Results: Just got back from oncologist review, he... - My Ovacome

My Ovacome

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Just got back from oncologist review, he had my CT scan results and confirmed that Caelyx hasn't worked, I've got to have a stent fitted next week as there is a cancerous lump on one of my kidneys, I then go on to weekly Taxol from the 19th Feb, loosing my hair again for the second time in 14 months, it's just getting to a length and style to!!

Anyone else been on this regime?

Thanks ladies

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23 Replies

So sorry this hasnt worked for you but reading from the other blogs, it seems to work for some and not for others, That is strange but I suppose we are all different. I am sorry you have to return on treatment so soon but perhaps the Taxol will put you into remission. It is a mess losing your hair again but hopefully the gain will be worth the pain

in reply to

Thank you, yes it's a pain but as you say the gain will definitely be worth the pain.

Xx

trix70 profile image
trix70

Hi, I am on weekly taxol also after carbo/Caylex did not work throughout the summer, the ones in the liver grew, tummy ones reduced. I have had 10 so far and it has not been too bad, taste buds, some joint pain, hair gone but feet are getting bad with the nureopathy.

But it is working, ca gone down from over 11,000 to 2456. I think I am having 18 in total so another 8 to go .

Good luck with it. X

in reply to trix70

Hi - glad that taxol seems to be working for you - my mum has just started weekly taxol - the thought of 16 or so more to go is not a nice thought and I know its getting her down - have you been feeling ill all the time or do you bounce back before the next week's dose? x

trix70 profile image
trix70 in reply to

Hi, taxol, it's not been too bad , it's got better as I have gone on, about day 3,4 I get some back and joint ache, taste buds are gone. Felt abit sick when I started but that's gone now. Worse thing is the neuropathy in my feet which seems to be getting worse, hands are fine. Good luck with the treatment. X

in reply to trix70

Thank you.

That's really good news that your ca has gone down, keep going!!

I'm having 18 Taxol then ct scan after 6 to see how things are going.

Good luck to you to x

trix70 profile image
trix70 in reply to

Thank you, it's a long time for 18, but worth it if but works. Good luck to you too. X

in reply to trix70

Thank you xx

So sorry the caelyx hasn't had the desired outcome, it's a horrible drug to have to endure without the results are the end of it.

My mum's just finished carbo/caelyx and is now off treatment for three months or until the symptoms return.

I am very much of the view that cancer treatment is not a one size fits all approach and have always tried to reassure mum not to worry too much if one particular drug doesn't work because there are so many other options out there. Hopefully the taxol will kick the cancer back a few notches for you. Stay positive!

in reply to

Ah thank you, yes I think that to, but I suppose they don't know it works or doesn't work till they try it. I got quite a few horrible side affects with Caelyx which were uncomfortable. So not nice.

Hope your mum has a good break off treatment and feels well.

Thanks again, feel better that I've got another plan xx

gina profile image
gina

I am sorry the caelyx did not work for you. It did not work for me either.

As I have had so much chemo in the past 7 years I am now to go on a trial.

Good luck with the weekly taxol .When I had it I found it to be well tolerated .

I used the cold cap every week and kept my hair. If you can bear it and it is offered

to you it may be worth trying. best wishes Georgie xxxxx

in reply to gina

Thanks Georgie, Hopefully I will be the same and tolerate it.

I haven't tried the cold cap, I will definitely consider it though.

I hope things go well with the trial, good luck xx

LesleyGreengran profile image
LesleyGreengran

Sorry to hear that but the weekly taxol does seem to be effective x I haven't been on it myself.

Juejue profile image
Juejue

Hi the caelyx didn't work for me either , had 5 treatments now just swapped to carbo taxol for 6 , 3 weekly . I'm not sorry to leave the caelyx behind I felt ill for the whole 4 weeks till the next one , already feeling a bit better so hoping my ca125 reflects that in a couple weeks . I tried the cold cap but had the worst brain freeze and would have had to leave it on for 5 hours to make any difference, give it a go though Some tolerate it well, i would have love to have kept my hair , it had just got to my shoulders too !! Wishing you lots luck the weekly taxol seems to work well for so many . Jue x

in reply to Juejue

Wishing you all good wishes Jue, I had carbo taxol first line and ca level came right down with every session, had good results with it.

Yes I know what you mean about Caelyx, I had lots of skin and mouth problems very uncomfortable.

I've seen other women who are trying the cold cap and get lots of mixed reviews on it, so will think about it I think.

My hair is just above my shoulders and just getting into some kind of style now, but we will see.

Thank you for your best wishes, here goes!!

Take care xx

francescahannah profile image
francescahannah

Hi, Yes I've been on weekly taxol and apart from the hair loss and a little bit of neuropathy which eased afterwards it really was easier than other chemo regimes I've been on and I'm on my 7th lot of chemo now so i have sampled most of them!

its a pain losing your hair again so soon I know. I'm losing mine again at the moment on a new targetted chemo on a clinical trial at the Christie. i hope you do well on it. It worked well for me too and caelyx didn't.

all the best Francesca xx

in reply to francescahannah

Thank you, no I won't dwell on it, it's got to be done! That's good to know, I'm hoping it will be the same got me.

Good luck on your trial hope things go well for you take care and thank you xx

Beth25 profile image
Beth25

I just finished 12 rounds of weekly carbo/taxol. And found it much more bearable in terms of side effects than the standard 3 weekly regime. Also used the cold cap and kept all or most of my hair - really don't think I lost a strand more than usual and after the first 10 mins, which are really freezing, it was fine. I haven't had my end of chemo scan yet but 3 weeks ago my CA 125 had come down to 79 from over 1000 when I started and I'd also had caelyx in the past. Best wishes as you start again and hope it all works for you. x

in reply to Beth25

Thank you, that's really good news for you, wishing you best wishes.

That's fab that you didn't loose your hair to. I am really thinking about the cold cap this time, thanks againxx

JPTjpt123 profile image
JPTjpt123

I have just had my last dose of Caelyx but this week have enjoyed having nausea, vomiting, diarrohea, bloating and no appetite whatsoever. I wonder if this was natural after all the 6 doses I have had. Did you have the same. I don't think my CA125 has gone down a lot so I don't know what my next option is. Maybe like yours Taxol. I didn't lose my hair with Caelyx but maybe will with the Taxol if that's the way I have to go. Let me know what you think.

kind regards

Maria

in reply to JPTjpt123

Hi Maria with Caelyx I had more skin and mouth problems, although I did have sickness on the first one, it's horrible isn't it, my ca level was steady on the first two then went up on the third so oncologist sent me for a ct scan. I didn't loose my hair or it didn't go thin either on Caelyx. I didn't have bloating or loss of appetite, we all react differently don't we, hopefully Caelyx has worked for you, let me know will be thinking of you good luck, it depends on your ct scan to xx

Julie40 profile image
Julie40

It's a pain losing your hair again I didn't even bother letting mine grow again as he told me I would be on taxol again at some point. I do really miss my hair.

Hope you get great results on this treatment xo

in reply to Julie40

Thanks Julie, yes it's a pain, I don't think I will bother letting it grow again, will miss mind to :(

Hope you are getting on ok x

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