ANYONE HAD MAINTENANCE/SALVAGE CHEMO

[thehusband]

Hi, Brief background. My wife diagnosed nearly 2 years ago with High Grade Serous (3c) - had normal hyster, then 6 x 3 weekly carbo/taxol but CA125 never went below 300. Had 5 months without symptoms, then two months later had 4 x weekly sessions of taxol but CA125 continued to climb. Then had 8 sessions of gem/carbo over a 6 month period which reduced CA125 down to 100 ish (lowest ever) but still 4 measurable tumours remained.

Now 3 months later symptoms back, one of the 4 tumours is growing and perhaps a 2nd one.

Onc is talking about a phase 1 trial and obviously we would try anything. HOWEVER

I understand that OLAPARIB has decent results for some, and ditto TOPOTECAN. Then someone mentioned regular maintenance chemo just to keep things where they are.

Anyone had that and if so what, why and how is it going. Also anyone had Olaparib or Topotecan

Thanks for any responses.

[Hidden]

I am sorry I have no knowledge of this myself...but know there are some on here that have... "Spanishanna" has been on maintenance therapy for years...you could look her name up in the directory (at the top) and then read her posts.. best wishes love x G x

[cathysal]

Hi

I'm now on 3rd line chemo - Topotecan. My CA125 started off this time at 515 and after three chemos is down to 405 which I'm pretty pleased about. I have the Topotecan every week for three weeks and then one week off so I will have 18 chemos altogether. It is pretty hard on the immune system and I couldn't have it last week because my white blood cell count was too low, however I got it this week again okay. I find it much more bearable than carbo/taxol, the only real side effect is extreme tiredness, however that's almost become a way of life nowadays! Also my hair which was growing in quite nicely has started really thinning out. I think the advantage of having it this way is that because I'm in every week for the chemo they're able to keep a real check on my blood levels etc.

Sorry, I don't know anything about maintenance chemo but would be very interested to hear about it.

Best wishes.

Cathy x

[Jacks150 in reply to cathysal]

Hi Cathy,

I was interested to read you are on topetecan as I am about to start that on Monday. I will be doing the same as you. I was surprised that it affects your immune system so badly as I was told it didn't affect it as badly as taxol. Do you have blood tests every week as I was told I would only need one every three weeks?

It's nice to hear you are not suffering side effects other than tiredness which I expect any way.

I hope it keeps working well for you.

Hugs jackie

[thehusband]

Cheers ladies.....and best of luck to you x

[cathysal]

Hi Jackie

Yes, I get a blood test done every Monday and then the chemo every Tuesday for three weeks and then one week off. I had to have a few blood transfusions while on the Carbo/taxol because of low red cells but this time although the've gone down quite a bit it seems to be the white cells causing more of a problem.

I actually get a blood test done every week because even on my week off from chemo I have to go in to get a magnesium infusion - this is because I have a stoma and low magnesium has been a problem from day one really.

I hope you're like me and it's only (only! only!) the fatigue which is the biggest problem. I've gone back to wearing my wig as I now have 'old lady' hair where it's thin and whispy and my scalp is shining through!

Good luck when you get started.

Love Cathy xx

[RuthPOvacome]

We are very sorry to hear that your wife is experiencing symptoms again after 3 months which must be very disappointing. Topotecan is certainly one of the chemotherapies that can be used or the option of a trial. Olaparib has had mixed results and we could contact one of our medical advisory board members for more information if it would be helpful. We are at present not aware of nayone having Olaparib outside of a trial.

We do hope that they are able to find a treatment that your wife responds to and if we can be of any further help do let us know

Best Wishes

Ruth

Support Line Nurse