Hello I have not posted for a while but I wondered if any had any thoughts to help me with my dilemma. I have had 18 rounds of chemo and rucaparib all of which have been successful for a while. I also had surgery in 2020 when I was diagnosed. My last lot of single carbo chemo have me a stable few months which I was very pleased with. My consultant here in Brighton has now referred me to see if there is a trial I could go on, at my request, to Guys Hospital in London. There is a trial of a combination drug of antibodies and immunotherapy phase 1 so early stages. Apart from the in patient observation for three days and the travel there is, more importantly an 8 week wait to get on the screening and the screening is 4weeks. Now this might be okay but I have not had any treatment since Jan 23rd this year. The alternative to this is weekly taxol in Brighton until it stops working and then the possibility of more chemo with a different drug. Apparently I cannot start the taxol and then go on the trial as you can only have had 3 lines of chemo to be eligible. I know there are no answers to this but just wondered if anyone had any thoughts to assist me with my decision. Thank you in advance. BB.
Wondering what to do: Hello I have not posted for... - My Ovacome
Wondering what to do
Timing is often a factor with treatment decisions. You could do the trial screening and make a decision then. You could still say no then opt for chemo. Usually standard treatments, such as weekly taxol, would be prioritised over a phase 1 trial. However, if the trial looks promising, the taxol would still be there ( if you did the screening and either did not get on the trial, or did get on the trial and the drug was unsuccessful). The question that needs to be asked is what is most likely to control the cancer at this point in time. How much leeway do you have, for example at my most recent relapse, immediate chemo was recommended whereas previously, I was on watch and wait for three months. Sorry for rambling but this indeed is a dilemma but one, I feel, that you should really try to work out what's best for you right now. Good luck!
Hello Cheadle Thankyou very much for your reply. It was very helpful and it has given me alot to think about in a good way. I will certainly be asking the oncologist at Guys her thoughts on what she thinks will best keep the cancer at bay. I know she can only give me her opinion if she is willing to. I hope your journey progresses positively and thank you so much for taking the time to reply. Keep on trucking. BB. xx
Hello to you your story practically mirrors mine, also same age as you I to am under consultant in Brighton but live in Eastbourne my treatment has been grim so much so I am trying to swap to Royal Marsden but still waiting to hear. I have had to take control of the situation because the neglect has been awful but I have never been offered a trial but all I can say is go with your gut instinct you will know what that is I have no cover at the moment I have had to walk away from my previous hospital and try and find someone who has time for me. In the meantime my numbers are shooting up but I have made that decision and gone with how I am feeling I hope you have good luck for the future
Hello Peewe Thankyou so much for your reply. I was so sorry to read your story about your bad experience in Brighton. I do hope that you get the Marsden to take you on. I can only say my experience in Brighton has been very different. I think it depends on which oncologist you get sadly. It should not be like this of course. I think in the end I will go with my gut instinct when I have finally weighed everything up. I can only say good luck to you and hope you get seen soon and get those numbers down. BB. xx
I have just started weekly taxol as I am carbo allergic and resistant. I have been referred to the Christie for possible trials but nothing so far. I did go to the Christie a couple of years ago for a second opinion and found it really helpful to talk to another oncologist. I think you could go and see what they say at least, as you will not be committing to anything straight away and they may even offer other options for you. As you say it depends on whether you can afford to wait and only you and your oncologist can decide that unless you get an early appointment at Guys. This cancer seems to ask us to make impossible decisions without the benefit of hindsight all the time...there are no easy answers I'm afraid but I wish you all the best and sometimes you have to follow your instincts. A few weeks ago I received a very gloomy conclusion from one Registrar who told me it was the end of the line and they couldn't treat me any more. I was then informed by another that my latest CA125 was more encouraging and that weekly Paclitaxel would be an option.It has made me feel much more positive although I don't yet know if it is working or not, and I do believe that staying hopeful for the future is the most important thing.
Hi Alice. Your treatment sounds very similar to mine in that I had a very gloomy diagnosis of six months to live and am now about to start weekly pacitaxel at my local hospital to try and hold back the cancer. I hope it does for both you and me. Like you I am staying as hopeful as I can and living as best a life as I can. Time will tell!! All the best
Hello Swimbuddy Just wanted to say wishing you all best with the weekly taxol. I hope it does the job for you and Alice77 and myself if this is what I decide. Wishing you love and strength. BB. xx
Hello Alice 77 Thankyou so much for your very helpful reply. I have a further appointment with the oncologist at Guys next week and I have some further questions to ask as they were quite vague about the trial last time we met. I expect because it is a phase 1. At the end of the day I will be going with my instinct and what feels right for me right now. I do hope things are progressing well for you and you get some good news when you have your next scan. I think it is interesting that different oncologists do not always agree. So it just shows you that a second opinion is a good thing. Keep on going. BB. xx
It’s often very good to go on trials. Maybe give the helpline at Ovacome (0800 008 7054 - Mon-Fri office hours) a ring to see if they have any experience with other women who have been in a similar position? They may be able to give you a bit more info. Whatever you decide - all the best xx
Hello Wendydee Thank you very much for your reply. Ringing the Ovacome helpline is a very good idea. I will give it a try. BB. xx
By the way, as an additional bit of (possibly irrelevant) info, I have a friend in Wales who is on immunotherapy for inoperable lung cancer. She has been on it for several years and feels very well most of the time. She’s an outdoorsy sort of lady, has horses and several other animals, so is very active and is only a couple of years younger than you. I know each type of chemo and immunotherapy treatment is different but it’s given her a lot of hope.
I can only share with you my story, which is that I’ve been on immunotherapy for a few months now and my CA 125 is dropping quite nicely. I wish you the very best of luck.
Hello Leniko Thankyou very much for your reply. I am really pleased you are doing so well on immunotherapy and your numbers are dropping. I will keep this in mind in my decision making. The only thing I would say is that I know that this is a randomised trial so I might not end up being on immunotherapy it could just be the antibodies. I certainly have alot to think about before I see the oncologist next week. You keep on positively progressing. Thanks again. BB. xx
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