Good luck, FalseAlarm! I hope a match turns up for you quickly or that compassionate use for Iclusig becomes available for you.
Pat
Sudden increase in WBC while on Tasigna? Am I losing reponse to the drug?
Started by
FalseAlarm
, Aug 28 2013 04:19 AM
31 replies to this topic
#21
hannibellemo
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Posted 21 October 2013 - 06:41 AM
Pat
"You can't change the direction of the wind but you can adjust your sails."
DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>
#22
FalseAlarm
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Posted 21 October 2013 - 06:46 AM
Hi Pat,
Thanks for the support. I am hoping for the best now.
#23
jjg
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Posted 21 October 2013 - 08:38 PM
Hi FA, I'm wondering how you are finding the IFN and what dose schedule you are on. I was on it a year a go and found it pretty difficult, it did however drop my WBC, not that it was that high. Once I got to full dose I also got a drop in my PCR of about one log in 6 weeks.
I hope a donor or some ponatinib turns up for you soon.
Dx Dec 2010 @37
2x IVF egg collection
Glivec 600 & 800mg
PCRU March 2012
Unsuccessful pregnancy attempt - relapsed, 3 months interferon (intron A), bad side effects from interferon
Nilotinib 600mg Oct 2012
PCRU April 2013, 2 years MR4.5 mostly PCRU with a few blips
April 2015 stopped again for pregnancy attempt (donor egg), pregnant first transfer, 0.110 at 10wks, 2.1 at 14wks, 4.2 at 16wks, started interferon, slow dose increase to 25MIU per wk, at full dose PCR< 1 for remainder of pregnancy
Healthy baby girl Jan 2016, breastfed one month
Nilotinib 600mg Feb 2016
MMR May 2016
PCRU Feb 2017
#24
FalseAlarm
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Posted 21 October 2013 - 10:14 PM
Hi jjg,
I am on 1.5 MIU and 3 dose/week. It has been three doses now and I am feeling quite good. I did have a mild fever after the first dose but that was it. I did not have my blood tested yesterday when I saw my onc because I was just called back to hear about the status of the enrollment for the compassionate use program, so I don't know what is the level of my wbc now.
#25
jjg
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Posted 22 October 2013 - 06:32 PM
I'm glad you are feeling good on the IFN. It's interesting that you were started on that dose. I was started on 3.5 MIU 3 times a week and that first night was ugly. Unlike the TKIs the dose is calculated on our surface area (height/weight) and while I'm not tiny I'm a bit below average (177cm/56kg). If I had to start IFN I would definitely want to start on the dose you started on and ramp up more quickly. I stayed at 3.5 MIU 3 times a week for a month and then ramped it up. It didn't start doing much for my PCR until it was 5 MIU 4 times a week and finally 3.5 MIU daily
Dx Dec 2010 @37
2x IVF egg collection
Glivec 600 & 800mg
PCRU March 2012
Unsuccessful pregnancy attempt - relapsed, 3 months interferon (intron A), bad side effects from interferon
Nilotinib 600mg Oct 2012
PCRU April 2013, 2 years MR4.5 mostly PCRU with a few blips
April 2015 stopped again for pregnancy attempt (donor egg), pregnant first transfer, 0.110 at 10wks, 2.1 at 14wks, 4.2 at 16wks, started interferon, slow dose increase to 25MIU per wk, at full dose PCR< 1 for remainder of pregnancy
Healthy baby girl Jan 2016, breastfed one month
Nilotinib 600mg Feb 2016
MMR May 2016
PCRU Feb 2017
#26
BethG
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Posted 22 October 2013 - 07:22 PM
Hi Pat (and everyone on this thread!),
I happened to stop by the LLS boards today and do want to clarify--the only Iclusig trial that has been cancelled is the Phase III EPIC trial. The Phase I and II trials are currently still ongoing. The only change is that almost all of us have been dropped to a 15mg dose. I see my doctor tomorrow and will learn more from him then.
FalseAlarm: I wish you all the best on your transplant journey. I am sorry the option to try Iclusig was not available to you. You will be in my thoughts.
Hugs,
BethG
#27
Pin
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Posted 23 October 2013 - 06:22 AM
Hi BethG, thanks for clarifying that - I'm glad to hear that you are still able to be on it and hope that it continues to work for people at the lower dose. Hopefully it will be a dose related issue and not something that occurs very much at the lower amount.
Diagnosed 9 June 2011, Glivec 400mg June 2011-July 2017, Tasigna 600mg July 2017-present (switched due to intolerable side effects, and desire for future cessation attempt).
Commenced monthly testing when MR4.0 lost during 2012.
2017: <0.01, <0.01, 0.005 (200mg Glivec, Adelaide) <0.01, 0.001 (new test sensitivity)
2016: <0.01, <0.01, PCRU, 0.002 (Adelaide)
2015: <0.01, <0.01, <0.01, 0.013
2014: PCRU, <0.01, <0.01, <0.01, <0.01
2013: 0.01, 0.014, 0.016, 0.026, 0.041, <0.01, <0.01
2012: <0.01, <0.01, 0.013, 0.032, 0.021
2011: 38.00, 12.00, 0.14
#28
Pin
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Posted 23 October 2013 - 06:30 AM
I'm sorry to hear that you may need a transplant soon - I will be thinking of you and I hope for you to be cured. Please keep us updated.
Diagnosed 9 June 2011, Glivec 400mg June 2011-July 2017, Tasigna 600mg July 2017-present (switched due to intolerable side effects, and desire for future cessation attempt).
Commenced monthly testing when MR4.0 lost during 2012.
2017: <0.01, <0.01, 0.005 (200mg Glivec, Adelaide) <0.01, 0.001 (new test sensitivity)
2016: <0.01, <0.01, PCRU, 0.002 (Adelaide)
2015: <0.01, <0.01, <0.01, 0.013
2014: PCRU, <0.01, <0.01, <0.01, <0.01
2013: 0.01, 0.014, 0.016, 0.026, 0.041, <0.01, <0.01
2012: <0.01, <0.01, 0.013, 0.032, 0.021
2011: 38.00, 12.00, 0.14
#29
hannibellemo
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Posted 25 October 2013 - 06:50 AM
Hi, Beth!
So good to hear from you, I hope you are well! This news was so disheartening and I'm glad you verified that it was just the Epic trial that was halted. You seem to have escaped, while not unscathed, the blood clotting issue. Hopefully you have had no recurrences of the pancreatitis?
I always figure no news is good news and you will post when you see the need. Take care!
Pat
Pat
"You can't change the direction of the wind but you can adjust your sails."
DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>
#30
Tedsey
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Posted 26 October 2013 - 10:03 PM
I have been reading your posts and I wish you the very best of luck. Sending good vibes to you from across the sea.
Tedsey
#31
Tedsey
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Posted 26 October 2013 - 10:06 PM
Hi Beth,
Always glad to hear you pipe up! Take care. Best wishes!
Tedsey
#32
Trey
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Posted 28 October 2013 - 09:29 AM
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