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#1 jjg

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Posted 14 January 2016 - 04:57 AM

For the start of the story see here:

http://community.lls...half-way-there/

Our baby arrived 1 week ago, a little girl - 2.59kg (5pd, 11oz). I came off interferon 5 days before birth was induced at 38 wks (ended up with a c-section after induction failed). I'm currently awaiting pcr results to see how long I can breastfeed before restarting tasigna.

It's been a long road to bring our little one into the world and we are very happy.

Attached Files


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


#2 chrissy778

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Posted 14 January 2016 - 05:28 AM

Congratulations what a beautiful baby. '

Its never to late to live happily ever after/ Do not squander time; for that's the stuff life is made of


#3 r06ue1

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Posted 14 January 2016 - 06:09 AM

Congratulations!  Looks like she is waving at the camera.  :)


08/2015 Initial PCR: 66.392%

12/2015 PCR: 1.573%

03/2016 PCR: 0.153%

06/2016 PCR: 0.070%

09/2016 PCR: 0.052%

12/2016 PCR: 0.036%

03/2017 PCR: 0.029%

06/2017 PCR: 0.028%

09/2017 PCR: 0.025%

12/2017 PCR: 0.018%

 

 

Taking Imatinib 400 mg


#4 soundoff

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Posted 14 January 2016 - 11:30 AM

Congratulations

#5 kat73

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Posted 14 January 2016 - 01:53 PM

OMG she's beautiful!  Such long fingers.  Really, really pretty.


Dx July 2009 on routine physical.  WBC 94.  Started Gleevec 400 mg Sept 2009.  MMR at 2yrs.  Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved.  Kidney issues developed because of Gleevec.  Switched to Sprycel 70 mg in Aug 2011.  Above side effects disappeared or improved.  Have been MR3.5 - 4.5 ever since.  Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017.  After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS.  Pleural effusion returned within a couple of months, same as before (moderate, left side only).  Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved.  At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.


#6 hannibellemo

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Posted 14 January 2016 - 02:01 PM

What a sweetie pie, congratulations!


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>


#7 Frogiegirl

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Posted 14 January 2016 - 03:19 PM

I'm beyond happy for you!!! Im in tears. I hope to be traveling down the road of pregnancy after two more tests! :D Is calling you my HERO to bold???? I think not!


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.


#8 gerry

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Posted 14 January 2016 - 07:11 PM

Congratulations Josie,

Beautiful result, I'll keep my fingers crossed that the CML hangs off long enough to give you the chance to breast feed for a few months. :)



#9 Trey

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Posted 14 January 2016 - 09:09 PM

Very nice.

 

The "however" is you need to restart drug therapy very soon.  From previous posts you have lost a considerable amount of drug response.  Your health is very important to your new baby.  It will be fine on formula. 



#10 mlk210

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Posted 14 January 2016 - 10:33 PM

Congratulations! She's a cutie!

 

To Trey's comment, I was unable to breastfeed with my twins due to early delivery and they are perfect!!


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

 
 

#11 tiredblood

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Posted 14 January 2016 - 10:39 PM

Best news I've heard all day.  Congratulations.  What a beautiful baby!



#12 Gail's

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Posted 15 January 2016 - 12:24 AM

Congratulations! She's very sweet. If there was a best phase of breastfeeding, you're already in it. The early weeks are where antibodies, good gut bacteria and allergy prevention are most effective. If you have to start Tasigna right away, do what will keep you around longest for your baby. She can thrive on formula or if you really want her to have breast milk, call the closest NICU and ask for a reputable breast milk bank. The moms who donate go thru lots of disease testing if it's a good bank. Don't buy it from Craig's list, that's taking chances.
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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