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Switch from Gleevec to Tasigna?


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#1 Rapunzel

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Posted 27 December 2010 - 06:28 PM

I was diagnosed with CML on 11/8/09 and had a WBC of 321K.  After CML was confirmed by a BMB, I was put on HydroxyUrea and Allopurinol for 2 days.    On 11/18, I started Gleevec 400 mg and have been on Gleevec ever since (discontinued Gleevec for about 1 week in Dec. 2009 since platelets went very low).  At this time I tolerate Gleevec quite well (apart from the weight gain).

At the 6 month mark, I achieved a 1.5 log reduction and at the 12 month mark I reached a 2.1 log reduction with q-PCR test.  The q-PCR test has continually shown a decrease since my Oncologist started measuring it from 2/2010 (~3 months after I was diagnosed). 

At this time, my Onc says that it would be a good idea to shift to Tasigna becuase I have not reached MMR (a 3-log reduction).  According to the Onc., while I continue to respond well to Gleevec and the 'bad-cells' have been decreasing, at this time I should have been at the 3-log mark.  Does this mean that I am resistant to Gleevec?  My only concern is related to the QT prolongation associated with Tasigna.  Since I have a family history of Heart trouble, I am a little concerned if I should shift to Tasigna or should I continue with Gleevec for some more time?

My research has not shown anything conclusive about the need to reach 3-log reduction in 12 months (Possibly not looking at the right places).  Is there some research that shows that shifting to Tasigna (or Sprycell) is warranted at the 12-month mark if MMR is not achieved?

Trey and others—Please help.



#2 Trey

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Posted 27 December 2010 - 10:08 PM

Your -2 log PCR represents a Complete Cytogenetic Response (CCyR) at 12 months, which is a very acceptable response.  MMR at 12 months is an aggressive goal that many do not reach.  You could easily stick with Gleevec, which is working just fine so far from what you said.  As long as the PCR is decreasing over time, staying with Gleevec is a reasonable strategy.  But if you want to switch to Tasigna, that is not a big deal.  The QT thing has turned out to be a rare issue, and does not impact most people who take it.  You have good choices and can pick any one you want, including sticking with Gleevec.



#3 Rapunzel

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Posted 28 December 2010 - 10:50 AM

Thanks very much Trey!  Takes a load off my chest.

I will be meeting with my onc. in the new year.  I will let you know what I end up with.



#4 Rapunzel

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Posted 31 January 2011 - 10:29 PM

I wanted to give you all an update:

I switched from Gleevac to Tasigna in the first week of Jan. 2011. I wanted to wait a little bit to see how I was progressing and see if there were any side effects.

I will be going for my BCR-ABL test towards the end of Feb. 2011.  I will let you know how that goes.  But for now my blood counts, which I checked 2 weeks into Tasigna, seem stable.  Platelets have dropped a little, but still within normal limits.

The most serious side effect with Tasigna was muscle pain.  It appeared that I had overdone my workout and I had terrible pain in my hands, legs, necks and all over the body.  My Onc. suggested that I should take Tylenol.  However, I did not want to add more drugs into my body and waited it out.  In a week or so, the pain became bearable though it did not subside completely.  However, it is much better now.  I just hope that Tasigna is able to bring me to MMR and keep me there!



#5 Trey

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Posted 01 February 2011 - 10:57 AM

Nice to hear your update.  You should do well on Tasigna.



#6 rebekah

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Posted 21 April 2011 - 10:54 PM

..I just ran across this post and was wondering how you were doing now.. I have been on Tasigna for almost 2 months now after 12 months on Gleevec - side effects getting better or about the same all but this rash, it seems to be getting worse..



#7 sferrazza

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Posted 21 April 2011 - 11:21 PM

Hi,

Just saw your post, I also was on Gleevec for a year and now on Tasigna for 2 months.  I continue to have terrible headaches and have not reached the full dose.  I'm now awake at 12:30am because I want to crawl out of my skin with itching!!!!  UGH does beneldryle help, anybody out there having similar issues or know what can stop this?

Now that I'm on here, I just need to b$#@$ for a minute, I HATE THIS!! I want my old life back!  I'm so F#$%^^%$ tired and can't fall asleep, I had  F%$^%%$ headache all day and now sitting here crying!



#8 Lynne D

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Posted 22 April 2011 - 09:19 PM

I am sorry you feel so bad on Tasigna. I was on Gleevec for  5 years and because of the nasty side effects tried to switch to Tasigna. I tried for 3 months to get through it. I had elevated liver counts, lost my hair, and had such a rash, but I immediately dropped 20 pounds of water weight and had more energy. Benedryl did help me get through the night but my dr was so concerned about the rash she refused to let me continue on it. I was lucky to get 3 months out of her. I kept telling her I wanted a chance for my body to adjust. From what I understand, the rash subsides some and elevated liver count is common just needs to be monitored, but now I am back on Gleevec and immediately gained back the water, fatigue, headache, bone and muscle pain plus NEW side effects. I have a rash now, different than the tasigna one but a rash anyway. My next try is Sprycel and I am getting sick and f-ing tired too. I so hear your pain. Have you tried a dermatologist? I bought special shampoo for my head rash and Sarno cream for my face and the rest of my body. Sarno works good but smells like solarcaine because that's basically what it is. Give it a try along with some Benedryl and see. I wish I had convinced my dr. to let me continue on it. I have friends who overcame the rash and have side effects but got better as they went along. Good luck, and again....I hear you!!!


Lynne Dagata

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"Scar tissue is stronger than regular tissue. Realize the strength, move on" ~~ Henry Rollins


#9 sferrazza

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Posted 22 April 2011 - 10:35 PM

Hi Lynne,

Thanks for responding.  I felt somewhat better today, just the usual headache and tired.  I haven't been to a dermatologist yet, called the PA with my onc and said I could try benedryll.  Did you get headaches while taking tasigna?  I'm supposed to go to the Cleveland headache clinic on Monday and just not sure why when I know that the headaches are from the Tasigna.  I too had the bloating with Gleevec especially around my eyes and other crappy side effects and don't want to go back on it.  I'm hoping that these side effects get better soon. 

Susan



#10 Lynne D

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Posted 23 April 2011 - 12:06 PM

I had such a bad headache it wouldn't break. I don't like to take anymore drugs than I have to but I ended up breaking down and taking 800mg of ibuprofin every 6 hours until the headache broke. Still got headaches but they weren't as intense. Now that I am back on Gleevec I still have headaches. Can't catch a freaking break. I hope you can get used to them too. I was so disappointed to have to "regress" back to Gleevec. Quality of life is pretty sucky on it. Good luck


Lynne Dagata

ldagata65@gmail.com

 

"Scar tissue is stronger than regular tissue. Realize the strength, move on" ~~ Henry Rollins


#11 Rapunzel

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Posted 31 May 2011 - 11:14 AM

Just want to give you guys an update.

I have been on Tasigna since Jan. 2011 and have not had headaches or rashes as some of you have had.  However, I have been very constipated with Tasigna (it was the reverse with Gleevec).  The constipation caused hemorroids/anal fissure which was extremely painful.  After 7 months of relentless pain, I seem to be getting a little better.  Now I use a stool softener, conciously add a significant amount of fiber in my diet, have a lot of fruits, have small meals and try to keep myself mentally calm.  These have helped a little bit.

The only thing missing is exercise and I plan to start on an exercise program soon.  Hope this information helps someone that has had similar symptoms.



#12 jenz

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Posted 28 July 2011 - 07:30 AM

I switched to Tasigna 8 weeks ago and have a few questions for anyone else on Tasigna...

1.) What do you guys drink during the three hour fast?  I have heard some people say you can drink whatever you want for the first 2 hours but only water the last hour.  I know water is always the acceptable answer but I cannot drink only water for six hours of the day.

2.) Did anyone have headaches in the very beginning of starting Tasigna and then they went away but come back periodically? For me the first week of Tasigna the headaches were terrible and fatigue.  Then they went away for 7 weeks and now our back.  I find that I cannot stand the headaches the last few days without taking some kind of Ibuprohen..

3.) Has anyone found anything to help with the fatigue or bone throbbing? I have had the Tasigna fatigue since day one and while it gets better each week some days are still terrible.  Has anyone else experienced this? I did read someones post about trying B12 but then I worry about adding another thing in the mix of Tasigna.  I do not want to that the risk of ruining my great progress on Tasigna...

Thanks, Jen



#13 jjg

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Posted 28 July 2011 - 07:36 PM

Hi Jen,

I'm thinking about B12 too. I noticed (of course too late to ask why) that for my next bloods my hem has added tests for B12 and Folate. I expect this is because my RBCs are a little low in number and a little large in size (MCV > 100). The low in number could easily be the TKI but Mr Google tells me that the larger size could indicate a deficiency in B12 or folate. I'd be quite happy to be low in these because then I might be able to pop a pill and have reduced fatigue. If these things are not low then popping the pill is just peeing money down the drain. Your hem/onc should be able to tell you if B12 is low.

Sorry I can't help with your other questions - I'm still on G - good luck with T!

J


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


#14 Trey

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Posted 28 July 2011 - 07:51 PM

Taking any vitamin or mineral supplement (NOT discussing herbals here) with TKI drugs is fine, but do not take calcium supplements at the same time as the TKI pill since it can inhibit absorption.

Here is a good fact sheet on B12:

http://ods.od.nih.go...ets/vitaminb12/

Note that those who take PPI anti-GERD drugs such as Prilosec, Prevacid, etc can potentially inhibit B12 absorption to some degree since B12 must be broken down from foods by protease, which is inhibited by PPI drugs.  So these folks may want to have their B12 checked.

B12 is one of the vitamins which can be "over-consumed" without causing problems for the body.

Those who like taking extra B12 may also like taking extra folic acid since they are somewhat complementary in function.



#15 rkekm

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Posted 20 October 2011 - 03:43 PM

Hello..

I started on Tasigna 2 months ago after being on Gleevec for 2 years.  For the past 1 1/2 weeks, I have dealt with what I thought was hemorrhoid problems and now wonder if it is an anal fissure.  I have never really had hemorrhoid issues and it is about to kill me.  When it seems to start calming down and making me think it is getting better, I have a BM then it flares up again.  Is this what you experienced?  I am trying to decide what to try or go to a doctor.  Any advice?



#16 Taylor

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Posted 20 October 2011 - 03:46 PM

I've had this problem with what seems to be extreme constipation on the oldest remaining feces in the bowel, the part that first comes out.  I used to have really bad constipation throughout a whole movement, but lately it seems like after the first big push, evertything comes through fine.  It is extremely painful though, and I have had some sort of lingering pain that makes it hard to sit--haven't really checked around for hemmoroids.

I only BM once a day in the morning so maybe it would help if I tried to do two a day.



#17 GerryL

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Posted 20 October 2011 - 06:57 PM

Hi Taylor,

Have you tried adding some fibre into your diet - something like Metamucil every day to help soften up your stools?



#18 jenz

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Posted 20 October 2011 - 09:13 PM

I have fought with constipation on and off since day one of Tasigna.  If I do not get enough fiber and water I am done for and the full fledge constipation sets in.  At a few points I have been forced to try over the counter laxitatives to help elevate my troubles.  I too have had side discomfort, bloating, and sometimes no urge to go have a BM.  It started out terrible with what I thought was hemoroids and then I started eating more healthy, fruits, veggies and around 80 oz of water a day and that corrected things for a while.  But now I am back to taking a fiber supplement once or twice a day and that helps.  I was never the type of person that had a BM everyday but now I try for at least one in fear constipation and hemorids will return. 



#19 Rapunzel

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Posted 22 October 2011 - 12:05 PM

I usually drink only water during this time period.  But then, I have my Tasigna first thing when I wake up and a breakfast in 1 to 1.5 hours and then my Tasigna again in the evening an hour or so before dinner.  I have not had any food related issues with Tasigna.



#20 Rapunzel

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Posted 22 October 2011 - 12:11 PM

Kandee,

Sorry for the delay in responding to you.

Yes my experience was similar.  The first piece is hard and then it is smooth sailing.  BUt it is the first hard piece that causes the fissure/hemorroid.

I had a fissure which was terribly painful.  I would ask the Hemotologist/oncologist first and see what he suggests--the general suggestions for fissures are stool softeners, sitz baths and fiber in diet.  If you cannnot get an appointment with the Onc., then you can try your PCP.  It is best to get professional advice just to rule out other possibilities.






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