Parp inhibitor

[Lizzieanne]

Think after my final chemo will be put on a parp inhibitor. My question is will my hair regrow, from loss through chemo. Also will it be sparse because of the inhibitor. My cancer returned after 18 years, I am now 75, and I lost my hair with that treatment but it came back same colour and no grey. Think it thought it was only 18 years old. Wigs are good now but not that comfortable and like most ladies my hair is part of my identity. Any advice as to which inhibitor members have found to be most manageable, though I realise this maybe very individual. I was very fit before recurrence and I am scared I will not get back to feeling healthy again and that is something I have to accept for a hopefully longer life. Thank you.

[Newbie_2020]

My understanding is that the choice for a Parp inhibitor is whether you are BRCA positive or BRCA negative as it is condition for funding. If you are BRCA positive, then Lynparza (Olaparib) is what they have been prescribing; Niraparib (Zejula) can be prescribed for both BRCA positive and negative. Their side effects overlap with some specific ones for each.

I very much hope that everything goes as planned and you'll tolerate Parp very well.

[Lizzieanne in reply to Newbie_2020]

Thank you. Think olparib can be given now if you dont have the BRCA gene. Going to check this out. X

[Newbie_2020 in reply to Lizzieanne]

I had read in here that some oncologists have been prescribing Olaparib to BRCA negative (not sure if this was part of trials or not) but it hasn't been explained to me in this way when PARP was discussed as an option.

[Lizzieanne in reply to Newbie_2020]

Had a look on Target ovarian cancer and you are rivht just if you have BRCA gene. Thanks fr yr help

[Newbie_2020 in reply to Lizzieanne]

All Parp work in the same way. I hope you'll be able to tolerate Niraparib and it works well for you.

[Doglover1410]

I’m BRCA2 positive and have been on Niraparib for nearly 2 years. Most of the time I feel very ‘normal’ and almost able to put it all to the back of my mind! I’ve had no side effects and it has been very do-able. I walk about 5 miles every day and work full time. I hope you get a good experience on your PARP! x

[Lizzieanne in reply to Doglover1410]

That is very encouraging. My husband and I were big walkers before my recurrence. It is my cure all. To see you are walking 5 miles is great. Thank you. A PS just heard do not have BRCA gene.

[Katmal-UK]

Hi, I have been on Olaparib for nearly 7 years. My hair is good, in fact my hairdresser doesnt even bother asking if id like conditioner because its in that good a condition. Ive found Olaparib very tolerable with some bowel issues and dizzyness due to low BP but overall I have a good quality of life and continue to work full time. Big Hug, Kathy xx

[Lizzieanne in reply to Katmal-UK]

Thanks Kathy. Read about olaparib and would really like to have this but dont have BRCA gene. Think I read somewhere that I maybe considered for this but also read you can only have it if you have the BRCA gene. Great to hear about your hair. Keeping my fingers crossed mine will be good again. X

[Katmal-UK in reply to Lizzieanne]

Hi, They have trialled Olaparib on non BRAC patiens, not sure what results are. Whatever you end up on I hope it works well for you xx

[win_56 in reply to Katmal-UK]

Hi Kath what doseage are you on if you don't mind me asking

[Katmal-UK in reply to win_56]

Hi, im on 600mg per day.

[Rhonddalady]

Hi Lizzieanne, I'm in my 2nd month of taking PARP inhibitor Olaparib. No side effects so far. My hair started growing back back after my 4th chemo, my operation was postponed at first, which meant I had 10 weeks before I was back on chemo .after 5th chemo my hair fell out again which did surprise me .

My hair is starting to grow again, although strangely the first time it was dark and seemed strong, this time it's very light grey and wispy. I'm not sure how its going to turn out just hope it's not too thin, my hair was shoulder length before chemo, and I do miss it.

Like you I'm not comfortable in a wig, I usually wear scarves or hats. I've just turned 70 and hopefully my energy levels will get back to normal soon .

You've done amazingly well for 18 years and I'm sure you'll do just as well again. I feel really positive that these PARP inhibitors will give us the chance to live longer with this awful disease.

Good luck with your treatment ,

Jan xx

[Lizzieanne in reply to Rhonddalady]

Thank you for your positive response. First time my hair came back with a lovely soft curl but it didnt last. It then went back to dead straight but thick. Like you mine was a longer length. Think yours will change again. I also wear turban like headwear made of bamboo lovely and soft. Have two wigs and they look good. Mind you when i have worn all day its a toss up to which gets taken off first, my bra or my wig. X

[Lizzieanne in reply to Rhonddalady]

Forgot to ask are you BRCA positive please

[Rhonddalady in reply to Lizzieanne]

Yes BRCA1 , strangely this week I've been feeling totally exhausted and weak, had blood test which was ok, so have to leave off medication for a week to see how I respond . I am hoping it just means a lower dose . My mood is also quite low , which is unusual for me. Fingers crossed !! Wishing you well with your treatment 😊

Jan xx

[Lizzieanne in reply to Rhonddalady]

Thank you and sorry to hear you are feeling low. Think these dark miserable days are not helping us and of course the virus. Hope they sort your medication out for you and that helps you pick up. I also wish you well with your treatment. Take care x. Have fingers crossed

[Rhonddalady in reply to Lizzieanne]

Thanks Lizzieanne x

[Jacky5]

Hi Lizzieanne

I'm taking Olaparib too following chemo. I'm brca2 positive. I had fine wavy hair which has grown back very curly! Styling it is a challenge....but its hair and I'm grateful. I too wasnt a fan of wigs and used hats and scarves.

Regarding olaparib, I've been taking it for 10 months. It hasn't affected my hair. I had some abdominal pain on and off and some joint pain (could be down to the chemo) but nothing that would put me off. I feel normal again and positive for the future now that I'm taking a parp.

Wishing you all the best .

Liz.x

[Lizzieanne in reply to Jacky5]

Thank you so much for your positive reply. Think your hair may change again. Mine came back curly but eventually returned to how it was before. Its so good to have all these replies and support. X

[SUE7777]

Hi Lizzieanne, you may find this helpful as it has lot's of information especially on parps

ovacome.org.uk/webinar-reco...

All the best Sue xx

[Lizzieanne in reply to SUE7777]

Thanks Sue will check this out x

[Numi]

I've been on Niraparib for 3 years and my hair, which grew back quickly (albeit a totally different colour) after chemo is thick and strong. Everyone reacts slightly differently to parp inhibitors, so there's no predicting what your experience might be.

[Lizzieanne in reply to Numi]

Thanks Numi. Good to hear about your hair and to read members very positive response to parp inhibitor s

[Caleda4]

Hi , I am BRCA negative and will be going onto the parp Rucaparib having finished my chemo carbo / gem on 16 Oct. CT scan booked for tomorrow,then on the 19 a Consultation with Oncologist. My hair just thinned a bit whilst on the chemo which was great but I must admit nobody has mentioned anything about hair regarding the parp. The treatment I have just finished was my first recurrence by the way,after almost 5 years free of disease. My hair grew back well originally..

I hope things turn out well for you,.

Take care and stay safe.

Caleda x

[Lizzieanne in reply to Caleda4]

Thanks for your reply. Would be interested to hear how you get on. Good luck with your scan and future treatment. Keep well and here's to a successful outcome x

[Caleda4 in reply to Lizzieanne]

Thank you, I will let you know how the Rucaparib goes,x

[Pianoplayer731021]

My hair started to come back after the taxol chemo infusions. They put me on a parp and I think it slows it down. My hair came in thick and white-gray, but is only an inch long. Good luck with your parp maintenance, because I am having bad side effects with my blood counts from Zejula. I had 1 blood transfusion and now my count is bad again. They take me off for awhile to build me up and then start up again. I have neuropathy and low blood counts which cause shortness of breath and dizziness. They might give me the lowest dose possible or maybe they might take me off permanently. Time will tell, not feeling the greatest.

[Lizzieanne]

This is what worries me. Have one treatment left but not giving me taxol with this one because of bad neuropathy. I am going to go thru all my replies and note down what members have shared. See they say if one parp doesn't work then others won't. Oplarib seems good but you have to be brca positive. Sorry that Zejula is making you feel so rotten. Do hope you can be given something that you can cope with. Thank you for your reply