HI LADIES,
I HAVE BEEN ON OLAPARIB SINCE DECEMBER, 2019. I HAVE TO SAY I HAVEN'T HAD A GOOD DAY SINCE. THE FATIGUE, DIZZINESS, GENERAL WEAKNESS, LOW BP HAVE BECOME A WAY OF LIFE WHICH KEEPS ME DOWN MOST OF THE TIME. THE WORST IS FREQUENT BLADDER INFECTIONS (WHICH I NEVER HAD BEFORE) AND DIARRHEA. IF ANY OF YOU HAVE FOUND MEDS OR WAYS OF DEALING WITH THESE IT WOULD BE VERY APPRECIATED.
HOPE YOU ALL ARE DOING WELL!
LEE
Hi Lee I think you may be aware I have been on Olaparib for over 6.5 years now and experienced all of the side effects you have. What I will say is that things improved for me as time went on. You need to find what affects the diarrohea, what foods make it worse. My trigger tends to be onions or anything spicy or I eat loads of veg in one sitting or stuffing. Doesn't mean I don't eat these things but know I will pay the price. I had the bladder infections to the point where my GP referred me to a specialist who wanted to carry out a cystoscopy to which I said no, but after a time they became less frequent and eventually stopped. Still get the odd day where I have to drink cranberry juice or take a sachet or two of cystitis powder but again that's infrequent now. The fatigue is better though after a full week at work on Saturday I tend not to be able to function well. Rest is the answer and pacing myself. The low BP I get on standing or rushing about so know to stand still or sit down until the dizziness passes. Overall things hopefully will improve . I hope things improve for you soon, it probably took me about 9-12 months. Kathy xx
HI KATHY,
THANKS AGAIN FOR RESPONDING. I'M JUST ABOUT READY TO GIVE UP ON THIS. I DIDN'T THINK IT WOULD TAKE THAT LONG TO ADJUST TO THIS. MAY I ASK WHAT POWDERS YOU TOOK FOR THE BLADDER INFECTION? THEY KEEP PUTTING ME ON ANTIBIOTICS AND WE KNOW HOW THEY ADD TO THE DIARRHEA PROBLEM. THE LOW BP IS A PROBLEM BECAUSE I'M ON BETA BLOCKER TO CONTROL THE HEART RATE. THAT LOWERS BP AS WELL SO I DON'T TAKE THAT PILL TOO OFTEN ANYMORE. DID YOU GET ANY NUMBNESS IN YOUR FEET AND LEGS?
I'M SO GLAD YOUR SCANS WERE CLEAR. YOU ARE THE POSTER GIRL FOR OLAPARIB! YOU'VE ALWAYS BEEN THERE TO HELP AND I WISH YOU THE BEST HEALTH ALWAYS.
XXX LEE
Hi Lee. Try and stick with it, I didn't feel that great at the beginning but it's paid off. Maybe speak with your dr to see if the dose can be reduced. I know of others who have had to reduce the dose. What is your daily dose? I just take 'cystocalm' or the like (asdas own) and that helps, that and cranberry juice. Seriously drove me mad in the beginning but is fine now. I have constant numbness in my feet but that's peripheral neuropathy from the Taxol from 12 years ago, not from the Olaparib. I still take betablockers but have days where the BP is a lot lower than others. I hope you can find a way through these side effects and that you see the benefits that I am having. Big hug xx Kathy xx
A GREAT BIG THANK YOU KATHY!
I AM ON HALF DOSE, 150MG. TWICE A DAY. I'VE ALWAYS BEEN EXTREMELY SENSITIVE TO MEDS., AND CAN'T IMAGINE WHAT THE FULL
DOSE WOULD DO TO ME. I WILL KEEP USING IT. YOU GAVE ME HOPE THAT THIS MIGHT GET BETTER. THANK YOU SO MUCH. I AM ALSO BRCA2. MY DOCTOR TOLD ME SHE HAS HAD PATIENTS WHO ARE BRCA2 AND HAVE HAD RECURRENCES. BUT AFTER OLAPARIB, IT NEVER CAME BACK. I TRULY BELIEVE YOU ARE ONE OF THOSE. I'LL DO MY BEST TO JOIN THE GROUP TOO! I'LL TRY TO GET THE POWDER YOU HAVE USED FOR BLADDER INFECTIONS...NEVER HAD THEM BEFORE, NOT EVER.
STAY WELL AND BE SAFE!
MANY THANKS,
XXX LEE
I think you and I are on same timeline , I started in January . I think the fatigue is the worst thing and my energy levels are low, but if I make myself I can do most things . I can play 18 holes of golf on downs, but I need a good rest after !!!!!! . I do get dizzy and my bladder feels ‘odd’ but not infections. No diarrhoea, rather the reverse . I think we need to persevere if possible, I feel like it’s my only chance for a few more years .( I’m quite old and stage 1V) .At the moment I’m praying as have had niggle /ache in groin for 3 months . Back in March Ca125 was ok, I haven’t asked since as too scared it’s gone up. Onc phoning in August so I guess I’ll find out then??? They just gave me a months supply of Olaparib so another month of living !!!!
Anyway I do hope your symptoms improve . I do think I don’t expect to feel as I used to??? Might be easier for me as I can rest when I need to as retired , harder for you younger ones I suspect
Keep going , it’s a lifeline
Jennifer
I am not unaware. But the medication I was on that's very similar side effects. The doctor recommended the nutritionist. So one thing I did find out is that I was low in vitamin d, zinc and some other stuff. The medicine was depleting my body of a lot of these heidemann's and it was making it impossible to keep my energy at a baseline. It may be worth having a doctor recommended nutritionist test for some things that might be interfering with your body's ability to process nutrition and so on. They can recommend some supplements that will not interfere with your chemo process. It's important though to get some lab tests done because I wouldn't recommend just going out and taking a bunch of supplements. If I had taken vitamin d without this other supplemented never would have processed through properly and I would have just made things worse.
Good Morning LEE, I have recently been given a new drug, in tablet form, for frequent UTI’s. it’s called URO-VAX. It’s an oral vaccination prescribed by my Urologist. The drug is administered for 3 months, with no side effects. I have never been infection free for so long. A couple of days after the treatment had finished in June I had an infection but the Urologist says it’s only given for 3 months as it is a vaccine. However, I still have never had such long infection free Period whilst on or off chemotherapy. Urology will revise the situation in a couple of months.
I’m on Rucaparib at the moment but that appears to be ineffective as my CA 125 has been rising slowly but surely. I had a CT scan yesterday so I don’t know what the future will bring. Good luck with Olaparib. I hope you find a way to endure the awful side effects.
Love from Angela xx
HI ANGELA,
THANK YOU FOR THE INFORMATION. I WILL DEFINITELY ASK THE DOCTOR ABOUT IT. I'M SORRY TO HEAR THAT YOUR NUMBERS HAVEN'T GONE DOWN.
I'M KEEPING MY FINGERS CROSSED THAT YOUR SCAN IS CLEAR. PLEASE LET ME KNOW HOW YOU MAKE OUT. WE HAVE TO THINK POSITIVE ALTHOUGH I
KNOW IT'S NOT ALWAYS EASY TO DO. WISHING YOU GOOD NEWS!!!
LEE
Thank you LEE,
I just don’t know how to stay positive. I wish I did.
All the best to your recovery.
Love from Angela xx
Hi Lee. just thought I'd update you on my progress/or not. As I mentioned my CA 125 was rising steadily but m CT scan showed no difference from the last CT scan a few months ago so the oncologist prescribed 2 more weeks of Rucaparib until he's seen the result of my blood test I had today. I have a face to face appointment with him this Thursday July 30th. I'm terrified as always for what news might be waiting for me. I have another UTI at the moment so once more on antibiotics. Hope your problems are sorted now.
Al the very best,
love from Angela xx
HI ANGELA,
I'M SO SORRY THIS TOOK SO LONG. MANY THINGS GOING ON AND ONE IS MY COMPUTER IS ALL JUMBLED. WE HAD A GREAT DEAL OF LIGHTNING AND A LOT OF THINGS ELECTRONIC WERE SCREWED UP.
THAT NOTHING GOT BIGGER IS GOOD NEWS. I HOPE YOU HAVE GOOD NEWS TODAY FROM THE DOCTOR. PLEASE LET ME KNOW WHAT HE IS PLANNING. HOPE YOUR BLOOD WORK IS GOOD TOO.
LOOK FORWARD TO HEARING FROM YOU
ALL MY BEST,
LEE
Hi Lee , Just found this post again but I have already answered a few minutes ago. Hope you got it this time
Lots of love
ANGELA x
HI ANGELA,
JUST TRIED TO WRITE TO YOU IN CHAT AND THEY DIDN'T RECOGNIZE YOUR USER NAME??? I DON' KNOW WHY. I HAVEN'T GOTTEN A MESSAGE RECENTLY BUT 3 DAYS AGO. THINKING ABUT YOU AND WONDERING HOW THINGS WENT WITH DOCTOR. LET ME KNOW IF YOU CAN. I HOPE IT WENT WELL.
FEEL GOOD,
LEE
I have been on for 12 weeks and just had a blood transfusion. Started out at 600mg a day. After feeling so bad everyday, reduced dose to 450 mg after 7 weeks. After bloodwork for 12 week, Dr called and said I needed a blood transfusion. I had it on Friday, stayed overnight in hospital for observation, ct scan and some other test. Ct scan showed one tumor grew a cm but CA 125 went down 10 points to a 26 in 4 weeks and on lower dose. 450mg a day still made me feel very bad. So now on 300mg until Tuesday. See Dr then and see what he decides to do. Just being on 300mg a day and the transfusion I almost feel “normal” before I started taken Lynparza. Hang in there, just keep telling your symptoms and see what else you may have.
THANK YOU. WISH YOU THE BEST,
LEE
Thank you, so now off lynparza and May start a clinical trial that was offered to me. Thinking about it over the next few days!
HI-
SURPRISED THAT THE TUMOR GREW BUT CA 125 WENT DOWN. CONFUSING, BUT ARE YOU BRCA POSITIVE? THE PARP DRUGS ARE SUPPOSEDLY MORE EFFECTIVE FOR BRCA POSITIVE PEOPLE. WAS WONDERING IF YOU ARE. I WISH YOU THE BEST WITH YOUR NEW TREATMENT. LET ME KNOW HOW YOU ARE.
ALL MY BEST,
LEE
I am not Braca positive. So it helped to stabilize few areas but the concern was tumor on my liver.
Hi Lee, I typed a long reply to your post on Thursday and somehow lost it so here goes I'll try again. I saw the oncologist on Thursday 30 July who confirmed the CT scan showed no noticably change Neither growth or no growth of the tumours etc. so I was happy with that, except my CA 125 has risen yet again to 27, which is high for me so there's obviously something happening. The oncologist is fairly concerned about it but says leave things as they are for now and he'll see me in 3 weeks after more blood tests. He answered all my questions about no surgery and I'm inclined to agree that it could do more harm than good. He also confirmed that I would be able to have more chemo if necessary but it seems the Rucaparib is working in some way. It's 5 months since my last chemo and scan. I asked about Oliparab too but he said all parp inhibitors were similar and all had a similar effect. He was very kind to me as always but his final words were "I can never cure your cancer, you'll be on chemo for the rest of you life" 😔
Not 100% happy but reasonably happy.
I hope you're feeling much better on Olaparib now and it's doing its job for you.
Lots of love ANGELA xx 😘
HI ANGELA,
I JUST FOUND YOUR POST. I'M HAPPY TOO THAT THERE WAS NO GROWTH. SOUND LIKE THE PARP IS WORKING. MAYBE DOC IS RIGHT AND IT JUST NEEDS SOME MORE TIME. ALL IN ALL SOUNDS GOOD. KEEPING MY FINGERS CROSSED FOR YOUR NEXT BLOOD WORK. SOME OF THESE DOCTORS HAVE THE MOST TACTLESS MANNER. MINE ALWAYS GETS INTO THE CONVERSATION AT LEAST ONCE, "YOU KNOW YOU COULD DIE OF A HEART ATTACK" ( I HAVE SOME STENTS). I ALWAYS WANT (BUT DON'T) TELL HER, SO CAN YOU. CHARMING WOMAN! I DON'T THINK SOME ARE VERY BRIGHT OR SENSITIVE TO OTHERS. THEY PROBABLY DON'T REALIZE HOW DESTRUCTIVE THEIR WORDS CAN BE.
AS LONG AS THERE IS A DRUG THAT CAN KEEP US GOING LIKE THE PARP DRUGS, I'D SAY THE GLASS IS HALF FULL!!!
KEEP DOING WELL AND FELL GOOD,
HUGS AND XXX, LEE
Wonderful words of wisdom LEE
Thanks for the hugs and xxx
😘 love to you too xxx
HI ANGELA,
JUST WONDERING HOW YOU ARE DOING? I HOPE EVERYTHING IS GOING WELL FOR YOU.
HUGSXXX, LEE
Hello again LEE, I’m ok in a way but constantly worried about everything. The oncologist sent another 2 weeks of Rucaparib which will last until I hear from him with my blood results next week. Dreading it of course. Must try to remember “glass half full”
So difficult to put on a brave face for my little family but I do. How are you. You’re always so upbeat. How do you do it?
Lots of love and really kind of you to care.
Angela xxx
HI ANGELA,
GLAD TO HEAR YOU'RE STILL ON RUCAPARIB AND HOPEFULLY YOUR BLOOD WORK WILL BE GOOD. BELIEVE ME, WE ALL WORRY. TRY TO FOCUS ON GOOD THINGS AND KNOW THERE ARE MANY TREATMENTS AND MANY DOCTORS TO HELP US. THIS VIRUS DOESN'T MAKE ANYTHING EASIER EITHER BUT WE'LL GET THROUGH THAT TOO! JUST ANOTHER HURDLE.... THAT NO ONE WANTED. DO BE HOPEFUL. I'M KEEPING MY FINGERS CROSSED FOR YOU THAT YOU WILL HAVE GOOD RESULTS NEXT WEEK.
LOVE AND HUGS BACK - TRY TO RELAX!!!
LEE
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