Treatment

Dear Tracy…..so sorry to read about the possible reoccurrence of your cancer. Our stories sound similar as I had the debulking surgery in 2019 followed by carboplatin/ paclitaxel. Cancer returned 2021 in my liver and lymph nodes and am waiting for outcome of MDT meeting this morning to find out next  steps. I was on Caelyx but only received two infusions as CT scan for bowel obstruction highlighted that Caelyx wasn’t having desired effect. That is not to say it won’t work for you though, as you know everyone is different. Have you looked on the CRUK website at all as they have a section that highlights the different trials that are ongoing at the moment and how to apply for them. Do you have an allocated oncology nurse as I have always found mine amazingly helpful. If you haven’t got an allocated nurse already you could try asking for one? Good luck on Thursday… have your list of questions ready for your oncologist and make sure he/she listens to you because really… it is all about you.  Take care xx

Hi Katie. Thank you for your reply and kind words. I will check out that website you have suggested. I also had a bowel obstruction in January 2022 for which I had further surgery (a reopening of the previous debulking wound). Unfortunately I have not gone into remission. I think a PET scan will be next which I believe can measure the lesions better and see if they are ‘active’. I am guessing they may use that to see if the chemo has the desired effect.

Could I ask if you lost your hair or had any other side effects on the Caylex? As you have said, everyone reacts differently. I lost mine last time as I had the one dose of Paclitaxel, it’s now just started to grow back….losing my hair was really hard to deal with. I think it is underestimated how traumatic that can be for some people.

I have an oncology nurse I can go to if needed. I haven’t had too much to do with her as yet but may meet her in person on Thursday. And yes, I am certainly compiling a list of questions….

Sorry you have had such a hard time also. I do hope your MDT come up with a good plan for you. Happy to keep in touch. Cancer really sucks.

xxx

Hello again Tracy…. Apologies that this is quick but heading out (to GP…where else these days) So, side effects of Caelyx for me have been very dry skin….dry mouth and ulcers and bleeding gums. My hair has gone thinner but hasn’t fallen out like last time. I haven’t brushed it for 9 weeks… just wash and run my fingers carefully through to prevent weakening it further. Sore hands and feet. And feeling sick. Apart from that all ok. I must admit I do try to laugh at stuff, but it is hard sometimes. Will be thinking about you tomorrow. Remember, as Kate Winslet said in the holiday… you have to be the Leading Lady in your own life journey…… so Ask those questions! Good luck

Hi Tracy,

So sorry to hear about your recurrence…..this disease is so cruel the way it lets us think we’re getting our lives back then comes back to attack us again ️.

I too had a recurrence 3 months after completing 6 cycles on Paclitaxel/Carboplatin and was categorised as platinum resistant.

However, after a further 3 cycles on a taxol only regime, it was clear that wasn’t working. Also, due to a bowel obstruction, I wasn’t able to take Avastin for maintenance as had originally been the plan.

So - in January this year I started on the “Rotterdam regime” which, although my cancer is supposedly platinum resistant, consists of a stronger platinum chemo (Cisplatin) combined with Etoposide tablets.

Although this regime has been tough at times, the fact that my CA125 has dropped drastically  after each cycle (now back within the normal range),  and that scans now show less cancer generally, has made it worthwhile.

We’re all unique, so it can take some time to find the right treatment for each of us, but we have to trust in our medical teams - and I really hope yours find the right regime for you very soon.

Love Barbara xx

Thanks Katie. Hope you got on okay at the GP. I know what you mean regarding where else would you be these days. I went from hardly using the NHS to now being a frequent flyer……we have decided to go for Abraxane which is basically a modified form of Paclitaxel which in theory shouldn’t cause an allergic reaction. Problem is it’s not licensed for OC so we are having to pay for it…..it will be weekly for six weeks, with one week rest after dose three. I am worried how I will cope with that. My fear is being on this continual treatment cycle and feeling horrid, and it not working…quality of life is such an important thing but I guess I have to try….am getting some counselling to hopefully avoid getting too broken inside xxx

Thank you Barbara, that’s comforting. I will make a note of that regime if needed. Hope your positive results continue xx

Thanks Tracy, and hope Abraxane proves to be the right treatment for you

I was on that for 3 cycles at the end of last year (that was my taxol only regime). It didn’t work in my case, but it was definitely less punishing than Paclitaxel - particularly in terms of the neuropathy I was getting in my toes.

Good luck - and it would be great to hear how you’re getting on if you feel like posting here again,

Barbara xx

Thanks Barbara. Out of interest, did you have to finance the Abraxane yourself? How long ago were you on it? We are being asked to pay £7k for it if we complete it as it is not apparently licences for OC. Just checking there is not a postcode lottery going on. I live in Norfolk. Can I ask what type of OC you have?  Mine is clear cell and there does not seem to be too many trials around for that, trying to find them is difficult. I have thought about contacting MacMillian to see if they know. I would like to have a list of potentials in case the Abraxane does not work (the regime you are on is on my list!)

yes, I only had one dose of Paclitaxel last time and got neuropathy in my feet, it’s not nice is it but it soon went for me when I stopped that chemo. Interestingly I have started to have problems with my right hand In that I cannot always make a fist and have tingling fingers and difficulty holding a pen for long. This is five weeks post carboplatin. The oncologist said this was probably a chemo side effect but who knows.

thanks again

tracy xx

Hi Tracy, 

I was on Abraxane for 3 cycles (should have been 6 but my oncologist decided to stop it as it didn’t seem to be working for me). The cost was covered by my insurance fortunately, although they did question it initially because as you say it’s not licensed for OC - my oncologist made the case for it though, based on me having suffered badly with neuropathy on Paclitaxel. Could be worth you/your oncologist trying to make a case on that basis too - particular as you now have hand problems as well.

Getting onto a trial is tough, particularly after a bowel obstruction, which I found excludes us from many of them - my OC was high grade with focal clear cell. The regime I’m on now is not a trial though - it’s actually quite an old regime, and I think all that’s changed over the years are the dose levels and frequencies. Seems to be working for me so far though, so I’m not complaining .

Good luck with whatever treatments your team puts you on next - somewhere out there there’s a right one for all of us I’m sure,

love Barbara x

Hi Tracy, hope you’re getting on OK with whatever treatment you are on now?

I’m still on the Rotterdam regime (Etoposide tablets only now), which seems to be holding the cancer back pretty well at the moment .

Hope you’re managing to get out and about now summer has come, and you have some nice treats planned for yourself?

love Barbara x