20 replies to this topic

[Chelsi_H]

I was just diagnosed with CML during my first pregnancy visit to my ob. After doing typical blood work for the pregnancy it showed high white blood cell count! I am now 18 weeks pregnant and trying to cope without treatment until we can safely deliver the baby. Anyone have any advice on how to live with CML for 4-5 more months without treatment?

[gerry]

Only thing you can do is make sure the CML is monitored. Have they talked about putting you on interferon if it shows up?

[Chelsi_H]

We are monitoring my levels very closely. They have discussed it, but my team of doctors want to use that as a last ditch effort. They don't like the side effects and say that it does not have a good success rate.

[thatguy]

Congratulations on the little one! What was your white blood cell count and blast cell count?

[Trey]

A lot depends on the stage and condition of the CML at diagnosis.  If you could provide WBC, blast count, basophil (BAS), whether your spleen was very enlarged, and any comments made on your Bone Marrow Biopsy those items would enable better comments back to you.

[gerry]

We are monitoring my levels very closely. They have discussed it, but my team of doctors want to use that as a last ditch effort. They don't like the side effects and say that it does not have a good success rate.

If you do a search on interferon and author jjg - you'll find Josie's story. She has had a lovely baby girl. :-)

[jjg]

Hi Chelsi,

Congratulations on your pregnancy but sorry to hear about your dx.

We had a planned pregnancy 5 years after dx so started it with very low levels of disease. I started interferon alpha 2B at 16 weeks when my PCR was about 7% (from memory) and my white cell count had just started rising. The side effects were difficult but after a lot of consultations we had decided before trying for the pregnancy that we would use interferon to minimize the risks of disease progression. We were quite conservative on trying to minimize this risk as staying in chronic phase is the most important thing for both you and your baby.

The interferon doesn't cross the placenta (too large a molecule). What do your doctors mean by not having a good success rate? Interferon doesn't have a great 5 year survival but you only need it to work for a few months. I've been on it twice - 12 wks (unsuccessful pregnancy attempt) and 22 wks and responded well both times.

Another option is once you get to the 3rd trimester is to start a TKI, probably glivec. The main risks to the baby from the TKIs are around organ development and therefore mainly in the first trimester.

Some doctors do recommend to just monitor. We decided not to do this but we had years to consult multiple doctors and make our decision. It's a lot for you to process on top of the dx.

Best wishes

[Chelsi_H]

Thanks everyone for your insight! I have so much to learn. At my first lab work my WBC was at 120. The second time was down to 89 which could have been due to different labs. That was April 4th, my levels have now creeped up to 104. None of the doctors have mentioned blast count. I do have all my labs....what would I need to look at? My iron was low so I have started a series of iron infusions. I was thinking that would be a miracle treatment to make me feel better fast...I was wrong on that. So far they have made me miserable for a day or two after and causing my veins to burn!

[survenant]

See also  this link Chronic Myeloid Leukemia (CML) and pregnancy

[Trey]

Your CML is at levels where most are diagnosed.  It is a near certainty that you will not be able to make it through the pregnancy without treatment, and trying to do so could be hazardous to you.  The CML can advance and become difficult to treat if disease advancement occurs.  So you will likely need Interferon starting at the second trimester, and possibly leukopheresis (a blood thinning process). 

 

http://www.healio.co...-pregnant-women

Edited by Trey, 30 May 2016 - 09:00 AM.

[Chelsi_H]

I see my team of doctors tomorrow and Wednesday. I feel like I am better educated to speak to them this week. Thank you everyone for you insight! This sure is a learning process!

[Gail's]

Trey, the article you gave a link to says in most cases those initially diagnosed during pregnancy usually wait till after pregnancy and breastfeeding to start treatment. Then discusses treatments in pregnancy if advanced disease. I guess my point is, in this case of dx at start of pregnancy, close monitoring may be all that's needed. If she stays stable, why risk TKI, interferon, or leukophoresis in pregnancy if not really needed. If it is needed, of course, treat it.

[Trey]

Trey, the article you gave a link to says in most cases those initially diagnosed during pregnancy usually wait till after pregnancy and breastfeeding to start treatment.

 

You may need to read the article again because it absolutely does NOT say that. 

[Gail's]

Trey, read first paragraph under subheading "Managing CML in Pregnancy". Really, I didn't make it up.

[Trey]

I am not a grammar teacher but I will pretend to be just for today.

 

The paragraph you cite is this:

"The use of tyrosine kinase inhibitors in the treatment of chronic myeloid leukemia has led to a transformation of chronic myeloid leukemia from a fatal disease without aggressive intervention to a disease that is a chronic condition, with patients having extended life expectancies."

 

I will assume you are referring to the part which says: "from a fatal disease without aggressive intervention to a disease that is a chronic condition" part.  That means prior to TKI drugs CML was fatal without aggressive chemotherapy and bone marrow transplant (the "aggressive intervention" thingy).  The chemo/BMT is not required if the person takes TKI drugs (which normally turns CML into a "chronic condition") as long as the TKI is taken.  Note that the phrase "the use of TKIs...has led to" precedes the transformation into a chronic condition. 

 

Class is dismissed. 

 

This disease is not something to trifle with.  Your statements would lead someone to believe otherwise, and could result in serious harm to them.  Think about that.

[pegetha]

Excerpt from the article "TKI's and the treatment of CML in pregnant women" (Healio HemOnc Today publication) (reproduced by copy and paste) :

 

"Management of CML during pregnancy

 

In the rare event in which women are newly diagnosed with CML during their pregnancies, observation and close monitoring are an appropriate initial strategy to the management of these patients. For most women with chronic-phase disease, initiation of treatment can be deferred until after delivery and cessation of breast-feeding, if appropriate. Several strategies, including interferon alpha (INF-alpha), hydroxyurea and apheresis, have been suggested for the management of leukocytosis (white blood cell count >100 × 10⁹/L) and/or thrombocytosis (>500 × 10⁹/L) in these patients in which the avoidance of initiation of TKIs is desired."

[Trey]

Initial strategy for first trimester is monitor only, whenever possible.  The issue is what happens next.  If a woman is diagnosed in full blown CML (approximately 100 WBC discussed in the article) such as Chelsi in this post, the probability of making it through pregnancy without treatment is slim.  For the sake of debate, if a woman would have a very low WBC at diagnosis and also be well along into the pregnancy (the point in the quote provided above) and maintain that low WBC during pregnancy (very rare sequence of events) then no treatment would be required.  Very few women can reach full term plus breast-feeding (a couple months) without endangering themselves. 

 

Chelsi got the point, which is all I care about.  She is the one who is at risk.

[Gail's]

Thanks Pegetha, that's the paragraph I was referring to. I was encouraged by the thought that a woman could wait until after delivery and breastfeeding to start treatment. Absolutely close monitoring and treatment when indicated should be done. I guess my point is that we aren't all alike and I lean toward looking for hope rather than the worst case scenario. I think Chelsi's doc's are justified in the management they're giving. A wait and see approach supported by this article.

[jjg]

There are no standard guidelines for pregnancy with CML YET - hopefully one day there will be. The risk of progressing to blast crisis while off treatment is a major concern. I think one of the problems with treatment free remission succeeding for so many is that patients are loosing respect for what uncontrolled CML will do. When somebody has uncontrolled CML and is looking at 4-5 months without treatment it is important that they understand what the worst case scenario is - sure the worse case will not happen to everybody but the risks are real and progression has occurred in women delaying initial treatment for pregnancy. It's fine to look for hope but only after understanding the risks.

Some doctors will recommend interferon treatment even before the PCR is very high

http://www.davidpubl...21969839985.pdf

http://europepmc.org...ct/med/25963696

When we were approaching this situation, both at dx when we considered delaying treatment to try to get pregnant and later on, we decided to do everything everything to maximize the chances of a healthy child growing up with a mother. For me this meant interferon and some really hard side effects (I respond well to interferon but don't tolerate it well) others will have different approaches.

A few days ago we learned that after being back on TKI treatment for 3 months I'm back in MMR (0.035%). My CML was moderately well controlled during pregnancy (PCR peaked at 5.9% and interferon got it back down to 0.72%). It wasn't until I got the MMR result that I realized how much it had been playing on my mind.

[gerry]

Good news on the MMR Josie. :-)