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Tasigna after imatinib, i can not reach Mr 4, please to advised me

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Glivec -07.2013-100%;   12.2013-4,400%;  05.2014-0,540%;  11.2014-0,130%;   05.2015-0,320%(panic);  08.2015-0,090%(super);  12.2015-0,058;

07.2016-0,022%; 12.2016-0,032%;  05.2017-0,025%; Generic Imatinib- 12.2017-0,055%; february 2018 change to Tasigna because i devloped a loud tinitus in the right ear;   06.2018-0.011%(almost there); 12.2018-0,022%(maybe a fluctuation i think); 03.2019-0,034% (its rising).

This its my CML history, i have 36 years, i am feling good with tasigna,the other blood test are great.

I was hoping to reach a safe Mr 4 to make a baby with my wife, butt now i dont know watt to do, i think to change to dasatinib, or to wait to take curcumin with tasigna, or maybe fasting(butt its hard because i am working), i am very upset...

First of all, your CML is under good control and you are doing very well.  The differences in your numbers are statistically insignificant and they are basically stable.  If you wanted to see if you could nudge yourself off a possible plateau, dasatinib would certainly be an option.  It also has the advantage of not requiring fasting, as Tasigna does.  I will let someone else who knows better than I speak to the question of whether or not you are required to reach MR4 before considering children.  It's true that IF you have to interrupt treatment in order to conceive (not sure, do you?) then having a buffer of another zero to the right of the decimal point would be nice.  I guess it depends on how speedy you are!  Not making fun, I assure you.  Also, I have tinnitus too, so I know how it can affect your entire life -  emotions, judgment, rational thinking, stamina, etc.  It PROBABLY has nothing to do with taking a TKI.  Sometimes - often - it just comes to random people for random reasons at a random moment in their lives.  Sorry.

You could consider changing drugs to dasatinib. Drug rotation is gaining traction with positive results.

Nilotinib and imatinib work the same way with Nilotinib providing a tighter binding to the active site of CML cells. Dasatinib works very differently and attacks higher order cells and more clones of CML - it will likely drop your PCR downward - perhaps very significantly. And you won't need high dose dasatnib. If you swith, you should insist on 40 mg or less (I take 20 mg and am PCRU).

Regarding making a baby with your wife. For the male, the issue is sperm motility and amount. There is no impact on the genetics. So if you "practice" making a baby, you may very well succeed and then you have to worry about them when they are teenagers - but I digress.

There is some data on dasatinib and male pregnancy (i.e. - meaning male getting a female pregnant producing healthy offspring):

https://www.ncbi.nlm.nih.gov/pubmed/20473616

Back to babies becoming teenagers - there are times when you just might want to ..... (never mind).

(updated: Grandkids, however are awesome at any age! NOT my problem)

I agree with Scuba’s points. There’s nothing wrong with changing TKI because of quality of life. I was strongly opposed to nilotinib because of the fasting and how it would effect my work schedule. So I took dasatinib instead. There’s no real reason you could not, and it might work better for you anyway.

Regarding babies ... I can only give you the advice that I was given by Prof Jane Apperley. Jane is probably the world’s foremost authority on fertility and CML. I was worried about how TKIs could effect sperm and DNA. There’s not a lot of studies confirming much except in the case of imatinib where it’s now generally considered safe to father (but not mother) a baby. Jane’s advice was to keep on taking dasatinib and “just go for it”. So we did. We ended up with twins, but that was absolutely nothing to do with TKIs.

David.

Thank you four your opinions, i spoke with my doctor today, he disagrees with dasatinib,because he saw one pacient who died of pleural effusion and many sufer horibly(his words) from this side effect, he will discus my case into hospital hematologist council monday, probable he wil rise my dose from 600 mg to 800 mg.

 

That is very unfortunate. Dasatinib (low dose) is likely to work for you. Pleural effusion can be an issue at the old starting dose of 100 mg. Many doctors are using 50 - 70 as a starting dose. Given your PCR and trend up, a 40 mg starting dose is reasonable (20 would be o.k. to try also. I only take 20 mg).

All TKI's have dangerous side effects. Nilotinib, the one you are taking now, has caused 'sudden death' due to heart impact.

https://www.us.tasigna.com/side-effects/safety-side-effects/

Increasing nilotinib dose invites that problem even more. Your doctor is over reacting to one case (assuming that case is real - meaning pleural effusion killed the patient). And I suspect that patient had other co-morbidities which made the pleural effusion lethal (again assuming the pleural effusion killed the patient). Pleural effusion can be managed should it occur usually with drug stopping and lowering dose.

Regardless, your doctor won't prescribe dasatinib. I would visit another doctor for a second opinion. Or you can just continue your current protocol and see if the trend continues upward. Your PCR levels are still very low.

Keep in mind ALL TKI's are toxic. This is why getting off them and/or reducing dose is a goal. But they are life savers in trading one problem for a lesser one. Dose is key.

Definitely get a second opinion, from a CML expert.  If dasatinib were that dangerous I don't think so many of us would be taking it successfully.  And yes, some of us with pleural effusions!  I've had four and I never knew I had any of them - they were found by accident.  I have minimal residual fluid now and am not bothered in the slightest by it.  You do realize, don't you, that this fluid is NOT inside the lung?  I have no noticeable side effects on 20 mg dasatinib and I have been at 0.006% IS for a year, after 8 years on it (after 2 initial years on imatinib).  It's true, others have had a rougher ride.

Kat - Excellent summary from someone who has had pleural effusions and is successfully taking low dose dasatinib with continued great response. Look forward to you reporting your "6" turning into a "0".

I’d get a new doctor if I were you. Nilotinib is tough on the heart, especially at high dose. I’d take pleural effusion over that, any day. Have a search on this site for pleural effusion ... you won’t find much because it’s actually not a massive deal and there are ways to deal with it. 

Of course if dasatinib was really dangerous, we’d know all about it. 

If I’m being kind I’d say your doctor is misinformed. If I’m being cynical, his Novartis sales representative has done a great job. 

David.

Hi, vios. Hope you're fine. First of all: i would like to have another pcr before any change if i were you. Your pcr's still lower than your last pcr on imatinib and maybe the 0.011% was a "fake" result and the 0.034% is just a variation. I would check for adherence and interactions too (food, drugs and supplements). About the change to dasatinib, it's totally possible. pleural effusion is a problem but about 20-25% of patients on standard dose of dasatinib will develop some kind of pleural effusion during treatment. Good luck!!