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Anemia Danger


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#1 xxgirl

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Posted 22 July 2015 - 04:05 PM

Low counts persist.

 

Last CBC:

WBC: 3.0

ANC: 621

HGB: 6.6

Platelets: 33

 

Had a blood transfusion the following day.  I wasn't having any of my "usual" low hgb side effects, which for me include a heaviness in my chest, but I had been feeling more fatigued.  Does your body get used to being deprived of oxygen?  Will it just readjust, and make due with less?  What are the dangers when hgb falls below 6.5?  What am I in danger of?

 

Also - as it seems that my dr seems to treat my most critical issue of the week (this week HGB won), so did not make any mention of it, but I've been noticing that the percentage of lymphocytes have been going up and up as the weeks go by.  (Absolute lymphs are still within normal range, but lymph percentage was 76.3% on my last CBC.  Is this just because all of my other percentages are so low? Neutrophils at 20.7% so are lymphocytes the only cells that aren't being suppressed right now?)

 

Also - Trey and Michael, you were both right.  Dr. gave me a 4 day drug break, and reduced my Sprycel dosage to 50mg per day as of about a week ago.  PCR number is still relatively high at 9.8, but heading in the right direction, so we'll see if the 50mg can be effective in stabilizing blood counts while simultaneously lowing the PCR.



#2 scuba

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Posted 22 July 2015 - 04:55 PM

Here's a reference on Hemoglobin levels. Below "8" is a critical threshold.

 

http://www.ncbi.nlm....les/PMC3226154/

 

What is your RBC level? An appropriate response by your doctor is to stop Sprycel until your levels return to a safe zone (not necessarily normal - just safe). And then re-start Sprycel at the lower dose and measure response a week or so later. Your body should adapt over time.


Diagnosed 11 May 2011 (100% FiSH, 155% PCR)

with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein

 

Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate

6-8 grams Curcumin C3 complex.

 

2015 PCR: < 0.01% (M.D. Anderson scale)

2016 PCR: < 0.01% (M.D. Anderson scale) 

March        2017 PCR:     0.01% (M.D. Anderson scale)

June          2017 PCR:     "undetected"

September 2017 PCR:     "undetected"


#3 xxgirl

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Posted 22 July 2015 - 05:09 PM

Thanks Michael.  I'd come across that reference before, just have a hard time considering myself "critically ill".

 

RBC are low as well, under 2.

 

I've already begun taking the 50mg, so we'll see if it clobbers my numbers, or if I have any sort of recovery.  A longer drug holiday may be in order.

 

Thanks for the input.  I know that you suffered with severe neutropenia for quite a while, as well as anemia, so I appreciate your suggestions.



#4 Melanie

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Posted 22 July 2015 - 06:39 PM

Scuba is right that most Oncs give a drug break until numbers return to a "safe" level. I too struggled for years with very low counts, resulting in many drug breaks, transfusions, dose adjustments, and TKI changes. Sometimes finding the right balance that works takes a while. Could be the level of CML is more of a concern right now than your low counts. If that's not the case then a longer drug break is probably your best course till your body adjust. Hopefully you're seeing a CML specialist and they're monitoring you carefully. Wishing you the best!
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)

#5 scuba

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Posted 22 July 2015 - 07:11 PM

XXgirl - what is your FISH level and did you have many Blasts at diagnosis?

 

Posting a copy of your bone marrow report could be helpful.

 

Taking a drug break to allow your bone marrow to recover is o.k. if your blasts are very low or zero. That gives you time. During a drug break recovery of your bone marrow happens to both your leukemic system and your normal system. Contrary to myth - the CML system does respond to signals to hold off - just not very well and your normal system will recover somewhat. This is true as long as the blasts are low. CML kills when it becomes run-away.  Once your normal system has "filled the void" sort-of-speak (along with some CML) - then you can hit the CML system again with the lower dose Sprycel. Hit - release - hit - release and then you should be on your way. It took me two hits and release and then I stabilized.

 

RBC under '2' is not good. Talk to your doctor about a drug holiday until your numbers recover. He should monitor you every week until they have risen so you are good to go. 50 mg of Sprycel is still pretty potent.

 

You'll get through this period.

 

p.s. what are your other counts (Neutrophils, Platelets, in particular)


Diagnosed 11 May 2011 (100% FiSH, 155% PCR)

with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein

 

Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate

6-8 grams Curcumin C3 complex.

 

2015 PCR: < 0.01% (M.D. Anderson scale)

2016 PCR: < 0.01% (M.D. Anderson scale) 

March        2017 PCR:     0.01% (M.D. Anderson scale)

June          2017 PCR:     "undetected"

September 2017 PCR:     "undetected"


#6 Trey

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Posted 22 July 2015 - 10:11 PM

I would wait and see what the reduced dosage does for you.  Give it a few weeks and reassess.

 

Regarding lymphocyte percentages, forget the percentages and only look at absolute numbers.  Lymphocyte percentages are skewed because your Myeloids (neutrophils) are so low.

 

You are not the only one who has ever faced this, so don't feel all alone in this.



#7 Gail's

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Posted 23 July 2015 - 01:13 PM

Are you getting meds to boost red blood cell production like EPO? Might make your recovery a bit faster although they do have a few side effects.
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

#8 xxgirl

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Posted 24 July 2015 - 10:27 AM

Thanks to everyone for the encouragement. Its only been a couple of months with low counts but I've already had enough of weekly CBCs, Saturday blood transfusions, stinging procrit shots, and missing work every week for labs or appointments. I haven't been able to do any activities at all this summer.

Cancer can be pretty damned inconvenient. And I suppose, if that's my biggest complaint, then I'm getting off pretty easy.

Thanks all.




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