Latest scan update

Hi ladies

Got my latest scan results Wednesday.

Very slight disease progression (lymph nodes grown by 2 and 3mm)

CA125 up from 43 to 45. Onc happy to keep me on Niraparib as she says if I was on a trial for this it would count as stable disease

Agreed to continue this with the option of more chemo. If things change before next appointment in 9 weeks time.

Between the devil and the deep blue sea!

She says the chemo will have a better effect the longer I can keep off it.

Hope everyone is doing as well as possible.

Best wishes to all

Janet

[Lindaura]

Dear Janet,

Not the news you were hoping for.

I, too am trepidatious about my next appointment. I am seen every 4 weeks in Niraparib, so you should be also.

Was that a typo, or do you really have to wait 2 months?

My CA-125 has stayed at 15 for the first month, but even though I am BRCA1 positive, I still worry that the PARP is not having the desired effect.

A lot of that has to do with the fact that I feel so well. Now I wish I had started on the highest dosage, since it seems to not effect my bone marrow at all.

So, pins and needles until the next blood test and appointment, just 11 days away!

One question: I am terribly thirsty all the time now. Drinking litres and litres of water. Is this happening to you?

Hope you remain stable and keep feeling great.

Hugs,

Laura

[Hidden in reply to Lindaura]

Hi Laura

I have blood tests with GP in 4 weeks and see nurse the day after to pick up next course of tablets if bloods okay.

Repeat of this 4 weeks later and see Onc week after that.

I too feel quite well although feeling nausea still a nuisance, don't want to take Meds if not necessary.

Blood results this week quite good again.

I do get very thirsty but probably don't drink enough. Should really keep a check on it.

Find fizzy water more thirst quenching.

Lots of luck with everything.

Best wishes

Janet

[Orsolini]

I’d call that a positive result. Good luck. Xx

[Maxjor]

I would take this as positive news and hope you can stay on it for a long time. I started to go up by 2's on my PARP around November 2018 (started in April 2018) and only had to stop now--meaning I kept on the PARP only for another 6-plus months which was great and helpful to be off chemo longer. Maybe yours won't keep rising. My onc said he has seen small rises then leveling off too. He was fine with my numbers going up until I started to have symptoms. GOOD LUCK!!! oxoxoxo Judy

[Hidden in reply to Maxjor]

Hi Judy

Many thanks for reply. Never had any symptoms except those which seem to have been caused by chemo. Main problem been really dry eyes, tried everything no soloution yet.

Wishing you lots of luck with everything

Janet