Update: Have been to see consultant today for... - My Ovacome

My Ovacome

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Update

Angie1412 profile image
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Have been to see consultant today for results of scan. The cancer is still active with some fluid and my CA125 has now reached over 2000. Although she says there is not much change from last scan we have decided to stop the Niraparib a and have 3 cycles of carboplatin. After that she will decide whether to add something else to it for a further three months. There was nothing showing on scan so she thinks the pain in my right side is scar tissue. Chemo starts on Thursday. Here we go again. Take care everyone.

Angie xx

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Angie1412
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busbee3 profile image
busbee3

Good luck with your chemo on Thursday. It's good that you're still platinum sensitive, so you can have the carboplatin. I start a new chemo tomorrow. Caelyx didn't work for me. Feeling a little anxious.

Angie1412 profile image
Angie1412 in reply tobusbee3

Hi thank you for your message. Hope you have a good response to the chemo. Will be thinking of you tomorrow when i am hooked up!! Take care

busbee3 profile image
busbee3 in reply toAngie1412

Everything went fine for me in the infusion room today. I was pretty calm and the pre-med's (especially the Benadryl) made me a bit sleepy. I hope your day in the infusion room goes well too and is uneventful in a good way!

Lindaura profile image
Lindaura

Dear Angie,

So sorry that Niraparib did not work for you.

Heartbroken really, as I am counting on it working for me, when I start in April.

I worry about your scan. Several ladies have reported that their cancer progression only showed up in a PET scan.

Is there any possibility your Onc could order this for you?

Maybe plead this, because the pain is keeping you up at night...?

Meanwhile, I hope the Carbo does it’s job.

What a ride...

Hugs,

Laura

Angie1412 profile image
Angie1412 in reply toLindaura

Hi Laura thank you for your message. I don't know whether it slowed it down. Dread to think how quick it might have progressed if i hadn't taken it. Perhaps it doesnt work being BRIP1. Hopefully you will have more success. Take care Angie xx

Hi Angie,

Sorry about the Niraparib. Good luck with the chemo.

I get my results tomorrow think I will have similar problems.

Will be thinking of you. Laura is right about enquiringly about a PET scan.

Best wishes

Janet

Angie1412 profile image
Angie1412 in reply to

Hi Janet thanks for your message. Hope your results are ok. Take care Angie xx

in reply toAngie1412

Hi Angie

Results show a small increase in size of lymph nodes, not enough to "worry" about.

Bloods fair and CA 125 dropped from 41 to 35.

Taken off Niraparib for a couple of weeks to see if symptoms improve then it's either going back to it and putting up with symptoms or going back onto Chemo.

Such a waiting and guessing game,

Wishing you all the best.

Janet

Angie1412 profile image
Angie1412 in reply to

Hi Janet I am glad your results are not as bad as you thought. Your CA125 is on the borderline of normal. Long may it continue to stay low. Keep in touch. Angie xx

Marycha profile image
Marycha

Hi Angie,

I was on Rucaparib for almost a year and all scans were clear. However after seven months my CA125 started to creep up. I had couple of CT scans after that, all still clear except my CA125 was steadily rising. My CT scan never included my head so my oncologist ordered one. Sadly it showed some metastasis.

The last thing I want to do is to scare you but it can happen so if your scan didn’t include your head it would be advisable to do so.

I wish you all the very best. Liz

Angie1412 profile image
Angie1412 in reply toMarycha

Hi Liz thank you for your message. The scan shows active cancer but it hasn't progressed. Hopefully this chemo will do its job. Sorry to hear about the results of your head scan. Did you have any symptons. Take care Angie x

Lind58 profile image
Lind58

Wishing you the best of luck! You're a strong women, I hope this gets it!

Trathi profile image
Trathi

Oh Angie1412, I am so sorry to hear your news. It’s silly isn’t it we get quite blasé about chemo, your comment “here we go again” it shows how we continue to fight this disease. When my oncologist said it’s incurable what we will try is chemo again but Carbo and Caelyx, you just say yes ok,

Good luck and I hope it works for you. Sending lots of love 💕 hugs 🤗 and positive thoughts xxx

Angie1412 profile image
Angie1412 in reply toTrathi

Thank you for your message. I am in my third year and haven't had a break from chemo for any length of time. Everyone says how brave but do we really have a choice. Take care Angie x

Hopefulgal1 profile image
Hopefulgal1

What can I add except strength and courage to go forward and I wish that this chemo continues to work for for you and they find the solution for you xx🙏💕

Good luck. Seems that the parpis are good for some and not for others, mine stopped working after about 7 months. Hugs, Dawn xx

Angie1412 profile image
Angie1412 in reply to

Hi Dawn thanks for your message. Have they given you another chemo. Take care Angie x

in reply toAngie1412

Yes I had my second dose of doxorubicin today, my ca125 has dropped a few points since my first dose so I've got everything crossed that it will help. Cheers, Dawn xx

Angie1412 profile image
Angie1412 in reply to

Hi Dawn i am glad this chemo is working for you. I have never heard of it. Where do you have cancer? I had my first carboplatin yesterday. They had three attempts at finding a vein! That is the most painful part and now have some lovely bruises. Take care. Keep in touch. Angie xx

in reply toAngie1412

Snap - they had 3 attempts on my arm today too!

I had carbo and taxol for my first line and carbo as a sole agent for my second line of treatment. I seemed to tolerate it pretty well, so hope you will too - mainly cumulative fatigue and a few issues around food. It seems an effective drug. I've been told that I still may be able to have more carboplatin in the future.

Doxorubicin has a couple of "trade" names - Doxil, Caelyx and Sun (which I'm getting here in Australia for my 4th line of treatment). I have 3 "known" cancer sites; two in the lower pelvis around the bowel and one near liver.

I really hope your new regime is effective for you, Dawn xx

Angie1412 profile image
Angie1412 in reply to

Hi Dawn sounds as though we are in the same boat! I had caelex with carboplatin last time and apart from high blood pressure and low magnesium and a bit of fatigue i found it manageable. Take care

Angie x xx

Katmal-UK profile image
Katmal-UK

Good luck with the chemo xx

Maus123 profile image
Maus123

Good luck with this round, Angie. Surely this one will take. Thinking of you. xx. Maus

Hi Angie. I don't believe CT scans are entirely trust-worthy, or perhaps it's the technicians who check them against our previous ones, occasionally miss things.

A friend of mine was on a clinical trial. Been going well for > 1 year, when she was told she was to be kicked off the trial as her CT scan showed a shadow on her liver (progression). She was devastated but an on-the-ball young (English) GP who was at our hospital just for a short year, decided to look at all her scans. He noticed this shadow had been there when she began the trial and for the entire time she'd been on it. He made a case to the drug company, who accepted it and so she was re-instated on the trial.

For me, when my OC returned, I knew it was back, so did my onc, due to swollen groin lymph nodes. I had lots of tests (including CT); all showed no cancer progression, so my onc then ordered the PET scan. That proved the progression. It was already in a breast & other places. Ca125 was only 19.

BTW carbo/caelyx, despite some uncomfortable side effects, gave me a good remission.

Best wishes. Pauline.

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