Dear Lovelies, I have now developed severe low haemoglobin twice in the 4 months I have been on olaparib- four blood transfusions in total and am off olaparib for the second time. I am BRCa 2 , so really had great hopes as Brca2’s tend to respond well on this drug, cancerwise. . Everything else on the bloods is good and am at the Marsden. They are planning a gastrectomy just to check no bleedingfrom stomach. I will see the Gynaecology clinic next Friday. My first dose of Olaparib was 600, then they took it down to 500 but 10 days later I needed a transfusion. Anyone on 400 with Olaparib? They are muttering about taking me off completely and putting me on wait and watch. Notwhat I was hoping for. Hope to hear from my ethereal friends.
Not able to tolerate olaparib, anyone? - My Ovacome
Hi, I'm in a similar situation. I'm not BRACA positive but my tumour is.
I was on 600mg Olaparib from November 2021.
In February 2022 my haemoglobin dropped to 69. I had a blood transfusion and a week's break. My dose was lowered to 500mg, and last week my haemoglobin dropped to 64. I had another transfusion.
I was due to restart on 400mg this week but my oncologist wants me to have a further 2 week break as I am particularly sensitive to the treatment. My haemoglobin is currently at 90 and they want it to be above 100.
Like you, I'm worried about the alternative if I can't tolerate Oliparib. What options are out there?
Hi there, I was on Olaparib for two years and my HB plummeted about 4-5 times. Only on the last dip did I have a transfusion. For the others, I just had 1-2 week breaks.
I used to take daily iron water sachets to help with my iron ( with added vitamin C).
I’m not BRCA + but my tumour was BRCA2 +
I’m now three years on since diagnosis, without reoccurrence, so try and keep on it if you can, even with lots of breaks.
All the very best
Such a wonderfully encouraging response. Thank you so much!
Thanks for this. I just bought some Spatone this morning. Did you take it while you were on the Oliparib or just during the breaks?
I asked my oncologist and nurses if there were any supplements I could take to improve haemoglobin and they said no. But it's worth a try.
Hi there, I took it fairly regularly throughout and found it did help me personally. It didn’t stop the sudden HB drops from happening but helped me recover well during breaks. The cancer specialist dietician recommended them to me as gentle on the tummy and highest absorption rate.Xxxxx
Sorry to hear of your troubles . Just to say I’ve been on 400 throughout (2.5years)
I hope they manage to sort this for you
All good wishes
Thank you for taking the time to let me know of your 400 dose. I was very disappointed when the onc yesterday muttered about watch and wait and responded I believe other ladies are on 400 and she looked blank and did not comment. My son just now commented - that was the junior doctor,mum!
So just to add Was stage 4, inoperable . First month on Olaparib 600 , but showing kidney stress . So went to 400 and have remained stable since . Tolerated well .BRCA 2 +
So keep going !!!!
The only thing I would ask is can you go on a different parp which you might be able to tolerate, they do differ. I'd give my eye teeth to try a parp but I'm not Braca positive. Good luck Sue xx
Hi Sue, I'm brca negative and started on Niraparib a month ago. Can you ask your oncologist if a parp is possible for you? Xx
Hi AlwaysSmiling, That's really sweet of you to get back to me. I badger my onc all the time but I'm currently platinum resistant so a parp is not on the cards. However I've found a Clinical Trial for Olaparib on Platinum Resistant people, it's phase 3, and I intend to pick her brains on Tuesday when I see her. I'm already on a Clinical Trial but that would be a reserve Clinical Trial. Take care Sue xx
Good luck! There are some promising trials appearing, let's hope we all find something that will work for us🙏 xx
Absolutely a cure for all would be wonderful. Have a great weekend. Sue xx
Hi Sue-I'm platinum resistant and BRCA- and I am on Zejula, so far with success. Keep badgering, and good luck with the clinical trial.
Hi Joanna Thank you so much for letting me know, could I get in touch again to find out some more information after I've spoken to my onc.. Also is it a Clinical Trial or a 'normal' treatment. Thanks again Sue xx
I'm also in the US, but zejula seems to be the standard of care for BRCA- patients. They tried to start me out on 300 mg, but I couldn't tolerate the side effects. I am now on 100mg. I've seen other ladies say that their docs say 100 mg is useless, but my second-opinion doctor at MD Anderson says that the dosage is weight-based and that 100 mg is fine. And it seems to be working. I hope that you don't encounter barriers to access to it where you are. Feel free to PM me if I can answer any other questions. It is not a clinical trial, but standard treatment.
Hi Joanna, I'm not in the US, I live in London and in the UK NICE register all the drugs whereas in the US it's the FSA. Currently NICE do not license parps for Platinum Resistant people and there are very few Clinical Trials for it. I'm going to discuss this with my onc tomorrow. Thank you for all your advice. Regards Sue xx
Hi Sue, I am BRCA negative and they put me on niraparib. They said this would be a good parp for my ovarian cancer, even if I was negative. My scans are looking well, so I feel pleased so far. Just wondering why you weren’t put on a parp. Donna
Hi Donna, I'm platinum resistant which is why I didn't get a parp and my onc tells me there is a platinum action with them. I've found a Clinical Trial for Olaparib and another drug which I am going to talk to my onc about. Thanks for getting back to me. Sue xx
HiI had a similar reaction after the first few months on Olaparib (at 600mg). I was lowered to 400mg and then 300mg - which I continue to take - and has resulted in no repeat of the low haemoglobin and has kept the cancer at bay for more than 18months now. My haemoglobin is staying at a healthy level. I am BrCa 1, by the way. Not sure why they won't try an even lower dose than the 400mg; maybe something for you to ask about?
Best of luck with everything,
Hello, good suggestions here to try lower dosage. Clincial data states dosage is based on your weight and platelet levels. So def worth discussing with your onco team. The primary research was 400 , however this is now changed . Good luck
Very interesting, I am small, just 5ft tall, and I did wonder about calibrating the dose to weight level and would they be giving 600 to a 14 stone lady or an 8 stone lady like me. I will raise with onc. D
Please do, I had this exact discussion just last week with onco team and my main onco consultant agreed that Im a good ‘fit’ for the low dose of 200. All this micro managing is tiring, but highly necessary. Good luck Trickysite 👏 I’m new to this group and felt compelled to reply to your post.let us know how you get on.
Hi trickysite. I have a similar time line and dose as you with 2 blood transfusion in the 4 month period. I have had a one week break after my first blood transfusion. Then a 2 week break after blood transfusion and a urine infection with antibiotics. But this month I’m fairly good but my oncologist has said olaparib can be reduced further. So don’t give up hope.
That sounds so much like me, uti, antibiotics and all in the same time line. Thanks so much for your kind words.
Hi. Sorry this is happening to you. I was on 400 mg for the first year and 300 for the second and it got rid of small tumors and has kept me ned. Maybe you could try 300? I’m somatic brca1.
Thank you for sharing your experiences, I do hope all gets settled for you and the treatment does what it is supposed to without requiring more intervention ie blood transfusions etc . I've also just started my oliparib journey, alongside Avastin. Not feeling too good. Thinking of you, I'm sure the doctors will want to work with you and find the best solutions. All the best xx
Thank you for your kind wishes. They are reciprocated. I was told by the onc. things settle down after the first three months, so I hope that proves true with you.