After finishing 7 months of Caelyx in early December I saw my Professor Onologist yesterday. The Caelyx was 3 line treatment, having previously had 2 courses of carbo/taxol with six months remission each time. I was expecting, at best, that the CT results would show 'partial response' which is what happened last time and means that the tumours have reduced by 30% or more. I was amazed when Onc. told me that I had had a 'complete response' and there were no visible signs of any tumors on the scan. I think 'gobsmacked' sums up my reaction. As I've had virtually no side effects on Caelyx I really did wonder if it was doing anything.
So ladies, just because you have to have more then one course of chemo, it doesn't mean that it can't be really effective down the line. I know OC can't be cured and that those pesky little cells will start replicating again at some point, but at least this time they will have a really low base to start from. So for the time being I'm really going to put this horrible nightmare firmly at the back of my mind, hopfully at least for a few months (or nore) again. My CA by the way is down to 9, it was 6 last time and 11 first time.
I feel really great and I'm busy packing for a six week trip to New Zealand on Tuesday to spend time with my son, his wife and my 3 lively grandchildren. With this news I couldn't be in a better frame of mind to enjoy my trip.
Hang on in there ladies and I hope you all get to be as 'gobsmacked' as me by the end of your chemo.
Meryl XXX
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Meryl
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Thanks so much everybody for your lovely comments. Will keep in touch with the site whilst I'm away, it's a bit addictive being part of such a great community of supportive ladies. Meryl XXXXX
I am so pleased for you. I am feeling really good about my caeylx next week now. LOL. Did you get any indication after 2nd or 3rd cycle that it was working. i.e. did they do interim CA125 checks? I know caeylx takes at least 2 treatments before you see anything?
I had a CA test every month a few days before each treatment. My CA started coming down from first treatment onwards, in fact if I remember rightly it nearly halved between first and second, and from then on a steady decline, levelling of over the last two or three. Good on you being able to get hold Caelyx - the Professor told me yesterday that because of the worldwide shortage it was being severely restricted and production wasn't expected to be up and running until next year. Good luck with it Lizzie and I do hope you have as few side effects as I did and its really successful for you as well. XXXXXXX
That is very interesting about your CA125. I was told it may go up after the cycle 1 regardless of whether it is going to have some effect, and only after cycle 2 if you you see some levelling off can you be sure it could be having some effect.
Could you tell me how it affected your hair. I used a cooling cap with Taxol which was a long infusion and just added about an extra hour to the day. Since caeylx is only about 90 mins, with the cooling cap it could go up to about 5 hours, so I am thinking of giving it a skip. Although the registrar said I would definitely lose all my hair (the chemo nurses and everything I have read says different). You can start to see why I wanted a second opinion from Barts about everything....
Love Lizzie
X
Dear Meryl
Thanks so much for posting your good news on the site and sharing your happiness and optimism with us all. Well done - and enjoy New Zealand. You're going to have one fantastic happy holiday. xx
I'm sure you will he pleased to know, that despite what the Registrar said, you DON'T lose your hair with Caelyx. In fact when I started on it my hair had only just started growing again from the previous carbo/taxol. It has continued to grow throughout the Caelyx, but, Caelyx can cause thinning, so although I've had it cut twice it's not very thick. Having said that I've never had thick hair anyway. In terms of length of time for the infusion, the first one was 2 hours, the second 1.5 hrs and after that an hour as they were confident I was'nt allergic to it. The only real prolem can be sore hands and feet. Red, dry, with flaky skin. I moisturised with E45 morning, night and everytime I had my hands in water during the day I used Udder Cream. So only an occasional slight soreness that caused me very little problems. Also ome very mild nausia, reflux and mouth ulcers mid cycle but with medication from the hospital to hand for each it was gone almost as soon as I experienced it. All in all it worked really well for me although I know it doesn't suite everybody. I do hope it works as well for you and look forward to hearing how it goes. Love Meryl XXXXXX
Thanks Meryl - Twin Sarah1963 also had a similar tale so to hell with the cooling cap. I know the odds of a response are a lot less for me because my initial response to carbo/taxol was so poor, apparently it means I have 'a refractory disease' which is:-
a disease that resists treatment, especially an individual case that resists treatment more than is normal for the specific disease in question.
However, it ain't over till the fat lady sings!
I have E45 and will get the udder cream if it does not work. Thanks for the tip.
Hi Meryl and Lizzie - I've been following both your updates recently. I am so pleased for both of you that you've had and are having Caelyx and that it sounds so promising. I'm in remission after line 2 treatment so I also look at you and share your relief that it can work.
As I have probs with Taxol, nerve damage, and have become allergic to carboplatin; cisplatin proved ineffective; i am going to ask my onc about Caelyx when I get my review. Thanks for all your comments and have a great time with your family.
Yes the carboplatin, taxol and Cediranib (trial drug) comprised by last chemo. I've been in remission since July. I haven't had caelyx yet but am watching your comments about it. So glad you've got the caelyx so go for it girl - look forward to sunnier days ahead.
Hi Chez - I too am on the ICON6 trial, with carbo/gemcitibane. I'm half-way through my 2nd line course of chemo. Just wanted to ask if you continued taking the trial drug (Cediranib) after you finished chemo and if so, do you have any side effects from it? I've been told I might continue taking it after my chemo, but will still not know if it is just a placebo or not!! Glad to hear you are in remission.
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