Hello I'm new to the group ...I was diagnosed with stage 2a fallopian tube cancer and a faulty bracca 1 gene early this year have had a total hysterectomy and I have my last chemo today...just he carboplatin as oncologist she the braca responds well to it.....I have a ct scan in 4 weeks and then an appointment with my team .....in my phone appointment yesterday the consultant said I will be offered parp inhibitors as a maintenance has anyone else had these what sort of quality of life do u have with them ?
Tia Karen xx
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Hi I can only offer advice on Olaparib for which I have been on a trial for the last 6 years 8 months. It reduced my CA125 within a few months from 7 to below 3 where it's remained. I have a good quality of life. I work full time (currently from home. I do get some mild side effects such as occasional bouts of dizziness which is caused by a sudden drop in blood pressure. However, that's perfectly manageable as it happens when I move too quickly as in stading up and moving. I've learnt just to stop and wait for the dizziness to fade. I can go weeks with nothing then have a few bouts a day. Another side effect is nausea which was worse in the beginning but now it's very infrequent. I pop a couple of domperidone and within 20 mins it's fine. Probably the only other side effect I notice is loose bowel movements and an urgency. This side effect I have found over the time is greatly affected by what I eat. Onions for instance is a big trigger for me and boy do I love onions! I was diagnosed at stage 3 in 2007. Personally if you are asking would I recommend Olaparib (Lynparza) then wholeheartedly. Good wishes for your last chemo today, that's a great feeling to get that done!. Big Hug. Kathy xx
Aww thank u Kathy...on reading up the side affects look pretty dire but it's good to know they get less with time thank u for reply ....hope u stay feeling well 😘 xx
I agree the side effects look dire but that won't mean you are guaranteed to get them, you may not got any (fingers crossed). xx I'm now 61 so no spring chicken but find Olaparib so easy. xx
Everyone s ca125 level seems so low mine has plateaud at 21 even though I 've had 5 cycles it went to 19 cycle 4 then back up to 21 cycle 5 ...I'm quite worried about this xx
Hi Karen . 21 is well within normal range. Your 'normal' may well be around 21. Don't read anything into this but mine is holding 'below 3', when it came back as 3 I started worrying, we all do if there's any upward change no matter how small, the nurse said it can just be the way it's been read. Mine has always been low and even on diagnosis I was never a lady whose CA125 was in the thousands. In fact at recurrence was 65. 21 is good . I bet you would find other ladies (not necessarily on this site) whose normal CA125 is higher but still within normal range. Big Hug xx Kathy xx
I have many of the same side effects you describe. Do you take anything for the loose stools? I’m experiencing low blood pressure and have had several transfusions over the last year due to anaemia. I had some heart failure and take medication for that but when BP drops I’m never sure if I should take it or not. My blood pressure has rarely been high so I’m going to try to speak to my cardio team. The frequent loose stools leave me a bit weak and wobbly and although I try to keep my fluids up was never a big water drinker. Can’t take any alcohol now either! Trying to test out what my triggers are. Eating is an effort. Just about maintaining my weight.
Hi Cheryl. I dont take anything because ive figured its triggered by certain foods. Its better since I swopped totally to granary bread. The problem with weight is I try not to put it on. One of the side effects is loss of appetite..... one I didnt get!. Id speak to yr onc about that one. How l9ng have you been on it.... side effects do appear to lesson the longer yr on it xx
Started on the ICON9 trial in June 2019. Unfortunately there is some progression since January with lymph node involvement. Might have to have chemo again towards the end of the year! My Ca125 has been going up since Dec/Jan. From 101 in Jan, 256 in April and now 409. It was 4365 when I was first diagnosed in 2017. Went down to 19 In Dec 17 after debulking and chemo. I’m BRCA negative and breast cancer in 2010 not linked as far as I’ve been told. Had a clot in my heart in 2018 and had to have warfarin for eight months. Heart has made fairly good recovery. I get short of breath when I’m anaemic so suspect that it’s dropped again. Thought it was the warm weather but that was optimistic I think. Keeping on and trying to stay positive. Cheryl. X
Hello Karen. I thought I had posted to you and Kathy individually but yours has disappeared. Just to say wish you well. The Ca125 question is strange isn’t it. If it’s a marker for some why not others. I don’t have any inflammatory disease that I’m aware of like arthritis although I was originally diagnosed with IBS before any tests were carried out. Can I have IBS as well as ovarian cancer? I do have a large incisional hernia which gets uncomfortable towards the end of each day and I look six months pregnant! I think it adds to my breathlessness too. Some good days and some not so good. I definitely think the olaparib has helped me and your Ca125 figures are encouraging. Good luck.
Aww thank u cheryl ...on the IBS I think with various medications it's quite easy to get ...who know we have to trust the process and have faith it's all murky waters bless u xxx
Hi Karen. Welcome! I’m on Olaparib for maintenance after my first recurrence. Giving it to people like you after frontline is fairly new but the SOLO trial showed that it could hold off or prevent recurrence for a high percentage of BRCA positive women. I’ve been on it four months and it’s fine but I do still have some days where I’m nauseous and I’m quite tired though not every day and usually not all day. However I am 71. Good luck!
Thank u Delia...Yes I didn't think it would be available to me 1st time ..I'm only 52 not sure if that makes a difference but was initially told it would be either down the line xxx
Hi Karen l have been on the parp Zejula (niraparib) for almost 2 years now . I was diagnosed with ovarian cancer in 2012 at the age of 65,l have had 4 recurrences the last one being almost 2 years ago. I have found the parp fairly easy to cope with,yes l have had some side effects mainly nausea and insomnia which come and go ,l had the doseage reduced recently and can honestly say that my quality of life is good,still cycling when the weather is good at the right old age of 74. I know that the side effects look terrifying but you are not necessarily going to get them all! Good luck and l hope they work well for you Pam x
I am entering my third month of PARP (olaparib) inhibitors.I am BRCA 2+.I have felt really well on them and my CA125 is now down to 10.No side effects so I'm hoping this will last.Good luck with your next medication.
Oh Ann that is the sort of news i want to hear fabulous glad to see u are getting on well with them ...fingers crossed they will give me the go ahead in a few weeks when I see them 😘 xxx
Hi Karen. Just checking in to welcome you to this forum. I haven't gone down the PARP route yet - not even sure they are suitable for me. However there are lots of lovely ladies here who can offer you information and support - they are really good at that. So all I can do at the moment us wish you well going forward with your treatment. Jackie 🤗
I've been on Niraparib since October 2017. There are side effects, but they are inconvenient, nothing more. My quality of life is good. I'm active, busy, enjoying myself and so glad to be able to have access to this drug. Everyone reacts differently, but I hope ongoing treatment goes as well for you as it has for me.
Hi, I’ve been on Niraparib since April 19 with no side effects at all. The only time I had an issue was when they put it up to 300mg and my bloods crashed. Had a blood transfusion and 3 weeks off it (was supposed to be 4 but I got a sweet oncologist standing in for my real one for a week and I think I bullied him 🤣)
I take mine in the morning (with the real mans blessing as I didn’t want to have to take it if I was out for the evening!)
Before starting it my CA125 was 17 after 2nd course of chemo, but it’s now around 10-12....mostly 10!! But no side effects and I can get on with my life! Hope it goes well for you too xx
bit of a late reply but just to say I have been on Olaparib - full dose for just over 4 months. I'm BRCA2 aged 53, work, have two teenagers and a busy life. I get tired at the end of the day and sometimes in the afternoon I sit down with a cuppa but otherwise all is good. I've had a few bowel issues but can deal with that and also find I can't really drink alcohol as it makes me feels rubbish the next day. Thats not necessarily a bad thing though and it means we've saved a bit of cash! We've just come back from five exhausting days in a hobbit hut in Cornwall and I think I did pretty well considering the days were long and busy and we slept on the floor!
I try to eat well as when I was first diagnosed I gave up meat and most dairy but now I eat to try and keep my blood results normal. I also take a multivitamin with iron and high dose Vitamin D. Good luck and take care, sticky3006 xx
Aww thank u .....I try to keep a varied diet...hopefully will be able to stick with that....good advice about multi vits etc do they make a big difference? Xx
Sorry for late reply. I'm not sure about the vitamins etc! I just thought I'd try and keep my iron levels and Vit D levels up. I get my bloods checked next week. My haemoglobin has been decreasing slowly so we'll see what next week brings. Take care and good luck xx
Firstly...fantastic news that you have been offered a PARP. They were not available to some of us 2-3 years ago, and many people are now doing well on them.
I have been on one since 2017 and am doing really well.
I am on a low dose as the higher dose was tough, but when they get the dose right (and depending on what they try you on), you can have a good quality of life.
We are all different, but that is my experience so far.
That’s OK. If you have any questions, please do PM me. It took about 6-7 months I think. Unless things have changed, they start you on a high dose and then see how you get on.
Hello, I am taking 300 mg of Olaparib every day together with an experimental drug for one week out of four. I have only been on the drugs for six weeks so it is early days but so far the only side effect I've had is that occasionally I have a peculiar taste in my mouth, not exactly metallic but kind of. I felt very slightly nauseous for two days right at the beginning but no longer. I did have to have one week off though because of low haemoglobin but it righted itself after the week off, without the need for a transfusion. Of course it may be the experimental drug which caused that, which goes by the catchy name of AZD6738.
So my quality of life is very good and I don't really know I am supposed to be ill, apart from some cramps. I do have low blood pressure but I always have had and I don't experience any symptoms from it. Of course, six weeks is not that long really and it may not remain so, I suppose. Helen
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