OLAPARIB

Hello all I started Olaparib at the very end of Dec 2021 I have had 2 blood transfusions after low HB one in march and then 1 in April with a dose reduction to 500mg.I have not had another transfusion since although I am expecting my bloods to be a bit low at the moment (Anaemia) I am about to complete the last of the 18 Avastine and have my Dr reveiw soon just wondering if anyone else has had a dose reduction to 400mg which helped with low bloods

[Starbarn]

Hi I started on olaparib in January along with another drug on a trial . My experience was similar to yours with the time line of transfusion. In may they reduced me to 400mg daily . My HB is still on the low side but just managed without it last month but I had to stop taking them for a few weeks.

I also had my Covid booster and was very unwell with it . Which didn’t help .

[Hidden in reply to Starbarn]

Thanks I have an appointment with the consultant my red blood cells last mouth were about 85 so just about got away with it have a blood test Monday and think its about the same I am going to ask about spatone iron supplement just about to finish avastine so wondering if the consultant will wait till I have finished that before making a decision on dropping the dose hope I do not need a blood transfusion as I am going away soon

[Trickysite]

I started on Olaparib alone in Jan and after 2 months got very low anaemia. 3 blood transfusions. Reduced O to 500. Anaemia again. One transfusion. Have been on 400 mg fir two months and don’t think I have low anaemia now but blood test on Friday will show. I have started taking Spatone iron supplement this week. Fingers crossed.

[girakoch in reply to Trickysite]

I am very sorry to hear about the problems with anaemia. I have only just started on Olaparib and it's causing bad gastric reflux. I fear I may be intolerant to this drug. I feel very unwell. Has anybody else had this problem? Does it get better?

[Rankij11 in reply to girakoch]

Try to keep going , maybe with reduction if necessary . Or help with reflux . It can take quite a while to live with this drug . Maybe 3 months or so. It will get betterBest wishes

Jennifer

[girakoch in reply to Rankij11]

Thank you for your encouragement. I am taking omeprazole and I take the tablets with food. I am still not fully recovered from the joys of Caelyx and had been expecting nausea, but not such bad reflux.

[Rankij11 in reply to girakoch]

I do think it is a problem for sure . I had terrible reflux when the cancer was developing, I thought it was indigestion and left it far too late . And now I do have to be careful, for example if I’m gardening or bending a lot I don’t eat before . So it’s a bit more about management for me ?? I know it’s simple but If I feel acidity buildup, Rennies help a lot . I’ve always been on 400 dose for Olaparib btw . Jennifer

[Hidden in reply to girakoch]

I tend to take my tablets whenI have my meals and make sure that I do not eat to close to when I am about to go to bed I have had some indigestion but not often just took a little bit of indigestion medication or peppermint tea

[delia2 in reply to girakoch]

I have had bad reflux with it but I am now only on 300 mg so it’s much better. I take a proton pump blocker and then occasionally Pepcid in addition. I always eat before I take it and drink a lot of water.

[girakoch in reply to delia2]

Thank you for your reply. As I have only just started on olaparib I am on the full dose.I am taking omeprazole and I was thinking of taking Gaviscon tablets as well when necessary. Have you found the drug more tolerable over time?

[delia2 in reply to girakoch]

I stopped being nauseous every day after four months but the acid reflux didn’t get better until I had a break then went to 300 mg. I had acid reflux before cancer. I do think a lot of water helps.

[girakoch in reply to delia2]

The acid reflux is so horrible. I have a small hiatus hernia and like you had intermittent reflux before Olaparib. It is quite severe on this drug. I am not so bothered by nausea. I am trying I-Qora training for the relux. You can find out about iton the internet. The oncologists don't have to undergo chemo or take Olaparib and I

sometimes wonder whether they fully understand the severity of their patients'

symptoms unless they show up in blood tests. They don't have the actual experience.

I wish you the best of luck.

[delia2 in reply to girakoch]

Best of luck to you as well. Xx

[Hidden in reply to Trickysite]

Sounds like it has worked for you with the lower the dose reduction I am also very tiny so I think it is most likely that the dose will be dropped I do not really have other side effects from the drug apart from mouth ulcers but this is much less now 500 and I am really desperate for it to work because nothing else available

[Trickysite in reply to Hidden]

I am 4 ft 10 and a bit inches tall so I, too, am small. On the lower dose, my taste is normal, which is a nice side effect! I do have awful heavy legs and poor balance, a side effect which has been ongoing to a greater or lesser degree since chemo and continues on Olaparib. Anybody else have this? I see the Mayo clinic website, which has a longer side effects list than elsewhere, lists muscle problems and “awkwardness “ in four different references. My Marsden doctors don’t really comment on this or suggest any remedies although I raise it every time. It is limiting in terms of my walking and I do not drive. I suspect it is a form of neuropathy?? Feeling in feet is normal. Numbness feeling in hands a bit better now and electric shooting pains have calmed.

[Hidden in reply to Trickysite]

I am 4ft 11 so were about the same sorry to hear that muscle issue and hope that it will improve I would keep putting it forward to the consultant though

[girakoch in reply to Trickysite]

Hello Trickysite, I am interested in what you say about your impaired balance. I had vestibular problems after bad influenza a good number of years ago. However, my balance is really impaired after recent carboplatin and caelyx, My osteopath has given me exercises to improve balance which I am starting to do. You can also getspecial physiotherapy which retrains the brain. It would be worth talking to your GP.. I fell in the house a couple of days ago and it isn't funny. The physio

department at St Thomas's Hospital helped me after the 'flu. Do try and tackle your balance. You need to find what is causing the problem.Good luck,

[Trickysite in reply to girakoch]

The hospice physio gave me simple exercises like standing with my eyes shut etc. to retrain my balance and these certainly help but the heavy legs impair my balance, I think. And that is the Olaparib. The only day my legs and feet acted normally and I became Miss Skippy Toes again was after a severe bout of diarrhoea, when I think I had got rid of all the Olaparib! Are your exercises eyes shut?

[girakoch in reply to Trickysite]

I am so sorry about your legs. Perhaps it will happen to me. I have done exercises with eyes shut in the past but the present exercises are with eyes open. Very slow walking,standing and waving my arms around, walking around a table and turning inwards at the end/corner and walking back, stepping over an obstacle.

Do they suggest anything to help your legs? I wondeer whether it's worth consulting a medical herbalist. I know Dr Vogel does products for heavy legs which include horse chestnut. But a herbalist would be better.

[Trickysite in reply to girakoch]

Very interesting. Do you have the exercises written down and could send me? Also interesting about medicine for heavy legs. Will have to push queries at this Friday consultation.

[girakoch in reply to Trickysite]

Hello Trickysite, No, I don't have the exercises written down and the osteopath only gave me them last week. I'm seeing him on Friday, and will tell you about them.Try walking very slowly somewhere you can hold on if necessary. It's quite challenging for the brain. That's one of the exercises.

I suppose you need to know why Olaparib is giving you heavy legs. Is it veins, or is it affecting muscles? Do the oncologists not suggest anything?

Medical herbalists can be quite effective.

I was looking at your profile and I see that Olaparib has been problematic for you.

I am so sorry and hope you start to feel better.

[Trickysite in reply to girakoch]

Thank you. You are right - is it veins, muscles or nerve signals from brain to legs? Could be a combination! I will press on Fri consult. Apart from this, which is making me semi disabled, I feel well.

[girakoch in reply to Trickysite]

I am glad you feel well apart from the legs/balance. But that must limit your life, as it does mine. See if you can get more info out of the docs! Good luck

[Frenchhouse3]

Hi there, I was on Olaparib for two years for maintenance and am currently NED. ( started it Jan 2020 ). I had low iron around four times during this period and came off the tablets twice for a week and twice for two weeks and then resumed. I am also on the smaller side but kept in the full dose throughout.I did have some tummy issues in the first three months also but this settled down.

Hope this is of help. I think we all tolerate things differently but I have found it to be a great drug.

I also took Spartone with added vitamin C and found it helpful to an extent, although sometimes the HB just plummets out of the blue!

Spatone has the best absorption rates and the one with vitC helps it get absorbed properly too.

Best wishes

Denise X

[Hidden in reply to Frenchhouse3]

Thanks i will ask my consultant about spatone and vitc I sometimes feel because my situation is so bad the medical team don’t really expect much so not much point in recommending things it really annoying me because I have been quite well and returned to work part time even though I have been diagnosed with a poor outcome

[Frenchhouse3 in reply to Hidden]

My prognosis was really poor to begin with but things aren’t always as bad as they seem. You deserve every chance to have as full and long a life as you can. Wishing you all the best with Olaparib.

My consultant says that the longer we keep going, the more science is developing new treatments. There is a new trial beginning this year in the US which looks promising. ( I read it on a post from a lady called Sashay).

Denise xxxxx

[Hidden in reply to Frenchhouse3]

Thanks for that I am so frightened because of my diagnosis old like to see the post thanks for your help though

[Frenchhouse3 in reply to Hidden]

If I can find it again, I’ll try and forward it. It’s something like The Rice project I think and it’s where a small injection is put in the stomach which basically just starts the immune system into attacking the cancer cells. Trials have been in mice so far and they’re hoping to test on humans late this year. The mice were cured of advanced OC within days! I know our bodies are completely different but even so …

[Hidden in reply to Frenchhouse3]

Sound fantastic

[organicinna in reply to Frenchhouse3]

Hi dear. You have a nice inspiring consultant. My variety of doctors here never said anything like that just for simple support.... ))

[Frenchhouse3 in reply to organicinna]

Yes, my consultant is very kind and caring, I feel very fortunate. Xxxxx

[Trickysite in reply to Hidden]

I am terminal 4b but my consultantnsays something other than the oc May see me off! Take hope!

[Hidden in reply to Trickysite]

Me to diagnosed end of April 2021

[Trickysite in reply to Hidden]

Snap! Same month, same year!

[Hidden in reply to Trickysite]

How are you getting on are you on olaparib

[Hidden in reply to Hidden]

Sorry I did see what you said earlier your very small like me hope your doing well

[Hidden in reply to Trickysite]

Sorry I did see your post earlier your on olaparib hope your doing ok

[Guilane]

Hi, I have been on Avastin plus Olaparib since Nov 2021. I haven’t had blood problems but had my dose reduced to 300mg because of kidney problems. I am tolerating well now apart from dysgeusia and neuropathy. My comment concerns Avastin. You say you are about to finish the 18th. If you are in UK, and would like to continue, there was a new NICE directive in April which will allow you to have 22, if you are eligible. Gill X

[Hidden in reply to Guilane]

Thanks for that I will ask my consultant about it because I would like to continue on it due to my situation being so bad I feel fine and on the last blood test the CA 125 was low so hopefully stable cancer

[Hidden in reply to Guilane]

Just wondered what the criteria is to get 22 Avastine

[Guilane in reply to Hidden]

I’ll need to look up the report re Avastin. I’ll send you the link when I find it. My onc didn’t know the time had been extended! Gill X

[Hidden in reply to Guilane]

Thanks I did see one lecture on it but was not aware it had been passed

[Guilane in reply to Hidden]

Ok so here's the link england.nhs.uk/wp-content/u...

It's on the Cancer Drugs Fund list. The part I come under is page 33 OLAP4_v1.0 (CONT) particularly number 14 (15 months is the crucial sentence regarding length of treatment). I didn't really understand all the criteria so just gave my Onc the info and Hey Presto 22 cycles instead of 18. Good Luck.

Phew. Gill X

[Hidden in reply to Guilane]

Thanks I will have a look

[cherrysews]

HiI had a transfusion (Oct 21) and was reduced to 300mg per day. This has worked since, so it seems to be a case of seeing what works for each patient. I'm not really sure why they put everyone on the highest doses when it has such an effect on people. If a lower dose will still keep the cancer at bay then why not do that? Best of luck.

[Hidden in reply to cherrysews]

Yep a few nurses I had a chat with said the same