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Stopped tasigna, 23 weeks preg. and transcripts rising... questions

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#1 Asmaa


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Posted 27 November 2013 - 03:15 PM

I have a few questions, but first I guess I'll just give a summary of my situation.  I had been on tasigna 400 mg twice daily, then lowered to 300 mg twice daily for a few months, then I found out I was pregnant in July.  Almost exactly 3 years on treatment. Of course I stopped taking the tasigna right away, and at that time my last test was 0.005%, went off meds and 2 months later it went up to 0.012% and last month it was already 2.52%.   My cbc is completely normal, and so are all other tests.  Right now I am on the 'wait and see' protocol and am due for an appointment.  The oncs want to start interferon if progression gets too bad before baby is born and I'm not due until March and I'm 23 weeks pregnant, 17 weeks til my due date. 

Ok, so my question is, does anyone know or have you heard of any other safe treatments for CML during pregnancy, that do not involve as many side effects as interferon? I have heard it is absolutely awful.  And how bad is it okay to let things get?  I mean, I have heard of women not being treated until their wbc was into the 60,000 range and right now mine is normal.  I'm just hoping to be able to finish the pregnancy without any meds, but the doctors don't really offer much advice.  Just thought maybe there is someone out there, or maybe another woman who has been in this situation and can offer some insight.  I appreciate any replies.  Thanks.

p.s. I just had an ultrasound last month and baby looks completely healthy and normal thank God. I stopped taking tasigna when I was 4 weeks pregnant, just in case any of the women on here were wondering. I know there is not a ton of info out there on cml and pregnancy. 

#2 jjg


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Posted 27 November 2013 - 06:38 PM

Congratulations on your pregnancy!!

Here is some info you may not have discovered: http://cml-foundatio...erley-pregnancy

These guys wait until the WBC take off and treat that.

We tried to get pregnant and my PCR (transcripts) took off straight away - the rate at which your transcripts have increased is not unusual. I did start interferon at 24% but that was mainly because I was not yet pregnant and we wanted to try one more cycle (unsuccessful). Given that you have "only" 17wks to go (yes I know it's in no way only) I don't think I'd panic about 2.52% and normal CBC.

I did respond to interferon (PCR dropped a little) and yes it was moderately awful but not completely awful. I managed to work full time on it for 3 months, well full time with quite a few half days sick leave. Interferon is much much worse in the beginning, certainly for me anyway but I think this is true for most. If I had to start it again I would want to start at the lowest possible dose I could inject into myself and ramp up slowly. I disliked the first few weeks so much I'd actually start earlier so that I could introduce it to my body more slowly. Not everybody has a really awful time on interferon and not everybody responds to it. The other thing I'd say about interferon is that unlike tasigna you don't feel the side effects all day everyday. In the beginning most people start injections 3 times a week. You definitely have to do them at night to sleep through the worst of the side effects. I would wake up the next morning feeling slightly deathlike but as the day progressed it would get better. If there was no injection that night the next day would be ok.

Your situation is so borderline - my instinct is that you might make it without treatment but you know you've got to work this out with your doctors. The main risk to you is not having a PCR of 100% or  having a WBC count that gets so high they have to treat it, the risk is that you progress to blast crisis. The bummer is that nobody can tell you exactly how long you have until you progress. It's a good question to ask your doctor - what is the probability I will progress in the next 4-5 months? Then it depends how risk adverse you are and how much you are prepared to suffer (aka interferon) to reduce that risk.

Good luck. Please let us know what you decide and how you go.

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

#3 Asmaa


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Posted 05 December 2013 - 08:28 PM

Thank you so much for your reply. I definitely learned a couple of things from the link you shared, I truly appreciate it. The doctor mentioned there being no proof for the effectiveness of interferon which I found interesting. I have an appointment in 2 weeks so I'll let you know how it goes.  I'm hoping to make it to the end without anything God willing. 

#4 Asmaa


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Posted 27 February 2014 - 05:32 PM

Just wanted to update, in case any other women may experience this situation and want to know how it went for others who have had CML in pregnancy.  I'm now 36 weeks and 2 days pregnant, almost there!  I have made it the entire time without any medication.  My docs wanted to start me on interferon but I refused, because my cbc was still normal and I didn't think it was worth it after the research I did (it doesn't always work anyway).  My bcr-abl was at .15 or 15% in Dec.  and this month it was .09 or 9%.  WBC count is a little elevated at 13,000 but I'm getting checked regularly to monitor everything, and my ob said it may be due to pregnancy and not the leukemia because a little elevation in wbc is normal in pregnancy I guess.

I had a question about my test results though if anyone could offer some insight.  My FISH test was 30% when my bcr-abl came back 15% in Dec., and now in Feb. my FISH test says 50% but my bcr-abl went down some to 9%.   How can I interpret these results?  I'm not sure what it means exactly, FISH got worse, bcr-abl got better?  I've been trying some other treatments, and think that it's helping, but I don't understand why the FISH and bcr-abl don't match.  Thanks in advance for any input. 

#5 hannibellemo


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Posted 27 February 2014 - 06:47 PM

Congratulations! I'm so glad you've done so well and you will be holding your new baby soon!

I'm not sure there really is a way to correlate the PCR and FISH because I was told there was no reason to do a PCR when the FISH was above 0-4% or complete cytogenetic response. The PCR is a very sensitive molecular test and the FISH is a not so sensitive cytogenetic test. The important take away from these numbers that you've shared is that you are no longer in cytogenetic response and you may be losing complete hemotologic response with your elevated WBCs. The good thing as I said before is that you're nearly at your goal of a baby! Others will probably have more technical information for you than I have

Most of us started at over 90% FISH.  If I were you, and I'm not, I know, I would want to get back on a TKI as soon as I could after giving birth allowing a few days for breast feeding if at all possible because that is so important for the baby. I don't know the guidelines for breastfeeding on a TKI but I'd be amazed if it was encouraged.

I was dismayed that your doctors are not listening to you according to your post on another subject. It is more important then ever now that you make them listen. You want to be around for a long time to watch your child grow and have children of his or her own. I agree that the palpatations are probably from the Tasigna, but even if they aren't I wouldn't want to take that chance. I would also request (strongly) a different TKI, perhaps Sprycel.

I wish the very best for you and know that these will be the best, and most tiring, times of your life!  I was just told I'm going to be a grandmother for the first time so I'm looking at it from the other side, too!

All the best,




"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>

#6 Trey


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Posted 28 February 2014 - 09:50 AM

At levels above CCyR (where you are) FISH is more accurate than PCR.  The PCR test has a hard time dealing with higher levels since it is only an estimating process, and higher levels cannot be estimated as accurately by PCR.  So your FISH result would be the one to watch.  Since you are almost through this, there is little reason to do anything until after the delivery.

#7 Frogiegirl


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Posted 01 March 2014 - 10:58 AM

Hi asmaa !!! I am super envious of you right now!! I was just recently diagnosed in oct2013 and we were planning on becoming pregers  after our new house was completed. well......obviously that changed uuugggh. I was wondering, do you already have kids or is this your first? sometimes I feel greedy wanting one more as I do have two beautiful boys, but I always felt like there was one more for us? I am so glad you shared your story. I too am on Tasigna and my doctor said that I cannot even think about becoming pregnant for at least two years? Not sure why 2 years is the golden number but hey if he is willing to work with me(which I hear some doctors are not) then I will listen. I hit CCR in 13 weeks on tasigna, not sure how good that is, but I hear its pretty good? Please keep us updated, I am so glad you didn't go on interferon. That stuff scares me.....but so does everything Also how is your drug break from tasigna? I feel like a dumb blonde on it. I cannot recall things very quick at all. I know what I mean but no one else does. I refrain from any kind of public speaking LOL! Also did your hair thin on Tasigna? get the lovely hair line bumps? Sorry for all the questions??? I just get excited when I find someone else going through the same thing as me I ask questions where I receive treatment and I really feel like I am a huge inconvenience for them. Good luck with the new baby, its so exciting!!! 

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.

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