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Suzie's successful pregnancy


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#1 kendavies

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Posted 20 August 2013 - 03:29 AM

Our beautiful daughter Suzie was first diagnosed in 2008 at the age of 31. On a clinical trial she responded well at first to high dose Glivec but with bad side effects...mainly oedema, massive fatigue, skin issues, and bone pain.

After a 3-log reduction within 9 months her numbers trended the wrong way and she was switched to Tasigna. Within 6 months she achieved PCRU but with side-effects still persisting.

Her main concern throughout was the restraint on becoming pregnant whilst taking a TKI.

As her parents, we were much more concerned with her maintaining PCRU with the hope of eventual dose reduction to alleviate side effects.

But Suzie persisted and after 2 years PCRU her onc. agreed to cessation of the TKI to enable her to try for a child.

With the the time- factor worry of being off drug, IVF was her only option. Incredibly it worked first time.

Within 3 months her PCR was 5 and rising.

This necessitated self-injected high dose interferon alpha for the duration of her pregnancy.. massive loss of energy but Suzie seemed to cope as she was achieving her dream.

She is now the mother of a magnificent,healthy and cute little boy and she seems never to have been happier despite now being back on Tasigna with its side effects.

Her PCR reached 16 by the time of the birth...very worrying!

But 4 weeks after re-starting Tasigna, PCR is back at 4 and we have all fingers crossed it keeps trending in the right direction.

We are so appreciative of the research which led to the miracle TKI treatment and the opportunity it has created for (almost) normal living.

We follow your inspirational stories closely and gain much support from you all. Particularly from Trey our CML guru.

Ken Davies.



#2 Trey

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Posted 20 August 2013 - 08:23 AM

Tell Suzie we are all very happy for her.  Good to hear the update. 



#3 hannibellemo

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Posted 20 August 2013 - 08:37 AM

What a wonderful outcome, Ken, please give my congratulations to your daughter, Suzie, and her growing family!

Pat


Pat

 

"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>


#4 stephiericks

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Posted 20 August 2013 - 09:38 AM

Very glad to hear this and so fortunate that the first try at IVF was a success!



#5 CindyS

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Posted 20 August 2013 - 06:12 PM

Congratulations!!!



#6 Susan61

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Posted 20 August 2013 - 06:35 PM

Hi Ken:  This is fantastic news.  Congratulations to all of you with this new healthy little baby added to the family. God Bless Suzie for her determination, as I know what those Interferon Injections do to you.  She is a strong lady. and will get back on track.

Susan



#7 Mayra

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Posted 20 August 2013 - 07:08 PM

That is wonderful news!!  Thanks for sharing.



#8 Pin

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Posted 21 August 2013 - 12:59 AM

Thanks so much for sharing Ken, these stories about the issue of pregnancy are so rare.


Diagnosed 9 June 2011, Glivec 400mg June 2011-July 2017, Tasigna 600mg July 2017-present (switched due to intolerable side effects, and desire for future cessation attempt).

Commenced monthly testing when MR4.0 lost during 2012.

 

2017: <0.01, <0.01, 0.005 (200mg Glivec, Adelaide) <0.01, 0.001 (new test sensitivity)

2016: <0.01, <0.01, PCRU, 0.002 (Adelaide)

2015: <0.01, <0.01, <0.01, 0.013

2014: PCRU, <0.01, <0.01, <0.01, <0.01

2013: 0.01, 0.014, 0.016, 0.026, 0.041, <0.01, <0.01 

2012: <0.01, <0.01, 0.013, 0.032, 0.021

2011: 38.00, 12.00, 0.14


#9 CallMeLucky

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Posted 21 August 2013 - 10:03 AM

Her courageousness and perseverance are to be admired.  When her child is old enough to understand he should feel extremely loved.

Thanks for sharing and best of luck....

P.S. now that she is over this hurdle if side effects are that bad, consider trying another TKI.  Nothing says she can't go back to Tasigna but what if Sprycel or Bosulif could be tolerated better?


Date  -  Lab  -  Scale  -  Drug  -  Dosage MG  - PCR
2010/Jul -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 1.2%
2010/Oct -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.25%
2010/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.367%
2011/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.0081%
2011/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2011/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.00084%
2011/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.004%
2012/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Dec -  MSKCC  -  Non-IS  -  Sprycel  - 100 - 0%
2013/Jan -  Quest  -  IS  -  Sprycel  -  50-60-70  - 0%
2013/Mar -  Quest  -  IS  -  Sprycel  -  60-70  - 0%
2013/Apr -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.036%
2013/May -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.046%
2013/Jun -  Genoptix  -  IS  -  Sprycel  - 50 - 0.0239%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0192%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0034%
2013/Oct -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0054%
2014/Jan -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0093%
2014/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.013%
2014/Apr -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0048%
2014/Jul -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2014/Nov -  Genoptix  -  IS  -  Sprycel  - 100 - 0.047%
2014/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0228%
2016/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Dec - Genoptix  -  IS  -  Sprycel  -  100 - 0%
 

 


#10 JMGrad

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Posted 21 August 2013 - 10:39 AM

Congratulations to Suzie!! She is a source of inspiration to me & I'm sure many others who are of childbearing age who question if it can be done.

Thank you for sharing!



#11 nathaliece

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Posted 22 August 2013 - 07:03 AM

Thank you for sharing such wonderful news!  Congratulations!



#12 kendavies

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Posted 28 January 2014 - 02:27 AM

This is by way of update.

Suzie had her third PCR result today, 7 months after recommencing Tasigna.

To our delight and relief she is once again PCRU. Side effects persist but are controllable and Suzie says she can take them in her stride now she has her delightful little 7 month old boy who is much loved and a joyful bundle of smiles.

We gain much happiness from seeing Suzie's excitement at having achieved what she thought had been taken from her with the CML diagnosis 5.5 years ago.

The miracle of TKI's!

Now fingers crossed for the eventual cure.

We wish the very best for each one of this wonderful and inspirational group. We closely follow your progress



#13 Frogiegirl

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Posted 29 January 2014 - 02:26 PM

Ok I will stop crying now so I can post. I too am 31 newly diagnosed and was planning my third and final child when I got the CML news. I am not ready to give up hope that I can complete my family. This is very good news and I hope when I am PCRU for 2 years I too can think of having another baby. My Doctor also told me not to think about it for at least 2 years......such an inspiration this story is, thanks for sharing


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.


#14 kendavies

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Posted 09 March 2015 - 03:48 AM

Frogiegirl, I've been reading your most recent post and your frustration at CML and the TKI denying you the chance of having another child. You responded to the above post in Jan 2014 after I advised what our beautiful daughter Suzie took on to achieve her goal. On Tasigna, she regained PCRU within 7 months after her little boy was born and she  has maintained it since. He is now 21 months old and is the delight of her life, (and ours). She still suffers side effects of oedema, fatigue, bone cramps and morning "blah". But she now says it just doesn't matter because she has a priority - the miracle child she so wanted. Do not give up hope.



#15 pammartin

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Posted 09 March 2015 - 03:47 PM

Congratulations on the birth of the child and the response to TKI.  Thank you for sharing your wonderful story!



#16 Melanie

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Posted 09 March 2015 - 07:40 PM

What great news and inspiration! Congratulations!


Dx - 05/2011; PCR: 15.04; Fish: 87% Slow responder due to pancytopenia. Current - Bosulif - Nov: 2012, Mar 2016 lowered to 300 mg. 07/16 back to 400 mg. Clinical trial drug, Promacta, Feb 2013, for low Platelets.
CyCR - Aug 2014, Positive for 1 chromosome Sep 2015. PCR: 12.77 in Oct, 2012 to 0.04 (MDA) in Mar, 2016. 4/2016 - 0.126 (Local lab (IS); 05/2016 - 0.195 (local); 6/2016 - 0.07 (MDA); 7/2016 - 0.03 (local) 9/13/2016 - 0.16 (MDA); 9/26/2016 - 0.31 (MDA); 11/2016 - 0.012 (local); 01/2017 - 0.24 (MDA); 04/2017 - 0.09 (MDA); Cytogenetics show der(1:7)(q10;p10)7 chromosome mutation. Repeat of Sep 2015. PCR - 6/2017- 0.035 (local); 10/2017- 0.02 (MDA)

#17 Frogiegirl

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Posted 09 March 2015 - 07:57 PM

Kendavies thank you sooo much for the update. Having another little one has been weighing so heavy on me lately....I test next Monday and I'm hoping to be PCRU....I will then start the 2 year count down. I am so greatful for the two I have, but it's hard to push away the feeling that there is one more for our family. I'm so happy your daughter and grandson are doing so well:)

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.


#18 Gail's

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Posted 10 March 2015 - 10:39 PM

Wonderful story you've shared. I'm glad she has responded so well to restarting the TKI. Congratulations!
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




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