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Reading For The Newly Diagnosed CML Patient

newly diagnosed CML newby recently diagnosed CML leuke

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#41 Trey

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Posted 28 February 2017 - 05:02 PM

Let us know if you have problems with low blood counts.  That is the issue with Hydroxyurea, not that it is ineffective in decreasing all blood cell counts, both good and bad cells.



#42 sbell111

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Posted 01 March 2017 - 09:49 AM

Let us know if you have problems with low blood counts.  That is the issue with Hydroxyurea, not that it is ineffective in decreasing all blood cell counts, both good and bad cells.

My counts yeatersay were low. WBC came down to 3.5 and HCT to 22.1%.

Hopefully, this is the last of the hydrea's effects and I'll have started to bounce back up when they check me again on Friday. Otherwise, they'll likely want to top up my tank. Either way, I support their use of hydrea to get my WBC level down swiftly.

#43 Gail's

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Posted 02 March 2017 - 01:13 AM

Sbell111, I remember being really excited as I saw my WBC count drop like a rock once I began treatment for CML. In my mind, the high WBCs were the enemy. But after having this disease for a couple of years, I try to keep the perspective that the enemy is actually the cancerous WBC. Drugs that kill off WBCs indiscriminately will take the good cells along with the bad. That's why TKIs are my drug of choice, because they work selectively on the cancer.

My WBC count was 92,000 to start, much lower than yours. I only had spleen pain & enlargement and fatigue prior to diagnosis. Admittedly there was a huge adjustment to the side effects to start, but my overall blood counts rapidly became normal, and thankfully have stayed there. I hope you are soon on a TKI. They're not risk free but seem less harmful than HU, in my opinion.
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

#44 M.A.

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Posted 02 March 2017 - 07:41 AM

I hope you manage to surf the hydroxyurea wave without crashing too Sbell111! Welcome to our club.

 

My white cell count was 89 000 at diagnosis, 2 percent blasts, chronic phase CML. I asked the doctors at what point the blood became sticky/thick enough to be a risk for stroke/heart attack etc. I was told WCC over 90 000.

 

I was put on 2g hydrea per day until the Australian government approval/subsidy for Dasatinib came through (2 week wait). My haematologist wanted to increase my dose to 3g per day as he said my counts weren't dropping fast enough after only 2 days on hydrea. I got a second opinion from another haematologist and stayed on the 2g per day. My counts dropped really quickly, halving each day until they reached almost normal. I could understand why the doctors wanted my WCC lower than 89 000 but I couldn't understand why they wanted it near normal given that some of the white cells would be dodgy CML cells and would be killed off once I was on the Dasatinib. I figured I needed all the healthy blood cells I could keep.

 

I think I actually tapered my own dose down to 1g per day for the last 3 days when I could see my counts approaching normal. I wish I had stopped completely. (My current haematologist told me the effect of hydrea continues two days after the final dose)

 

Then I started the Sprycel. Within a couple of weeks my WCC, platelets etc had dropped significantly and I was in hospital having a blood transfusion due to low blood counts and illness. I'd had two viruses in a row and then bone pain and fever. I then developed a UTI (which I'm not prone to at all). I'm actually normally quite fit and healthy and don't get many viruses/colds but I was completely hammered. 

 

I then was taken off the Sprycel for three weeks to allow my white blood cell counts to increase. My BCR ABL bounced back up during this time.

 

Over time my counts returned to low normal.

 

I wish the docs would fine tune the hydroxyurea experience as it's a blunt tool and needs a more thoughtful approach.


CML diagnosed April 2016

Type One Diabetes diagnosed April 1980 (age 12)

 

BCR-ABL (IS)

46.77  April 2016

3.568  July 2016  

0.076  Oct 2016

0.016  Feb 2017

0.0079  April 2017

0.014  July 2017

0.019  Sept 2017

0.011  Nov 2017

 

Sprycel

100mg April 29 - September 22

75mg  September 23 - October 28

50mg October 29 2016 to present


#45 sbell111

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Posted 04 March 2017 - 04:29 PM

My counts yesterday were only slightly lower than on Tuesday. Doc had me stop Sprycel temporarily but my counts weren't so low that I needed a transfusion. We'll keep checking the numbers on Tuesday and Friday and hopefully soon get back on Sprycel.




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