Hi all, as above, I have been in the Trovax trial since mid Dec 2014, just had my 7th vaccination today. But my CA125 is now over 8,000 and they want to start chemo , scan date is 5th May. It was a double blinded trial so I don't know if I was on the drug, but if I was, it has not worked.
I had a few pointers that made me think I was, and after the 6th vaccination I felt that lots of things improved and I have been feeling very well, even forgetting I had cancer as I carried on with life lol !!
Burning feet, hot flushes, night sweats all eased off, bowels (although ok) improved, indigestion calmed down, pins and needles in my left arm (left over from my bowel episode last March) all gone. So some good has come out of it.
Still have an issue with my throat and dry mouth over night which I am hoping is linked to the drug and not a spread. Sinus have been bad but then I do suffer with them.
I was surprised they still gave me a vaccination today but was told the plan goes on until progession is confirmed with a scan. There has been no drop in my ca125 all the way through ( this is the first time I have asked ) as I knew it was going to be crunch time.
So it just shows what a sneaky cancer this is - to feel so well and have a CA125 of over 8,000. It will be carbo and caylex for me, typical, bet the summer will be the best for years and I won't be able to sit in the sun or swim.
Sorry results are not better to give you all some hope, but remember I may not have been on the drug, they probaly won't tell me but I will ask.
Best wishes to all, Trix
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So sorry you have to start Chemo again but you have to keep fighting, what more can I say, just try and go with the flow and look forward to better times Gillx
It was good to have your update. I've been thinking of you and wondering how the trial had gone. I have a friend who's just started it in Cardiff.
I'm glad you're feeling well and your general health has improved. Do the trials team say that's an expected outcome of the Trovax?
I do hope they let you know your status on the trial in the debriefing. That's the least I should expect.
Perhaps you won't have to start chemo yet and can have a bit of a break from hospital visits. My team suggested carbo-caelyx but then changed their mind to carbo-taxol next time so I guess I'll be starting that some time this summer.
I think they were trying to see if Trovax would delay time to chemo by slowing down the growth, and comparing two sets of women , one group on Trovax, and one on the placebo.
I did read that Trovax in trials for other cancers had either stablised, reduced or cleared the growth. This may have been the first time it has been used in ovarian. I will certainly ask if I was on Trovax , I think they should tell me.
The oncologist said it would be Carbo/Caylex , but he may have to introduce me to taxol again at some time, as yours has changed mine might by the time I get scan results. I am not expecting mine to be delayed as I have two on the liver and they are growing - sounds horrible.
Look forward to saying hello at the Pennny Brohn next week, best wishes, Trix
That's the thing with some trials, you don't know whether your on the drug or not! However, as you rightly say, you feel like you have gained some benefits and that's good. I just want to wish you well for your chemo. Are you not supposed to sit in the sun when on chemo? I don't recall being told that and I had chemo over the summer months, mind you due to the sudden onset of a surgically induced menopause, I couldn't stick the heat anyway and if I sat out, I was back indoors within 10 minutes lol.
I have always been told not to sit in the sun as your skin is very sensitive with chemo. My oncologist orginally also told me no swimming and no gardening, this due to picking up infections. Yes sunscreen is ok and light cover ups I am sure.
My husband ignored this advice whilst on chemo last year, and sat in the sun without sunscreen, typical man, he ended up with a nasty red rash all down his arms and was told off very sharply by the chemo nurse.
Hi, I was on the same trial and started it the beginning of dec 2014 but came off it on the 7th injection due to progression of the cancer in my lymph nodes, which I already had before I went on the trial
my cA125 dropped right down whilst I was on the trial to 28, its now gone up to 40
out of interest when you had the injection did you have any reaction to it, the site of my injection used to swell up and go bright red and whilst they were doing the injection, I used to go a bit dizzy and very light headed
I am having a scan next week to see if there is anymore progression, as I am not feeling to good at the moment, the usual tummy feeling full and difficulty eating,, so most prob have to go back on chemo
but like you I am thankful as I was on the trial for nearly a year and have had no treatment for 6 months
but as i was told the trial was to control the oc and delay treatment so I think it has done the job
Exactly like me, started mid Dec 14 and have just had number 7 injection and will be coming out of trial. I had tumours in the abdomen and a couple on the liver, but my CA125 has never come down, and things have grown, only 6 mths in the trial.
I only had abit of redness and swelling a couple of times to begin with, otherwise only soreness but I did have a chicken pox blister and as it is admistered in a smallpox vaccine I thought I might have been on the drug rather than the placebo, no dizzyness though.
Like I have said, funny thing is if I did not know things were bad, I would be feeling fine ( must stop saying that, tempting fate). Best wishes to you. Trix
What's with the not being able to swim. Why is that? Can you not stay in the sun a little with factor 30. I am on Caelyx, not seen any mention of this. If I can't swim or exercise I will have to cancel gym membership. Was hoping sometime to be able to do something even if it was just a little swim. I missed last summer and will be missing this summer also. Why can't it be winter when we have treatment I ask? Good luck with yours. Patx
The sun issue, yes I guess a high factor sunscreen is ok and a hat, this was when I was on carbo/taxol, I just read somewhere that on caylex , and it might have been on here, no hot baths or sun , as you may get rashes or blisters. But I will check all this when I know for sure what chemo I will be having.
Also, my husband, on chemo, no sunblock last year, ended up with a nasty red rash all over his arms and was told off by the chemo nurse because skin is more senstive when on chemo.
My oncolgist said no swimming or gardening in case you pick up infections, I did do abit of gardening and wore gloves and took care.
Opinions vary and other oncolgists may say different, and I always refer to the fact sheet they give you with chemo.
Hi, I've just started carbo/Caelyx, and I've been advised to avoid the sun and swimming by my oncologist. The sun because the skin is too sensitive and swimming as there is more chance of picking up a bug. I love being in the sun and the thought of not being able to makes this feel like another side effect to cope to me! I was carbo/taxol last summer too, so like you feel I'm missing out. But I suppose you have to put it in perspective at the end of the day, but again easier said than done.
Saw Consultant yesterday Dawn and was told to be sensible in sun and take precautions. Factor 30 and covering head etc. She also said swimming was ok (my local pool is small private club) but will be taking extra care and not going when vunerable time.
Hi Dawn, you were told the same then, it seems not everyone is warned. It was 2 years ago that I had chemo. I don't sit in the sun for long now anyway, I find it too hot , but love to lie on my lounger in the fresh air and shade with a book and maybe have a nap. So I used factor 30, sunhats and enjoyed the sun, but did not go swimming. My husbands experience showed the damage you can do.
No tan but clear scans is what we all want.
Best of luck with your treatment, it will be interestingto see how we all get on with the caylex. Trix
Saw my Consultant yesterday and as I have just started Caelyx was interested in the sun and swimming question also in the use of Vit B6 high strength and Vit E high strength. The sun issue she said was ok as long as sensible using factor 30 and keeping covered as would be more sensitive. Swimming (as using small leisure pool and not public pool) ok. Vits ok. Everyone seems to have their own views. Just take care I guess. Can't stay indoors all summer, can we? Just going to end up really depressed. Good luck.
Hi, thanks for info, I am not a member of a gym so it would have been a public pool. I no nothing about the vits you mention but will ask, constant learning curve isn't it. Good luck
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