I'm really tired of the side effects of Tasigna. My hematologist once mentioned the possibility of a dose reduction (150mg in the morning, and the 300mg at bedtime). Anyone here tried a similar dose reduction. Did you feel better? Maintain PCRu?
Tasigna dose reduction-- your thoughts
Started by
tiredblood
, Aug 31 2015 07:01 PM
11 replies to this topic
#2
Trey
-
- PS Beta Group
-
- 1,705 posts
Advanced Member
- LocationSan Antonio, Texas
Posted 31 August 2015 - 07:25 PM
Some will give actual experiences, but after a couple years PCRU dropping down to half dose would be a good option for most patients.
#3
tazdad08
-
- Members
-
- 141 posts
Advanced Member
- LocationTennessee
Posted 02 September 2015 - 11:05 AM
I have to say that I HIGHLY recommend a dose reduction. I probably took it a little too far when I reduced mine. I was actually down to 200mg once every other day. I maintained pcru for a little over two years on that dose. The quality of life was much better. I lost pcru 3 months ago and have been on 400 mg per day since that time. I can really feel the difference. My onc is asking that I stay on 400 per day for 6 months and then we will look at small dose reductions. I am a VERY VERY firm believer in finding that balance of life.
Diagnosed in September 2011. Tried one year of Sprycel. Had great response. Became undetectable in a few months. Changed to Tasigna hoping for less side effects. Self medicated myself down to 20% dose and held for 3 years before becoming detectable again. It has been a journey that has helped me realize what life is about! I am all about a balanced life. I firmly agree with my decision to lower my dose. What is life if you aren't living? Mine will never be the way it was, but it is going to be as good as I can make it! Drs PRACTICE medicine, we can guide our dr to help us with a better life! Don't settle until it's acceptable to you!
#4
Anti-Matters
-
- Members
-
- 18 posts
Member
Posted 02 September 2015 - 11:46 AM
Mr. Tee, I'm down several down several pounds the 8 month I've been on Tasigna. The schedule basically eliminated a lot of my snacking.
#5
rcase13
-
- Members
-
- 523 posts
Advanced Member
- LocationCharlotte, NC
Posted 02 September 2015 - 01:55 PM
For me I am gaining on Tasigna because by the time dinner comes I am so hungry I eat everything in sight!!!
10/01/2014 100% Diagnosis (WBC 278k, Blasts 6%, Spleen extended 20cm)
01/02/2015 0.06% Tasigna 600mg
04/08/2015 0.01% Tasigna 600mg
07/01/2015 0.01% Tasigna 600mg
10/05/2015 0.02% Tasigna 600mg
01/04/2016 0.01% Tasigna 600mg
04/04/2016 PCRU Tasigna 600mg
07/18/2016 PCRU Tasigna 600mg
10/12/2016 PCRU Tasigna 600mg
01/09/2017 PCRU Tasigna 600mg
04/12/2017 PCRU Tasigna 600mg
10/16/2017 PCRU Tasigna 600mg
01/15/2018 PCRU Tasigna 600mg
Cancer Sucks!
#6
tiredblood
-
- Members
-
- 474 posts
Advanced Member
Posted 02 September 2015 - 06:31 PM
Sorry this is off topic but I am curious if people on Tasigna loose weight because of the restrictions around eating before and after taking the medication. I have been gaining weight steadily while on Sprycel for the last year and a half.
I haven't. My whole body is swelled. If I wait longer than one to one and a half hours to eat after taking it, I get nauseated, but have stilled maintained my weight within 5 lbs.
My two-year mark for PCRu will be 3/2016, so I'm not quite at the two-year mark.
#7
gerry
-
- Members
-
- 1,035 posts
Advanced Member
Posted 02 September 2015 - 07:18 PM
I haven't. My whole body is swelled. If I wait longer than one to one and a half hours to eat after taking it, I get nauseated, but have stilled maintained my weight within 5 lbs.
My two-year mark for PCRu will be 3/2016, so I'm not quite at the two-year mark.
I dropped my Gleevec dosage to 300mg after a year PCRu - if your doctor is happy to try it, you should consider it. 
#8
IGotCML
-
- Members
-
- 57 posts
Advanced Member
- LocationDallas / Fort Worth, TX
Posted 03 September 2015 - 08:14 PM
I became PCRu on Tasigna earlier this year and I want to go at least 2 years PCRu before I discuss dose reduction with my onc. What I don't want to do is reduce my dosage and decrease the Tasigna fatigue but then have to go back to full dosage and increase my fatigue.
I gained 10-15 lbs on first year on Tasigna, the reason is because of the fatigue I am unable to exercise at the same level prior to CML. So I had to significantly tighten up my diet to take the extra weight back off.
#9
tiredblood
-
- Members
-
- 474 posts
Advanced Member
Posted 04 September 2015 - 07:29 PM
IgotCML wrote, "I became PCRu on Tasigna earlier this year and I want to go at least 2 years PCRu before I discuss dose reduction with my onc. What I don't want to do is reduce my dosage and decrease the Tasigna fatigue but then have to go back to full dosage and increase my fatigue."
This has run through my mind over and over. It is hard for me to wipe that first three weeks of being on Tasigna from my mind. I felt awful those first few weeks. I'd feel better about it if I were at the 2-year mark, but my quality of life is getting to me. When I was first diagnosed and started treatment, the doctor told me I should start to feel a little better. Well, I actually feel worse, but still alive.
#10
gerry
-
- Members
-
- 1,035 posts
Advanced Member
Posted 04 September 2015 - 11:46 PM
You have to be okay with your decision.
The side effects got worse for me as time went on.
#11
tiredblood
-
- Members
-
- 474 posts
Advanced Member
Posted 06 September 2015 - 10:22 PM
You have to be okay with your decision.
The side effects got worse for me as time went on.
The side effects have gotten worse for me too over time, especially past the one-year mark. I feel better after only two days on 150 mg in the AM and 300 mg in the PM. Can't get my docs blessing until Tuesday due to the holiday weekend.
#12
soundoff
-
- Members
-
- 129 posts
Advanced Member
Posted 07 September 2015 - 10:14 AM
I currently take 400MG of Tasigna in the AM and 200MG in the PM for the last 5 year's and I am PCRU. I think that dose works perfectly for Tasigna.
I apologize I previously said a lower dose but my wife corrected me. In any case you can break up the MG in different amounts successfully.
I apologize I previously said a lower dose but my wife corrected me. In any case you can break up the MG in different amounts successfully.
1 user(s) are reading this topic
0 members, 1 guests, 0 anonymous users
