My Ovacome
10,937 members13,309 posts

1st post

Hello All

This is my first post. I joined the group on the advice of my friend - she has been a member for a while. I have just started my 2nd line chemo after my ovarian cancer reoccurred. I was first diagnosed in December 2015 and my ca125 started creeping up again September 2017. I’ve started chemo again and wanted to share my cautiously optimistic news that my ca125 has gone down. I didn’t realise until today how worried I was. I am BRCA2 positive and like many of us, in what feels like a war of attrition with my cancer.

The stories from this group have given me lots of strength over the past 3 weeks in what has been a tricky start to my chemo with uncooperative veins and urine infections! I am now fully armed with antibiotics and a PICC line (the best thing I’ve ever agreed to) so I feel more optimistic than I’ve done for weeks.

Thank you for all the advice offered and lots of love to you all.

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Hello Ruthie,

Lovely to 'meet' you :-) I'm also on second line chemo at the moment (carbo/gem) and am due to have my last round on Wednesday. Like you, I have uncooperative veins, so I had a port fitted, and it has made life soooo much easier.

This forum is a really lovely community, and I'm sure you'll get to know us all very soon.

Vicki x

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We are chemo twins! I had carbo/taxol first time but we’ve changed it up this time as the tips of my fingers are still numb! Side bonus of keeping my hair hopefully. Hope your treatment goes well - it’s so great to have shared experiences as support xxx

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I had carbo and docetaxel (taxotere) first time around because I had a huge reaction to taxol! Docetaxel is in the same family, and I managed to get through it without any further problems. Luckily I didn’t get any neuropathy from it.

Are you having carbo/gem too this time?

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Yes on the 21 day cycle with treatment day 1 sand day 8 - although I missed my day 8 this time because we couldn’t get a line in. At least the carbo went in though which I think is most important xx

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I’ve not had any of the day 8 treatments at all! My onc and I discussed it and decided to give it a miss so that the main carbo/gem combos had a better chance of going ahead as planned. I’m hoping it works as well regardless of the missed doses.

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Welcome. I am in a similar position - diagnosed in August ‘16, Chemo, operation, chemo, Avastin, CA125 rising since September (from 32 up to 290 now) but so far, no sign of recurrence on scans. On four week watch and wait, so trying to cram in as much fun as I can until the inevitable happens.

I haven’t had to have a line in yet - I now keep my hands warm with a hot pad all the way to the hospital to give my veins a bit of a boost. It’s worked so far!

Best wishes and hope the chemo continues to do it’s good work. Ali x

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Thank you. The CA125 is so varied it’s weird. Glad there’s nothing there on your scans. I had my scan at 190 and there was enough visible to start chemo. Last time my CA125 was nearly 2000 but surgery brought it down under 100 so the chemo has a bigger job this time! Hoping that it will keep reducing. Meanwhile, you keep enjoying making the most of it!!😁😁 xxxx

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My consultant tells me that she worked with a woman whose CA125 went up to 5000 before there was any evidence of recurrence on her scans. The highest mine has been is mid 400s when I first found my omental tumour. They put a ‘normal’ reading at less than 35, but there does seem to be a lot of variation in high readings and evidence of cancer. It’s a bit of a mystery to me!

Ali x

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My consultant mentioned a blood test which measured the cell decay from the cancer. Apparently this happens with all cells, even fast growing tumours, and he thinks this will be a more accurate measure in the end. No idea when it will be available though. Would be helpful in situations like these though as some of the guess work would be removed. Also I think it’s a problem to keep being scanned when you have the BRCA mutations so it would help reduce those too I suppose? Xx

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Hi Ruth,

Glad you signed up. There’s loads of support on this site and people who have so much experience of the different types of treatment and, sadly, everyone knows what you are going through. That said the posts can be very uplifting too. Anne xx

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Hi, Welcome to this lovely group,where you will gain information which is reliable from lots of lovely ladies. I hope that your second line chemo goes well now & it is re-assuring that you numbers have gone down . Take care.xxx

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Hope all goes well with your treatment Ruthie ❣️

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Welcome Ruthie. I'm sure you would prefer to be part of a different forum but the girls here are wonderful. We all have different stories and different outcomes. Some posts are very sad and some are very uplifting and give us all a boost. What is important is that you are not alone so whatever comes your way we shall be here for you every step of the way. Without the support of these wonderful teal sisters - and Anna at Ovacome - I would not be here now. Every good wish and luck to you on your journey. Kryssy xxxx

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Hi Ruthie, I would like to induce myself my name is Lorraine and I've been on here now for just over 3 years and have corresponded with some amazing ladies who will give you advice and encouragement when you need us.

Good news that your levels are coming down and if I'm right being BRCA2 positive will give you more opinion for treatments if you need to, also yes having a PICC line is a good idea I've had my post now for 2 years with no problems.

Keep up feeling optimistic and take good care of yourself ...lorraine xx

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