Recurrence ovarian cancer

Hi 

I'm sorry I can't answer your question but I noticed that your post hadn't had any replies. Replying to you will nudge it back to the top of the page again.

If you don't get any responses you could post your question in ask a nurse and one of the specialist cancer nurses will respond within a couple of working days.

The fear of recurrence is something that we all have, no matter what type of cancer we've had, and I'll be keeping my fingers crossed that you don't have this.

x

Hi Alleybee, sorry to take ages to reply, how did your scan go? I hope it had a good result and was not what you feared.

but just in case, it might be worth contacting either ovacome or target ovarian cancer as they have a nurse helpline & a wealth of exeperience & information.  Although, I have not long finished first line treatment & currently have no experience of recurrenace, it does seem that for some types of OC, it gets treated almost like a chronic disease,in that it recurs & can be treated again and again, although the periods of remission get shorter as time goes on.  There does seem to be progress with immunotherapy plus a lot of clinical trials if you have one of the more common types of OC so there is hope.  There is a lady on the ovacome forum who is on something like her 7th line of treAtment! I hope you will not need this information & had a good scan result but I wanted to answer your post.

i hope all is well xxx

Hi Alleybee

I hope your scan went ok but for info:

I am now on my second recurrence.

I was diagnosed 5 years ago. My daughter said she was told I may not make the year!

First 6 chemos around Op were Carboplatin/Paxitaxol. Second was Carboplatin/Caelyx then Niraparib PARP inhibitor for 16 months. Just started a new trial. There is always something new being investigated to give hope.

I am non BRCA.

Wishing you good news.

XX

I was diagnosed two and a half years ago stage three c ovarian cancer and my story is similar to yours. 

Debulking op then carboplatin and Taxol 6 cycles followed byTamoxifen then reoccurrence so six cycles of Calaex and Carboplatin with less side effects than the first chemotherapy. I am BRCA wild type. I have been put on Niraparib (Zejula) and have taken my first months supply. Clinic tomorrow for blood results and I am interested to see if my CA125 has risen. It’s difficult not to get a bit obsessed with the numbers. It was over 8000 when I was initially diagnosed and 2500 on reoccurrence. Post chemo this time down to 19.

I hope that you are stable disease wise and would be interested in your comments on Niraparib. I have only had mild side effects so far. 

But hey if it gives me more time with out reoccurrence I will be grateful.

Hello NinsyFarmer16

Only a short reply I’m afraid as finished Cycle 5 of Trial today and really tired and nauseous.

I started on 3 x 100mg Niraparib in Dec 17 just 3 weeks after I finished the Carboplatin/caelyx as Maintenance but had to reduce to 2 in Feb 18 as needed blood transfusion. Then ok until Feb 19 when signs of progressive disease. Tumours still small though and still contained within omentum.

Managed on 2 Niraparib without very little side affects and managed to have holidays etc. Only things of difference was became constipated so used Ducosate 15mg at night, reflux so used 30 then 15 mg Lanzaprazole before food in morning and scalp was very sore in sun so always needed a hat even to walk a few yards.

Started this trial in March 19 a few weeks after stopping Niraparib and even though I have had a reaction to Carboplatin on 2,3,4 and 5 Cycle now feel confident I’ll get 6th Cycle as had been doubts.

Won’t know benefits until CT/MRI after Cycle 6 although one after Cycle 3 showed stable disease.

Hope this helps and good luck.

I’ll update my profile at some point.

XX

Hello SussexOvarian

Thank you for replying.

I have been constipated with Niraparib and funnily enough it has relieved the awful diarrhoea I suffered since my original op. The debulking operation included a right hemicolectomy and with the side effects of chemo it has made my life very awkward only being able to leave the house for hospital visits. This happened immediately after starting Niraparib. It has given me my life back and now I am able to get out again. I had two transfusions this year during the Carboplatin/Caelyx cycles.

i also have to be careful in the sunlight as I have been burnt even after walking in the shade, I had to resort to using my old headscarves when gardening last weekend. 

I hope that your trial is successful and would be interested to know what drugs you are given. I have a port at the moment which is easier to live with than the PICC line I had with my first chemo. As the line has to be flushed weekly I had to get to the hospital even if too ill to have treatment which seemed daft. But there isn’t any nurse on the district that flushes the line.

best wishes and good luck x

Hi, found it interesting reading your posts. I too have been diagnosed with reoccurring ovarian cancer, which I was told was incurable but treatable. Then a surgeon from The Royal London Hospital told me he could operate as I am young (52) and in good health otherwise. The only downside was that he would have to remove a piece of my bowel to ensure all the cancer was removed. This would result in an irreversible stoma.  Obviously I accepted as he told me this operation would significantly increase my life expectancy. 

I'm now 8 weeks post surgery, doing exceptionally well, according to my doctor, and getting used to life with an ileostomy. I began my new course of chemo yesterday, carboplatin/caelyx and so far so good. Had terrible problems last time with my skin, but think that was down to a rebound of my psoriasis on stopping a biologic medication, so really hoping that won't happen this time round.  

My oncologist has said that this surgeon certainly made top right call operating and hopefully there'll not be any further reoccurance, although obviously she cannot guarantee this as it did reoccur so quickly after the last chemo. Less than a year.

Sending you all healing wishes and positive vibes.

Ann

Hello Ann

i hope that you continue to feel ok with the present chemo. Having just finished six months of Carboplatin/Caelyx I found it far easier than my first chemotherapy the Taxol and myself did not get on at all. Where as I lost all my hair the first time the second lot just thinned my hair in patches. I was warned that I might have have a stoma but they managed to make an anastomosis between my small and large bowel. Unfortunately as I mentioned in my last post this caused the diarrhoea that I have had since. I attended clinic yesterday and my bloods are fine apart from a small rise in the ca125 which they expected but they said it should settle down again. I have my next four weeks supply of Niraparib and see them again after that.

So I continue on this with the knowledge that the drug has brought my bowels under control. A totally unexpected bonus.

best wishes for your continuing treatment.

SussexOvarian

Please let me know how your sixth cycle goes and the results when you have your scan.

wishing you all the best.

i have looked at the website many times over the last couple of years and find it very sad that there are so many people with this diagnosis. Only just decided to post myself this week not sure why perhaps I am feeling much stronger at present.

Hi Ninsy, 

Thanks for the reply. I too had carbo/taxo last time and the hairloss. I wasn't too bad on it but felt progressively worse as the sessions went on. This wasn't helped by my skin going erythodermic. I too am hoping for an easier time this round. I'm generally coping ok with the ileostomy although had my first small explosion this morning that I was quite impressed with myself for keeping calm and getting on with it, you gotta laugh at these things to stay sane!

I do hope things continue on the up for you. This group I'd very good for just being able to talk to people going through the same thing and to know you're not alone xxx

Ann