My wife Suzanne (BRCA2) has been on olaparib since Oct 2017 following third line chemo. Her CA125 at the start was 24, fell to 12 after a year, then down to 9 where it has stayed for almost a year now. I know that many of you can only dream of such a low score.
We saw her consultant yesterday and he mentioned the possibility of ending olaparib therapy after three years. He said that the drug has not been used for long enough to know whether Suzanne is completely cured or whether the cancer will return if she stops taking olaparib. He also mentioned the unseen side effects, being the effect on the bone marrow and the small risk (around 1% I believe) of developing leukemia (although who knows whether this would be caused by three lines of punishing chemotherapy between 2013 and 2017, or by the olaparib).
I know that some of you have been taking olaparib for six years or so and just wondered if the possibility of stopping the treatment has ever been mentioned?
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WoodyB
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Hi I have been on Olaparib trial for 6 years 2 months. The plan is to continue until I reoccur or i decide I no longer wish to participate. My CA125 has remained at below 3 for about 5.5 years. The iriginal trial was taking Olaparib for 2 years and there are ladies who are still NED. I do wonder at yr wifes drs reasoning. I wish you both well xx Kathy xx
If it’s working, surely it’s better to continue....I know it’s a powerful (& fairly new) drug, but it’s “6 of one, half a dozen of the other”. If your wife is well & the bloods are behaving....just my thoughts. I know it’s expensive, but so is chemo. Can you have another conversation with your consultant or even a second opinion? Let us know how you get on.
Many thanks for your reply Linda. I don't think Suzanne's consultant would stop her olaparib without her agreement unless the blood results required a pause. I don't think cost is the issue because (after 3rd line chemo, if you have a faulty BRCA gene), olaparib is provided free of charge by AstraZeneca once the NHS have funded the first 15 months. Suzanne is now at 28 months and doing well.
This is something the oncologist is looking at for me as I am BRCA 2 positive and if my chemo is okay I may well start taking it.I have been reading quite a lot of recent research and I've not come across any information about side effects of leukaemia.
My oncologist seemed very positive about it.
I guess your wife is coping well on the drug if she has been taking it since 2017.Has she had many side effects during that time?
Hi Ann. One of the rare side effects of Olaparib (1%) is leukemia but it is listed. Having said that I have found Olaparib works (so far) and for me the side effects are minimal so I do hope you have the opportunity to try it xx Kathy xx
Hello Ann, I hope that you show a good response to your chemo and you can start olaparib - and that you can do as well as Kathy!
As Kathy says, there is a small risk of leukemia although in my view this could well be due to past chemo rather than the olaparib.
I don't know if this is correct, but it would seem logical that taking olaparib also has a protective effect against some other cancers such as breast cancer and pancreatic cancer.
Suzanne is doing very well on olaparib, thank you. The side effects are minimal compared with chemo, some fatigue, occasional nausea. The side effects were more at the start and lessened after 6 to 8 weeks. I suspect that could be due to the chemo poisoning of your body taking a while to settle when first starting the drug.
An update. The clinic letter arrived today, two days after the clinic appointment - a record, I think!
The consultant says "we do not fully understand the optimal duration of this medication (ie olaparib) and long term adverse effects including haematological change are noted but the true incidence is still uncertain. Furthermore some patients are converted into a cured state with the use of a PARP inhibitor and as a result long term therapy may not be required for some patients. At the present time we plan to continue indefinitely, but we hope that more information regarding these issues will become available through current trials."
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