PERITONEAL CANCER

[Angie1412]

Hi my name is Angie. I was diagnosed with Stage III high grade invasive serous peritoneal/ovarian cancer in October 2016. I had a hysterectomy in October and have finished the main chemo and I am now on Avastin for maintenance until January 2018

[Cropcrop]

Welcome Angie to our lovely gang, sorry you've had to come to us but you're now part of a tremendous support system, ask any question and somebody will have the answer for you. We are all at different stages in our battle with OC so the depth of knowledge here is superb. I hope you stay as well as is possible. Take lots of care ❤️Xx Jane

[Hidden]

Hi Angie and welcome. I had Avastin and it worked well for me. Been on a chemo break now for almost two years and feeling good. Avastin has side effects but they are manageable. Feel free to ask us any questions bad we will help as much as possible.

[Gleedy]

Welcome and well done. You are exactly the same as me. You've done the hard bit. Avastin seems to go on forever. There are side affects. We all seem to get different ones. Keep asking and you will always get support x

[Juliette35]

Hi Angie, you will find everyone helpful on here , we are one big club and like the other ladies said any questions just ask. I have ppc I had all the usual , chemotherapy, debulking ext. Sadly the avastin didn't work for me . I am having a rest from chemo , oncologist as put me on hormone tablets. So on them at the moment. Hopefully the avastin will work for you . Love Julie xx

[SarahsJourney]

Angie, welcome, I was also diagnosed with stage 4 Primary Peritoneal (or Fallopian tube) Cancer, high grade serous in Oct 2016. Had chemo first, then my debulking surgery in Jan. Finished second bout of chemo end of March & am on Avastin till mid October.

Struggling a little with headaches/joint pain, & can't wait to be free of drugs so that my body can hopefully recover fully. This forum was a life-saver for me, & still is a place of sanctuary xxx ❤️ xxx

[Alifit]

I have the same diagnosis as you - I had debulking in October last year in the middle of 6 sessions of Carbo/Taxol chemo. I'm on Avastin now with minimal side effects. I'm currently enjoying another holiday, this time in very hot Italy - I'm determined not to let it beat me. This forum is invaluable for the support it gives - there are some remarkable and very positive stories which give us all hope. You will almost always find someone who is having or has had something similar to you and can offer help.

Best wishes Ali x

[Angie1412 in reply to Alifit]

Hi Ali thank you for your message. I was 61 when I got diagnosed in October last year. It took several visits to doctors before a lady doctor wanted to do a blood test for OC. My mother died in 2005 from OC so when my dad was taken ill i decided to have my ovaries removed in 2010 so that I could concentrate on looking after him. It never occurred to me that my bloated stomach, loss of appetite and pain was OC. The consultant decided to operate first then follow with the chemo. I think I was at my lowest when I started to lose my hair on Christmas Day. My 3 daughter's and my husband have been very supportive and I couldn't have got through it. I am now having Avastin every three weeks until January 2018. The side effects are not pleasant but bearable. I really need to lose weight. I haven't been this heavy since 2010 but it doesn't matter how good I am the weight doesn't shift. I was advised back in January to have genetic testing as i have 3 daughters. I had the results on Friday. They have found a rare gene which is solely OC so they have advised my daughter's to get tested. I feel so guilty as I cannot do anything about it and they will have to make decisions. Sorry but I just needed to unburden this as it has been bubbling under the surface. When I was first diagnosed my CA125 marker was 1160 and last week I was told it was 13. Not sure how to take this as doctor just said it was good. Thanks for listening.

Take care

Angie

[Alifit in reply to Angie1412]

Everyone's story is different - my symptoms were explored in 2015, just as I retired at 60. I was told I had IBS and went away happy (ish). A year later I was diagnosed with PPC 3c. I don't have the BRCA gene, but was concerned for my daughters and other women so I approached the professor at my local NHS Trust to see if I could have been diagnosed sooner. As a result of my discussions with him, a new protocol has been raised for health professionals in my area to enable them to proceed with further investigations instead of giving the all too common IBS diagnosis.

My CA125 was 400 at its highest, and is now stable at around 30. I think that under 35 is considered normal. From the posts on this forum, it seems that OC is treated as a chronic ailment - there are also new treatments being developed all the time.

I know it's not always possible to be positive and we are allowed to feel very fed up with the beast, but the best advice is to take one day at a time and to keep up a dialogue with your team - they almost always have something in their arsenal of medications to help unpleasant side effects.

Take care and continue to take support from the posts here.

Ali x

[PAE68]

Good to hear Amy!

Pat👍💕