Blood Results

Hi

Quick update. Just received blood test results from GP. All within usual range except CA125 which has gone from 35 to 43.

Seeing consultant later today, but looks as though Niraparib might not be the answer for me.

Mind working overtime on what might be next.

Best wishes to all

Janet

[SCWI]

Hi Janet

I hope your consultant has some reassurance for you. I am in the same boat on Olaparib: it all seemed to be going well for six months but mine has gone up from 24 to 35, but my oncologist is not worried. I don’t know if you have a BRACA mutation? I guess a lot depends on how quickly the numbers rise or not. Last time mine rose very slowly over a couple of years and then accelerated. I send you fellow support and know that you are not the only one worrying! Love Sophia xxx

[Hidden in reply to SCWI]

Hi Sophia,

I do not have a BRACA mutation. CA 125 only reached 79 at highest point before second line chemo. Last scan showed very small increase in size of lymph nodes.

Real Rollercoaster of a disease, (and I never liked rollercoaster)

Sorry you are in a similar predicament. This seems to have been going on for so long.

Love and Best Wishes

Janet

[Lorent in reply to SCWI]

Hi Sophia here's hoping they find something else to keep it at Bay for a while longer, it does help knowing that you are not the only one,

sending hugs 🤗

Loren x

[SCWI in reply to Lorent]

Thank you Loren, and the same goes for you. Hugs and strength xx

[Lorent]

Hi Janet, I'm also in the same boat I have been on olaparib since last August, CA risen from 30 in Feb to 63 this month, wasn't due to have a scan until August my oncologist will repeat ca on 30th May then scan, it's hard not to focus on it, but try keep yourself busy ..... Sending hugs ...🤗

Loren x

[Hidden in reply to Lorent]

Thanks for reply

Fingers crossed for everyone

Love and Best Wishes

Janet

[SCWI in reply to Hidden]

Yes fingers crossed for all of us brave people!

BTW I’m hoping to go to London for the Ovacome Members Day on Saturday 18th May. They have some great speakers. I wonder if anyone else is going?

Love and hugs

Sophia xx

[dieneke in reply to SCWI]

Hello Sophia, yes I will too. Looking forward to it. Dieneke

[Lindaura]

Dear Janet,

How disappointing for you! I hope you get some answers soon.

Did you ever ask about that equivocal ct scan report you looked at?

I guess you are not BRCA positive?

Treatment options are daunting and if this PARP is not working, perhaps there is a trial that will.

Fingers crossed over here, too.

Hugs,

Laura

[Hidden in reply to Lindaura]

Hi Laura

Consultant today happy to continue Niraparib but bringing Scan forward.

She is quite certain of original diagnosis as it went to more than one MDT. I am not BRCA positive. See her again in 4 weeks and Scan planned before that. If bloods or Scan show more change it's back to chemo.

Nurse had difficulty getting blood yesterday as veins have had enough!

Still hoping CA125, aches and pains etc just a side effect of medication..

Hope you are still coping well with tablets and continue to do so.

Best wishes as always

Janet

[Shorty864]

Dear Janwen52, I stopped taking Niraparib two months ago - it had stopped working for me after 9 months and am now back on Carboplatin and parlitaxel which were so successful back in 2013. My CA125 levels had gone sky high - 8000, but are now back to 800 after 2 sessions of chemo - tomorrow I have my 3rd session. My oncologist is very pleased and is hoping to get me on an immunotherapy trial at the end of the chemo - whenever that maybe. Still have liquid on my lungs, however; this will be hopefully drained off by the district nurse. I think there is aways something or at least I like to be positive and believe there will be something out there.

All the very best my dear. Anne xxx

[Hidden in reply to Shorty864]

Dear Anne

Many thanks for reply. I have been on Niraparib since August last year. Besides having a dose reduction very few problems except rising CA125.

Oncologist wants to leave chemo as long as possible but guess it will end up back on carboplatin again as taxol and Avastin were too potent for me.

Next appointment with oncologist 5th June and hope for Scan prior to that.

Very best of luck with your treatment and hope all goes well today

Best wishes

Janet