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CML and pregnant with twins!


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#1 CMcLain

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Posted 11 July 2017 - 02:53 PM

Hi all! I'm looking to connect with others who have been in my shoes. I'm 4 months pregnant with twins; a BIG surprise and shock to our family! Thankfully the babies are both doing very well.
When I stopped taking Sprycel, which was when I found out I was pregnant, my PCR was 0.05. I traveled to MD Anderson today to for labs and my white cell count has gone up from 6.5 to 11.5. Waiting to hear from Dr. Cortes concerning this. My PCR won't be back for a week or so. His nurse told me there are a few different treatment options that don't cross the placenta.
Would love to hear from fellow CML patients regarding this!
Charissa

#2 gerry

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Posted 11 July 2017 - 05:06 PM

Congratulations - have a read of some of jjg's threads, she'll hopefully be along to give some info as well.

#3 Trey

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Posted 11 July 2017 - 06:01 PM

The most recommended options are Interferon-alpha, hydroxyurea (after the first trimester) and leukopheresis.  I would avoid the Hydroxyurea as long as possible since its effects on the fetus are not well understood although presumed by Oncs to be less than TKIs.  The Interferon-alpha will likely intensify morning sickness.  Leukopheresis is the simplest and has fewest side effects but does not attack the CML itself in any way.  Overall the options depend on how well the mother does later during the pregnancy.  It has risks since the mother can lose response quickly in some cases, and you will not know until you get farther along.

 

https://am.asco.org/...yeloid-leukemia

http://ar.iiarjourna...ent/35/1/1.full

 

Italy is conducting a Clinical Trial allowing pregnant women to continue Gleevec:

https://clinicaltria...how/NCT01752062


Edited by Trey, 11 July 2017 - 06:05 PM.


#4 jjg

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Posted 11 July 2017 - 06:25 PM

Hi Charissa,

Congratulations on the twin pregnancy. My sister has twin toddlers and the interaction between them is awesome... and V exhausting.

I was on interferon during pregnancy, it controlled my molecular counts well. We started it about where you are now (wk 16) and it got my PCR below 1 and kept it there. I struggled on interferon, probably more than average, but unlike the TKIs there is an end point. I was also taking the maximum dose I could tolerate because it was very important to us to minimize the risk. Some doctors will be comfortable with higher PCR values and lower doses side effects. Unfortunately there is no standard protocol for treatment during pregnancy and a wide range of approaches. For example at the extremes some are happy to rely on techniques (eg leukopheresis) just to reduce the wbc count and not address the disease as long as it remains in the chronic phase, others will give a TKI after the first or second trimester. Some patients are happy to rely on their doctors opinions. Personally because there is such a wide range of treatment approaches I wanted to understand what was going on and the associated risks. You are seeing an expert doctor and he should explain these to you if you want.

I'm guessing that your nurse was talking about interferon - the molecule is too large to cross the placenta. Our baby did very well while I was on interferon. The only worry was that I didn't eat very well, failed to put on weight and the baby was a bit small. But after lots of scans it was determined she was growing perfectly along the 10th percentile. Turns out she is just small and at 18 months is currently 2nd percentile for height, a little higher for weight as she is very good at eating :-)

There are (at least) 2 interferon drugs used for CML. I was on the recombinant alpha 2a version (intron A) but I would have preferred to be on the pegylated (PEG) version. It's the same drug but the PEG makes the molecule bigger and it hangs around in your body longer (taken once a week verses 5-7 times a week). The PEG version was not available to me on our subsided medication list (PBS in Australia) but if I were to do it again I would consider paying to try the PEG version as it is associated with fewer side effects. If you google interferon and pregnancy you will read that it is not recommended. I questioned all my doctors (& there were a few) about this and nobody was concerned.

I had a planned induction at 38wk+1 which is full term for twins because we wanted a fixed period (5 days) off the interferon before labor. In the end I needed a C-section. I breastfeed for 1 month before restarting the TKI and had a good recovery from the c-section. My PCR was 1.1 when I restarted and it dropped as quickly as when I started this TKI and is currently undected <M4.5.

All the best with your pregnancy, I hope you can be excited about it despite the CML complications.


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


#5 scuba

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Posted 12 July 2017 - 10:35 AM

The one thing about interferon is that those who have taken it prior to taking a TKI have a much higher rate of treatment free remission (TFR) following cessation. It's possible that should CMcLain have to take interferon now to keep her CML in check during her pregnancy, it may also "prep" her body for a successful TFR following pregnancy and she resumes Sprycel. No doubt once she resumes sprycel her PCR levels will once again plummet. Hopefully this next time around, they plummet for good. Of course, not having to take Interferon and avoid the side effects would be ideal.

 

She is almost halfway to term. We're all pulling for her to get those babies all the way.


Diagnosed 11 May 2011 (100% FiSH, 155% PCR)

with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein

 

Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate

6-8 grams Curcumin C3 complex.

 

2015 PCR: < 0.01% (M.D. Anderson scale)

2016 PCR: < 0.01% (M.D. Anderson scale) 

March        2017 PCR:     0.01% (M.D. Anderson scale)

June          2017 PCR:     "undetected"

September 2017 PCR:     "undetected"


#6 trailcml

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Posted 12 July 2017 - 12:23 PM

CMcLain ... as a CML dad with 17-year old boy twins, congratulations! It's a great run, definitely very exhausting & so demanding at times but so well worth it. Hoping for a smooth pregnancy and delivery!

 

Please keep us posted.


Diagnosed Age: 45

Diagnosed Date: Feb-19-2015

Drug/dose: Imatinib 300mg (reduced from 400mg on 1/31/2017)

Drug/dose: Imatinib 200mg (reduced from 300mg on 11/15/2017)

 

0 Month PCR = 20% 

3 Month PCR = 0.3% 

6 Month PCR = 0.03%

9 Month PCR = 0.019%

12 Month PCR = 0.0095%

15 Month PCR = 0.0104%

18 Month PCR = 0.0095%

21 Month PCR = 0.0038%

4/5/2017 PCR = 0.0057%

8/23/2017 PCR = 0.0096%

12/13/2017 PCR = 0.0114%


#7 tiredblood

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Posted 12 July 2017 - 08:27 PM

Mom with CML and 20 year old boy/girl twins here. Twins first, then CML.

Congrats on your pregnancy. I wish you well. BOGO sales are great when you have two little bundles of joy.

#8 mlk210

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Posted 18 July 2017 - 03:27 PM

Mom with CML and 8 year old girl/boy twins here. Same as Tiredblood, twins first, then CML five years later.

 

They are exhausting in those early years, but so much fun, too! Congratulations! 

 

FYI, I delivered at 31.5 weeks, my kids spent 2 weeks in the NICU. They were preemies but you'd never guess that now!


7/2014 Diagnosed,8/14 Started 100mg Sprycel, 9/14 Thyroidectomy (thyroid cancer)

8/2015 Undetectable, 12/15 Plural Effusion (3 wk drug break)

1/2016 Started 70mg Sprycel, 3/16 Plural Effusion (4 wk drug break)

3/16 .014 after a wk w/o meds

4/16 Started 400mg Gleevec

4/16 Undetectable, 7/16 Undetectable, 10/16 Undetectable, 2/17 Undetectable, 5/17 Undetectable, 8/17 Undetectable

 
 

#9 CMcLain

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Posted 18 July 2017 - 05:08 PM

Thank you all for the helpful information and kind words!
I did receive my PCR results last night and unfortunately that number has gone up significantly. Dr. Cortes wants me to see him in one month to check my PCR level and do a FISH test as well. I'll keep you posted!

Charissa

#10 tiredblood

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Posted 22 July 2017 - 03:08 PM

Mom with CML and 8 year old girl/boy twins here. Same as Tiredblood, twins first, then CML five years later.

They are exhausting in those early years, but so much fun, too! Congratulations!

FYI, I delivered at 31.5 weeks, my kids spent 2 weeks in the NICU. They were preemies but you'd never guess that now!

36 weeks here

Sorry to hear your numbers went up. Please keep us posted.

#11 CMcLain

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Posted 22 July 2017 - 07:49 PM

I will visit my Perinatal specialist this Tuesday. Praying the twins are growing and right on track! I'll keep you all posted!




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