HELP

[EilyEire]

have any of ye good ladies ever been on Topotecan my oncologist putting me on it Caelyx notworkin I would appreciate as m uch info as possible, not looking forward to it needless to say, xxxx

[Hidden]

I am sorry I have not had this drug myself but I want to wish you well. Its hard when something doesnt work for you, its unsettling to say the least. I hope the Topotecan will help you and maybe some of the other ladies with experience, might answer you soon. Best wishes

[EilyEire in reply to Hidden]

Hopefull this one will,could do with a break x

[michelle2]

Hello

I am currently on it and happy to say have not found it too bad in comparison with other regimes. I e just had no. 4 given monthly o 2 to go. My hair has thinned but not total loss and I have a stuffy nose. The worse side effect is tiredness as it is known for hitting the platelets but they reduced my dosage so coping ok and managing to still work through. Good luck with your treatment. I hope it goes well x

[EilyEire in reply to michelle2]

Thanks Michelle that doesn't sound too bad,having mine for 5 days then 2 wks off ,ya heard about platelets, see how it goes , good luck to you also ,hope it works for us xx

[Lost4Words]

Hi, I've just finished Totpotecan and the results were good. Like you I had Caelyx and it didn't work for me so after 3 I was switched to Topotecan on the same regime as you. I did find having to go everyday for 5 days very tiring and the daily steroid injection disrupted my sleep pattern, I usually crashed on the Sunday and slept, also it's a 40 mile round trip for me and I drove myself so that's quite tiring. I would recommend a PICC line as all those needles take their toll, they can leave the cannula in for a couple of days so you may only need two each week but a PICC makes life so much easier. I had a delay after my first cycle due to low bloods and so they reduced my dose, because it's done Mon-Fri I had to see my Onc the previous Thursday so kept having to have bloods repeated on the Mon before treatment. The worst SE for me was trapped wind (day 7-10), peppermint tea helped and trying to keep mobile and unfortunately for those around me not holding it in!! Hope it works for you too.

L4W

[EilyEire in reply to Lost4Words]

Thanks for that Im feeling less scared glad it worked for you,hopefully it work for me xx

[Lovis]

Hello. I've not been on Topetecan yet but it's my next one to try. I've been on weekly Taxol which worked to start with but now the CA125 is rising again. Please can you let me know how you get on with it? We can exchange notes! When are you going to start it? I love the cats on your profile. I've got 8 cats! When were you diagnosed? I was September 2012. Lovis xxx

[EilyEire in reply to Lovis]

Hi Lovis, diagnosed April 2012 , thought I be starting mon but no word from onc nurse so Im presuming it be 1st wk nov as mon wk bank holiday here, I will keep you up to date be good to have someone to chat to ,good luck to US xxxxx

[Lovis]

Hi Elly, Have you heard when chemo is yet? Lovis xxx

[EilyEire in reply to Lovis]

Hi Lovis,no word yet, Im going to ring tomorrow eve if nurse doesn't ring,I hope next wk ,get started. xx