Parp Group

[27-359]

Hi. I believe there is a parp group some of you ladies have joined, and as I might be going into this treatment when I finish chemo, was looking to join it. Can you please tell me what it is called, and is it a Facebook group? I did join one group, but it is American, and their protocol is not always the same.

Jenny

[Caleda4]

That sounds interesting,and I would definitely look to join if British,because as you say the protocol is different in other countries.I am going onto Rucaparib in about 3 weeks time. I hope your chemo is successful. Caleda x

[Katmal-UK]

Hi There is a Parp Inhibitors facebook page which I joined but subsequently left due to a bad experience. I was there for quite a time before that happened so please don't be put off as you may find it helpful. Just be aware that some ladies are not always as friendly and supportive as one might expect. I think I'm trying to say don't be put off by my experience. I am now in a smaller US group who are more supportive. Kathy.

[27-359 in reply to Katmal-UK]

What is the group called please

Jenny

[Katmal-UK in reply to 27-359]

Parp Inhibitors - Drugs and Trials

[27-359 in reply to Katmal-UK]

Thankyou.

[delia2]

Hi. I’m in the US and in two Facebook PARP groups. One has trials and research in the name and it’s the bigger one. In my experience the way PARPs are used is similar in the UK and US. Doctors have somewhat more flexibility in the US and I’m noticing one difference is that In the US people are going on PARPs a second time after a recurrence. But the dosages and side effects are the same issues. Most of the posts are about side effects. I personally have found Ovacom tremendously helpful despite differences in the healthcare delivery. The research on drugs is all transnational.

[27-359 in reply to delia2]

Yes. The Ovacome site is amazing.

[LochLevenLass]

Hi Jenny,

The Facebook group is just called “Parp Inhibitors “. I joined a couple of months ago, as am taking Olaparib. There are ladies in the group who have breast cancer, as well as the ladies with ovarian cancer. As far as I can make out, there are ladies contributing from the US as well as UK. Have had minimal interaction with group but have found it informative.

However, for breadth of knowledge & for the support given, I would definitely recommend posting any queries you have on this site. The ladies here are so supportive & you can ask them anything!

Wishing you all the very best for your treatment.

Fi x

[27-359]

Thank you for your reply.