My Ovacome
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Ali update

Hi all, just to update you (although there’s not much to tell).

My CA125 is still going up (283 at the last count), but examinations show no problem areas. I’m having my 3 monthly scan at the end of April which I’m hoping will show nothing again. However! I’m fairly sure there is something happening as I’m starting to feel uncomfortable after eating - I do have a huge appetite though so it may just be greed!!

Hope everyone is doing as well as they can, with love, Ali x

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Glad you are still showing as clear despite the CA125, and you have another 3 month reprieve! Maybe time to book another skiiing holiday...?!

Vicki x

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Keeping fingers crossed for a good scan result for you. Mine on 10th April- quite nervous.

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Hi my ca 125 is up to 400 clear scans pet/ct so now doing a laparoscopy to see what’s going on inside

Good luck hoping another clear scan for you xx

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I have a scan in one hour.Urgent scan..CA125 was 18.Now 400.I am having bloating, low back pain,bowel issues.fatigue.Yah ,I feel its back again.It will be my third reocurence.Only been 4 months since last chemo.Not feeling good about this....Good luck on your scans.Lynn.💙

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Good luck🙏 Keep in touch , just kick its arse again xx

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Prayers and hugs.

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You know your body and its best to insist on some kind of deeper investigation. Perhaps a PET scan, which can see microscopic lesions.

Can you tell if you are suffering from ascites?

Sometimes it is better to hit you with a barrage of Chemo, unless they want to go on and take a look see.

If I were you, with a rising CA-125, along with the feeling that something's not right, I would insist in another look and a new treatment.

Go for it,

Laura

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I looked up ascites. ..I have multiple symtoms. Now I'm more worried.I Google. It dosen't look good.Not in a good place.I'm thinking the worse now.I'm usually a positive person.Waiting for results, but it's Easter weekend. .I'm sure they will call ASAP if its bad..

Trying to keep busy to keep my mind off this.Happy Easter..

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Thank you Laura. I’m still able to rush around, seeing friends and doing all the things I’ve always done, so I’m going to hang fire unless I’m in real pain. I think that the chemo can do so much harm that I’m happy to leave it as long as possible. I’ve had my CA 125 results today - it’s gone down by 4 points to 279 - still high, but it hasn’t gone up - I’m happy with that for the time being!

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Dear Alifit, have you had a PET/CT scan? I mean the whole scan (sometimes they leave out the PET part, because insurance companies won't pay for it). When mine went up to 285, nothing showed up on the CT scan, until I paid out of pocket (credit card maxed out) for a PET. That's when the tumors lit up "like a Christmas tree" as my oncologist put it. I went back on Taxol/Carbo to control it. This was 8 years ago.

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8 years!

Great advice. I was talking to my doctor neighbour recently. He works in ICU, but is changing to Hematology/Oncology.

He cannot understand why PET scans are not regularly offered to OC patients.

They give a much more detailed view of everything.

Impossible to afford in the USA. How much would a private PET inthe UK cost?

I would apply for a McMillan Grant when the time comes.

Good luck everyone.

No Easter celebrations for me. Just a quiet recuperating weekend.

Laura

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Glad you are still enjoying life - putting cancer worries on the back burner is hard to do but keeping busy helps. I was given a PET scan when I was on a particular trial 5 years ago. It does help your oncologist keep an eye on early indications of disease even if they do nothing in the short term. Keep busy and enjoy being away from the medics for a bit longer. Gina

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I have had 12 chemos of the carbo/taxol, they said too much toxic chemo. My ca 125 numbers were stuck at 60. I had one treatment of Avastin only and ca 125 went up to 185. Had a PET scan today awaiting results. I had a friend that had her Ca-125 continuous to go up with nothing showing on CT or PET, she had Laproscopic they found cancer and she is back on chemo. Doing well, but surprising that nothing showed on PET and her CA125 was near 900. Glad the docs went in. I hope my docs are that caring to do what they can to find out what is going on, if my numbers continue to go up.

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