12 replies to this topic

[rickpister]

My wife and I don't have plans to have more children but we've discussed it.  Since I am only about three months into this journey, the immediate focus is on getting better.  So far so good.  My question is what kinds of concerns has everyone heard/read about with Sprycel?  My MD said he is not very comfortable with the information he received from Bristol Myers Squibb about it.

Sorry if this has already been discussed.  I only found this great place recently.

Rick

[HPL]

Rick,

I am currently being treated at Oregon Health and Sciences University, and as many will know that is where Dr. Druker is. My wife is currently 8 weeks and 4 days pregnant with a 'Sprycel baby', with the blessings of our doctor. There was some more stuff to it that I would be happy to e-mail directly, but it's safe to say I had approval from my docs. But you are correct, the documentation says that both Gleevec and Sprycel should not father children. But I have a friend who has a perfectly healthy 1 year Gleevec baby. All this is for guys of course, I know there are different concerns for women. But e-mail me and we can talk if you want.

Hans 

[survivor77]

I was the fourth woman in the world to give birth to an actual "Gleevec Baby"  I made sure my placenta and cord blood and breastmilk went off for research.  I found out that the placenta captured almost all of the medicine and what they saw in the cord blood was next to nothing.  It was not hurting my baby.  But I didn't know.  I went for alll the testing and did one result at a time and one decision at a time.  I just did not want to give birth to a deformed human crushed by gleevec.  I was told there are still a few doctors in the states that can still perform last minute abortions.  so I just went for it.  and whaat do you know.  I gave birth in 25 mins. and she is beautiful and strong.  by looking at her now, you would never think she came out of a mom who was still NOT in remisssion.  Wow.  God does some cool stuff, especially giving life.

[Juno05]

My husband and I just found out we were pregnant. I made it to my ninth week before I lost the baby. My husband has CML and is being treated with Sprycel as well. I saw your story and it gives me hope that maybe we can still have a healthy baby. I was wondering if you would feel comfortable enough to share some information about the concerns or things you were told that could happen.

[HPL]

Hi Juno,

I am so sorry you lost the baby. The one comforting thought may be that from all I heard, it was most likely not to your husband being on Sprycel. I guess miscarriges are more common that we think. But with all that said, it must be hard on you and your husband. But I am sure you will have success in the future.

We have 2 kids already, and while we never thought we'd go for 3, we also didn't want to close that door either. I had been on Sprycel for 3 months, and I wasn't getting any Cytogenetic response (still 17/20), So I looked into the Ariad trial, this was Nov 2009. Part of the trial protocol is that you can't get pregnant on the drug, so in consultation with our doctor I went off Sprycel for 2 weeks prior to starting the Ariad drug, The drug holiday was recommended anyway so that the Sprycel Drug was out of my system before starting Ariad.

We asked our doctor at OHSU and he actually wrote me a note that for medical reasons we wanted to freeze sperm. That helped with the insurance company aspect of it. At the 1 year mark on the trial, I was doing pretty good, 0.0072 at the time, so we decided we wanted to have a 3rd child. Since we already have a 2 and a 4 year old (both boys) I question the sanity of our decision at times.

We went the IVF route, and they put in two eggs, Luckily I guess, 1 egg took and we just had the 12 week sonogram this week, and so far things are still going well. But we did talk to OHSU and also my wife's doctor, to make them aware of the situation. My wife's doctor isn't too concerned about it, and generally the risk is for women per her comment. Anything that can interfere with the growth of the child is of concern.

I was off Sprycel for 2 weeks, but I have also heard that the life cycle of sperm is like 3 months, so that break really didn't do much.

Best wishes, I am sure you'll be just fine and it was unrelated to Sprycel. I know how sensitive we all get on the TKI's, that it's hard to filter out what is TKI related, and what is just life happening.

Regards,

Hans

[hannibellemo]

Juno,

I am so very sorry for your loss!

Pat

[jjg]

Hi Survivor,

It is great that you sent your placenta, cored blood and breast milk off for research. Do you know if your doctors ever wrote up the results in a paper?

In the hopefully not to distant future we will be considering pregnancy. I imagine I'll stop gleevec before trying to conceive but would like to know as much as possible about the effects of gleevec in case my numbers start heading west. From the very little I know about the types of bad outcomes that have been reported I'm guessing that the risks of gleevec would be much less in the 2nd and 3rd trimesters. My hem did say that might be so but doctors like to know things for sure before they say too much.

Congratulations on doing everything you did to give birth to a beautiful child. It must be hard work to raise children while on lifelong treatment.

Josie

[cousineg]

You can obtain information about pregnancy and CML on http://www.cmleukemia.com/cml-and-pregnancy.html

[survivor77]

I am so sorry i didn't get back to you.  I'm a single mom having a very good time.

I was not on Sprycel during my pregnancy, only 400mg of gleevec. I did get test results back from the doctor and he said the placenta captured almost all of the medicine and the levels found in the cord blood were so small, they did no harm.

The best advice I can give is to pray and give it over to God and find the direction you are guided in.

Good luck

[jessica19]

HPL & Rick,

Are you willing to PM me and share your story? My husband has CML (on Sprycel) and his ONC will not give us his blessing to conceive.

I am very appreciative of any informaiton you can share...

Jessica

[Taylor]

Hmm, I'm sorry to hear that.  I'm not sure why your onc would say this.  There are no problems for men on TKIs except for possible low sperm count.

[jessica19]

Taylor--

How do I learn more about this? Can you point me the right direction? I am appreciative of any information you can provide.