I have been to see my onc today and am being booked in for a scan next week. the good news is the I have no acestites that needs draining and the little amount of fluid should go by the time treatment starts. My onc has given me three possible chemo regimes. caelyx if he can source it for me ( it was unavailable last Dec when I had my 2nd line chemo) topotecan, or the option of a daily tablet. can you ladies give me a first hand experience of how these chemos are and how often you have to have it( i have heard that topotecan is taken over a week at 2 hours a day every three weeks). my last chemo was plaxitel and gemcetobine and it hammered my white cells and left me very poorly and my onc is worried that the topotecan will do the same.
I am naturally very worried about how I will deal with it all but I know that I can be prepared for it if I know what to expect.
thanking you all in advance for any advice given lots of love xxxxParvin
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I'm just off for my scan in a few minutes, hungry and the thought of that revolting drink ugh!!!!!
I had Etoposide in tablet form for my 4th line it shrank the tumour but my CA125 was 80ish when I finished.
My onc told me a few weeks ago Caelyx would not be available for about three years but maybe yours will be able to source it, if so please let me know. she did however say there were two others the names of which I can't remember but will let you know after I've seen the onc on the 7th.
I did have to have one blood transfusion on the etoposide but other wise the side effects were minimal.
Please could you tell me how long you were on Etoposide? I am due to go on it in September. I had six weeks of Cisplatin and four weeks of Etoposide then a break but I was quite poorly after so it has been a longer break than it should have been . Did your hair fall out I have been warned this could happen, it is the nausea that most concerns me. Thank you and good luck with your next lot of chemo. Love Susan x
Hi yes I was just enquiring how you had been on Etoposide as I am going on it in three weeks after my holiday. I believe my hair will come out again I am concerned about the nausea as when I had the tablets with Cisplatin I was very unwell . This is classed as maintenance therapy was it the same with you? I would be grateful for any info Thanks Susan??
Did my message come through or most likely I pressed the wrong button and its shot off into the ether?
I was fine on the Etoposide except for Hair Loss,the usual constipation and nauseau for one morning. I have been very fortunate in never having had nauseau before on my other chemos so when I read the instructions on the anti nauseau tabs they said not to be taken if you have epilepsy so I just left it and the nauseau passed.
They didn't say mine was maintenance therapy but as I've been told it's incurable but treatable I assume it's the same thing.
I took the etoposide twice a day for ten days then had eleven days off. this was for six cycles. I think the reason the side effects are so minimal is because the poison is being taken over ten days so a smaller amount in your system in one go.
Just before the last cycle I did have a blood transfusion.
My CA125 started around 250 and had come down to 51 before the last cycle but then went up to 80ish but I was told that was probably because I had a really bad cough.
I see the onc next Friday but I feel ok apart from small amout of pain which I manage with paracetamol.
don't forget you qualify for a new wig!!!!
Hope this has explained everything. Have a good holiday anywhere nice?
Hi gosh these regimes are all different I will be having one a day for three weeks then one week off for how long I am not to sure! I have had a lot of nausea but cisplatin is very harsh and I am hoping it was that and not the Etoposide. Yes I have got a wig but I didn't wear one last time my hair fell out I had lots of nice hats. We are off to Scotland in our caravan The Mull of Galloway really looking forward to a change of scene. I should have started on the tablets three weeks ago but had been so poorly I didn't feel my body could cope so my oncologist said I could wait till after my hols. Thanks for getting back to mexx
It's strange isn't it different hospitals. Perhaps your onc just thought it would be better for you spread over 3 weeks I hope it was the cisplatin giving you the nausea.
I hope you have some good weather up in Scotland. Take care when manouvering (sp) the caravan.
I had caelyx in 2009/2010. You do not lose your hair, however the main side effects were sore feet, hands and mouth. I know that sounds really random, but I had big blisters on hands and feet and a mouth full of ulcers. Very sore and meant eating was a bit of a problem! However disease has been pretty much stable since then (2 years). Only took two hours on the drip (a whole lot better than the day you need for taxol/carbo) Had 6 teatments, 3 weeks apart.
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but I did have a new wig very glam.:). love Marilyn
Successful first line treatment
Second line treatment on the way
Last line of treatment(most likely)
End of the line for treatment I think.
