Consider the options?

[Pawpaw22]

Post total hysterectomy, etc., one cycle of carboplatin (couldn't tolerate paclitaxel) and now on Avastin i/v and Olaparib. CA 9, which is fantastic.

Side effects are just destroying me. I am 80, the Olaparib goes through to mid June 2026 and the Avastin finishes at the end of this year. Oncologist says if quality of life is declining, we can consider other options.

Is there anyone out there who has interrupted the Olaparib and Avastin and if so, what was the thinking surrounding the decision? Did the cancer return?

If I interrupt the Ola and Avastin therapy and the cancer returns, would I need to go through carboplatin again or can I pick up where I left off?

Thanks for any opinions you have on this.

[Katmal-UK]

Hi. Have you considered a lowering of dose? What side effects are you getting? I speak from experience as I trialled Avastin in 2007/8 and am currently trialling Olaparib (10.5 years so far).

[Pawpaw22 in reply to Katmal-UK]

Thank you Katmal for your reply. I will be asking about dosage, considering my CA125 is 9.

Weakness, jelly legs

Shortness of breath

Very tired, disinterested in everything. Sleepy all the time. Lack of focus.

Loss of appetite. Changes in the way food tastes. Stomach wobbling once or twice. Never thrown up.

Regular Bruising

Night sweats, twice. Pulse or beat pounding in ear at night

Severe headache on right side up into ear. Lasted 3 days.

Odd sensation when urinating but no burning. Sometimes (not always) urine has a strange odour (like eggs).

Feet burning, still pins and needles, left leg very itchy, Both feet tight and painful.

Dry nose, mouth, throat and eyes. Coated tongue. Thick saliva. Ulcers are much better following gargling with prednisolone.

Body temperature changes – cannot get warm, despite multiple layers.

[Katmal-UK in reply to Pawpaw22]

To be honest that sounds like the Olaparib side effects. Definitely ask you onc whether a drop in dose would help. Not everyone can tolerate the full dose of 600mg. For many a lower dose is just as effective . It might be worth getting yr urine checked. Not all water infections show symptoms and if you do have the addition of a water infection that could account for some of the symptoms you are experiencing. Oh and ask yr onc for anti sickness tablets just in case you need them. Do let us now how you get on x Kathy xx

[Pawpaw22 in reply to Katmal-UK]

Yes, lower dose will be discussed. I have anti nausea tabs, tx. And yes, I will ask about urine test.

Thank you. Def will report here.

[RoseMS]

i wonder if you could try dropping the infusions and see if Olaparib on its own will improve things? I was on Olaparib 2 years after first line chemo, before it was given alongside Avastin as it is now. Very tolerable and still doing well 2 years out. Hope things improve for you. R

[Pawpaw22 in reply to RoseMS]

Meeting on Thursday next. Blood test and urine test yesterday showed nothing out of the range, I'm told.

[delia2]

I agree. Consider dropping Avastin (though the side effects sound like Olaparib). I took 400 mg Olaparib for one year then 300 mg for two years. I still got bad fatigue but it was manageable. The other side effects went away after 3-5 months. Though food stayed distasteful. It’s a miracle drug if it works for you. I would stay on it at the lowest dose.

[Pawpaw22 in reply to delia2]

Thank you. Lots to think about.

[SopSinger]

I never had Olaparib or any other parp inhibitor and have been NED for 18 years. Stage Ic mixed clear cell and endometrioid (with a side of endometrial cancer), TAH-BSO and 6 cycles of carboplatin only (wasn't allowed taxol because of allergy history).

[Trickysite]

I was advised only to take Olaparib (4b BRCA 2) and never had Avastin. My Olaparib had to be reduced in two steps from 600mg to 500mg and then to 400mg (as I had become anaemic and needed blood transfusions on the higher doses). 400 was successful and stayed on that for the rest of the 2 years. Now 6 months off it and still NED. When my iron was low I used to get pulsating beating in my ears (pulsatile tinnitus) so get your iron checked out. Good luck. Mayo clinic is very useful website to check side effects of these drugs (more than on NHS). Nausea should and can be controlled with a variety of drugs. Emma xx

[Pawpaw22 in reply to Trickysite]

Thank you. I have made a note to check my iron.