My Ovacome
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Does anyone have info on Topotecan?

Hello everyone. I have PPT and finished first line chemo end of Feb. In May I could feel the ascites building up again and mentioned this when I saw the onc at end of May. Was sent for CT scan and today went for results - yes, the so and so is back and more chemo necessary. As it is too close to last lot to have carboplatin again, I will be given Topotecan. Has anyone had this, or does anyone have info about it? I know I will probably lose my hair again, but still have the wig! Would be grateful for any input.

Also, thanks to all for previous discussions on PICC lines, I am speaking to someone regarding pros and cons of having one fitted as I am generally ill when needle is put in back of hand.

4 Replies

Hi Lucy

So sorry it's back so soon but hopefully the Topotecan will get get working on it quickly. I started on this drug 3 weeks ago, once a week for 18 weeks. So far no particularly horrible side effects, some nausia, fatigue and a bit of constipation but non of it really bad. Hair still on my head, it may thin but won't necessarily fall out. Too early to find out if it's working yet but symptoms certainly not getting any worse so I'm optimistic. This is my 4th line chemo by the way. As far as lines concerned I did ask about it but they only do it if really necessary and for the time being will use a combination of veins in lower arms and hands to try and avoid too much stress in one particular area. I have to say lower arm areas much more comfortable than hands so far. Can't add much more at this stage but your welcome to keep in touch via private posts if it would help. Good luck and if my experienice so far is anything to go by please don't worry you'll be fine. XXXXXXX. Meryl


I had topotecan last year as 4 th line. My treatment involved 5 days a week every 3 weeks. Trouble was mine was the spring period and getting 5 consecutive days on a 3 weekly basis was difficult, so sometimes had to go 4 weeks. No side effects apart from losing my hair, but after 3 sessions my count started going up again. I finished the course and almost immediately changed to another drug regime. Everybody is different, and no two doctors seem to treat the same. I have just started regime no 6!!

Good luck.



Hi Lucy

I have just started my 3rd session of Topo, I get it once a week for 3 weeks then a week off (that's a session). I've had this 2 times now and as I say just started on third.

So far I have lost no hair and suffered only very mild side effects, a bit of nausea and constipation which I manage by diet - fruit and fluids. The premed - anti sickness one gets tends to cause the constipation - it seems to dehydrate you. I also try to eat light before a treatment - baked fish in a little white wine, or in a pie. I should say I tend not to take much alcohol.

I do get tried and so try to pace my day.

Topo is hard on the red & white blood cells - the first brings tiredness latter weakens your immune system, I try and avoid busy social places on the 3-4th days to reduce contact with possible "bugs" going the rounds.

I find it much easier to tolerate than carboplatin and taxol which I've had twice.

I have a PICC line which makes life much easier so don't have search for vein each week. I'd recommend that - if it isn't offered ask. It's easier on the veins too.

Hope this helps. and we're thinking of you. Hugs. Cara


Thank you ladies for replying.

Thanks for info Meryl. I would have stuck with the needles each week if I could have chosen my chemo nurses! There were two who seemed able to find veins in the lower arms no trouble and it was less stressful than back of hands. However, I have had a phone call today from a lady who fits PICC lines at Clatterbridge and she thinks it will be the best thing for me - I will let you know how it goes. So PICC line fitting 9th July, pre-chemo assessment 10th July, and chemo starts 11th July - busy week.

Yours sounds as though it was really intense Viv, and am sorry it didnt work. I remember that you had to have ascites drain before this latest treatment. It was considered for me this week but they decided the pressure wasn't great enough and I have to weigh things up next week and contact the MacMillan nurses if I think mine is getting worse - then they might drain it before chemo.

Like Cara my treatment will be once a week for three weeks then a week off. Perhaps I wont lose my hair again while it is spread out this way. Glad you recommend the PICC line.

When I had gemcitabene it was hard on the blood cells and when I asked if there was anything I could do the nurses said nothing, just had to wait for body to get back to something like normal. I'll have to go on

Worlds Healthiest Foods website and see if there are any foods that help!

Thanks for hugs and good wishes, much appreciated. Will let you know how I get on.

God bless


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