Olaparib query

[Hairlessbeauty]

Hello all and today expecially ladies on Olaparib.

Sorry for writing but I just needed to.

2 weeks ago on Monday I got high fever and horrible muscle and headache. I was absolutely sure that it was flu and I went to bed straight away. On Tuesday I didn't feel any better and couldn't keep temp on the control. Was 39.6. On Wednesday I rang to my nurse and she ask me to go to E&R immediately. They gave me separate room, tested for sepsis, viral and bacterial infections. The blood wasn't great. White cells were just a little under 1 (0.9), but doctor said it was "dangerous low and I could die". They only improved after 3 days in hospital after taking antibiotics and liquids.

I am still pretty sure it was a flu but my oncologist thinks it was because olaparib because the all tests they did came negative. So I left hospital last Wednesday and I had appointment today. The bloods were fine, white cells 2,6, platelets and everything else were fine as well. But my doctor said she needs to cut my olaparib dose for half as this is what protocol says and I will never come back to higher dose. So I was on 600mg (start dose is 800mg) and now I am on 300mg.

Additionally I had a ct scan last week as well. Is described as stable but... Ct scan in June showed 3 changes that were still there after second line chemo. Those 3 nodules grew since June's scan. They only grew 2 milimiters each and all of them smaller than 1cm. Ca125 last week was 8. Doctor couldn't say are those are active cancer cells or some more scaring or lisions.

I am so so devastated. It's not something that I was expecting to hear today. I'm worried that maybe cancer is there but is growing slowly because of olaparib. Now with the much smaller dose of olaparib cancer can start to grow faster.

I am worried that olaparib maybe stops working for me. If I will get again some Infection like last time...then that will be my finish with olaparib. And if they are active cancer cells in my body even when I'm taking olaparib only 6 months now what's gonna happen if I stop to take it at all. It looks that my cancer doesn't waste his time and will hit me hardly again.

I am not ready for second recurrence, I am not ready for another chemo. The second line chemo was so so tough.

Don't know what to think, don't know what to do. I think I feel worse last few days but I thought this is because the stress from hospital. Today since I'm back from hospital my abdomen is killing me, not sure is it a stress or something is going on...

Did any of you had similar infection? Or white cells problem? Or olaparib dose reduced?

I'm so sorry for such a long message, I'm just freaking out

Hugs, Zaneta, xx

[January-2016-UK]

Hello Zaneta, I don’t know anything about olaparib but I’m sure your oncologist knows the protocol to follow if it’s thiught olaparib caused your problems. I wonder if it might be possible to seek a second opinion as to whether you did have the flu?

It’s a lot to think about and to worry about so you are probably right that the stress is causing your abdomen problems. I’m only guessing but I don’t suppose three modules less than 1 cm are going to cause symptoms.

Try and relax if you can, easier said than done I know.

All the best

Helen

[SarahsJourney]

Hi Zaneta,

I'm only recently taking Olaparib, started 18/9/17 so just about 6 weeks in but currently on the max dose of 800mg a day. So far I've had no major side effects, yes, I'm tired, mouth sore etc but accept that it's early days so may suffer more as time goes on. It's funny as I've had some twinges last night & today in my stomach that I've not had before so am keeping an eye on them.

How scary for you to be told you might die! I'm not sure if being that blunt was warranted or if the news it was being treated as serious could have been delivered in a better way. If I'm honest my fear is this situation seems to change in an instant & the next thing you know you find yourself in a position like this.

I'm glad to hear you are currently feeling better. Can't really help with any constructive advice other than sending you a hug, & to say listen to your instincts. If at any point it feels more serious, call someone ❤️❤️❤️

[Tesla_7US]

Zaneta, Yes, this is very, very scary. Been there, felt that myself. For your peace of mind and to advocate for yourself in the most powerful way, get a second opinion as soon as you can. I had nodes showing on my CT scan after chemo finished. Doc told me they were "most likely clumps of dead cells" and he sees it frequently. Luckily I had my colostomy reversed and the doc could do a "second look". He took 6 biopsies from the "suspected nodes" and all turned out to be dead cancer cells with no sign of malignancy. Your situation doesn't sound right. Your illness can be from other things. Stress makes your body secrete cortisol and stomach acid which will give you a terrible stomach ache. A virtual hug to you, and do not let fear take over.

[Hidden]

Hi Zaneta

So sorry to hear you're worried and confused - any sign of a potential recurrence is a huge thing.

I've had four infections that required hospitalisation since initial diagnosis in 2015 and one bout of sepsis. At the time of sepsis, my neutrophils (white blood cells ) were 0.02 but climbed back up after treatment with antibiotics and daily injections to boost cells. But it was only few days later I was told how serious the situation was with neutrophils that low, I think I would have been totally freaked if I had been told it at the time!

I know this is easier said than done, but try not to worry - your scan show stable and your CA125 is low - and I know of some ladies who've had their Olaparib dosage reduced to 300 mg and it's still effective. As you know, I was on 800mg for three months this year, and I was taken off it for different reasons, but I didn't have any infections for those three months.

Also, stress can be a huge factor in our general well being -maybe some relaxation therapy might be of some help? I know it's probably the last thing you feel like doing at the moment, but it might be useful...

Sending you positive thoughts and hugs.

Juliet x

[IrishMollyO]

Hi Zaneta

I’m really sorry that you are having this upsetting episode . This disease is so unpredictable sometimes and so are the reactions to treatment. I can see your disappointment at having your dosage reduced especially as you are convinced that it was a flu virus that caused your fever. Last year my Taxol was dropped and my Carbo reduced but it still worked. It turns out that now that not having Taxol last year may be a blessing in disguise as iaccording to my new BC consultant it will be important to have it available for my latest episode.

What I’m really trying to say in such a roundabout way Zaneta is that everything happens for a reason . It is more than likely still working for you and you are just imagining it’s not working . You have to trust your team. I hope you get back to your usual optimistic self. Take care

XXX

[nettieanne]

Hi zaniest

I've been on olaparib for 5 yrs now with quite a few admissions to hospital with different virus's and infections , my neurophils are frequently on the the boarder line of being neutropenic , after some I'v antibiotics I am released home again . My dose was reduced from 400mg a day to 400mg one day and then 200mgon alternate days week on then week rest . Mine was reduced as I was suffering from really day vomiting after taking it for 3 days on my week on I was having too have day 4&5 off so that the vomiting would stop then I would take it again for the nxt 2 days . I had to have surgery last year for 3 tumours to be removed but because my ca125 didn't change I was left on olaparib as the drug company didn't know why my ca125 didn't react it has been stable at 4-5 for the last 4 years . Speak to your consultant because if your ca125 is stable they should leave you alone and not take you off it , don't worry about them reducing it because there are many different doses

Hope this helps Annette

[Bluehen]

I was told also that if I lowered my dose I could not go back to the higher dose. I wonder why? I decided to stay at the dose I was on and although I'm weak and tired, I'm doing ok.

Hope you get to feeling better and do well. I read where those on lower doses do well.