Started Rucaparib nearly four weeks ago, despite three different anti sickness tablets I'm still feeling sickly and tired,got call from chemotherapy unit to say my liver function is raised, oncologist had e-mailed them to say I could take a weeks break if I wished ,I said I'd keep going till I see him next week. Im having second thoughts ,I've felt so awful today , I'm thinking I'll just stop today,what are your thoughts ladies ,I'm scared to stop , scared not to.
Cheryl
After 4 weeks I had to take a break because I had a few crashes. Then I kept having breaks because a stent from kidney to bladder kept getting infected. My oncologist said a break to sort out the issue was ok so It won’t do any harm to pause as long as they sort out why the liver function is raised. Obviously the aim is to keep us on them for the long haul but a little blip should be fine. I hope they get you sorted. My dose was lowered. X
Thank you , I've decided to take a break , I was worried about but feel calmer now I've made the decision.xx
Hi Cheryl, So sorry to hear that you are feeling unwell and that your liver is stressed. Seems like we rarely have long periods of no worries or concerns when we live with this disease.
Chemo does put an extra strain on our bodies and sometimes the organs need a rest. Often we are asked to postpone a treatment as our numbers change. It would not be unusual if you took a break.
Whether to go one more week prior to seeing the Dr. would be (for me) contingent on "by how much" the liver function was raised - if just a bit, I might push forward. If significantly elevated, I would take a break. I feel that the liver is critical to your well-being (as is ridding one of the cancer, or keeping it at bay) and that giving it a rest will make you stronger in the weeks to come. Not giving it a rest may tax it such that it is harder to recover. I do not think (no facts, just an opinion) that the cancer will rally back if not being treated for one week and/or until you and your Dr. can determine what's best.
Making that decision is clearly stressful. If your mind and spirit feel better when you think "I'll give it a week's rest" and you find some relief in that, by all means, take a break. Wishing you peace and comfort in whatever decision you make. Please let us know how you are doing and what is decided after you see the doc. Sending a (covid safe) hug.
What you have said makes perfect sense , I've decided to take a break until I see the oncologist on Tuesday ,thank you so much.xx
Hi Cheryl, so sorry to hear you are not feeling very well and that your liver function test is raised. I can share my experience but with the caveat we are all unique and make decisions that suit us.
So, the same happened to me and I also felt so very ill I could hardly function on a day to day basis. I came off the rucaparib to give my body a rest and my liver did begin to recover. After two weeks I was offered a lower dose but after much discussion with the doc, thought and prayer I decided not to go back on it. That was in early February and since then my CA125 has gone upto 52 from 41. Now I feel as fit as a flea and really am living my life again, walking, gardening even got the jam pan out & made 10 lb of jam yesterday. I have a scan next week to see what the b***** is upto but even if it is active I’m hoping I can delay more chemo until I have symptoms.
Your body may respond completely differently and maybe after a rest your liver will bounce back to normal and if they can look in their bags for a different anti sickness might tolerate it better.
These decisions are never easy but I wish you the best of luck whichever you make.
Sending love and a hug.
Jan. xx
Thank you Jan ,I can understand why you made that decision. sounds like you are happy with it .Hopefully when I see my oncologist Tuesday I'll get some answers. Xx
Have you tried Levomeprozine for the nausea? It makes you tired but I find half a 6 mg tablet will stop the nausea for a few days- and the tiredness wears off .
Thank you Neona, haven't tried that one yet ,Will speak to my GP ,thank you.xx
Hi. It’s soooo frustrating to deal with these side effects. I’ve been on Olaparib for a year and had several months of nausea and extreme fatigue. I still get fatigue occasionally. However the remaining cancer I had at the beginning disappeared and gave me a new lease on life so for me it’s all worth it. Have you tried a lower dose? I wish you the best with your decision. Xx
So pleased your remaining cancer disappeared ,gives me hope.Im going to discuss a lower dose when I see the oncologist next Tuesday, I'm on the highest at the moment. Xx
I started olaparib in March few weeks on it I had to stop, my breathing getting difficult, had ct scan ,all ok , back on tablets ,went to hospital on Monday for bloods ,got call yesterday, liver function very high ,stop tablets again ,no 2nd covid jab on Wednesday, back to hospital on Thursday for blood tests and ultra sound,olaparib makes me very tired,out of breath
How awful for you, hope you get sorted soon. I'm due my covid jab this afternoon , perhaps I shouldn't be having it ,I forget to ask. Xx
Ended up in hospital on Wednesday,still here ,they trying to find out why liver function so high
Oh goodness ,how awful for you , hope they get you sorted soon. X
HiJust wondering,are you drinking loads of water . I just wonder as I’ve found a lot of the PARP side effects are helped by this .
Hope you feel better soon,
Jennifer
I've been drinking three litres of water daily since I started chemo in 2019 , I'm sick of water 😂 but thank you for your suggestion. Xx
You must be afloat , no wonder we have a drought down in sunny Sussex ! Ok, one other thing , when I feel nauseous the answer is to eat a little something, maybe if it’s only a biscuit (good excuse ) , but I know some people are better empty I’ve heard on here so… . Anyway I would say try to keep going, give it your best shot as these are a lifeline to higher stages.
🤞for you
Jennifer
I'll send some water down Jennifer, I'm having a break until Tuesday to give my liver a chance to sort itself out , I'll talk to oncologist about it Tuesday , I felt so bad yesterday I had to go to bed by six, may need a lower dose of Rucaparib, I'm on the highest, Tuesday can't come soon enough. Xx
That can work, I went on lower dose of Olaparib after 1 month as kidneys suffering and it seems to do trick . Meanwhile have a good few days off it , and hope you feel better soon and Tuesday comes quicklyJ
Thank you xx
Hi Cheryl, I'm not on a parp yet but will be in the future 🤞 from what I can gather your body needs to get used to these medications and it takes a while, during which all sorts of side effects materialise. If the onc says it's okay to take a small break I'd do it myself and give your body a rest, it's been through enough so be kind to yourself. All the best Sue xx
Thanks Sue , I'm calmer this morning, I've decided to take a break .xx
I think your doing the right thing. I haven't heard anyone say putting up with side effects saved the day, we've been brave enough! 😘
We have haven't we , sometimes we have to stop being brave for a while and give in ,then we pick up again and battle on . Xx
Absolutely xx
I completely understand your reluctance but I think I would try a week off if I felt dreadful as you do. Nausea can be so depressing.It will give you a chance to recover from the sickness and your liver a break.
It might just break the nausea cycle.
In a weeks time perhaps you could start the sickness tablets before you re start the Rucaparib?
Could you start on a lower dose too and gradually increase?
Also I think sometimes just making that decision and taking control can make you feel better .
Really hope whatever you decide you are feeling better very soon.
Liz.x
Thank you Liz, I've decided to take a break until I see my oncologist next Tuesday ,will discuss a lower dose with him ,feel happier now I've made the decision, xx
I'm so glad you're feeling happier and I'm sure the break will give you a chance to recharge.Liz.x
I am sorry you feel so awful on Rucaparib. I stopped taking the drug last week for 4 days,as I attended the dentist,& was told that should the work be invasive (which I did not know before I went) that I should come off Rucaparib a few days before and a few days after treatment. So I am guessing you will be fine & I hope you feel better very soon.
Thank you ,I'm going to take a break until I see my oncologist next Tuesday. Xx
Hi Cheryl
When I started Niraparib my liver function tests went through the roof and I felt absolutely awful. My Onc was quite alarmed and stopped the drug for 2 weeks. I restarted on a lower dose and although I still have some side effects they are manageable. My liver and kidney function are completely normal now, as is my blood pressure.
I can cope with the tiredness and just pace myself. I take an an antisickness tab still. I have now been on Niraparib for 35 months and my bloods yesterday are all great.
I would say take a break, reduce the dose if possible restart and persevere for a few more months . Very best of luck.
Kay
That's good advice, thank you, I'm going to discuss a lower dose when I see my oncologist next Tuesday.xx
Hi there,Dandelion root tea is really good for flushing the liver through of toxins,3 cups a day,try to make sure it’s organic if possible,it has to be the root.
Best wishes x
Thank you I'll see if it's available in my health food shop.x
HI CHERYL,
I'M ON OLAPARIB. MY ONCOLOGIST SAID IT HAS THE LAST SIDE EFFECTS. WHETHER THIS IS TRUE OR NOT, I DON'T KNOW. I DO KNOW THAT I TAKE IT WITH SOME FOOD BUT IT DOES TAKE TIME TO GET USED TO IT. THE SIDE EFFECTS LIKE THE NAUSEA DO DIMINISH OVER TIME. GIVE IT SOME MORE TIME. IT'S WORTH THE TRY!
BEST OF LUCK,
LEE
Thank you Lee, I felt so bad by yesterday evening that I've had to stop it until I see my oncologist next Tuesday, hoping a slightly reduced dose will help, having a short break will give my liver a chance to sort itself out . Xx
HI CHERYL,
I HOPE THE REDUCED DOSE WILL DO THE TRICK FOR YOU!!! KEEP US POSTED PLEASE.
FEEL BETTER,
LEE
Thank you ,I will.xx
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