BRAC 1 gals, please share experience on PARP In... - My Ovacome

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BRAC 1 gals, please share experience on PARP Inhibitors Olaparib and Rucaparib

healmejesus1 profile image

After having two bad reactions to Carbo Platen in May and declining additional Chemo, I am now considering a PARP Inhibitor due to a drastic rise in my CA 125 (now over 7K) and abdominal pain and swelling. It feels all to familiar.

I’m getting a CT scan Wed. after having one just five weeks ago that reflected stable disease. I would love feedback from anyone that is taking either of these drugs.

Blessings,

Terri

10 Replies

Hi, not BRAC1 but am BRAC2 and have been on Olaparib for 4 years 9 months. Doing very well. There is a group on face book, Parp Inhibitors and you might want to post your question there as well as there are ladies with tumours who are seeing their tumours shrink. Im NED so very lucky at mo. I hope you make the decision thats right for you. Kathy xx

Thank You so much. I’ll tune in to the group on Facebook. I’m so grateful you are doing well.

Blessings,

Terri

Hi Terri

I’m BRCA 1 I had olaparib after 2nd line treatment. I have primary peritoneal cancer, I was able to get 10 months and had very little in the way of side effects, in fact I worked full time in a very full on job. I think that may have been my downfall, undoing all the good work the tablets were doing., as I needed 3rd line chemo. There are loads of success stories with parp inhibitors. Good luck with it

Di xx 🌻

healmejesus1 profile image
healmejesus1 in reply to DianesK

Bless You! I think it’s my best next step but I do wonder the range of time that PARP’s have offered patients during late stage OC.

I’ll ask my Dr. when we go over my scan.

What treatment are you on at present?

Are you still working?

Blessings,

Terri

DianesK profile image
DianesK in reply to healmejesus1

Hi Terri

I’m not working at the moment. I’m just about to start weekly Taxol having had a few bowel obstructions.

I’m still smiling and new options pop up all the time. There is some great feedback from the ladies, we all have such different outcomes, you can only take it one step at a time.

Take care xx 🌻

Hi Terri,

I'm Brca1 and have been on Rucaparib since May, after carbo/caelyx treatment for first recurrence ended in April. Didn't get to NED but ca125 did go down from the 20's to 11. Not sure if it's still working as ca125 has crept up a few points at my last 2 clinics (usually a good marker for me). It has been very easy to tolerate, I get hot flushes and skin is v sensitive to the sun, some blisters on hands/feet but otherwise ok. Wishing you the best, Michelle xx

Thank You for your feedback. How many treatments have you had of the PARP or is it a daily tablet you take? Is your Dr. able to measure it’s continued effectiveness by a blood

draw? I wonder how that’s monitored other than by the CA125.

So much to learn about...

Terri

Hi Terri, I take 1200 mg a day in tablet form (2x300mg am & pm). Have been on this regime since May and I have my ca125 read every 4 weeks, along with other blood tests (blood counts, magnesium levels etc). Hope this helps xx

Hi Terri--also BRCA2 so not BRCA1 but on Olaparib since April with tolerable side effects (joint pain and fatigue, both very manageable) and it took me from "small amount of seeding" left after Carbo/Caelyx to NED in three months. I am getting bloods done in two weeks to see if it continues. I feel fine and was so scared of the dreaded list of side effects that were possible but found in general, its not that bad. So much easier than IV drugs.

Wishing you luck in your decision. oxox Judy

I really appreciate your response and positive input about it. I think it’s one of the best next steps I can take at this point. Sounds like the side effects are much more manageable than IV chemo... 3 rounds b4 surgery and 7 since!

Onward and upward,

Terri

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