I've new - I've been dipping in here and reading posts mainly when I can't sleep in the past week. Yesterday I saw my oncologist who confirmed that my cancer has worsened (as I knew). I first had ovarian cancer April 2017 when I was diagnosed stage 4 and had 6 cycles chemo (3 drugs - carbo, paclitaxel & avastin I think) with surgery in between. I found out I am BRCA1. Carried on with another 12 cycles Avastin then I was fine until earlier this year when CA125 rose again and ascites started building up again. I had 4 cycles of carbo/caelyx and then went on Niraparib with high hopes. I put my stomach churning down to the Niraparib for several weeks until 2 weeks again I had to admit it was ascites building up again. I has a scan last week and yesterday oncologist confirmed that cancer has worsened and Niraparib isn't working for me. My body has tolerated all my previous chemo pretty well and the only time I've felt really rough is when the ascites has built up, but this is relieved when it is drained and then when chemo kicks it the build up stops. I should have my stomach drained in the next few weeks then probably start weekly paclitaxel shortly after which will continue indefinitely (assuming it works).
I'm 41 now, my kids are 10 & 12 and so I need to tell them its back again. My husband is really supportive. I work as a TA in a local junior school so am signed off again having only just gone back to work 3 weeks ago. I feel rubbish that I have had this "it's fine" front on for the past few weeks until I knew what was happening. I feel bad about telling my close friends again as they all have their own issues going on. Its not quite real yet. My specialist nurse is referring me for counselling which should start in a few weeks. I think my coping mechanism has always been to continue family life all the time I could and focus on my kids and ignore my cancer and treatment. I am lucky in that I live very close to my local hospital and my husband works near the hospital too so practicalities of treatment and quite simple.
Sorry for the long rambling post - I guess any tips in dealing and practicalities of my next treatment would be great. I know to expect hair loss - I had this first time round and have a wig but would rather not wear it and need to try some scarves, I want to try to look "normal" for the sake of my kids. x
Written by
Purplesnail
To view profiles and participate in discussions please or .
Goodness, no wonder you have been having trouble sleeping, such a lot to deal with.
I am quite a bit older than you but my youngest is 12 and our cancer timelines are similar. I finished second line chemo in July and now going along with hope from one appointment to the next.
I had weekly taxol for first line and found I could carry on with normal life, pretty much. I used to drive myself to the chemo unit and home again. One week they changed my time for me so I could go to pony club camp first and get my daughter ready before heading for chemo. By about week 14 I was starting to suffer with neuropathy in my hands and feet which frightened me a bit, also ringing in the ears and distorted hearing, but it all went away after the end of treatment.
Ascites is the worst thing I've dealt with so far along the way also. I hate admitting I can't do things and pretend all is okay and I am superwoman. I think it's hard to do otherwise when you have young children.
Anyway I wish you well and hope this line of taxol knocks it for six. I think I would want to have a set number of weeks then reassess rather than just carrying on indefinitely, but that's just an idea. Best of luck x
Dear purplesnail, I feel your pain as my situation is similar to yours. My daughters are 12 and 16 and I have just restated chemo for first recurrence. On the one hand I want to put on a brave face for them and try to carry on as normal but on the other hand I'm secretly petrified for the future and spend a lot of time ruminating every possible worse case scenario. We've told our daughters which we've done all along. The older one is very sensible and I think understands fully what the future may have in store and the younger one I don't think really understands the full implications. I think I like to be a pessimist in my head as that's my way of dealing with this awful situation but of course secretly pray that the many treatment options may provide me with a future. I had counselling last year which I found really helpful. It was just a good place to sit and sob without trying to be brave and I think I'll probably go back soon for more. Get all the help you can. I too only went back to work in February and I'm now off sick for two weeks while chemo starts. Its all just a big pile of c... really but I hope your husband, family and friends can all be there to support you.
Thanks, I have today told the kids and started telling friends. The kids seem to just take it all in their stride and I feel better not having to hide things so much and make excuses. We tell them what is happening but more focus on the current situation and not any future scenarios.
Wishing you all the best for this chemo, with as few side effects as possible x
It is just awful to have to keep fighting this thing and you are so very young!
That BRCA1 mutation is a monster, but not all of us have recurrence so swiftly.
The PARP inhibitors have shown NOT to be the miracle drugs we hoped they would be.
I am like you and am now classed as PARP resistant.
Fortunately, I did not reach the point of having ascites again, as I changed treatments as soon as it was discovered that my cancer was progressing.
Before first line l had terrible ascites and a huge pleural effusion also that crushed my lungs! I was a mess!
Okay, that said, I have started weekly Taxol exactly one month ago.
It turned out to be hard going and after just one infusion, we lowered the dose by 25%, but I was still in such a bad way, the doctors gave me two weeks off of the drug.
Still, in my third week, I lost all my hair.
Although I knew this would happen, it hurt.
Luckily, I found a great wig, but even though it is a special light weight one, it gets uncomfortable when I wear it all day, but if I don’t, I look like a cancer victim!
Meanwhile, I cannot urge you enough to call on your friends for support. They will love to help you, to keep you company at infusions, and they WANT to feel useful. Let them.
I hope that Taxol is not as hard on you as it is for me.
Carbo/Caelyx was so easy in comparison.
But, you might just have to give in and let your family pamper you for the next six months.
It will kick cancer’s butt and that’s what you need right now.
Thank you, I have today told several friends who I know are there for me - practically & emotionally.
Sorry to hear that taxol has been so tough for you. I know that the hair loss time is a tough one and I’m not looking forward to that again. My hair has just grown out from my hair loss 1st time round and I now have a great hairdresser who I know will recut my wig for me but its still tough.
I had not heard of PARP resistant but it’s good to know it’s not just me!
I know I need to learn to lean on people more - it’s not a thing I find easy.
I hope the taxol settles for you and becomes easier to cope with. X
Purple, my dear childhood friend had the same diagnosis as you. She fought stage 4 for 12 years! She lived long enough to see her two daughters through school, getting married and even got to know her precious grandbaby! All at stage 4! She had chemo 7 times. She taught me how to LIVE right now and be in the moment. I am stage 3C, BRCA1 and now in my 5th year since diagnosis. You can do this! Don't hide from friends. There will be times when they can help. Your daughters need to see you being practical, honest and taking one day at a time. With love, T🧡💜❤
Thank you - seeing my kids grow up and go through teenage years is my biggest desire. Already they have gone through several milestones since my first diagnosis which I wasn’t sure I’d be here for. I have changed my mindset so much since my diagnosis and I now make sure that I enjoy the small things and make more fun things happen. I’ve now booked some theatre tickets for a show in 6 weeks that I know the kids will love.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
First Recurrence : (
Ovarian Cancer active again on liver first recurrence plus ascites new chemo carboplatin and caelyx
First recurrance, advice needed 
My first post - being brave!
