Disappointed

[Niecey]

I had my 4th Avastin IV last week and a CT scan last Thursday. Previously my CA 125 level had been rising on Avastin and apparently it has risen again and is around 1,600. My scan showed my primary (I have not been able to have surgery at the moment) has grown and the secondaries in the peritoneum have thickened which obviously is not good news and shows that the Avastin has not worked for me. I do have secondaries around my liver and bowel but not in the organs themselves. I apparenty also have some enlarged lymph glands in my chest but the consultant said that they are of no concern at the moment. My consultant has told me not to worry as this is just a "blip" and that my disease is just proving a little tougher to deal with at the moment. I am now starting chemo Liposomal doxorubicin ( Caelyx) on the 25th February and will have this every 4 weeks.

Obviously I am very disappointed. I am mentally and emotionally in a good place at the moment and am determined to go with flow, relax about this setback and continue to enjoying life planning evenings out, holidays etc. with my husband.

Love and all good wishes to all.

Nieceyxxxx

[Hidden]

Your consultant sounds like a nice person. Were you just on Avastin alone well it is a new target theraphy but usually used in conjunction with gemzar ot carbo or taxol, There are many treatments out there for you to try and perhaps the next one will start doing the job, If you were getting Avastin alone, I would ask onc why though,

[brinseamo in reply to Hidden]

Well done you for being so brave and positive. It's the only way to be..

[Celtic6648]

I am getting my fifth Caelyx on Monday , on the third scan a marked improvement I am the same as you surgery not possible , infact I m also all around but not in organs , iv been fine in this Caelyx few side effects apart from fluid in the belly which drives me nuts , two drains , hoping it's now all gone , you take care x

[JanePW50 in reply to Celtic6648]

Hello, I've registered with Ovacome because my Mum has ovarian cancer. She was diagnosed at the end of 2013 and I think it was stage 3c. She had 7 chemos and debulking surgery in between. I took her for her first three month scan in Oct 2014 and the oncologist said her cancer cell count was 'back to normal'. We were obviously very pleased and the surgeon said she was very pleased with how the op went and she thought she'd got all the cancer out. Then Mum went for her second three month scan on 6 Jan with a fried (I live over 200 miles away ) and her CA 125 had rocketed to over 350. She was told there was a 'small amount' of cancer near(?) her pancreas and lymph glands. I believe even if the cancer is showing elsewhere it's still a recurrence of ovarian cancer. Anyway, this news left her feeling totally numb. Me too and the rest of the family. She has had one 2nd line chemo and is due to have the second on 13 March. It's the same chemo that you are having. She is having a real problem with having to pee constantly and it really hurts - like bad cystitis. In fact the doctor gave her antibiotics a while back as he diagnosed it as cystitis. But, the problem is getting worse. I'm so worried that something horrible is going on in there. I was wondering if she might have that fluid build up. I have read about other ladies experiencing that. I've forgotten the name for it but do you know what causes the fluid to build up? I'm so worried about Mum. I think it's so stressful waiting to hear the CA125 results and wondering if the chemo is going to keep ticking over. Sounds as though your chemo seems to be working OK. I would be really interested to hear of any possible side effects. Mum was told her skin could peel and she has some udder cream!!!

Best wishes.

Jane

[LesleyGreengran]

Sorry to hear that. I've been on avatin a while and my turmours are starting to grow again on CT scan and CA125 rising. I'll be back on chemo soon, probably carboplatin alone. I had carbo/gem/avastin for the first recurrence. I hope they find somethign effective for you.

[Hidden]

Sorry ladies we all seem to be between a rock and a hard place at the moment between one thing and another. My hope for us all is that our consultants and oncologists can help us and support us when we need it. In fairness most of us are extremely lucky that way.

[LesleyGreengran]

Yes you're right. I'm lucky to still be here as I was diagnosed late in 2010. As it is I've met my 5th grandchild and I'm looking forward to the 6th.

[Celtic6648]

You know what just try and treat it day by day what else can u do . I don't really talk the cancer with my daughter as she worries to much . I am very similar to your mum . We have to learn to live with cancer . This site is fantastic and if your mom had the fluid she would know you look about seven months pregnant . Has she tried a cream down below I often use canes ten as I feel nippy you take care xx