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Anyone with CML get pregnant?

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Hi

I was recently diagnosed, 6 months ago, at the age of 24. I have been married for just short of 2 years and have a lot of questions about getting pregnant. My oncologist and I have talked about it (once I am stable for over 2 years, I will have to get pulled off the TKIs and closely monitored). The idea is that once I give birth, they will place me on TKIs immediately and I won’t be able to breast feed. 
 

My oncologist doesn’t have any other patients with CML, Female or of child birthing age, so I was hoping to get others perspectives of their journey to motherhood while having CML. What are important things to know, complications experienced, how was it getting back on the medication afterward?

 

Thanks!

arlene 

I know several women who have been able to stop their CML treatment, have their babies (one had twins!) and nurse.

In both cases, they were not "undetected", but instead had relatively low disease and were CCyR (FISH = zero).

What they did with supervision from their doctor (who was the same as mine at the time), is stop therapy and then get monitored monthly for evidence of sudden rise and most importantly, evidence of blast cell growth. As long as their blast cells remained stable or zero, they were able to continue both the pregnancy and post birth feeding. In each case, they lost CCyR and PCR levels rose to around 80%. They nursed for a few months and then resumed TKI therapy. They quickly re-achieved CCyR and in one case became undetected. The real key is blast cell counts*.

(Keep in mind, CML is a slow disease when in chronic phase and can take years to develop into disease you feel (white blood cells skyrocketing, fever and not feeling well). A person will typically have no symptoms and be completely unaware they have CML even after they are 100% bcr-abl (pcr). So when a women stops taking the drug to get pregnant, it's like the disease is starting all over again and can take a long time. This is not true for everyone so close monitoring is essential. Ideally, you start from an "undetected" status or very stable residual disease level (PCR < 0.1%).

(*taking adequate vitamin D3/K2 supplements during pregnancy can help minimize the chance of rapid blast cell expansion - even leukemic blast cells)

Hi Arlene,

CML and fertility is a fairly complex matter for a woman, and while there is guidance for it it will always come down to your unique circumstances so you need to have a doctor who is a CML specialist so they can manage it appropriately. 

To have a good chance of having a child with CML, there are a few things that need to happen. You need to have a very good response to your medication - and you have a strong chance of that happening, most people do respond very well. Ideally, you would hold that response for a decent period of time; 5 years would be ideal but might not be necessary always and the world isn’t ideal. 2 years is a short period to attempt stopping your TKIs - might work, but odds probably not in your favour. The longer / lower your PCR results gives more confidence that if you stopped the TKI your counts wouldn’t rise too quickly. The longer you remain on treatment, the more likely you are to be able to come off the drugs without a fast relapse. Of course you might have two competing time goals here.

So the basic idea is get your CML well managed, come off the drugs and conceive - hopefully quickly - and monitor your PCR results frequently. If they start to rise to a higher than ideal level, interferon-alpha can be given which helps manage CML (though not nearly as well as a TKI). Interferon doesn’t cause problems for the baby so it’s safe.

Once the baby is born, you restart the drugs. Of course sometimes women find their PCR doesn’t rise during pregnancy and they stay off the drugs! This is more common when someone has been on treatment for more than 5 years.

What you really need is a doctor that is an expert in this field and can guide you through this. It sounds like your doctor might not be the person for this if you are their only CML patient. Maybe you could look into shared care? Where do you live (country)?.

Arlene, one more question. Which TKI are you on?

David. 

Hi!

Thank you for the response! I’m currently on Imatinib and live in the USA. 

This information is really helpful, I’ll need to ask my doctor more questions. 
 

-Arlene 

Hi Arlene,

Very briefly recently I had to discontinue imatinib 400mg not because of pregnancy because of the potential conflict with another course of urgent  treatment;my haematologist who is highly experienced took me through the process and reasoning and made the analogy with ceasing for reasons of pregnancy which he said happens quite often with CML patients.

As per the excellent  advice given by Scuba and David the key issues outlined to me were:

-monthly PCR monitoring is absolutely crucial;please remember though that the PCR test takes a few weeks so one is always a bit behind versus other blood scores.

-it does help if ones existing scores are either undetectable or quite low and certainly with a PCR of less than 0.1 and the greater the time period that one has been in molecular remission the better.Studies of those that have discontinued or have stopped in the interests of trying to gain treatment free remission indicate that one has at best a 50 percent chance of holding that remission and not having to go back on to the tki so it would not be unusual to relapse.

-even if one loses the molecular remission one might still hold the haematological remission so that is another reason for monthly tests to see if the white cells score and neutrophils etc are holding up as normal;Scubas point about blasts is relevant as well.

-I was told that if I relapsed very rapidly I would be offered interferon alpha;I have read that the side effects can be like the flu but that the pegulated version is easier to tolerate.I suspect that it has to be given by injection on a regular basis.

-the monthly checks involve examination of the spleen checking all other bloods especially white cells and checking whether there are any symptoms such as night sweats or excessive fatigue.Pregnancy can bring about its own fatigue so that might be a difficult one to consider.

In my case I was off imatinib for 14 weeks and lost the previous molecular remission and now am with  a PCR of 7.0 but haematologically we are fine ;we have resumed imatinib 400mg and if we are slow to regain the molecular remission we would be offered a dose of 600mg which would speed things up.

I am substantially fatigued but that is possibly a partial result of the radiation treatment that I had and not just the re- progression of the CML

I hope that this gives you some information to use when you next see your haema-oncologist to discuss.

Regards

John

Hi Arlene, I was diagnosed a year ago when I was 29, about three weeks before my wedding (and 4 days after finishing graduate school-horrible timing!)

I am one of the only women of childbearing age my doctor has treated even though he has been in the field for a long time. I am nowhere near able to stop TKIs. We’ve been considering adoption but actually cannot adopt from our state’s foster program because of CML because they say both parents must be cancer free for 5 years prior to adopting. 

I am on dasatinib and I found this article https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5115878/#__ffn_sectitle

I definitely won’t try to get pregnant while on dasatinib and I would have been thrilled to adopt as well, but it doesn’t seem like I’ll be able to. I know I am only 30 and there’s still time but the window is closing. 

Hi Keri,

At 30 your window isn’t closing than fast! And CML fertility has moved on quite a lot since that paper.

For you, the most important thing is your PCR ... how are you doing now?

Davd.

Hi Keri,

I was diagnosed 2 years ago at 27 years. I used to feel that my chance of having a child was over but I recently read that if you maintain a deep Molecular Response for 5 years, the chance is pretty high.

Let's keep faith

My PCR is good. After 1 year of treatment on 100mg dasatinib my last was 0.0024% so I then was decreased to 70mg. I had nearly zero side effects on 100mg except for ultra thin hair. 
 

My fertility window might not be closing that fast, but it certainly feels that way with everyone else getting pregnant in my friends group.

Iyadede-yes let’s stay positive!