I've been on olaparib for 3.5 years now and doing well on it. Doc always mentions how it's "definitely the drug that's keeping you alive right now."
Yesterday doc says we have to experiment with going off it for 3 months because elevated MCV levels (red blood cells are too big) are causing concern and can turn into Acute Myeloid Leukemia (AML). After 3 months I'll have a bone marrow biopsy to see if going off olaparib is really what caused it.
I'm crushed. I may be approaching that tiny category of patient who gets AML as a side effect of my "life saving" olaparib. Is anyone else here with me? Or heard of anyone else who is?
It feels like there is no happy outcome because staying on olaparib and preventing OC metastisis is the thing that might give me AML, but going off it means high chance of OC coming back for me. How do I emotionally respond to this!?! Argh!
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FlowerRose
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I feel for you, it’s gutting when a med that’s working on the cancer also has side effects that put you at serious risk. I was on a trial of Olaparib with Celerasertib. It worked incredibly well on my cancer but it also produced inflammation in my lung which itself was life threatening.
Realistically I suppose we are a generation pushing the boundaries of survival with new drugs but the downside is that doctors have not yet discovered how to mitigate toxicity.
It sounds like your team are trying to find a way forward for you. I hope it works and you can carry on. Otherwise perhaps immunotherapy or the cancer vaccine will be ready in time to help us? Here’s hoping xx
I'm sorry you had the lung problem. Are you and your lungs back to normal now that you're off, or are the lung issues just a new thing you have to deal with now?
Hi. Are you on Olaparib after frontline or a recurrence? Ive completed my 2 years Olaparib a year ago. I was terrified and wanted to stay on but wasnt possible in UK. However Im doing well and hope you will too if you stop it. I do know a friend who developed the blood disorder after her 2 years on Olaparib which was attributed to the Parp.
I'm on it after frontline treatment and was pretty proud of myself (like we have any control!?) of not having recurred "yet." Now I feel like I'm just letting the flood gates now that I'm off it, and just sit by and bite my nails fingers crossed I don't recur. At two years I thought I'd be taken off, but they liked they I was doing well on it so we stayed on with a Let's see what happens attitude. Well, now we see what happened What happened to your friend, if I may ask? Did they take her off the parp in time for her to reverse the blood disorder? Or is the disorder something new that she just has to live with?
Where are you treated, is it UK too? My friend developed the blood problem after over a year later after the 2 year of Olaparib therapy. But they said it was still because of the Parp. Just that small percentage, very unfortunate.
Hi Flowerrose. I think I may be heading your way. I’ve successfully been taking Rucaparib since 2020 with stable CA125. My skin is itching and prickling like mad. If I knock myself I get a blood blister and my last bloods showed a rise in something, that when I researched it said liver and red blood cell issues. I’m really worried that they’ll take me off it to prevent leukaemia and the cancer will come back. I have my regular bloods in a couple of weeks 🙏🏻🤞🏻 I’ll let you know.
Oh no, sounds like we are very similar indeed. I've been on since 2020 too. Talk about being placed between a rock and a hard place, huh? Go off it to avoid leukemia sounds like an easy decision, but not when you consider that you just feel like you're a moving target for an OC recurrence. Yes, would you let me know what they decide for you, please? Fingers crossed for you.
I have been taking Olaparib for approximately 2 1/2 years. I have started with blood blisters, especially on my face? Also my skin is very dry and itchy. I also have stomach pains most days, just like a period pain, so not life changing, but it worries me all the same! All the very best x
I’m still on it!!! I’d rather have a few side effects than risk coming off the parp. Very grateful to these little tablets. They’re the reason I’m doing The Stand up to Cancer challenge in aid of CRUK.
I agree totally with having some side effects, and still being here to enjoy all the other amazing things in my life x Well done for raising money for such a great charity too! Good luck x
Hi. I sure hope you don’t have a blood cancer. To reassure you on the OC front, I too Olaparib for three years after first recurrence and my doctor took me off it last February because of the risks. So far I’m still ned. Also I had a lot of irregularities in RDW and MCH and all those factors but they went back to normal after three months. Good luck!
Well, that's good news! If they all went back to normal after three months, then that means if was definitely the meds that were causing it and that you're in the clear - as much as we can hope - for blood cancers then, correct? So now at least the fear of leukemia is over for now, right?
I have high MCV and some others, little low platelets (115-140), from the begining of Olaparib treatment (600mg per day). Nobody wants to take me off parp.
My MCV was high from the very start of taking Olaparib and has remained consistently high for all three years! But I think at first they thought it was worth risking the leukemia because going off Olaparib would have been "very bad" for me. Now they're less willing to take that risk, it seems. Humph.
You are right, it could be some kind of risk and benefit account. Now, after 3 years the risk of reccurence is low. So it's the right way. I'm so far 8 months on Olaparib. Hugs😘
I'm so touched that you would ask, thank you! So I've been off Olaparib for 10 months and truth be told, the whole process has been very murky. My MCV levels were high even before starting Olaparib, but they wanted me to go on it anyway bc they thought the benefits of Olaparib would outweigh the risks (my cancer had been very sudden and extremely aggressive and docs wanted to try everything they could.) After 3 years of being on it and seeing I had yet to recur, they started to fine tune my treatment and took me off bc MCV levels elevated for that long could be dangerous. Welp, I went off and MCV levels haven't changed much at all! In fact, doc even said I could go back on if I wanted. Since my energy levels were so much higher and my aches and pains had gone away after going off, I said no thank you. But there's still the mystery of why MCV doesn't go down. I've decided to take my cues from my doc who doesn't seem concerned anymore, but there hasn't been a nice tidy solution. All I can say is that I sit here today with no recurrence! And definitely feel better physically after going off it.
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What happened to your friend, if I may ask? Did they take her off the parp in time for her to reverse the blood disorder? Or is the disorder something new that she just has to live with? 
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