PARP side affects

[Harp-1]

Hi! Everyone

Anyone taken PARPs.. how long we need to take for an ovarian cancer..do they have as bad as side-affects of IV Chemo

Thanks in advance

[Katmal-UK]

Hi, I started trialling Olaparib in jan 2014 after completing chemo in late Nov 2013 and being told I was NED in late Aug 2013. Despite a couple of manageble side effects it been fine and I remain NED with a CA125 of below 3. This is the third drug I have trialled and by far the easiest to tolerate. Side effects for me are manageable, nothing like IV Chemo. I have continued to work full time x I wish you well. Kathy x

[Pianoplayer731021 in reply to Katmal-UK]

Did you ever get low blood counts ? I did on 200 mgs. on Niraparib. I needed a blood transfusion and stopped the med for a short bit. Now I am trying just 100 mgs. with weekly blood work for awhile. Hope you continue feeling good. Donna

[Katmal-UK in reply to Pianoplayer731021]

Hi Donna. No Ive always been on 600mg and never had an issue with bloods. Im good, hope the meds work for you xx

[Pianoplayer731021 in reply to Katmal-UK]

Thanks Katmal-U.K. I live in the U.S. Donna

[delia2]

Hi. I’ve been on Olaparib for 7.5 months. Most people take them until they stop working but some go off after two years. At first you may be tired and nauseous but you can take anti nausea meds and naps. Gradually the side effects go away. Often people have a dose reduction especially if blood counts are low. I’m only on two thirds the full dose of Olaparib. Good luck!

[Pianoplayer731021 in reply to delia2]

I’m down to one third of Niraparib, because of low blood counts. I see that you take Olaparib, maybe it’s a little different on how your blood reacts to it. They dropped me from 200 mgs. to 100 mgs. now, because I needed a blood transfusion on the stronger dose. They are watching my blood every week to see how I do. Good luck with your medicine. Donna

[bamboo89]

I started Niraparib 6 weeks ago, but had to stop after 4 weeks because it raised my blood pressure quite a bit which is novel for me because my blood pressure has always been quite low, sometimes too low. Now on blood pressure meds trying to get it under control before restarting the Niraparib. Side effects I noticed while on it were, in descending order of importance, difficulty sleeping, only managed about 4 or 5 hours a night; fatigue, no energy; sore mouth; runny nose, cough, dry eyes. I think some of those effects might have got easier after 3 months, but obviously I can't say about that. I will go back on it because it looked like it was slowing down the rise in my cancer marker when I had to stop, so I'll try it again, but if I'm honest, I feel a lot better now I'm not taking it, being able to sleep 8 hours at night is heaven...

All the PARP drugs do is slow down the cancer, in some cases for years, in others for a few months until you need chemo again. You take them as long as they are working and as long as toxicity is not a problem.

Miriam

[K95m]

Hi HarpI have been on niraparib for 29 months now. I did have side effects and had a dose reduction to 200mg. My blood pressure was high on it and they wanted to start me on meds, I refused and thankfully my BP came down in time. I’m still a bit of an insomniac but rest during the day if needed. I take anti nausea meds which keep any sickness at bay. My liver function was off the scale initially and we stopped the Parp for 2 weeks and now my liver function is normal.

You will unfortunately get some side effects , however they mostly lessen over time. I’m glad I persevered and didn’t start other meds for the side effects as I think I’m taking enough as it is !! I don’t believe in a “pill for every ill”

I say give the meds a chance if you can.

[bamboo89 in reply to K95m]

You were lucky your blood pressure came down, glad it did. I took the BP meds because I was sick of the stonking headache and unpleasant, throbbing pressure in my neck and chest, which apparently was because of the raised blood pressure - it was those symptoms that made me check my BP in the first place. If I hadn't had those symptoms,I'd never have known it was high at all, because my hospital doesn't check what the BP is doing...

Miriam

[K95m in reply to bamboo89]

Hi MiriamSorry I wasnt knocking anyone taking Blood pressure meds. I’m sure if Id had symptoms of it I would have taken meds too. I didn’t feel any different or in any way ill so decided to try to get it down naturally. Sometimes I feel doctors are way to quick to get out the old prescription pad. I have thyroid disease and take meds . I was recently diagnosed with type 2 familial diabetes. My doctor and I are going down the diet route first. Already cutting back on carbs is starting to bring my numbers down. Hope you jeep well.

Kay

[bamboo89 in reply to K95m]

Oh, don't worry, I didn't think you were knocking anyone - if I could have avoided taking the BP medication, believe me, I would have done. I did ask, but the answer was no, it had got too high, and I was feeling it, never had high blood pressure before, its always been a bit low actually. I'm told, when I restart the Niraparib, it will go up again, so have to keep on the meds for BP, and might need to add more, unfortunately. Blood pressure restored to normal at the moment, a delightful 122 over 79 again, starting back on Niraparib tomorrow night, fingers crossed...

Good luck with the diet - my sister got rid of her diabetes type 2 completely, but she has to stick to the diet - well, most of the time!

Miriam

[K95m in reply to bamboo89]

Thank you Miriam. Good luck with the Parp this time.