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Headaches and Tasigna


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#1 Damerault

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Posted 06 October 2014 - 10:10 AM

I am currently taking 300 Milligrams of Tasigna daily. I was diagnosed with CML last November and my BCR-ABL is down to 11%. I have had several side effects with the Tasigna most alarming is the drop in both my red cells and PLTs that have caused me to go on and off this drug and Sprycel. Right now I am experiencing daily headaches and have been for weeks if not months. I am currently being seen by a Neurologist and have a Brain MRI scheduled to rule anything else out. I am trying to determine if the Tasigna or my CML is why I am having headaches and what I can do for them. Has anyone else experienced such headaches for such a long duration? and how did you manage them. I am open to any and all suggestions. I also have an appt with an Acupuncturist hoping that may help. Thank you. 


11/29/2013 Diagnosis PLT 538 K/uL HGB 6.2 G/DL, HCT 18.5% WBC 557.00 K/uL Enlarged Spleen
Sprycel 100 MG
Hydroxyurea initially 4 capsules daily
By 4/2014 PLT 27, WBC and RBC Low. Off Sprycel for 3 weeks
After 3 weeks, blood counts normal, no mutation, back on Sprycel 50 MG
5/2014 PLT too Low off Sprycel 4 weeks
6/2014 started Tasigna
Side Effects- Nauseous, Headaches, Tired
8/2014 second opinion Mass General CML Specialist
Continuous transfusions of RBC, PLTs and NEualasta to temp increase blood cells to fight off infection.

Remain on full dose Tasigna

Major p210 International Scale

05/11/2015 0.0950
09/08/2015 0.0782
01/19/2016 0.0310
04/28/2016 0.0161
07/25/2016 0.0244
11/04/2016 0.0140
02/06/2017 0.0129
05/23/2017 0.0087
Today 0.0000



Be well, Diane.


#2 JPD

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Posted 06 October 2014 - 02:59 PM

What does your Onc say about it?  Im not aware of headaches as a sidefx of Tasigna (Im on same dosage), but Im hardly an expert.  Have they ruled everything else out blood pressue, stress, vision, etc?...


January 15: .53%

April 15:       .78%

July 15:      1.1% - upped dosage to 400mg after this test

Oct 15:       .85%

December 15:  .28%

March 16: .29%

July 16: .34%

October 16: .11%

January 17: .081%

April 17: .055%

July 17: .135%

Oct 17: .008%


#3 Trey

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Posted 06 October 2014 - 03:08 PM

Could be the Tasigna.  If debilitating side effects such as severe headaches persist it is usually best to switch drugs.  The various drugs affect us each differently.  Sprycel causes headaches at first for some people, but they usually go away after a couple weeks. 



#4 hannibellemo

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Posted 06 October 2014 - 03:17 PM

I think I'm more concerned that you aren't being allowed to take your medicine. You are only taking 1/2 the normal dose of tasigna, if I understand you right.

 

It is not uncommon to have moderate to severe drops in wbc, rbc and platelet counts on these drugs, especially at the beginning. Most of us have experienced that. You didn't say how severely your counts dropped but the TKI needs to be taken in order for it to work. 

 

 

Could you give us more information on your current counts?


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>


#5 Damerault

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Posted 06 October 2014 - 06:40 PM

My lowest PLT count was 19,000 at which time I received PLT transfusions. Last week I was at 35,000. The hope is my blood counts will continue to go up as my BCR ABL goes down. Found out today it is at 3% which I am taking as good news as it means I am responding to the drug. My Hematologist/Oncologist mentioned the need to maybe increase the Tasigna dosage (why I am not sure why if the BCR ABL continues to drop on the current dose) but is hesitant to while my headaches are so bad and my PLTs are still pretty low. I have been told headaches are a side affect with Tasigna for about 25 - 30% of patients on it. But, I don't think in the severity and duration I have had them. I have been on this dose of Tasigna for about 8 weeks. I was on the full dose prior to that. I do not have high blood pressure but have always experienced occasional headaches even before my CML diagnosis. It was headaches that prompted all the blood tests ( that and the enlarged Spleen) that lead to my CML diagnosis. I thought ok, I have headaches because of the Anemia and CML. Bur, they have gotten worse not better. I hate to have to come off this drug if it is going to save my life and keep my CML under control. I was hoping that with the CML going down and my blood levels coming up the headaches might go away. Or maybe when my body adjusted to the Tasigna? No luck yet. Thank you everyone for your comments and support. It is really helpful to have this forum.

11/29/2013 Diagnosis PLT 538 K/uL HGB 6.2 G/DL, HCT 18.5% WBC 557.00 K/uL Enlarged Spleen
Sprycel 100 MG
Hydroxyurea initially 4 capsules daily
By 4/2014 PLT 27, WBC and RBC Low. Off Sprycel for 3 weeks
After 3 weeks, blood counts normal, no mutation, back on Sprycel 50 MG
5/2014 PLT too Low off Sprycel 4 weeks
6/2014 started Tasigna
Side Effects- Nauseous, Headaches, Tired
8/2014 second opinion Mass General CML Specialist
Continuous transfusions of RBC, PLTs and NEualasta to temp increase blood cells to fight off infection.

Remain on full dose Tasigna

Major p210 International Scale

05/11/2015 0.0950
09/08/2015 0.0782
01/19/2016 0.0310
04/28/2016 0.0161
07/25/2016 0.0244
11/04/2016 0.0140
02/06/2017 0.0129
05/23/2017 0.0087
Today 0.0000



Be well, Diane.


#6 jjg

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Posted 06 October 2014 - 09:49 PM

Yes I have 2 types of headaches that I associate with starting Tasigna. I didn't have them on glivec and before dx if you discount sinus pain I'd probably only had a few headaches in my entire life. Headache 1 is behind the eyes and is similar to a sinus inflammation type pain and seems to be associated with movement of fluid behind the eyes - my face is quite lean and you can actually see why it hurts. Headache 2 is upper forehead and has only been really bad during exercise. Both of them come and go. A few weeks back headache 2 had been really worrying me for about a month, they scanned and found nothing significant. Then like most of the weird side effects it disappeared and hasn't returned yet.

Most of the side effects will cycle. I suspect that when you first start taking a drug it can take a while for the good part of a cycle to appear.


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


#7 Ray99

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Posted 06 October 2014 - 11:31 PM

Are you on 300mg once or twice daily? The standard dose is twice daily. I have been on Tasigna for about two and half years and not experience heartache. But I did have low plt issue at the beginning. The doctor put me on a three week drug break followed by three week half dose. The plt count went back to around 150k and stay at that level ever since.

#8 Damerault

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Posted 07 October 2014 - 07:37 AM

Yes I have 2 types of headaches that I associate with starting Tasigna. I didn't have them on glivec and before dx if you discount sinus pain I'd probably only had a few headaches in my entire life. Headache 1 is behind the eyes and is similar to a sinus inflammation type pain and seems to be associated with movement of fluid behind the eyes - my face is quite lean and you can actually see why it hurts. Headache 2 is upper forehead and has only been really bad during exercise. Both of them come and go. A few weeks back headache 2 had been really worrying me for about a month, they scanned and found nothing significant. Then like most of the weird side effects it disappeared and hasn't returned yet.

Most of the side effects will cycle. I suspect that when you first start taking a drug it can take a while for the good part of a cycle to appear.

 

Thank you for responding. It is so nice to hear from someone else that might be experiencing something similar to me. I really think it is the Tasigna. I am having a scan on Friday to make sure nothing else is wrong and then will try to work with my Neurologist to see what I can take for the headaches. Everything seems to have a reaction with the Tasigna. I have been on both Tylenol with Codeine and Butalbital both are barbiturates and I have been advised to not take them daily. Then they tried Amitriptyline but it causes heart arrhythmia when taken with Tasigna. Now I am on a medication called Nadolol (really a Blood Pressure Medication) in the hopes that will help. From reading everyone's prior posts,  I am so hopeful this side will disappear but it hasn't yet. Thank you again.


11/29/2013 Diagnosis PLT 538 K/uL HGB 6.2 G/DL, HCT 18.5% WBC 557.00 K/uL Enlarged Spleen
Sprycel 100 MG
Hydroxyurea initially 4 capsules daily
By 4/2014 PLT 27, WBC and RBC Low. Off Sprycel for 3 weeks
After 3 weeks, blood counts normal, no mutation, back on Sprycel 50 MG
5/2014 PLT too Low off Sprycel 4 weeks
6/2014 started Tasigna
Side Effects- Nauseous, Headaches, Tired
8/2014 second opinion Mass General CML Specialist
Continuous transfusions of RBC, PLTs and NEualasta to temp increase blood cells to fight off infection.

Remain on full dose Tasigna

Major p210 International Scale

05/11/2015 0.0950
09/08/2015 0.0782
01/19/2016 0.0310
04/28/2016 0.0161
07/25/2016 0.0244
11/04/2016 0.0140
02/06/2017 0.0129
05/23/2017 0.0087
Today 0.0000



Be well, Diane.


#9 Damerault

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Posted 07 October 2014 - 07:47 AM

Are you on 300mg once or twice daily? The standard dose is twice daily. I have been on Tasigna for about two and half years and not experience heartache. But I did have low plt issue at the beginning. The doctor put me on a three week drug break followed by three week half dose. The plt count went back to around 150k and stay at that level ever since.

I am on 300mg once a day. I was on the standard dose but my PLTs, HGB, HCT and Absolute Gran Ct went pretty low and required transfusions and a shot of Neulasta to stimulate the growth of my white blood cells to fight infection. My Hematologist/Oncologist is hesitant to raise the does again until my blood levels are back to normal (whatever that might be now) and I can fight the headaches. Last Blood Test was last week and HGB was 9.9, HCT 29.4, PLT 35 so nothing is normal yet. So encouraging to hear you have been on Tasigna for two and a half years. Happy for you.


11/29/2013 Diagnosis PLT 538 K/uL HGB 6.2 G/DL, HCT 18.5% WBC 557.00 K/uL Enlarged Spleen
Sprycel 100 MG
Hydroxyurea initially 4 capsules daily
By 4/2014 PLT 27, WBC and RBC Low. Off Sprycel for 3 weeks
After 3 weeks, blood counts normal, no mutation, back on Sprycel 50 MG
5/2014 PLT too Low off Sprycel 4 weeks
6/2014 started Tasigna
Side Effects- Nauseous, Headaches, Tired
8/2014 second opinion Mass General CML Specialist
Continuous transfusions of RBC, PLTs and NEualasta to temp increase blood cells to fight off infection.

Remain on full dose Tasigna

Major p210 International Scale

05/11/2015 0.0950
09/08/2015 0.0782
01/19/2016 0.0310
04/28/2016 0.0161
07/25/2016 0.0244
11/04/2016 0.0140
02/06/2017 0.0129
05/23/2017 0.0087
Today 0.0000



Be well, Diane.


#10 lsburris

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Posted 25 February 2015 - 01:41 PM

I know that this is an older post but I didn't want to start a new one.

I have been taking Tasigna 300mg 2x daily as perscribed since my dx in April 2014. PCRU by mid-October.  No headaches out of the ordinary but a plethora of other side effects but then in November a headache started in the front right above my right eye and has continued now, every day since.  I've been to my pcm, had a number of tests done to rule out other possibilities, including CT, and thankfully nothing.  Onc and pcm rx'd some pain meds.  I had my routine 3-month in January and discussed with my Onc but I lost PCRU so he doesn't want to reduce dosage or change drugs just yet.  This April I will have my next PCR and 3-month follow-up and Onc has promised to discuss a change regardless of PCR results.  After 4 months of a daily headache my quality of life is diminishing.  It's becoming hard to focus on bad days and that's not good for a guy who makes a living sitting at a computer all day managing the finances of a small non-profit.

 

Anyone have suggestions on what has worked for you?

 

Thanks!



#11 Billie Murawski

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Posted 26 February 2015 - 02:43 AM

Hi ISB,

MY dx was 2007 I was on Gleevac for 3 years no headaches just a lot of gi issues. I'm going on 4 years of Sprycel I had the Sprycel headaches for a couple months but they gradually went away. About 5 months ago I started getting headaches again pretty bad ones.

I had a lot of stress at that time.Then in Dec they stopped until today this one just won't go away, I think they are all just related to stress,the weather (I would love to just take a walk around the block) it's just too darn cold. I haven't been able to sleep for over 2 years insomnia I guess. I feel like once the weather breaks and we can just move around a lot more that they will go away. I know it's miserable to have them go on and on I just take tylonal and keep myself as relaxed as much as possible usually subliminal music or white noise helps some.  Good Luck   Billie






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