Jump to content


Photo

Looking for those on Ponatinib

CML Ponatinib side effects

  • Please log in to reply
12 replies to this topic

#1 Wilsa22

Wilsa22

    New Member

  • Members
  • Pip
  • 3 posts

Posted 03 October 2015 - 10:11 PM

Hello,

 

I am a 35 year old female dx with CML 13 years ago. I am resistant to tasigna and sprycel and am currently on hydroxurea and waiting on mutation results to start a new drug and wondering if anyone out there is on Ponatinib that I could talk to about their experience with the drug. The side effects and health risks I've read sound very scary and I am concerned about taking it. I would love if anyone out there has taken it and can share their thoughts?

 

Thank you!



#2 Trey

Trey

    Advanced Member

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

Posted 04 October 2015 - 09:52 AM

Welcome.  There are probably about ten folks here on Ponatinib (Iclusig).  Some will respond to you, I'm sure.  In the meantime you can also search on the terms Ponatinib and Iclusig for some information.

 

Also, some info would be helpful, such as whether you were intolerant (side effects) or resistant (didn't work well enough or stopped working).  Did your Onc consider Bosutinib (Bosulif) rather than Ponatinib?  And why Hydroxyurea was chosen to use now.

 

Hope all goes well.



#3 Frogiegirl

Frogiegirl

    Advanced Member

  • Members
  • PipPipPip
  • 259 posts

Posted 04 October 2015 - 09:12 PM

13 years ago? And resistant to tasigna? Forgive me for asking. ..but can you give some info on your cml history like were you a fast responder and reach pcru pretty quick? How long have you been on tasigna? You just perked my intrest because we are similar in age but I was diagnosed about 2 years ago:( I'm also on tasigna

Diagnosed Oct 2013 Started 600mg of Tasigna  on Nov 4th. Lowered dose a few months later to 300mg due to side affects stayed here declining PCR until March 2015 small jump from 0.0072 to 0.0083 scarred my doc into full dose of Tasigna again 600mg(been miserable since) but reached PCRU 06/15/2015(next test) and have been there ever since. Hoping to have another little one. I have the support of my doc to go off anytime, just scared to jump. might go two years PCRU but he said it wont make much of a difference. I just figured I could possibly go into a trial while preggers if I got the two years behind me.

Nov 8th 2017 went off Tasigna

Dec 1st PCRU off TKI

Jan 5th PCR Detected .0625

Feb 1st PCR Detected .7815

Added 8-6 grams Curcumin daily in Feb

March 3rd PCR Detected 3.2646 YIKES!

 stopped trying for baby after February reading. will start new TKI march 16th 2017 (Sprycel)

FYI I'm not done trying for my last little one.


#4 tinman1939

tinman1939

    Advanced Member

  • Members
  • PipPipPip
  • 53 posts
  • LocationRockwall, TX

Posted 07 October 2015 - 03:25 PM

Greetings, Wilsa.

 

I have been on Iclusig - or Ponatinib - for 18 months now (as of today, actually). I started at 30 mg/day and have kept with that dosage. Only side effects are the ones many of us - on any TKI - complain about: mostly tiredness and occasional achiness.

My results have been favorable (see below). I hope to be under 1% at the time of my next PCR test (November 16). We shall see.

 

Feel free to message me with any questions you may have.

 

Best wishes.

 

Wayne

P.S. I was originally diagnosed in November 2006, so I will be "celebrating" my nine-year cancerversary next month : )

 

(Started Iclusig, or Ponatinib, on April 7, 2014)

Wayne's Progress                         BCR/ABL (IS Scale)

April 2, 2014                                      56.6 %

July 3, 2014                                       16.3 %

Oct. 3, 2014                                       54.9 % - an aberration - thus a quick re-test below

Oct. 17, 2014                                     10.7 %

Nov. 24, 2014                                     12.95 %

Feb. 17, 2015                                     10.85%

April 30, 2015                                       8.37%

Aug. 11, 2015                                       1.46%



#5 Wilsa22

Wilsa22

    New Member

  • Members
  • Pip
  • 3 posts

Posted 14 October 2015 - 10:24 PM

Hi there! So sorry for not responding back, I've been sick the past couple of weeks, been doing much better. I am still on the Hydroxurea waiting for mutation test results to see if qualify for the Ponatinib. Each mutation test takes two weeks and the first two times they said it was a bad sample/inconclusive. So I'm waiting for the third test to come back!

 

Tinman - I'm very excited to find someone that's on it for 18 months and no issues. Do you have the T315I mutation? I was told the success rate of it working is 80% if you have the mutation and 50% if you don't have the mutation but are resistant to other TKIs. What dosage are you taking a day?

 

Frogiegirl - I was on Gleevec first, responded well and reached PCR quickly but had liver toxicity issues so I had to start and stop the medication a lot, so I switched to Tasigna as soon as it came out, and had no side effects or issues with it for 5+ years. I've been in remission with CML for so long, I stopped stressing and thinking much about it and would just take my medicine and go to check ups every 4-6 months or so. At some point over the past few months, I developed a mutation. Neither Tasigna or Sprycel will work. My wbc count will go up 30K a day while I'm on the medication. I've never really had to experience the bad side of CML until now, and it's awful. Brutal bone pain that not even hospital pain meds will help. I caught pneumonia and was in the ICU. It really sucks. The only TKI medication that will work on the mutation is Ponatinib but I've been waiting over a month for my mutation results. My insurance will not cover it without the mutation test results so all they can give me is hydroxurea to lower my wbc count until then. Hopefully, I get the test results soon :)

 

Thanks for your responses. I feel so much better finding someone that the Ponatinib has worked for!



#6 rcase13

rcase13

    Advanced Member

  • Members
  • PipPipPip
  • 523 posts
  • LocationCharlotte, NC

Posted 15 October 2015 - 09:54 AM

I hate how insurance dictates our health choices. I remember my stay in the hospital on hydroxyurea and hope yours is short. I wonder if you would qualify for the ABL001 trials. I think I read it was designed for people that lost response to Tasigna.

Hang in there and keep your spirits up.

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!


#7 Frogiegirl

Frogiegirl

    Advanced Member

  • Members
  • PipPipPip
  • 259 posts

Posted 15 October 2015 - 10:16 AM

Wilsa22 Your situation brings me back to reality. I think I sometimes forget just how serious CML is after you begin to get such a good response. its almost like when it starts to go south you get smacked in the face all over again...like at diagnosis. Can I ask if you have had any little ones since diagnosis....that's the choice I am currently being faced with. I had two boys prior to diagnosis but am anxious to have one more. I've always been one to push the envelope or take a chance....but I'm hesitant on this one....a little. I'm so glad there are now more options since gleevic. I'm hoping they keep coming out with more. I'm still confused on the mutation thing, do those sometimes eventually go away on their own? have you ever gone a long period of time without a TKI? or just small breaks? You are amazing! just thought you should know ;) 


Diagnosed Oct 2013 Started 600mg of Tasigna  on Nov 4th. Lowered dose a few months later to 300mg due to side affects stayed here declining PCR until March 2015 small jump from 0.0072 to 0.0083 scarred my doc into full dose of Tasigna again 600mg(been miserable since) but reached PCRU 06/15/2015(next test) and have been there ever since. Hoping to have another little one. I have the support of my doc to go off anytime, just scared to jump. might go two years PCRU but he said it wont make much of a difference. I just figured I could possibly go into a trial while preggers if I got the two years behind me.

Nov 8th 2017 went off Tasigna

Dec 1st PCRU off TKI

Jan 5th PCR Detected .0625

Feb 1st PCR Detected .7815

Added 8-6 grams Curcumin daily in Feb

March 3rd PCR Detected 3.2646 YIKES!

 stopped trying for baby after February reading. will start new TKI march 16th 2017 (Sprycel)

FYI I'm not done trying for my last little one.


#8 tinman1939

tinman1939

    Advanced Member

  • Members
  • PipPipPip
  • 53 posts
  • LocationRockwall, TX

Posted 15 October 2015 - 04:45 PM

Wilsa22 -

I take 30 mg/day of Ponatinib (usually near bed time). I do not have any mutations. I was, however, intolerant of other TKIs, mostly for an issue I now have under control. So, if need be, I could go back to one of them (i.e., Tasigna), but am doing well enough on Ponatinib that my oncologist at Baylor doesn't want to rock the boat. Full steam ahead, he says (maybe he should have been a ship captain).And, no problem with insurance coverage - even in the absence of mutations. Best wishes,

TinMan1939 (what a year for movies)



#9 Gail's

Gail's

    Advanced Member

  • Members
  • PipPipPip
  • 634 posts

Posted 17 October 2015 - 04:04 PM

Frogiegirl, I think you should just go for your 3rd baby since you have support from your oncologist to do so. Choose life, then don't look back at the "what ifs." Just enjoy your new baby and know there are treatments to enable you to see him/her grow up!
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

#10 Wilsa22

Wilsa22

    New Member

  • Members
  • Pip
  • 3 posts

Posted 20 October 2015 - 12:43 AM

I got my mutation test results and it was negative, but also did a sensitivity test and I was resistant to gleevec, tasigna, sprycel, all of them except Ponatinib showed some activity. Even tested my blood with the new ABL001 drug and it didn't work (It only works on mutation). Dr Druker said the CML wants to survive so if you cut off one pathway, sometimes it finds another pathway. If I had the mutation I wold have more drug options. I should start Ponatinib next week. I was told 50% chance it might work. Otherwise, all I have left is a transplant.

I was super positive sprycel would work, and positive tasigna would work. I'd like to be positive again with Ponatinib but I think I've run out of positivity, and I don't want to be let down if it doesn't. But then my family says my negativity can impact its ability to work...so maybe I should try to be positive. I'm getting a lot of anxiety over it.

Frogiegirl - thanks for your supportt! I don't have little ones, but if I get through this and don't need a transplant, I definitely want to try. From everything I've heard, it shouldn't be a problem for you having a third as long as you have a good remission. And I wouldn't worry what happened to me will happen to you, I think I am an anomaly. Most do very well on Tasigna.

#11 Frogiegirl

Frogiegirl

    Advanced Member

  • Members
  • PipPipPip
  • 259 posts

Posted 20 October 2015 - 07:20 AM

Wilsa22 your family is right. ...although staying positive can prove to be challenging sometimes. you know that old saying "easier said then done". I allow myself to have that breakdown(trust me it's notpretty..tears,snot,unidentifiable words and everything!)Then I put on my big girl pants (which are getting a little small) and kiss my boys;) you ARE amazing! don't let anyone especially yourself tell you otherwise! please keep us updated. HUGS!

Diagnosed Oct 2013 Started 600mg of Tasigna  on Nov 4th. Lowered dose a few months later to 300mg due to side affects stayed here declining PCR until March 2015 small jump from 0.0072 to 0.0083 scarred my doc into full dose of Tasigna again 600mg(been miserable since) but reached PCRU 06/15/2015(next test) and have been there ever since. Hoping to have another little one. I have the support of my doc to go off anytime, just scared to jump. might go two years PCRU but he said it wont make much of a difference. I just figured I could possibly go into a trial while preggers if I got the two years behind me.

Nov 8th 2017 went off Tasigna

Dec 1st PCRU off TKI

Jan 5th PCR Detected .0625

Feb 1st PCR Detected .7815

Added 8-6 grams Curcumin daily in Feb

March 3rd PCR Detected 3.2646 YIKES!

 stopped trying for baby after February reading. will start new TKI march 16th 2017 (Sprycel)

FYI I'm not done trying for my last little one.


#12 holygeez8

holygeez8

    New Member

  • Members
  • Pip
  • 4 posts

Posted 06 November 2015 - 11:34 PM

Wilsa,

I have been on ponatinib since Dec 2012. I was in the clinical trial for it. I couldn't take enough Sprycel for it to work. I achieved PCRU in less than 2 months on Ponatinib. I went up to .5 in the next test and have gradually worked my way down to PCRU again, 3 months ago. I took another test today, so we will see what is happening next week. I have no known mutations.

#13 kat73

kat73

    Advanced Member

  • Members
  • PipPipPip
  • 884 posts
  • LocationWashington, DC area

Posted 09 November 2015 - 11:03 AM

Wilsa22, how are you doing?  How do you feel after a few weeks on Ponatanib?  Have they retested yet?  Pulling for you!


Dx July 2009 on routine physical.  WBC 94.  Started Gleevec 400 mg Sept 2009.  MMR at 2yrs.  Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved.  Kidney issues developed because of Gleevec.  Switched to Sprycel 70 mg in Aug 2011.  Above side effects disappeared or improved.  Have been MR3.5 - 4.5 ever since.  Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017.  After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS.  Pleural effusion returned within a couple of months, same as before (moderate, left side only).  Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved.  At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.






1 user(s) are reading this topic

0 members, 1 guests, 0 anonymous users