Hello. I would be very grateful if anyone on Lynparza could share their experiences - side effects, how long you have been on it and did it reduce your tumors. I have liver and lung lesions. My brain tumors are now hardly discernible on MRI and Pet/CT.
thanks. Maria
Hi Maria, yes! I switched from iBrance (after 2 1/2 years) to Lynparza around last summer. It has been going great for me! I feel very good, no side effects at all for me. Maybe a wee more tired when I first started on it but now all fine again. My TM a have continued to keep going down to much lower levels which has been very reassuring too. My last scan a couple of months ago was “stable” - no real details on that. I know the fear of switching drugs but keep positive thoughts. And I hope it works as well for you too. I’m very happy to hear your brain Mets are shrinking. Take care, let us in now how it goes
Thanks very much for the reply. It is very reassuring to know that Lynparza is working for you. Are you taking 2 x 150 mg tabs twice a day (4 tabs a day)? So you’ve been on it for a year now. I hope and pray that it continues to lower your TM and keep you stable.
❤🙏🏼
Thank you! Yes I feel blessed that they work! And yes that’s my dosage . I do make sure I drink a heap of water when I take them. Otherwise I feel as though I can slightly sense them in my esophagus. So I drink nearly 2 full glasses with the two pills. If I don’t do that, and then I start teaching straight afterwards, I have to start clearing my throat like crazy too. So just as I did with the iBrance, I suggest keeping yourself very well hydrated throughout the day
Thanks for the tip. Are the tablets big ? I have a problem swallowing big pills but I manage to drink Xeloda okay. I will make sure I drink lots of water. Do you take the pills with food?
You should be okay, they’re the long tablet shape but not too fat. Nowhere near as big as my calcium tablets! Drink a little water before you begin just to help have a very moist throat and avoid anything sticking. I don’t worry at all about food. You’ve got this no problems!
Thank you so much. I love that you are so upbeat. If that is a side effect of Lynparza then I’ll have some of it😊
Hi there - my Dad who has MBC withBRCA mutation was on Lynparza and he has a good run with it. Lowered his CA27.29 from 2200 to 126 in 6 months and scans much improved. He had to move on recently to Xeloda since he had progression in liver and bile ducts. I hope you have great results with it!🙏
Thanks so much for your reply. How long was your dad on Lynparza? I am moving from Xeloda (22 months) to Lynparza. I hope Xeloda works well for your dad as it worked for me and I hope too that the Lynparza works well for me as it did for your dad.
He was on Lynparza for about 9 months. No side effects and it really knocked the cancer back. I wish it would have lasted longer…and I hope you have a good long from it!
On Xeloda, the Hand and Foot syndrome and fatigue has been a bit rough. He was on 5 pills 2x a day 2weeks on, 1 week off. Just switched to “metronomic dosing” of 2 pills 2x a day with no time off which I learned about on this board. Hoping it improves the side effects. What was your experience? Does your Onc monitor ca27.29? If so did you see a reduction?
All my best to you!
I was the one on metronomic dosing 500 mg tabs 3xday no day off. My onc uses CA15-3 and CEA but the Xeloda did work well for me. About 8 months ago, my onc decided to add Navelbine oral 40mg 3xweek (MWF). The effect was even better but my bilirubin reached 2 and the high normal was 1.2 so I had dose adjustment on the Navelbine. When the bilirubin went below 2, I resumed the old dose of Navelbine. At my last scan though, I had progression to my lung and liver lesions so my onc decided to switch to Lynparza. I believe though that the Xeloda will work again if I go back on it after I try other meds. Is your dad’s BRCA mutation based on the tissue genomic test or is it the kind that can be passed on to his children?
It’s my understanding that both BRCA mutations have a 50/50 chance of being passed onto the child
Thanks
You might be interested in Greenwhite63's extra information about her family's medical history in her comment below.
I start Lynparza on Monday 1st August. Hope all goes well. I will update you.
Sorry for the delay in getting back to you on this. His BRCA was through genetic testing. He is youngest of 12 - 10 boys and 2 girls. 6 off them ended up with breast cancer. So the 50% was spot on here. I tested and have BRCA, but good news both my girls lucked out and are BRCA negative. Much more important for them to be negative! I have not had my boy tested yet….
Wow, that's quite an interesting family result from a scientific perspective! I'm so happy to hear your girls are safe from the mutation. Hopefully your son will be too. The extra good thing about that is now your girls don't have to worry about passing it on either. If I recall correctly, it doesn't skip generations.
I actually thought that BRCA only affected the female line. Now I know that it can affect both male and female. Many thanks for the information. I am happy for your girls that they are BRCA negative. Hope your son tests negative too. My case is different because it was my tissue sample that had the BRCA mutation but my genetic test showed that I am negative for BRCA.
Well you just taught me something! I thought it was 100% genetic.
The actual test is called Tumor related Genomic Test. I submitted a tumor biopsy from my lung and from there they tested it for mutations and also suggested what meds will work for me and what is resistant. So I have the Pik3ca mutation so I can take Piqray. My other mutation is BLM, BRCA2, RAD 51 for which Olaparib is recommended. So my tumor is BRCA2 positive. The BRCA test which is tested through blood and saliva revealed that I was negative which was great news because I have 3 daughters.
My Dad just had the Genomic testing as well. No other mutations to speak of. That is actually good news to test positive for the PIK3ca…more options if needed down the road.
Yes, I was so relieved when they tested negative!!
Anyone have info about cardiac effusion with mbc?
Anyone go on Verzenio after Ibrance stopped working?
Diet: anyone completely off sugar?
Oophorectomy, anyone?
