Jump to content


Photo

back on Tasigna


  • Please log in to reply
14 replies to this topic

#1 Floa7

Floa7

    Advanced Member

  • Members
  • PipPipPip
  • 53 posts
  • Locationindiana

Posted 02 July 2017 - 06:57 AM

I am back  on Tasigna after a 11 week break. It slowly went up. read my signature


1 2012 CML detected Started Gleevec 400 mg

In nov 2014 my pcr started to rise by Feb I stopped Gleevec and went onto

2 2015 Tasigna 600 mg/day

I have been PCRU for 2 years and stopped Tasigna 4 7 2017

5 8 2017 results 0.008

5 30 2017 results 0.028 

6 30 2017 results 0.3, I have restarted the Tasigna because it went above 0.1 

 

My son

11 2011 CML detected Started Gleevec 400 mg

He went 2 1/2 years on gleevec and lost PCRU

Started Sprycel went PCRU for 2 years and stopped the Sprycel, went back for 3 month checkup and PCR was 8.0

He went back onto Sprycel and now is PCRU again

3 16 2017 results 0.008

6 1 2017 results 0.002


#2 carrie

carrie

    Advanced Member

  • Members
  • PipPipPip
  • 72 posts
  • LocationShow Low, Arizona

Posted 08 July 2017 - 01:46 PM

I have been on Gleevec for 10 years and now because my numbers are high, I am being switched to Tasigna. I am worried about changing after all these years. I don't know anything about this drug.


Diagnosed   2007

On Gleevec for 10 years

Results from 2007-2012 not shown below

International Scale from 2012 until now

Never went to 0

0.166

0.038

1.155

0.789

0.104

0.099

0.701

1.986

1.063

1.799

2.817

1.832

3.449

1.050

1.438

3.376

3.370

3.370

2.580

8.990

4.250

6.176

14.109   Changing to Tasigna 7/7/17

 

7/28/17  800 mgs Tasigna

10/5/17  600 mgs Tasigna (Lots of bad side effects)

10/16/2017    PCR down to 0.141  

1/15/18          PCR down to  0.066   Dose reduction again. Now 400 mgs daily.


#3 Gail's

Gail's

    Advanced Member

  • Members
  • PipPipPip
  • 634 posts

Posted 08 July 2017 - 02:03 PM

Carrie, I am on sprycel, so can't offer advice on tasigna. I'm wondering a few things: why your onc didn't switch you sooner, why not sprycel instead of tasigna, and have you had a mutation analysis?
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

#4 cmljax

cmljax

    Advanced Member

  • Members
  • PipPipPip
  • 115 posts

Posted 09 July 2017 - 07:20 AM

Good questions from Gail's. I have been on Tasigna for over 9 months - see my history below.  It has worked tremendously well against my CML as I am nearly undetected.  But I have had a rash of side effects, some bad and some not so bad.  If you do switch to Tasigna, you must have an EKG before starting to make sure your QTc interval is normal. Tasigna is harder on the heart that Sprycel and Srycel is more apt to cause pleural effusions.

 

Bad side effects - multiple squamous cell skin cancers (9) and precancers (@40);  5 episodes of swollen salivary glands followed by multiple mouth ulcers; heart arrhythmia (so far benign but uncomfortable and tiring).

 

Lesser side effects - irregularity; headache, cough, shooting pains in neck and back, mild insomnia, hair stopped growing on full dose (600 mg), mild fatigue.

 

If my most recent dose reduction does not moderate these side effects more, I may switch to Sprycel, but before making that decision, I want to see if I can maintain response on half dose (300 mg).

 

Not trying to scare you - all TKI's have potential bad side effects as I am sure you already know and each individual reacts differently.  Tasigna seems to be better tolerated in younger people from what I have read on this forum, but I do not have real data to back that up.

 

Finally, the mutational analysis is important before starting a new medicine given your PCR history.  If you by some chance happen to have T315i, neither Tasigna nor Sprycel will work. Here's hoping you don't. You more likely have kinase domain mutations which Tasigna and Sprycel handle much better than Gleevec from what I understand.

 

Good luck whatever you decide and be sure to read the detailed manufacturer circulars on both Tasigna and Sprycel before you decide.


Dx 9/26/16 WBC 28800; platelets 749; FISH 97% PCR 43%

Tasigna 600MG per day

October 2016                     PCR 22% IS

November 2016                 PCR 5.8% IS

December 2016                 PCR 0.1% IS  MMR!!

March 10, 2017                 PCR 0.006% IS  MR 4.22

Tasigna 450MG per day

April 5, 2017                      PCR <.003% IS

June 5, 2017                     PCR <.003% IS (dose reduction validated!!!)

Tasigna 300MG per day starting June 15, 2017

6-day drug break starting June 20, 2017 due to multiple AE's

July 24, 2017                     PCR <.003% IS

September 18, 2017          Negative, AKA PCRU

Tasigna 150mg per day starting 9/18/17

October 30, 2017               Negative

December 11, 2017           Negative


#5 carrie

carrie

    Advanced Member

  • Members
  • PipPipPip
  • 72 posts
  • LocationShow Low, Arizona

Posted 09 July 2017 - 10:28 AM

Gails's and Cmlijax,

Thanks for responding. I think the doc thought I was close enough to zero to not make the big move with another medicine.

Yes, I had the T315i bloodwork mutation test done.

I had mutation tests done 4 other times and they never found anything. Not sure if the lower numbers had anything to do with finding a cell with mutations.

I call the doc July 13th.

July 14th I go get the ECG and other base line blood tests done.

On July 14th I will be 60 so the comment it works better with younger people doesn't apply to me.

The scary thing for me is the nasty new side effects. I am a school teacher and financially (and insurance) can't quit my job.

Are the skin cancers from being out in the sun? The multiple squamous ones?

I am travelling for two weeks and then back to school. I am changing meds right as school starts,,,,YIKES.

Over the 10 years I have had CML I have been strong but now I am panicking and worried.

They are not putting me on Sprycel because I am prone to respiratory infections/pneumonia so the plural effusions would not be good for me.

I don't like feeling scared.

Carrie


Diagnosed   2007

On Gleevec for 10 years

Results from 2007-2012 not shown below

International Scale from 2012 until now

Never went to 0

0.166

0.038

1.155

0.789

0.104

0.099

0.701

1.986

1.063

1.799

2.817

1.832

3.449

1.050

1.438

3.376

3.370

3.370

2.580

8.990

4.250

6.176

14.109   Changing to Tasigna 7/7/17

 

7/28/17  800 mgs Tasigna

10/5/17  600 mgs Tasigna (Lots of bad side effects)

10/16/2017    PCR down to 0.141  

1/15/18          PCR down to  0.066   Dose reduction again. Now 400 mgs daily.


#6 cmljax

cmljax

    Advanced Member

  • Members
  • PipPipPip
  • 115 posts

Posted 09 July 2017 - 11:34 AM

Carrie:

I certainly was not trying to scare you.  I was 63 at Dx now 64.  Prior to CML, I had 2 precancerous lesions removed from my left temple area. So all the squamous cancers and other precancerous lesions were after Dx and after starting Tasigna. My oncologist initially said Tasigna was not the cause, but eventually he had to admit that it was at least a contributing factor along with a suboptimal immune system.  The lesions were all on sun exposed areas of arms and legs, so obviously theses areas were prone already.  But 9 confirmed cancers in 4 months and 40 other precancerous lesions over the same time frame and my onc finally agreed to my first dose reduction in early March.  Since then I have had no new skin cancers and "only" 5 precancerous lesions.  There is only 1 other documented case of this type of skin cancer and Tasigna, so it is very rare.  While you may have some skin rashes, some folliculitis and even some petechiae, these are usually not serious (I have all of these but very manageable).

 

I understand the fear.  Despite all the issues I have had with Tasigna, it has obliterated the CML in a very short period of time. So my onc and I are trying a further dose reduction (to 300 mg) before switching.  I have had pneumonia twice and am an ex-smoker, so the lung issues with Sprycel scare me too.  For now, it's the devil I know so I am sticking with Tasigna for a while longer anyway.

 

I hope Tasigna is easier on you than it has been on me.  And if your PCR responds quickly to it, you could start discussing dose reduction with your onc.

 

Good luck and keep us all updated.


Dx 9/26/16 WBC 28800; platelets 749; FISH 97% PCR 43%

Tasigna 600MG per day

October 2016                     PCR 22% IS

November 2016                 PCR 5.8% IS

December 2016                 PCR 0.1% IS  MMR!!

March 10, 2017                 PCR 0.006% IS  MR 4.22

Tasigna 450MG per day

April 5, 2017                      PCR <.003% IS

June 5, 2017                     PCR <.003% IS (dose reduction validated!!!)

Tasigna 300MG per day starting June 15, 2017

6-day drug break starting June 20, 2017 due to multiple AE's

July 24, 2017                     PCR <.003% IS

September 18, 2017          Negative, AKA PCRU

Tasigna 150mg per day starting 9/18/17

October 30, 2017               Negative

December 11, 2017           Negative


#7 thatguy

thatguy

    Advanced Member

  • Members
  • PipPipPip
  • 318 posts
  • LocationWild west

Posted 09 July 2017 - 10:08 PM

Carrie, don't panic. I'm assuming you were only on 400 MG Gleevec. If that's the case, keep in mind it may even have worked better at 600 or 800 mg. You managed 10 years out of the most basic TKI, and have many more potent options available. Not everyone has the same side effects. Knock on wood, im proof of that, having nearly none worth mentioning or unmanageable, from either Gleevec, Tasigna at highest dose or Bosulif at highest dose. I know it's much harder to stay calm but it's a necessity. One of the drugs, if not multiple will likely work for you- and even better than Gleevec ever did, I'd bet. Best of luck, this disease will teach you faith, if nothing else.
3/25/2015- Dx'ed by FISH : 85% of cells dual-fusion signals, 7% with tri-fusion signals, WBC 212,000. Started Gleevec 400mg.... Calculated .93 SOKAL

08/17/2015- 14.793 % I.S P210 (quest)
10/15/2015- 3.313 % I.S (quest)
12/23/2015- 1.891 % I.S (quest)
1/07/2016- Tasigna 300mg 2x daily
1/14/2016- 4.414 % I.S P210- City Of Hope lab, mutation negative.
1/26/2016- 1.589 % I.S (quest)
2/22/2016- 1.719 % I.S (quest)
2/29/2016- 1.133 % I.S (quest)
3/03/2016- Tasigna 400mg 2x daily.
3/29/2016- 0.663 % I.S (quest)
4/27/2016- 0.781 % I.S (quest)
5/04/2016- 0.652 % I.S.(quest)
5/24/2016- 0.501 % I.S (quest)
6/28/2016-0.534 % I.S (quest)
7/15/2016-0.881 % I.S (quest)
7/22/2016- Bosulif 500mg
7/28/2016- t315i test- Negative
8/22/2016-0.432 % I.S (quest )
11/15/2016-0.325 % I.S (quest)
2/1/2017- .0445% i.s (genoptix)
5/6/2017- .0968% i.s (genoptix)
5/12/2017- .12 % i.s (quest).
6/4/2017- .083% i.s (quest)
6/11/2017- .0295% i.s (genoptix)
8/5/2017- .0501% i.s (genoptix)
11/6/2017- .0270% i.s (genoptix)

#8 carrie

carrie

    Advanced Member

  • Members
  • PipPipPip
  • 72 posts
  • LocationShow Low, Arizona

Posted 13 July 2017 - 09:44 AM

Thatguy,

I did do an increase to 600 and 800 at one point early on. It didn't change much. So my onc put me back to 400, and yes most all of the 10 years was on 400. I just need to be able to continue working as a teacher. I need the income and the insurance. I just pray that the side effects are not so bad that I can't work.I hope I am like you with little to no side effects.


Diagnosed   2007

On Gleevec for 10 years

Results from 2007-2012 not shown below

International Scale from 2012 until now

Never went to 0

0.166

0.038

1.155

0.789

0.104

0.099

0.701

1.986

1.063

1.799

2.817

1.832

3.449

1.050

1.438

3.376

3.370

3.370

2.580

8.990

4.250

6.176

14.109   Changing to Tasigna 7/7/17

 

7/28/17  800 mgs Tasigna

10/5/17  600 mgs Tasigna (Lots of bad side effects)

10/16/2017    PCR down to 0.141  

1/15/18          PCR down to  0.066   Dose reduction again. Now 400 mgs daily.


#9 cmljax

cmljax

    Advanced Member

  • Members
  • PipPipPip
  • 115 posts

Posted 13 July 2017 - 09:54 AM

I'm hoping and praying for you too Carrie


Dx 9/26/16 WBC 28800; platelets 749; FISH 97% PCR 43%

Tasigna 600MG per day

October 2016                     PCR 22% IS

November 2016                 PCR 5.8% IS

December 2016                 PCR 0.1% IS  MMR!!

March 10, 2017                 PCR 0.006% IS  MR 4.22

Tasigna 450MG per day

April 5, 2017                      PCR <.003% IS

June 5, 2017                     PCR <.003% IS (dose reduction validated!!!)

Tasigna 300MG per day starting June 15, 2017

6-day drug break starting June 20, 2017 due to multiple AE's

July 24, 2017                     PCR <.003% IS

September 18, 2017          Negative, AKA PCRU

Tasigna 150mg per day starting 9/18/17

October 30, 2017               Negative

December 11, 2017           Negative


#10 carrie

carrie

    Advanced Member

  • Members
  • PipPipPip
  • 72 posts
  • LocationShow Low, Arizona

Posted 29 July 2017 - 08:15 PM

Thanks CMLJAX. Just took my third dose of Tasigna (200 morning and 200 night). So far ok, but I know it is early.


Diagnosed   2007

On Gleevec for 10 years

Results from 2007-2012 not shown below

International Scale from 2012 until now

Never went to 0

0.166

0.038

1.155

0.789

0.104

0.099

0.701

1.986

1.063

1.799

2.817

1.832

3.449

1.050

1.438

3.376

3.370

3.370

2.580

8.990

4.250

6.176

14.109   Changing to Tasigna 7/7/17

 

7/28/17  800 mgs Tasigna

10/5/17  600 mgs Tasigna (Lots of bad side effects)

10/16/2017    PCR down to 0.141  

1/15/18          PCR down to  0.066   Dose reduction again. Now 400 mgs daily.


#11 Trey

Trey

    Advanced Member

  • PS Beta Group
  • PipPipPip
  • 1,705 posts
  • LocationSan Antonio, Texas

Posted 30 July 2017 - 08:52 AM

Carrie,

 

Given that you responded to Gleevec for so long, and the way you responded with a long plateau, the probability of responding well to another drug is very high.  You should be able to manage the side effects but the initial 3 months may be a period of getting used to the new drug.



#12 carrie

carrie

    Advanced Member

  • Members
  • PipPipPip
  • 72 posts
  • LocationShow Low, Arizona

Posted 30 July 2017 - 10:44 AM

Thanks Trey...that is good news. I am hoping and believing that Tasigna will do the trick.


Diagnosed   2007

On Gleevec for 10 years

Results from 2007-2012 not shown below

International Scale from 2012 until now

Never went to 0

0.166

0.038

1.155

0.789

0.104

0.099

0.701

1.986

1.063

1.799

2.817

1.832

3.449

1.050

1.438

3.376

3.370

3.370

2.580

8.990

4.250

6.176

14.109   Changing to Tasigna 7/7/17

 

7/28/17  800 mgs Tasigna

10/5/17  600 mgs Tasigna (Lots of bad side effects)

10/16/2017    PCR down to 0.141  

1/15/18          PCR down to  0.066   Dose reduction again. Now 400 mgs daily.


#13 carrie

carrie

    Advanced Member

  • Members
  • PipPipPip
  • 72 posts
  • LocationShow Low, Arizona

Posted 28 August 2017 - 07:16 PM

Yep....one month on Tasigna and I have so many side effects. I am not liking this but it is what it is.

I hope after 3 months the side effects lessen. No point in listing them all.....boring.....I just hope it gets better.


Diagnosed   2007

On Gleevec for 10 years

Results from 2007-2012 not shown below

International Scale from 2012 until now

Never went to 0

0.166

0.038

1.155

0.789

0.104

0.099

0.701

1.986

1.063

1.799

2.817

1.832

3.449

1.050

1.438

3.376

3.370

3.370

2.580

8.990

4.250

6.176

14.109   Changing to Tasigna 7/7/17

 

7/28/17  800 mgs Tasigna

10/5/17  600 mgs Tasigna (Lots of bad side effects)

10/16/2017    PCR down to 0.141  

1/15/18          PCR down to  0.066   Dose reduction again. Now 400 mgs daily.


#14 alc999

alc999

    Advanced Member

  • Members
  • PipPipPip
  • 37 posts

Posted 29 August 2017 - 10:20 AM

I switched to Tasigna in April, after a little over 2 years on Gleevec. For me, the side effects lessened considerably after a few months. And my PCR dropped below 0.1 for the first time ever. Hang in there!


01/15: Diagnosed, 195% PCR, 100% FiSH, Began Gleevec 400 mg per day

04/15: 58.1% PCR

08/15: 1.6% PCR, 0% FiSH

11/15: 0.6% PCR

02/16: 0.4% PCR

05/16: 0.1% PCR

09/16: 0.3% PCR, Began Gleevec 600 mg per day

12/16: 0.1% PCR

03/17: 0.2% PCR, Began Tasigna 600 mg per day

07/17: 0.08% PCR


#15 Cliffee

Cliffee

    Member

  • Members
  • PipPip
  • 18 posts

Posted 29 August 2017 - 11:35 AM

For me side effects lessened switching from Gleevec 600 to Tasigna 600.

Gleevec gave me bad swelling around the eyes and muscle cramps, Tasigna slowed hair growth at first and much deeper response.

Now zero side effects. I'm 50 years old and take no other meds so that might be part of it.

Been on it for >3 years.

 

You never know!






1 user(s) are reading this topic

0 members, 1 guests, 0 anonymous users