anyone able to advise how they are getting on, ... - My Ovacome

My Ovacome

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anyone able to advise how they are getting on, on Study 4 trial please?

Loorunner profile image
10 Replies

Hi Everyone. I'm just about to go on Study 4 trial at the Marsden, starting this Tuesday (this is taking Olaporib in combinations with a new trail drug Ceralasertib). Is anyone on this trial who can share their experience please? any problems with side effects etc? any advice?Thank you very much.

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Loorunner profile image
Loorunner
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Lyndy2 profile image
Lyndy2

Hi Loorunner

Yes I am on Study 4, I saw a comment you made last week and thought ‘ah hahh’ because to my knowledge it’s just us on this trial!

I am on cycle 2 of Celarasertib and had completed my 15 days on when I came down with fever and breathlessness. My blood levels had crashed and I also had an inflammation in my lungs.

Blood transfusion and high dose steroids have controlled my symptoms.

My ca125 indicates that the combo is very effective against cancer but now there’s a question mark about whether I can tolerate the dosing regime 😩 so a bit in limbo.

Back to clinic next week….

How are you finding it? xx

Lyndy2 profile image
Lyndy2 in reply toLyndy2

Sorry, I realise that sounds all rather dramatic! I have to say I had no side effects for cycle 1 and have found it very tolerable generally, I don’t want to put you off! I am just really worried in case they won’t let me continue xx

Loorunner profile image
Loorunner in reply toLyndy2

Would you go onto carbo/ caelyx ?

Loorunner profile image
Loorunner in reply toLyndy2

I do hope you feel better and don't worry about scaring me... I knew asking the question on the chat might bring positives and negatives xx

Loorunner profile image
Loorunner in reply toLyndy2

I'm due to start it this Tuesday....so we'll see! I do hope they can sort things out for you Lyndy, so you can get back on it. Xx

Starbarn profile image
Starbarn

hi loorunner. I’m on these drugs but it’s Atari trial. I take 400mg olaparib was 600mg but couldn’t tolerate it in a 28 day cycle and 160mg of ceralasertib for 7 days then 3weeks off . I’ve been taking these 14 months . Now I will say I’ve had a few issues but not all together and they kind of creep up on you.

The first month I was ok just felt a bit sick in my stomach and nasty taste in my mouth. Ask for anti sickness tablets.

The second month was rubbish my bloods had been knocked and I stopped for a week. I also became constipated. Drink plenty of water on these drugs and ask for Movical if you need it.

The third month a blood transfusion and my forth they had to stop again for a week and reduce my olaparib.

What I found was by day 10 I felt fatigued and generally a bit down but this improved by day 15.

I’ve had a few more transfusions since then as this seems to be the main side affect of the drugs. I’ve now been told that I will take ceralasertib for 4 days instead of 7 to stop my bloods from dropping as it’s affecting my HB and my platelets.

I would avoid alcohol until everything settles and then in moderation . 2 glasses and I’m gone.

Small meals and I find fresh fruit the most inviting

I’ve no measurable disease now and hope it will continue to keep it away. It’s a small price to pay and nothing compared to chemo. Good luck x

Loorunner profile image
Loorunner in reply toStarbarn

Thank you so much. That's so helpful. The meals take some planning I'm expecting (nothing 2 hours before and after ceralasertib twice a day..... I'm going to try and get this planned. Great advice about water, antisickness and movicol. Hope things are OK for you. Sending v best wishes xxxx

Starbarn profile image
Starbarn in reply toLoorunner

your welcome. I only take ceralasertib in the morning when I wake up.along with the olaparib. I have to leave it an hour then I can have food. So I have a cuppa and shower then it was time for breakfast. If your only have olaparib in the evening you should be able to have with or without food. It depends what form they give you it in but my advice if you can eat then I would . It helps with the sickly feeling. You’ll soon get into a routine x

I am just about to go on this trial in Bristol. My oncologist runs it in Oxford too and says he has many ladies doing really well xx

Loorunner profile image
Loorunner in reply to

that's really encouraging. There's a question over my urine sample today, so just awaiting a call to see if we can go ahead tomorrow - very nerve wracking! I wish you all the very best with your trial. Do contact me if you want to compare notes on how you get on.

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