Hi Jen and welcome to this forum.
Although as you say we are UK based we are certainly not confined to the UK. This is an online forum for anyone with CML (and/or their family members) no matter where they live. The only restriction is that you will need access via the internet.
I am sorry you have to deal with this diagnosis, especially as you were so recently married and looking forward to starting a family. Life seems very unfair and has a habit of hitting you in the face sometimes just when you think you're moving forward. However, the good (no GREAT) news is that CML patients treated with TKI therapy over the last almost 2 decades, have recently seen a further revolution in understanding not only how CML works but also how TKI therapy can best be used. Recent data coming out of clinical trials show that a proportion of patients can stop therapy and maintain their response. This is called 'treatment free remission' and you will see more and more references to TFR on this and other fora. There is a lot of work going on trying to find out why some, but not others, can maintain their responses without continued daily therapy with TKI anven though evidence of Bcr-Abl may still be found in the marrow.
I will not repeat what others have said here other than to say that you have been given great advice, but I would say that you and your husbands goals just at the moment might be:
a. to try to accept that CML is something you will have to face up to - but together you will find a way to get out of the mists of sorrow and fear that are probably overwhelming you both at this time. We have all been in that place believe me.
b. to talk with your husband about how you really feel and try to get him to tell you about his feelings too. Understandably our loved one's find it very hard (if not impossible) to express how they feel for fear of upsetting us, and they can suffer greatly from keeping their emotions hidden.
d. Keep your focus on reaching your treatment goals as outlined by NCCN guidelines https://www.nccn.org/patients/guidelines/cml/files/assets/basic-html/page-1.html# and/or European Leukaemia Net recommendations for treating CML. Links can be found on our resource page.
e. to try to understand how TKIs work and which tests will be used at different times to measure your response.
f. read our booklet about qPCR testing which can be found on our home page or by scrolling down this page - this qPCR primer for patients contains lots of information about CML and how it 'works'. Once you understand this you will understand a lot more about BCR-ABL1 (the abnormal gene that causes and drives CML) and why it is important to reduce your levels down to the molecular level ..... preferably as low as possible.
e. take time to watch the presentation by Prof. Apperley that David pointed you to. Pregnancy is a big issue for patients of childbearing age - not so much for males on TKI therapy, although there may be issues with fertility, but there is no evidence that there is a rise in the risk of foetal abnormalities caused by sperm exposed to TKIs . Unfortunately this is not the case for women. In early animal testing it was shown that TKIs can have an adverse effect on the foetus, at least in the first trimester (3 months).
However, as others have already said, this does not mean you can never have a successful pregnancy. It just means you may be advised to put your plans on hold for a while... at least until you reach MMR/MR3 (which means that Bcr-Abl levels are stable at, or under, 0.1% ) .
Then you might be able to discuss your options for a 'managed pregnancy' with a couple of options for monitoring your Ph+ white cells and keeping them under control for 10- 12 months or so depending on how quickly you get pregnant.
Some women discover they have CML after they are already pregnant. Depending on the treating clinician (and the stage of the disease) the advice may be to terminate the pregnancy and start therapy immediately. However, some women have not wanted to do that and - again depending on their individual situations - have opted to delay starting TKI therapy and start treatment with either Interferon alpha which in the past was the treatment of choice for most patients for whom transplant was not available or not appropriate.
IFN A is no longer first line therapy because of the success of TKIs - as well as its side effect profile which is quite challenging. However, should you opt for IFN as a way of controlling your CML during pregnancy there is an option of using a better tolerated form called pegylated interferon. If available this could be an option for the duration of the pregnancy with a change to one of the TKIs after the birth. Or you could opt for a procedure called Leukapherisis. This controls the white cell count by taking the peripheral blood from a vein in one arm... passing it through a centrifuge which separates and discards the white cells before pumping back all the other blood cells and plasma etc. back through a vein in your other arm. I think this procedure is done periodically depending on how quickly your white cell count increases.
Other women have waited until they have a stable optimal response to TKI therapy before stopping treatment with the support of their clinician. Of course this strategy needs increased monitoring by PCR with an eye on the white cell count too. But there are many cases worldwide of successful pregnancies and births after a diagnosis of CML so don't lose hope.
Do as much research as you can and talk with your clinician.... it may mean you need a second opinion from another CML clinician with a special interest in fertility and pregnancy.
You do not say where yo live but there is an excellent support organisation for US based CML patients run by Greg Stephens. It is very good and has lots of helpful advice for US patients, including a list of specialist CML clinicians and centres. See here: http://www.nationalcmlsociety.org/living-cml/cml-specialists
I hope this is helpful, and remember you are always welcome to ask for help and support here on this forum - as I said our aim is to help patients find the right support for their needs, no matter where they are based the world.
BTW: why do you need another BMB? Most clinics no longer require you to have this procedure more than once at diagnosis. Is it a requirement of the clinical trial?
Sandy
