Lynparza

[Izmeg]

Anyone out there on lynparza?

[Katmal-UK]

Hi Yes that's Olaparib , I have been on it on a trial for nearly 4 years. xx

[Izmeg in reply to Katmal-UK]

I am a 4 time survivor and after this last round of chemo this medication is the next step. No on in my area has been on it. Can you share some of the side effects you experienced? How bad are they? Are they as bad as the chemo side effects...meaning a s strong?

Hair loss...is there any? Sounds terrible but after for rounds and 8 years of growing and kissing hair I just need to prepare emotionally if I may be bald the rest of my life.

[Katmal-UK in reply to Izmeg]

Hi. No hairloss at all. Slight nausea sometimes, i work full time . it can cause loose bowel motions but thats all I have x

[Hidden]

Hi

I was on it for 3 months but I'm one of the very small minority that it didn't work for- it's very successful for other ladies on this site!

Best wishes

Juliet

[Izmeg in reply to Hidden]

What happened if I could ask? I would like to be educated either way.

[Hidden in reply to Izmeg]

Hi

Olaparib is primarily licensed for BRCA positive in blood and for people in remission - I have BRCA in tumour (called somatic) and I had active disease and it seems not to be so effective in this situation. I i know of at least 3 ladies in Ireland and UK who have been taking this for a number of years and have remained in remission.

Best wishes

Juliet

[Hidden]

Yes. Been on it for just over three and a half years.

[Izmeg in reply to Hidden]

Can you share any side effects? And I know this sounds terrible but does it cause hair loss?

I am a 4 time survivor and I just don’t want to be bald all my life. Lol

[Ovariancancer in reply to Hidden]

Hair loss yes,lots of side effects in my case.

[Hidden]

I haven't had hair loss as such, just thinning. I have noticed that my hair drops in phases - sometimes my hair brush is full of it - while at other times there is no loss, and the hair seems to be in a growth phase. The same is true of the hair on other parts of my body. Odd. I currently have long (if rather fine) hair.

I think you will find, if you read the personal stories about this drug across the various ovarian cancer forums, that responses are highly individual. For example, I read today that some women have an increase in appetite and put weight on, while others (me included) experience a loss of appetite and consequently some weight loss.

For some, nausea is a major side effect, for others (me included) it is not.

My reading of the situation is that some people can't tolerate the side effects, while others hardly have any side effects at all.

The main side effects for me have been sleep disturbance and heartburn, with occasional fatigue.

I would advise not trying to second guess this drug - you just have to get on it and see how it goes. And I would suggest giving it a couple of months to bed in.

[Marina1028]

Hi All! I just started this drug today. I'm hoping the side effects are not to bad. Sending my best to all you wonderful ladies!

[sunnykatz]

This is my 3rd day on lynparz. 2015 I was diagnosed with stage III ovarian cancer and cancer in the lining of my tummy I forget the name I had chemo and surgery and debulking. After that I had chemo went into remission nine months later it came back then I had more chemo went into remission six months later it came back . Because I am brca positive my doctor recommended I take lynparza. My chemo rounds were not over but in the middle he put me on lynparz.I already have some side effects like a very weird taste in my mouth tiredness and muscle aches it’s been only three days has other people experience this in such a short time. Also has anybody have a couple reoccurrences and a short time and now have been in remission for a long time being on lynparza. I am 48 yrs old and have been looking for a support group concerning ovarian cancer and reoccurrences in such a short time plus being on this new medicine. Also braca positive. I would really appreciate your replies and testimonies God bless

[mupash in reply to sunnykatz]

HI- JUST SAW YOUR POST, 2 YEARS AGO. I WAS SEARCHING A QUESTION ABOUT LYNPARZA. I WAS WONDERING HOW YOU ARE DOING ON IT. PLEASE LET US KNOW. I HOPE YOU ARE DOING WELL AND IT IS DOING ITS JOB.

LEE

[Ovariancancer]

Yes,almost 3 years ,lots of side effects and hair loss, working full time..