I am coming to the end of my weekly Taxol and am due to have number 16 of 18 infusions tomorrow. This is the last treatment I can have locally as I have exhausted all they have to offer: debulking surgery, taxol, carboplatin, Avastin, Caelyx, Gemcitabine, Niraparub, Letrozole, Exemestane. I am now platinum resistant and am also BRCA negative.
My CA 125 is still rising and my only hope is now to take part in an early stage (phase one) trial . I have a telephone appointment on Monday at the Churchill hospital in Oxford. I am nervous about what the side effects may be but I don't want to give up either
Can any of you lovely ladies suggest any questions I can ask at the appointment?
I really appreciate your responses. Many thanks Sian🥰
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Well done for getting through the Taxol regime Sian.
I am being given this weekly with no breaks at present point in time, till l have scan results. Ca 125 is coming down quickly, so my signs are good. I would be interested to hear how you get on at the Churchill hospital. I started to look at the Dice trial, but rapidly became to ill to see if they would accept me.
I have no experience or knowledge of phase 1 trials so unable to help you. I would strongly advise you to call and have a chat with Anna at Overcome. Anna has a wealth of experience and knowledge and will give you lots of good advice.
Keep up the fight and l wish you strength and good fortune.
Hi Sian - as you know we’re at similar stages ie platinum resistant non brca and running out of options (though Im currently trying Letrozole). I’m talking to my consultant at Barts this week about trials so will let you know if anything useful to share. Jane x
Thank you Jane. Yes we seem to be in a very similar situation. I would be very interested in what your consultant at Bart's has to say. Sending you a big virtual hug 🤗
Thanks Sylvia. I hope that you continue to get good results from your weekly paclitaxel. Please let us know how your scan goes. Thank you for your advice about phoning Anna. She was absolutely brilliant and very knowledgeable about trials. I now feel better prepared for my appointment today. 😁
Hi Sian . The only trial experience I have is with enrolling in one I didn’t end up doing. However they were super informative about everything. You may have mentioned this earlier but some trials are for new applications of drugs already in use so at least you know their safety has been tested. I wish you all the best luck with finding a trial and getting success from it!🌻🌻🌻
Thank you so much for your reply Delia. I'm so sorry that you ended up not going with the trial but glad that they were super informative. Hopefully this will also be the case later today 😊
Hello Sian when I was being considered for a clinical trial I was given a leaflet with some questions that I might consider asking.
What is known about the new treatment or procedure?
How is the treatment given?
What are the possible side effects if I take part in a trial?
What other treatments are available if I don’t take part in this trial?
Will I get better treatment if I agree to enter a trial?
How is the trial treatment different?
Will the treatment benefit me?
Will I have any extra investigations or tests?
Will I be asked to take part in more than one trial?
Do I need to come to the hospital more often?
Will my family doctor be informed?
What if I am worried about an unusual reaction?
What if new information becomes available?
What happens when the research study stops?
What if something goes wrong?
Who is organising and funding the research?
What happens to information gathered for the trial?
Can I find out the results of the trial?
Who can I contact if I have any concerns or problems?
I would ask why they think this trial is a good fit for me and if they know of another trial coming on line soon that might be a better fit.
Most other questions such as how many visits are required each month, how many people have taken the drug(s) to date are usually included in a five or six page information sheet you will be given before consenting to take the testing required before you are accepted. You might ask whether your travelling expenses are paid, normal if the trial is funded by a drug company.
Good luck. If you are accepted into a trial you will find the extra monitoring reassuring.
You know l think you sound one amazing woman l am fairly new to this site,but like you appreciate the others that are going through the same as we are.
But myself l think were all different and dont think you'll actually know until you try it.
But keep going, and stay positive sending you a vitual hug xx
Thank you Neona. These are really good questions. I will ask the team when I speak to them later today. I also worry about multiple visits during Covid and would prefer it if my bloods could be done locally.😊
Sian I don’t know a lot about trials as I am starting 3rd line treatment, the only trials I am aware of are ICON 9 & DICE trial. Wishing you all the best with getting on a trial that works for you.
Thank you Ellsey. I hope that your 3rd line treatment goes well. I was on the Icon 8b Trial but unable to get on the icon 9. I think that they are very picky. I'll find out what they say today at the he Churchill 😊
After so many Taxol infusions you must be reeling. Whilst Taxols are great the cancer cells themselves build up a resistance to them by producing proteins that fight the Taxol treatment. You will know when this is reached as progress just stops. In the USA they are working on this side effect of the Taxols. For another type of Cancer I did go onto Avastin but found it to be both expensive and ineffective. The Lance Armstrong (the TOur de France cyclist) drug Cisplatin does work but has strong nausea side effects. So sorry you are platinum resistant. However your Oncologist must have other alternatives. Remember just never ever give up. Keep pressing on despite the awful side effects. You can beat this.
Thank you so much AlaNto. It is really interesting to hear how treatments vary across the pond. I hadn't realised that Taxols stop working in this way. That would explain why I had an initial rapid drop in my Ca125 and why I have had a tripling of my ca125 in the last few weeks. I haven't had Cisplatin but did have Avastin as part of a trial when I was first diagnosed. Thank you for your support and encouragement ☺️
I never get to meet them myself but they work together with my Swindon oncology team. They are the centre of excellence for the area. Wishing you the very best of luck
Hi, I just read this after 3 months, but hope you find it helpful, if you have not learned about it. In the US, the latest clinical trials are on targeted therapies. They would check if your tumor expresses particular set of proteins. Some examples include mesothelin and folate receptor, both of which are expressed 60 to 95% of ovarian cancers, respectively. They generate antibodies to them, which are then conjugated to taxol like drug component. So, the antibodies will direct the conjugate drug to your tumor, and upon interacting with your cancer cell, they get engulfed inside the cancer cell, and be subjected to taxol component. So, I would suggest, since you are interested in clinical trials, ask your tumor sample tested for mesothelin and folate receptor. Of course there are other tumor markers being examined, but from my readings, these two are the best option for now.
I also agree with Your idea of going for the phase 1 trial rather than later phases, since ph1 tends to be open trial, meaning nobody gets placebo. The goal is however to determine the maximal tolerable dose for the drug being tested, so you might get lower doses that might not be as efficacious. But, you are getting the drug of your interests.
In the US, NIH runs a website of all the clinical trials, which is an excellent source of information. Each trial lists which hospitals and schools participate in the trial. I think you would find it helpful.
God how fab u qualify for a trial - I guess they don’t know side effects so not sure what else to ask ...... but what u r doing hopefully will help more in the future - wish u every success u brave lady 🥰
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