I'm sorry that I haven't posted for a while but things have been a bit up and down for me lately. I have had 13 of 18 weekly taxol infusions. Initially my CA 125 dropped significantly from over 400 to 65. I was very excited that this 6th line of treatment was working. My mid treatment scan showed a mixed partial response and it was Dec that I should have 18 sessions of weekly taxol. Unfortunately over the last month I have been feeling more and more unwell and my Ca125 has risen from 65 to 126. My onc wants me to continue with the taxol and has booked me a scan at the end of October.
This is the last treatment I can have locally. My Inc has said that she will look into phase one trials at the Churchill in Oxford and at the Royal Marsden for me. This really scares me. Has anyone taken part in a phase one trial? What were your experiences?
Thank you in advance everyone. Sian
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Hello Sian - sorry I can't help with phase one trials, but wanted to say, that you have only had a tiny increase in your CA125, it might be due to something other than cancer, could this be why your oncologist wants you to continue with chemo and wait and see what the scan shows?
I read recently that when a cancer cell dies it releases more of the antigen that CA125 measures, hence an increase in numbers.
Hi Sian. I can’t help with a phase 1 trial but wanted to send positive vibes and hope the small rise in ca 125 doesn’t portend anything bad. Hang in there! Xx
Hello Sian, I’ve been on a Phase 1 trial (and Phase 3 and currently on a Phase 2 trial). The care is phenomenal, lots of checking bloods, heart, kidney levels etc. and any other problems are also dealt with even if not directly related to the trial. The draw back is more frequent clinic visits.
You are given quite detailed information such as, at February 2020 for example, 11 patients had received the drug and any side-effects are listed. I always look up the drug’s name to see if it’s licensed for other cancers or is going through trials for other cancers and then I feel more comfortable being patient number 4 say on a particular trial but in the knowledge a much larger number have taken the drug elsewhere.
Each trial has quite strict criteria which is checked before you are accepted. A couple of years ago Ovacome had a presentation on trials which is probably still on line.
Of course it may be that the taxol will keep you stable for some time, even with a CA-125 rise. Fingers crossed.
Thank you for your post and your reply. I'm sorry to hear that you've been feeling unwell and scared at the thought of a phase one trial. If you'd like to talk anything through with us, please get in touch with our Support Team.
My current trial (Atari) is at the Royal Marsden) and I started the initial investigations at their Sutton Hospital as it’s a shorter drive for me. I think I went every two weeks for the tests, but they were very good and tried to arrange several things on the same day, CT-scan and biopsy on the same day, ECGs and blood tests also
I was transferred to Chelsea for the start of the trial (I can go by train and taxi) as I was having a number of problems with driving and parking (the spaces were too small for someone who likes to have three empty spaces together and so it’s not obvious if I end up in a different space from the one I was aiming for. For four weeks I had to go once a week, then every two weeks and shortly I’ll only have to go every four weeks. You’ll need to factor in an extra visit every eight weeks for a scan and perhaps a week’s delay if blood results are not 100%. I’ve had one such delay necessitating an extra visit.
The presentation linked by Julia is the one I was thinking about and she was my consultant at UCLH. There was also another one, last year, by Dr S Banerjee, who is running my trial at the Marsden.
Thank you so much Helen. That is so helpful for me. It gives me a much clearer picture of what to expect if I am accepted on one of the trials. I will also look at the two presentations you recommend.
Hi Sian, I don't know about phase one trials but being on a phase 3 I would say the care you receive is on a different scale. I am monitored very closely and if I have any concerns I can speak to either my trial nurse or consultant very quickly. If you have the chance to apply for a trial, particularly at a centre of excellence, I'd go for it.
I'm sorry you are feeling so unwell but after 13 weeks of Taxol I'd imagine you would be feeling exhausted and wobbly. Good luck with the remaining infusions. I hope you're still wearing that fantastic hat!
Thank you Nicola for your reply. I was also on a phase 3 trial which was brilliant with so many checks and tests. I'm just nervous about a phase one trial where, as my onc put it, " you really are a guinea pig" These trials are for drugs which have only been tested on animals. I am though even more nervous of the alternative which would be to do nothing. I'm not ready to give up yet 🥰
Hi lovely Siân, I can’t help with phase 1 trials aspect, but, I took part in the ICON8 phase three trial and I have to say that the care I received was second to none, I felt safe knowing all my bloods were being done and monitored weekly and full checks made so any issues could have been picked up early, down side was having to go to clinic each week and my veins having a revolt but that wasn’t a major issue because of all the plus sides of the many checks I received.
It’s because of lots of brave people taking part in phase one and phase two trials that I was able to have my treatment under the ICON8 trial regime.
I think if it was me that I’d certainly look into the trial options and see what’s out there for you.
As always, love and big virtual hugs, stay safe lovely lady ❤️Xx Jane
Thank you for your reply. I too was on the Icon 8b trial at the start of my treatment in 2016. I also feel that the care I received was outstanding.
Although I feel scared of trialling a new drug that has only been tested on animals, I am not willing to give up yet and I certainly intend to visit any centre where they are offering trials.
Yes I went straight onto a phase one trial after my frontline chemo failed. I am still on it after 2 yrs and 9 months - fingers crossed for longer. I actually wanted a phase one trial as you are guaranteed to get the new drug- couldn’t see any point in going through everything to find out you are getting more standard chemo or a placebo. I have been very well looked after- nothing to fear at all. The new targeted therapies are much easier than chemo.
Thank you for that. I'd never thought about a phase one trial in that way. Yes you are right. Atnl as Dr you are certain of getting the cancer drug. I'm so glad that it has been successful for you. Could I ask where you are based and where you get your treatment. Many thanks Sian 💓
Yes my oncologist is brilliant, straight talking, no BS, tells it like it is and treats me like s human being. I'm so lucky to have her and I am nervous of having to go to another hospital. She has been amazing throughout the last 4 years since my diagnosis.
If she can find me a trial that can keep me going longer then I'll certainly go and talk to them.
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