You are here

Pregnancy and short term dose increase

Hi All,

its been a very long time since we posted but we of course read the forum and its amazing to see how things have developed and are changing for cml'ers. Its been 5.5 years now since Kitty was diagnosed with CML and in that time we've got over the initial shock, lived abroad in singapore/back to ldn and we're now in Hong Kong (these last two years). Kits has done a number of triathlons and life, well, its pretty good really - so much so that I often forget kitty has cml but then it all comes back into stark reality when you start realising how difficult it is to start a family. We've looked at adoption, but its such a convoluted process wherever you are and it doesn't help work moves us every couple of years plus there's no guarantee they will let us adopt with kittys condition. So reading the posts and speaking to a few ppl we are thinking of the following and really I just wanted to get some ppls opinion on this as I'm the worrier of the two, whereas kits has pretty much made up her mind. Essentially kitty is on 500 mg per day, going into mmr after 8 months past dx. She is currently on a 3.7 log reduction. The consultant has recommended the following course - go on 600 mg daily till the end of march to see if we can get a further log reduction; switch to interferon end of march; use ivf in june to expediate pregnancy and remain on interferon for the duration of the pregnancy.

My main concern is when kits goes back on glivec she doesn't respond as well/develops resistance. Additionally going on 600mg for short duration? Kits wbc is on the lower end of the range already. I would very much appreciate ppls input/comments on this and what you think of the recommendation by our consultant? That's it....cheers all the best

Lorcan (and of course kitty)

Hi Lorcan.... Great to hear from you after so long. Thanks for the update on Kitty. I am so glad that she has responded so well to imatinib. I remember it was such a worrying time for you both when we first met.
3.5 log reduction is pretty deep... not sure why you would need to go any deeper given that she has held such low MR for 5 years?

I will put you in touch with a CML patient who has further information about pregnancy and TKI treatment. As you know it is not recommended that women continue to take imatinib for at least 3 moths before conception and for the duration of pregnancy. However, several woman have successfully managed their disease and gone on with their pregnancies. I know that it is possible to be treated successfully with IFN or by leukopheresis during pregnancy. All the patients I have heard of have regained their prior CCr/MR's with the reintroduction of imatinib after pregnancy. However, I suggest you might also contact CML expert clinicians who are studying fertility issues etc.
I will send you contacts that might be helpful.

Is there a need for IVF? I understand this procedure does not see a great deal of success?

Sandy

Hi Lorcan,

I don't know who Kitty's doctor is but if they do not know much about pregnancies on imatinib you might want to ask them to talk to a specialiste to get a second opinion on the course they are suggesting. I'm sure there are other people on this forum who know their way around CML medics better than me, but I'd suggest Prof Jane Apperley. She did a talk on fertility at one of the CML conferences recently and I've seen her name on research papers about TKIs and pregnancy. If your doc gave her a call I'm sure she'd be happy to chat about Kitty's case and that might put you in a better position to make a final decision.

Best of luck whichever course you take.

Bhiru

Sandy, apprecitate the info! Good to hear ppl have regained their prior cc/mr…the ivf thing, well we have some embryos from the very begining stored and its been suggested that we use those to help with the pregnancy process. It seems that glivec has affected kittys fertility somewhat and if this means less time off glivec then perhaps this is a good option to start with.

Bhiru, kittys doctor is in HK - I don't think he has that much experience so I will certainly send an email to Prof Jane Apperley. Thanks again for this.

Cheers,

Lorcan

Hi Lorcan and Kitty,

I would start by getting several other opinions about getting pregnant at your current stage of CML. Your doctor's plan is interesting but I would question him further on the number of successful pregnancies he has managed on CML patients. I did a quick literature check and didn't find any papers by Dr. Ho on prenancy management with CML patients.

Try writing Dr. Mauro at OHSU and get his opinion of the proposed plan. Dr. Mauro has managed several pregnancies and it would be important to get his opinion.

He can be reached at maurom@ohsu.edu

I hope this helps.

Good luck,

Zavie

Zavie Miller (age 71)
67 Shoreham Avenue
Ottawa, Canada, K2G 3X3
dxd AUG/99
INF OCT/99 to FEB/00, CHF
No meds FEB/00 to JAN/01
Gleevec since MAR/27/01 (400 mg)
CCR SEP/01. #102 in Zero Club
2.8 log reduction Sep/05
3.0 log reduction Jan/06
2.9 log reduction Feb/07
3.6 log reduction Apr/08
3.6 log reduction Sep/08
3.7 log reduction Jan/09
3.8 log reduction May/09
3.8 log reduction Aug/09
4.0 log reduction Dec/09
e-mail: zmiller@...
Tel: 613-726-1117
Fax: 613-482-4801
Cell: 613-282-0204
Yahoo ID: zaviem
Tel in FL: 561-429-5507

Hello Zavie,

Thank you for the advice, we will definitely write to Dr Mauro. I will post to let you know how all it goes.

Cheers

Lorcan

As others have said there are numerous issues here which would warrant talking to a specialist.
Given that you are going to be using existing embryos for the IVF I am surprised they are suggesting a 3 month break before implantation. Glivec has an 18 hour half life and would be pretty well clear of her system in a week so 3 months seems very excessive - unless they are looking at recobvery from fertility issues rather than exposure risks.
Best wishes
Phil

I was diagnoised with CML in 2004 at the age of 27, my recent blood test results show that my CML levels are nearly un-detectable which I am as you can understand absolutely delighted about, I have spoken to my consultant with regards to pregnancy and although this is not recommended in CML patients I have decided to go ahead with it. My partner and I have been trying now for nearly 3 years, to date no confirmed pregnancy result, can anyone help me with regards to the reasons this may be, I have had all tests possible and so has my partner which has shown to come back all ok and we are both fine, I am coming up 33 in the next few months and really would like some advise as to where I go from here..??

IVF is not an option for me as I already have a 12 year old daughter and we do not personally have the money to go down this road.

Your advise will be very much appreciated

Michelle
Oxford

Dear Zavie,
congratulations on your continued reduction in % of BCR/Abl. I just noticed that you have a further deepining of molecular remission to a 4 log reduction for you results in December and I just wanted to mark that good news and send my best wises to both you and Ida.

Sandy

Dear Michelle,
I am sure you will eventually succeed. However... even without the stress of having CML it is not certain that anyone can conceive exactly when they choose to.
I do wish you every success and would suggest that you try some sort of complementary therapy... something like homeopathy (which helped me conceive) or reflexology etc.

How is your CML being controled whilst you are off imatinib?
Sandy

I havent been on here for awhile but have just read your story and dont know if you have read my previous posts. I was dx oct07 and in june09 after 8mth off gleevec i had a beautiful baby girl. I restarted meds in july and in oct 09 i achieved a negative result, never before achieved! I feel great and am doing all the things that i used to do before i was diagnosed. I truly believe that alot of it is psychological and its mind over matter. My little girl has given me something to worry and care about other than me, and i had a good pregnancy with no treatment, staying in remission throughout. Stay positive, sometims things that are simple can be made complicated. God is on our side and i wish you lots of luck