Ascites back ca125 31.

[Zena41]

Hello my ladies....

I haven’t been on here for a while but do read my messages off you all and pop on to see how ur all doing. But sometimes find it very upsetting.

Sofor the last nearly two years been having fun with my baby girl as I missed soo much when diagnosed.

Do I need to be concerned ?

I had four litres drained last week my ca125 has gone from 24-31

But since drain I feel fine again ...🤷‍♀️

I also changed to tamoxifen a week ago from letrozole.

Has anybody had similar think ??

I’m thinking everything 🙏😘

[ZenaJ]

Hi, I haven't been on much either but look every day. I've been wondering how you are and sorry to hear things have not been 100%.

I'm sorry to say I have no answer for you but do hope everything will be okay. I was told that anything under 35 is nothing to worry about and it can change daily. So fingers crossed.

Keep us informed. All the very best. The other Zena xx

[Tesla_7US]

Zena41, generally ascites indicates active disease which then means the patient needs active treatment. Draining the fluid does not stop it from coming back. What has your doctor told you? If he/she is saying watch and wait, get a second opinion immediately! Watching and waiting means you'll have MORE disease to deal with which makes it harder to get rid of. OC is relentless. Actively pursue answers and treatment.

[Zena41 in reply to Tesla_7US]

Thx get scan results next week. I’ve told my surgeon she told me not to panic x

[Nibs81]

Hi Zena

I was on letrozole from feb-June and unfortunately things became symptomatic and ca125 went up which is when we switched to tamoxifen. I had a rise in ca125 and the fluid returned and still keeps coning despite switching onto weekly taxol.

[Zena41 in reply to Nibs81]

This is what worries me as only surgery got rid last time I hate ascites 😓

[Gemimablackvelvet in reply to Zena41]

Hello Zena41,

I think you're right not to be complacent but try not to worry. I had 8 litres of ascites removed in May 2018 after a 5 month delay with the original diagnosis of OC 3c high grade. The hospital lost the ascites sample causing a further delay of over a month before treatment could begin. By this time I had tumours on both ovaries and the peritoneum. I had to push for surgery because of my age, I assume. I was 74 at the time. I eventually had a successful hysterectomy in September 2018 leaving me with stable disease. Why I'm telling you all this is because if treatment is delayed it spreads so please don't let it rest. I had a recurrence in August this year, 2019 only 7/8 months after the last chemo when a CT scan showed I had 3 more even larger tumours and nodules in the peritoneum. CA125 was 24, 34 and 46. You cannot go on tumour markers alone. After 3 months of carbo/caelyx all the tumours have shrunk by 50% but they have assured me they cannot be shrunk completely and the MDT meeting ruled out surgery. I have requested an appointment with the surgeon after my last chemo in January and a CT scan. I fear it's the only way to get rid if them, if only for a unknown period. Niraparib has been mentioned as a maybe but I think that is just to delay recurrence as long as possible. I've rambled on and on but is because I care and want you and everyone else to insist on the best treatment possible for longer survival.

My love to you

Angela xx

[Zena41 in reply to Gemimablackvelvet]

Yes thank you xx

[Zena41 in reply to Nibs81]

Hi are u low grade ? Would they consider surgery?

[Nibs81 in reply to Zena41]

I’m due palliative surgery tomorrow after original surgery last year had to stop due to the spread on small Bowels. But after a 2nd opinion at Queen Charlotte Theyre going in tomorrow to remove the big masses 👌🏻

[Zena41 in reply to Nibs81]

Hi I think I told you to go for that second opinion at Hammersmith? I could be wrong ? Who is doing your surgery?

My lifesaver was cf 💖

[Nibs81 in reply to Zena41]

Yes I’m hoping she can be mine to 🤞❤️

[Zena41 in reply to Nibs81]

Thinking of you. Keep in touch xx

[ShropshireJo]

Hi Zena. I can’t offer any practical advice but want to send you good wishes whatever comes next. All the best Jo 🌺🌼🌸🌻🌹

[Shorty864]

Dear Zena,

Had the ascites back at end of September this year after my third round of chemo, 3 litres was taken off and l felt great again, but as we know ascites needs chemo to stop it, so l am on my fourth round of chemo, Caelyx, plus Avastin, and the ascites is under control again.

Good luck my dear, my thoughts are with you.

Anne xx

[1916]

Hi Zena.

I have asites at the moment, never had it before not when first diagnosed. I had 4 half litres removed about 4 wks ago.

Unfortunately it was a change on my scan that the disease is active again.

Hopefully yours will be ok , just don't want to alarm you ,I wish you all the luck .

Love

Ann xx

[Zena41 in reply to 1916]

Hi thx are u low grade ?

[1916 in reply to Zena41]

Hi Zena.

No I'm high grade 3 A .

Good luck .

Love

Ann xx

[koffeekat99]

Hi Zena41

I’m also low grade and waiting for scan results (due next week). Been on watch and wait but have had several months of tiredness and some cramping. No ascites currently (have had it before and oh yes it so does feel better after treatment).

Can’t offer any words of wisdom really. Currently just trying to busy myself with other thoughts and daily life.

What is your medical team like with LG? Mine actually seem to recognise the idea of treating it differently. So far anyway. But still hoping treatment is not necessary yet.

Can’t offer advice on CA125. We don’t monitor it. The team here only monitor it through chemo. They said it could raise if you have a cold and they had found monitoring it for anything other than how chemo was doing seemed to cause a lot of stress but with little benefit!

Fingers crossed for us! My results are due next Monday. When are yours due?

X

[Zena41 in reply to koffeekat99]

Hey Hun were abouts in the world are u ?? I’m uk.

Yes I have my appt 12th Dec for results.

Your team are right about ca125 as I obsess as it was caught on 900 at diagnosis.

My team seem to know a lot about low grade. But not like the experts.

My surgeon says I can be treated with surgery anytime 🙌

I will be thinking of you.

[koffeekat99 in reply to Zena41]

Also in the UK.

Can’t remember my initial CA125. Think it was in the thousands but have never asked again about it so could have remembered that wrong.

Good news from your surgeon that they’d operate. Mine are suitably prudent and offer no opinion til they have all the facts. I know why they do that but it can be frustrating not to talk about possibilities whilst waiting.

[Zena41 in reply to koffeekat99]

Yes not sure I would cope with that xx

[mupash]

ZENA 41 BY NO MEANS DO I WISH TO UPSET YOU BUT I HAVE FOUND THAT THE DOCTORS ARE NOT OUR BEST ADVOCATES IN MANY CASES, SORRY TO SAY. I THINK THEY WOULD BE FAR MORE CONCERNED AND VIGILANT IF IT WERE THEIR FAMILY MEMBER OR THEY HAD IT THEMSELVES. I THINK I HAVE MENTIONED THIS IN A PREVIOUS REPLY.... AN ONCOLOGY NURSE WITH MANY YEARS EXPERIENCE TOLD ME NOT TO LOOK AT THE NUMBERS BUT LOOK AT THE TREND. IS IT CONSISTENTLY GOING UP, DOWN, STABLE?? I HAD ORIGINAL SURGERY IN FEBRUARY OF 2016. A YEAR AND A HALF LATER MY CA-125 WENT UP EACH MONTH. SOMETIMES IT WENT UP BY ONLY

HALF A POINT, SOMETIMES A POINT, ONCE WENT DOWN A POINT. AFTER 15 MONTHS OF THIS IT HAD GONE FROM7.5 TO 29.6. MY ONCOLOGIST ASSURED ME THAT IT WAS STILL WITHIN NORMAL RANGE AND I JUST HAD A CAT SCAN AND THERE WAS NO CANCER, ALSO HAD AN MRI... BOTH SHOWED NOTHING. WHEN IT HIT 29.6 I CALLED AND INSISTED ON A PET SCAN. THERE IT WAS. A MINIMAL RETURN IN THE SAME PLACES IN THE PELVIS. SOMETIMES YOU HAVE TO STEP UP FOR YOURSELF. MY ORIGINAL TUMOR WAS 6 INCHES. LUCKILY IT WAS ENCAPSULATED.

BECAUSE IT WAS EVERYONE ASSURED ME IT WAS BENIGN OR I WOULD HAVE BEEN

DEAD AT THAT POINT. ( MY CA-125 WAS 34, ONLY 3 MONTHS LATER IT JUMPED TO 154.) THEY WERE WRONG AND IF I HAD A PET SCAN IT WOULD HAVE BEEN DEFINITIVE AND THE SURGERY WOULD HAVE BEEN SCHEDULED A LOT SOONER. I DIDN'T KNOW ABOUT PET SCANS AT THE TIME. NOW I DO AND RECOMMEND THE TO ALL. DOCTORS TRY TO USE CAT SCANS MORE OFTEN BECAUSE THEY ARE MUCH CHEAPER. I HAVE CHANGED DOCTORS AND EXPECT TO HAVE A PET SCAN EVERY 3-4 MONTHS.

WE HAVE TO HAVE A PRO-

ACTIVE PART IN THIS AND INSIST ON THE BEST CARE.

I WISH YOU THE BEST OF LUCK!

[Zena41 in reply to mupash]

Oh yes I agree. As on diagnosis I was pushed by theses lovely lot on here for second opinion glad I did.

Thank you I will bear that in my if cat scan shows nothing I will ask for pet. Xxx

[Zena41]

Hi all the beast is back 😓 like dust on my peritoneal. Ca125 now 41. No ascites for over three week tho 🙏🙏🙏. I’ve to stick to tamoxifen see if it works xx