Pregnancy and cll/sll: My daughter was diagnosed... - CLL Support

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Pregnancy and cll/sll

DPhillips
DPhillips
16 Replies

My daughter was diagnosed in May 2015 at 29 years old. She is currently on watch and wait,being seen NYC every 4 mos and her numbers are steady and the first important year has passed with no real movement in numbers since diagnosis. Her markers are good as well. She is married now for 2 years and starting to think about having a family. Her hematologist and even the second opinion told her to go live her life even saying wait a year and if all is ok having a pregnancy while having cll/ sll would be ok. Her next appointment she plans on bringing up the specifics of what the doctor means regarding a pregnancy. Does anyone know of a young cll/sll patient who has successfully gone through a pregnancy? As her mom I am worried the cll may change. Thanks for any insight.

16 Replies
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Bubnjay1

Hi DPhillips

Its rare for someone so young to be diagnosed, so folks able to respond will be few.

I can only hope with you that a someone able to give their view be forthcoming, but I am inclined to take on board the opinion of the doctor who she sees and who has all her medical information. Locking your post may encourage better response.

Best wishes

Bubnjay1

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Poodle2
Poodle2
in reply to Bubnjay1

Hi Bubnjay,

Hope you are well. Just came across your post? Hope your daughter is well - has she decided to have a baby? Just been

diagnosed and currently 7 months pregnant. Thank you.

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Newdawn
NewdawnAdministrator
in reply to Poodle2

Hi Poodle,

You’re replying to a post that is now 3 yrs old and have replied to the wrong person. It was DPhillips not Bubnjay1 who spoke of their daughter.

DPhillips will receive notification of your enquiry however but I’m not sure if they are still posting. The last response was 5 months ago so possibly.

Regards.

Newdawn

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Poodle2
Poodle2
in reply to Newdawn

Oh sorry - thank you for pointing that out! I didn’t realise...I know it’s an old post, just trying to look for someone in a similar situation to mine...many thanks! I’m not so good with searching on here.

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Newdawn
NewdawnAdministrator
in reply to Poodle2

No worries Poodle. We have had members who have had successful pregnancies and CLL. Hopefully someone will respond but you’d be better starting your own post and locking it to the community.

Regards,

Newdawn

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DPhillips
DPhillips
in reply to Poodle2

Hi Poodle, no worries about using the wrong name. My daughter did indeed have a little girl back in December 2017. My granddaughter is now 19 months old. All is well. So my daughter is almost 34 and she was diagnosed in April 2015 and is still on w & w... The pregnancy went fine. Her WBC did go up a little, but after birth it actually went down to the normal range. It was like the hormones, etc reset her body. Now her numbers are inching back up again, but she is doing fine and our little granddaughter is amazing. I think she wants to have another baby down the line. I know it's scary especially being pregnant and obviously very young as well. Anyone at this young age has to just stay on watch and wait as long as possible as optimistically there is a cure down the road. My daughter had a virus back in January and we were all very scared as it lasted 2 weeks, but she rebounded and we are not even sure it was CLL/SLL related. Hang in and just realize that so many people around you live with chronic illnesses and just go about living the best they can. It comforts me to think that so many people are resilient when they have challenges. It kind of inspires me and I feel less of a "why us" attitude. Just work through the shock of the diagnosis and time will help you adjust to your NEW normal. Concentrate right now on bringing a new healthy baby into the world... Any other questions let me know.

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Poodle2
Poodle2
in reply to DPhillips

Hi DPhillips,

Thank you so much for you lovely positive response - it made me cry with happiness for your daughter and the little one. I’m so happy they are both doing well. I’m 39 and pregnant with my 3rd child (28weeks now) and was told about CLL just a week ago...I’m still in a shock and so is everyone close to me...it’s so much to take in...I also had a nasty chest infection but hopefully I’m on the mend now. I’m meeting with all the specialists next week so focusing on that at the moment. It’s great to know that her WBC levels went down, I’m hoping for the same...how was her labour? Do you remember what her levels of WBC were during the pregnancy? I’m just trying to stay positive...hoping that everyone stays well and healthy. X

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DPhillips
DPhillips
in reply to Poodle2

You are welcome. The highest her WBC count went during pregnancy was around 22K. Then 2 months after birth at her first visit with her oncologist it was like down to 10K and now about 15 again which is really where she has been since diagnosis. Her labor was normal and her pregnancy although classified as high risk due to the CLL/SLL never became a factor. Good luck at your specialist appointments and just hang in and concentrate on bringing your new bundle of joy into the world . The one positive thing about CLL/SLL diagnosis is that time is on your side with processing the information and processing the whole idea of it all. Once again let me know if you have any other questions.

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Poodle2
Poodle2
in reply to DPhillips

Thanks for your response, really appreciate it. X

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Newdawn
NewdawnAdministrator
in reply to DPhillips

Lovely news 😊

Newdawn

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thompsonellen

I was diagnosed after having my child, but I just am sorry your daughter was diagnosed at such a young age. Like bubnjay1 says, do what the doctors advise. If they said it's fine to have a baby, it were me, I wouldn't take more than that year to start trying. Also keep in mind that there are a lot of advances. I believe there will be a cure in her lifetime.

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KellyM

I just got some info from a lady on a CLL facebook page. She went through two pregnancies after her CLL diagnosis and had no complications other than slightly low platelets after delivery (which can happen to anyone).

Of course everyone is different and your daughter should discuss everything with her doctors.

I see Dr. Byrd at OSU and he acted like if I wanted to have another child that it wouldn't be an issue; however, I'm 39 now and that's a whole different issue!

I wish the best for your daughter and family!

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Khoovs

I was recently diagnosed with CLL at age 41 at 5 months pregnant through routine pregnancy bloodwork. I am still trying to get out of my shock at the diagnosis but everything (besides my WBC counts being slightly elevated) had been normal with the pregnancy. My doctor has told me not to worry and stress over the diagnosis so that is what I am trying to do. I also have to see a high risk doctor at my hospital to consult during the delivery since this is an unusual diagnosis for my age. I understand the fear though since CLL seems so unpredictable - but I guess then so is life (at least that is how I am feeling at the moment). If her doctors give the go ahead, and it is something she wants, I think she should do it. I don't think she'll ever regret having a child but she may regret not having one.

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Poodle2
Poodle2
in reply to Khoovs

Hi Khoovs,

I’m in a similar situation now. Can you tell me how everything went for you? Are you still on w&w? It’s a huge shock...

Thank you!xx

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DisneyMom

I was technically only diagnosed about a month or so ago, age 39, but looking at past bloodwork, my CLL started when I was pregnant with my son, 2 1/2 years ago. First bloodwork with him was fine with the exception of elevated WBC, 3 months later, lymphcytes and smudge cells. My son is perfectly healthy and I'm on w&w and hope to be for a very long time.

Best of luck to you!

Carol 🇨🇦

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Poodle2
Poodle2
in reply to DisneyMom

Hi DisneyMom,

It seems we have a few things in common :-) it’s reassuring to know that people carried healthy babies and their labour was normal.

It’s just hard when you find out while pregnant, your hormones are all over the place and instead of pure happiness you feel a bit let down...

My WBC went up really quickly - 18 when 3 months pregnant and then 42 at 6 months. That’s what triggered them investigating. I was also fighting an URI for the past month or so and ended up on antibiotics so I’m just hoping that played a role in the high WBC count too.

My spleen and liver are not enlarged at the moment and my lymph nodes are from 0.7cm to 1.2cm (in my neck / again I’m hoping this is partially also because of the infection).

I’m meeting all the specialists this coming week on Thursday.

It’s just the uncertainty of it all that’s brings in the unsettling feeling. I want to be here for my amazing children and my wonderful husband...

Thanks for everyone’s responses.

XXX

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