, reduced to 70 mg.
PEs, weren't completely gone, started building back up, about a 6-8 week break in Rx.
01/2016, Reduced to sprycel 50 mg.
10/2016, developed severe skin rash, mainly upper arms and upper legs, smaller rashes on lower arms, lower legs, upper back/neck. Rx break of about 6 weeks.
1/25/17, reduced to Sprycel 20 mg.
7/19/17, still at 20 mg Sprycel, undetectable.
11/9/17, 20 mg Sprycel, undetectable.
#2
CallMeLucky
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Posted 08 March 2012 - 10:51 AM
Yes this is what you should expect - the drugs are amazing aren't they? Congratulations - you're off to a good start. Be aware that it is not uncommon for the counts to continue dropping and get too low - this may not happen, but if it does, for most people it is only temporary as the body adjusts to the drug.
Continued good luck!
Date - Lab - Scale - Drug - Dosage MG - PCR
2010/Jul - MSKCC - Non-IS - Gleevec - 400 - 1.2%
2010/Oct - MSKCC - Non-IS - Gleevec - 400 - 0.25%
2010/Dec - MSKCC - Non-IS - Gleevec - 400 - 0.367%
2011/Mar - MSKCC - Non-IS - Gleevec - 400 - 0.0081%
2011/Jun - MSKCC - Non-IS - Gleevec - 400 - 0%
2011/Sep - MSKCC - Non-IS - Gleevec - 400 - 0.00084%
2011/Dec - MSKCC - Non-IS - Gleevec - 400 - 0%
2012/Mar - MSKCC - Non-IS - Gleevec - 400 - 0.004%
2012/Jun - MSKCC - Non-IS - Gleevec - 400 - 0%
2012/Sep - MSKCC - Non-IS - Gleevec - 400 - 0%
2012/Dec - MSKCC - Non-IS - Sprycel - 100 - 0%
2013/Jan - Quest - IS - Sprycel - 50-60-70 - 0%
2013/Mar - Quest - IS - Sprycel - 60-70 - 0%
2013/Apr - CUMC - Non-IS - Sprycel - 50 - 0.036%
2013/May - CUMC - Non-IS - Sprycel - 50 - 0.046%
2013/Jun - Genoptix - IS - Sprycel - 50 - 0.0239%
2013/Jul - Genoptix - IS - Sprycel - 70 - 0.0192%
2013/Jul - Genoptix - IS - Sprycel - 70 - 0.0034%
2013/Oct - Genoptix - IS - Sprycel - 70 - 0.0054%
2014/Jan - Genoptix - IS - Sprycel - 70 - 0.0093%
2014/Mar - Genoptix - IS - Sprycel - 100 - 0.013%
2014/Apr - Genoptix - IS - Sprycel - 100 - 0.0048%
2014/Jul - Genoptix - IS - Sprycel - 100 - 0%
2014/Nov - Genoptix - IS - Sprycel - 100 - 0.047%
2014/Dec - Genoptix - IS - Sprycel - 100 - 0%
2015/Mar - Genoptix - IS - Sprycel - 100 - 0%
2015/Jun - Genoptix - IS - Sprycel - 100 - 0%
2015/Sep - Genoptix - IS - Sprycel - 100 - 0%
2015/Dec - Genoptix - IS - Sprycel - 100 - 0%
2016/Mar - Genoptix - IS - Sprycel - 100 - 0.0228%
2016/Jun - Genoptix - IS - Sprycel - 100 - 0%
2016/Sep - Genoptix - IS - Sprycel - 100 - 0%
2016/Dec - Genoptix - IS - Sprycel - 100 - 0%
2017/Mar - Genoptix - IS - Sprycel - 100 - 0%
2017/Jun - Genoptix - IS - Sprycel - 100 - 0%
2017/Sep - Genoptix - IS - Sprycel - 100 - 0%
2017/Dec - Genoptix - IS - Sprycel - 100 - 0%
#3
mscl
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Posted 08 March 2012 - 10:55 AM
Thank you CallMeLucky! I appreciate your speedy response!
Marilyn
Dx 2/10/12.
Sprycel 100. mg.
10/2015, Pleural effusions, both sides, about a 3-4 week break in Rx, reduced to 70 mg.
PEs, weren't completely gone, started building back up, about a 6-8 week break in Rx.
01/2016, Reduced to sprycel 50 mg.
10/2016, developed severe skin rash, mainly upper arms and upper legs, smaller rashes on lower arms, lower legs, upper back/neck. Rx break of about 6 weeks.
1/25/17, reduced to Sprycel 20 mg.
7/19/17, still at 20 mg Sprycel, undetectable.
11/9/17, 20 mg Sprycel, undetectable.
Sprycel 100. mg.
10/2015, Pleural effusions, both sides, about a 3-4 week break in Rx, reduced to 70 mg.
PEs, weren't completely gone, started building back up, about a 6-8 week break in Rx.
01/2016, Reduced to sprycel 50 mg.
10/2016, developed severe skin rash, mainly upper arms and upper legs, smaller rashes on lower arms, lower legs, upper back/neck. Rx break of about 6 weeks.
1/25/17, reduced to Sprycel 20 mg.
7/19/17, still at 20 mg Sprycel, undetectable.
11/9/17, 20 mg Sprycel, undetectable.
#4
Trey
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Posted 08 March 2012 - 01:46 PM
A fairly average yet still terrific response, which never ceases to amaze.
Hope you are also taking Allopurinol to help your body dispose of all those dead cells, and also drink extra water during this early time. Extra vitamins are also a good idea right now. The body is going through a major changeover in cells right now and needs extra help.
Regarding WBC possibly going too low in a couple more weeks, that is all too common, and probably unnecessary. Because of that, I wish Oncs would look at lowering the TKI dosage to half dosage at the 3 - 4 week point after the WBC drops below 10K to allow for a "soft landing" of the WBC. If the TKI dosage were lowered at the 10K point to allow for a soft landing of cell counts, and then gradually raised back to a level needed for that individual as measured by FISH/PCR (personalized dosage), then I believe patients would do much better at getting through the first 6 months without severe myelosuppression (very low blood counts). The current method of driving WBC into a crash landing is a problem for so many, and results in some people switching drugs unnecessarily. I doubt any Onc will do that, but they should. Maybe you could ask your Onc to do that, but almost certainly it would not be approved since it is not in the dosing instructions. Oh well, maybe some day.
Glad you are doing well.
#5
mscl
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Posted 08 March 2012 - 02:07 PM
Thank you for the response Trey. Yes, I am on Allopurinol. I don't go back to my onc for two weeks. I think after my weekly blood test next week, I'll ask about the half dosage. I have a weekend out of town planned to a NASCAR race in one month and sure want to be well for that!
Kind regards,
Marilyn
Dx 2/10/12.
Sprycel 100. mg.
10/2015, Pleural effusions, both sides, about a 3-4 week break in Rx, reduced to 70 mg.
PEs, weren't completely gone, started building back up, about a 6-8 week break in Rx.
01/2016, Reduced to sprycel 50 mg.
10/2016, developed severe skin rash, mainly upper arms and upper legs, smaller rashes on lower arms, lower legs, upper back/neck. Rx break of about 6 weeks.
1/25/17, reduced to Sprycel 20 mg.
7/19/17, still at 20 mg Sprycel, undetectable.
11/9/17, 20 mg Sprycel, undetectable.
Sprycel 100. mg.
10/2015, Pleural effusions, both sides, about a 3-4 week break in Rx, reduced to 70 mg.
PEs, weren't completely gone, started building back up, about a 6-8 week break in Rx.
01/2016, Reduced to sprycel 50 mg.
10/2016, developed severe skin rash, mainly upper arms and upper legs, smaller rashes on lower arms, lower legs, upper back/neck. Rx break of about 6 weeks.
1/25/17, reduced to Sprycel 20 mg.
7/19/17, still at 20 mg Sprycel, undetectable.
11/9/17, 20 mg Sprycel, undetectable.
#6
pammartin
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Posted 08 March 2012 - 02:13 PM
Congratulations!
#7
Happycat
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Posted 08 March 2012 - 05:20 PM
Trey,
I dont think that will happen until someone does a study on it and shows it's okay. They don't want any malpractice suits, which makes them risk averse.
#8
pamsouth
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Posted 08 March 2012 - 05:41 PM
Trey, after reading your response, I am wondering if I should have been allowed for my WBC to go down to 1.7, then go in the hospital for 3 days of antibiotics then off Gleevec until counts started coming up then starting with a low dose. I was told, that the TKI target only the bad cells, since the low count of 1.7 I didn't have any good cells. The low white count was to get rid of as many cell as possible, so the good one could reproduce.
I see that you believe lowering the dose for a soft landing would be better. I am inclined to agree. I don't think I would ever want to get that dangerously low again (1.7). Actually I think it scared my onc too. As she said I'll never do that again. But then a couple of months later she wanted me to increase dosage of Gleevec from 400mg to 800mg. It was kind of strange because she actually became my onc about 2 months after diagnosed and I told her about the clinical trial of 400 vs 800 mg of Gleevec (2005. She said they don't know that it would be better, that why it is called a trial, and there she is a short time later (2005) pushing the 800 mg and only a short time after I had been in the hospital and recovered my white counts to almost normal, and then she 800mg.. Needless to say I said NO, I was to worried about getting low counts again, as my CBC were pretty good now, just a little low, and PCR and FISH were at 1 log! But she really hammered hard at me to switch to the 800mg Gleevec.. Then she left me alone until last year wanted me tow switch to Tasigna. I think she is mostly a breast cancer doctor and perhaps wanted to try her trial. Maybe, I don't know.
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