Jump to content


Photo

Half way there

pregnancy cml

  • Please log in to reply
13 replies to this topic

#1 jjg

jjg

    Advanced Member

  • Members
  • PipPipPip
  • 80 posts

Posted 04 September 2015 - 09:53 PM

It's been a while since I posted on this topic but I'm back talking about pregnancy and finally with some happy news.

As it's been so long some background:

dx Dec 2010 at 37. I'd been with my future husband for 16 months and were just about to start trying for children. Instead we did preservation ivf and got married before I started treatment. I responded well to gleevec (600 and then 800) and came off it as soon as I reached PCRU in early 2012 to try for a pregnancy. We tried to get pregnant, the CML came back quickly, ended up on interferon, suffered on interferon (some unusual side effects + it just sux), went into ovarian failure and basically that was that. I restarted TKIs, this time tasigna and did well, back to PCRU in 2013. I also stayed in ovarian failure/menopause.

But we didn't give up. We found a wonderful egg donor who did a cycle for us in 2014. We looked into surrogacy but as I continued to respond well we eventually went with me. In April (2015) I had been PCRU for 2 years with the exception of two 0.004 readings a year before. We stopped treatment for a two week washout before embyro transfer. The PCR on the day I stopped treatment was my first detected in a year (0.002) but we didn't get that result until after we found out I was pregnant first try. The start date for the pregnancy (the day my cycle would have started had it not been a donor ivf transfer) ended up being the day I stopped the TKI. The next PCR at 4 wks was PCRU but the one at 10 weeks was a big jump to 0.12. I started interferon alpha 2b at 16 weeks at which time my PCR was 4.2. The PCR at 19wks was essentially unchanged at 5.2, so hopefully not going up any more. I started the interferon at a v low dose and am still in the increasing phase. We are aiming for 25 MIU per week (pre-pregnancy surface area was ~ 1.7m^2), which I should get to in about 3 more weeks. I'm doing the injections 5 days on, 2 off. I'm also on clexane due to a previous dvt so I get to give myself 12 injections a week.

I am now 20.5 weeks and the 20wk scan this week showed a perfectly normal little one :wub: . We are still nervous, I had a bleed at 15 wks.

Other than constant nausea (morning sickness) I felt brilliant in the first trimester while off treatment... so much energy! The interferon has been hard and continues to be hard (I'm not working and there are many days when I barely function) but I haven't had any of the scary (neurological) side effects I had last time.

Our due date is early in the new year :)


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 CallMeLucky

CallMeLucky

    Advanced Member

  • Members
  • PipPipPip
  • 216 posts
  • LocationCT

Posted 04 September 2015 - 10:07 PM

Wishing you all the best.
Good luck
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%
 

 


#3 pammartin

pammartin

    Advanced Member

  • Members
  • PipPipPip
  • 631 posts
  • LocationPennsylvania

Posted 04 September 2015 - 10:11 PM

Congratulations!  I am sorry you are having trouble with the nausea, I had that throughout the 9+ months I carried my son, although I did not have the battle you are having with the CML in the equation.  How wonderful your 20 week scan was perfect.  Did they talk to you about your passing of blood at 15 weeks?  I had the same thing at 13 weeks and it was decided my son was growing at a fast rate and the blood was not from the pregnancy but my body adjusting to his size.  When he was born he was 23 inches long and weighed 10.5 lbs.

 

Please keep us posted, it is wonderful to read the life experiences of having babies, reaching goals, and living life with CML.  Not only does it help the ones who are new to the site, it provides the ones who have been here a while a reason to celebrate.

.

Don't worry about those days when you do not feel like functioning, we all have them in one way or another.  Get rest while you can, once that baby arrives we are going to be reading about sleepless nights and diaper piles.  :)    Bless you, thank you for sharing.



#4 Billie Murawski

Billie Murawski

    Advanced Member

  • Members
  • PipPipPip
  • 711 posts
  • LocationErie,Pa

Posted 04 September 2015 - 10:35 PM

jjg, I am so very happy for you, I will pray for you and your baby. What you are going through to have a baby sure does make you an amazing woman. I think it's a good sign that you are now past 20 weeks every day that goes by the baby gets stronger and stronger probably has the same determination as you. Rons daughter had her baby at 24 weeks she weighed 2lb 9oz her lungs were not fully developed so it was a rough time for the family the doctors didn't think she would make it, well she sure did she was in the hospital for about 3 months and when she came home she was a healthy normal baby. I get emotional every time I think about it, just last weekend they came to visit us and she is 9 years old, does very well in school and has beautiful long blond hair.

 Now I'm all excited about your baby,please stay in touch. Oh by the way I babysit for free.  Sincerely Billie



#5 pammartin

pammartin

    Advanced Member

  • Members
  • PipPipPip
  • 631 posts
  • LocationPennsylvania

Posted 04 September 2015 - 10:44 PM

Great story Billie, thanks. 



#6 gerry

gerry

    Advanced Member

  • Members
  • PipPipPip
  • 1,035 posts

Posted 04 September 2015 - 11:41 PM

Congratulation Josie - very happy for you and your husband.

 

Thank you for sharing your pregancy journey with the group, information is an important part of dealing with CML.



#7 hannibellemo

hannibellemo

    Advanced Member

  • Members
  • PipPipPip
  • 728 posts
  • LocationNorth Central Iowa

Posted 05 September 2015 - 08:36 AM

What fantastic news! I'm a fairly new grandmother for the first time so I must admit that any talk of babies makes me a little teary! I wish the very best outcome for you three, Josie!

 

Pam, My youngest son was10 lbs. 8 oz and 23". Funny thing is - he is now 6'5" and my oldest son was only 8 lbs. 5 oz. and 21" and he is 6' 7". Are you tall, too?


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>


#8 Trey

Trey

    Advanced Member

  • PS Beta Group
  • PipPipPip
  • 1,705 posts
  • LocationSan Antonio, Texas

Posted 05 September 2015 - 09:14 AM

You made very good decisions along the way and are now over the hump and all should go well.  Very happy for you.



#9 kat73

kat73

    Advanced Member

  • Members
  • PipPipPip
  • 884 posts
  • LocationWashington, DC area

Posted 05 September 2015 - 03:32 PM

jjg - What a story of perseverence.  Wow, you are strong.  You must be so relieved that all is well at 20 weeks, and be counting the days down, one by one.  You absolutely MUST keep us all apprised!  We will all go nuts if we don't get the rest of the story.  Good luck!


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.


#10 pammartin

pammartin

    Advanced Member

  • Members
  • PipPipPip
  • 631 posts
  • LocationPennsylvania

Posted 05 September 2015 - 09:23 PM

What fantastic news! I'm a fairly new grandmother for the first time so I must admit that any talk of babies makes me a little teary! I wish the very best outcome for you three, Josie!

 

Pam, My youngest son was10 lbs. 8 oz and 23". Funny thing is - he is now 6'5" and my oldest son was only 8 lbs. 5 oz. and 21" and he is 6' 7". Are you tall, too?

I am 5'5" and his dad is 5'10".  That being said I have a brother who is 6'4" and weighs in at about 310.  Nick started off in this world off the charts and stayed that way till he was nearly 16.  Then his body begin to slow down and his peers began to catch up.  He delights in telling me he is taller than I.  I delight in telling him I can still whoop his arse if I put my mind too it.  :D



#11 jjg

jjg

    Advanced Member

  • Members
  • PipPipPip
  • 80 posts

Posted 06 September 2015 - 06:44 AM

Thank you for the support :-)
Will keep you posted

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


#12 Pin

Pin

    Advanced Member

  • Members
  • PipPipPip
  • 202 posts

Posted 06 September 2015 - 11:51 PM

Whoa! Wow! Outstanding!!!!!! :D :D :D

 

This is unbelievably exciting news for you both - I am just so, so pleased to hear this news jjg! :)

 

Please let us know how you go, (if you feel like it of course!) - there are so few of us, it's simply amazing to hear about!

 

Pin :wub: xxxxxx.


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


#13 soundoff

soundoff

    Advanced Member

  • Members
  • PipPipPip
  • 129 posts

Posted 07 September 2015 - 10:09 AM

Congratulations!

#14 mlk210

mlk210

    Advanced Member

  • Members
  • PipPipPip
  • 158 posts
  • LocationIllinois

Posted 08 September 2015 - 11:16 AM

Congratulations! I wish you all the best! You're almost there. :) 


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

 
 





1 user(s) are reading this topic

0 members, 1 guests, 0 anonymous users