difficult decision

Hi folks, I'm feeling well and in Spain this week but been told there is a phase 1 clinical trial of new antiangiogenic drug (cuts off blood supply to tumours) at the Christie which I can probably do. There is little info on its effectiveness so far as only 4 people on it so far and they won't tell me anything about them but I know its for any cancer at present although phase 2 will focus on ovarian. I have to decide by 23rd october and have 3 options, more chemo (cistplatin or if I can persuade him I'd prefer weekly taxol again), clinical trial or do my own thing with nutrition, herbs, meditation, acupuncture, etc.

I now have mets in my liver so need something soon. Have any of you been on clinical trials and if so what was your experience please?

Hope you're all doing as well as poss.

love Francesca x

27 Replies

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  • Dear Francesca

    I'm glad you're having a break away in Spain and no doubt some time and space to think of all the options.

    I've been on a couple of clinical trials, though not Phase 1, and I've had the angiogenesis inhibitor Avastin from from the National Drugs Fund after it had passed through Phase 3 trials.

    I recently completed a five-day course at Barts on the Biology of Cancer and it was enough to convince me not to rely on alternative therapies and totally abandon conventional medicine. Cancer acts at a molecular level and the science of it really does suggest you're best to keep diets and herbs as supplements and complimentary therapies rather than relying on them as alternative therapies. There is another school of thought on this as there are cases where people adopt an alternative approach and it works well for them but generally it's not easy to understand exactly why.

    Phase 1 trials generally test out what has worked in the petri dish and on mice. They are really very closely monitored and you would have very close supervision. I have a few friends have been on Phase 1 trials after they were told there were no more conventional treatment options and they have spoken positively of the experience and have said the treatments have had a positive effect. I know it's possible also to drop out if the trial isn't for you. Another friend took that option.

    You've had some tough decisions to make recently. I am sure once you decide on the course of action you want to take you will feel relieved.

    I hope you are still managing to enjoy your holiday away. xx love Annie

  • Annie, do you know where the article was published about Sharon BRCA J's experience of being on trials?? Was it a RM magazine, I think I saw it a couple of months ago...? Just read Francesca's post and was thinking of it... Much love Sx

    Dear Francesca, no knowledge or advice but plenty of good wishes for you and all hopes that you get all that you can from the rest of your time in Spain, much love xxxx

  • Yes it's in the current Royal Marsden Magazine which you can pick up at the hospital. I'd give you the URL as you can read and download online but the RM is having problems with that area of their website.

    I'll write a note to myself, keep trying the website and if the problem is resolved with post up the URL.

    xx Annie

  • thank you, I always like hearing from you, and its lovely and sunny here! probably will go for the trial

    love francesca x

  • thanks Annie, Useful food for thought. I'll probably go for the trial and I'm really enjoying being here in Spain.

    love Francesca xx

  • Hello Francesca ..

    I'm glad you're feeling well at the moment.

    I can only say what I would do. I think I'd go for the trial and if there's no improvement with the new drug, you've always got carboplatin and/Taxol as a back-up. I'd ask assurances about an overall plan from my oncologist first.

    I'd also think about the possible side effects of the new drug and base my final decision with them in mind.

    You'll probably be monitored more closely with being on the trial.

    You asked for views and I know this is what I'd do, but I'm not you and only you can decide, of course.

    Sending you a hug.

    Xxx

  • thanks Tina, Probably will go for the trial but good to get feedback here and I'm loving the sunshine and sea at the moment so it all seems a lng way away!

    love francesca x

  • Brilliant! And it's sometimes easier to make the decision when away from home. That's what I feel anyway. Xxx

  • Hi, I have to say you have nothing to lose with the trial because you have a back up if it doesnt work so I have to agree with Tina but ultimately it your call of course. Wishing you well, best wishes

  • thank you and I think I will go for the trial, its just that it means going to hospital every day mon to friday but maybe it will be worth it

    love Francesca x

  • Hi, I went on a phase 2 blind trial, Trovax , myself, Dr and nurses did not know if I was on the drug. Must admit I would not do a blind trial again, when you have symptoms it's hard not knowing if it's the cancer or the drug. It was very time consuming, lots of travel and blood giving. If I was on the drug it did not work and the cancer spread and I also think they left me too long before starting chemo again. But - if you are definitely getting the drug that's a different matter. I cannot see why they do blind trials. So maybe it's worth a try and you have chemo as a back up. I wish you well with your decision. Trix

  • Thanks Trix, It will be very time consuming but it will be the actual drug so think I will do it.

    love Francesca x

  • Hi Trix, I totally agree with you about double-blinded trials and have lobbied against them at various research meetings. I think it's cruel because there are patients who go on trials as a somewhat desperate hope it will do some good and they'd be worrying throughout the trial about every little itch and ache and pain and they would still not know if they were on the trial drug.

    Having said that the trial I'm on is double-blinded. I read up the trials data and a couple of background scientific papers to find out the effects of the drug and I learned it will derange certain elements of my blood - potassium in particular. I suggested my oncologist would know if I'm on the drug from the first blood analysis after 3 weeks and she agreed it is likely she would. I then said I assume i can ask to see that blood sample result which wouldn't normally be shared with a patient and she agreed I could. That's what I intend to do - unless my probing results in being expelled from the trial before it even starts! lol

    Annie

  • Hi Annie, totally agree, I had so many digestive problems, and other stuff going on throughout the trial and didn't know what was causing it.

    Good luck with your detective work in the trial, that's very clever, hope they don't rumble you.

    Trix

  • Hi Annie

    None of the trials I have been on have been double-blinded, probably because they gave mainly been phase one trials. I have always seen and discussed my blood test results with my doctors so I am sure that will not be a problem with the trial protocol. I like to know what effects the drugs may be having on the rest of my system.

    I have also posted a link to my RM article in my reply to Francesca below.

    Best wishes

    Sharon

    Xx

  • Thanks so much for posting the link to your article. I'm glad that part of their website is up and running again.

    I'd imagine Phase 1 trials don't have a control group. Nor do some Phase 3 trials. I remember for OCEANS trialling Avastin at second line 100% of participants received the trial drug, and for DESKTOP which looked at surgery at first relapse you'd know if you were in the control group as you'd only have had chemotherapy and no surgery.

    The more you learn about this disease and how it's managed the more there is to learn. It's practically a career! lol

    x

  • I read your story today, that is quite a road you have travelled and still fighting, that is so admirable the way you haven't crumbled but fought on. Considering how open minded you are in terms of alternative approaches my guess is the trial tempts you. I have to say after all the chemo you have had why not, it may be a turning point. I know phase one is a very early point though. What do your family think?

    Keep fighting the good fight you are doing well.

    LA xx

  • thank you Lily Anne, love that name, my grandaughter is called Lily Francesca. I will probably do the trial and still do reiki, acupuncture, etc. Unfortunately I'd have to stop taking vitamins etc but can still have really good diet. Its so lovely here in spain at the moment it all seems so far away

    love Francesca x

  • Hope you're enjoying your break.

    I am hoping shortly to start a phase 1 trial, in preference to more chemo, at least at this point. Everyone else has said what I would have said! Phase 1 trials are an early stage in exploring possible therapies, but it is known that the antiangiogenetic approach seems to work well for some people.

    You'd be closely monitored, and you've got the chemo as fallback if it doesn't work for you.

    Good luck whatever you decide to do. xx

  • I haven't been on a trial but my brother in law is a consultant geriatrician. When I was diagnosed he was trying to get me on a trial but my cancer us so rare no trial would be worth it. He said you get the very best treatment and are followed much more frequently. If I were you I would count myself very lucky and jump at it.

  • thank you and I think your brother in law is right and I probably will do the trial, although it means going to hospital every week day for injections and blood tests, etc

    love Francesca x

  • Enjoy your break for the moment and concentrate on your decision when you get back. Pretty sure you will make the right one.

    Love and Best Wishes Patx

  • Francesca I really feel for you having to make this decision however I believe any new trial is worth giving a go. I've been on a couple of trials and have been recently asking for any trials to no avail. I have just started the Rotterdam Regime had my second last Thursday. This also being my 6th line. At first I refused this treatment (long story) but after my break in Spain I felt stronger to take it on. Enjoy Spain and I'm sure you will make the right decision for you. Sending you a cyber hug. Linda x

  • thanks Linda, I think you're right but how are you getting on with the Rotterdam?

    love Francesca

  • Hi well I'm coping ok at the moment. I really wanted to get out today for a short walk but it's not going to happen....fingers crossed for tomorrow. I'm listening to my body and resting. Fatigue, nausea and pain under ribs which I'm using imagery as to the treatment working on the tumours and doing its job. Hugs Linda xx

  • Hi Francesca

    I am currently on my fifth clinical trial (four of which have been phase 1 trials). Three years ago I chose to go on my first trial instead of having traditional chemo as I have the BRCA mutation and was hoping a more targeted drug would be more effective for me.

    Here is a link to article I wrote for the Royal Marsden magazine about my trial experience: issuu.com/royalmarsden/docs...

    My current trial is going well and has been extended past the original 6 cycles as I am still responding well at the moment. I am aware though that my cancer eventuslly finds its way round any treatment including the trial drugs but so far the RM team have kept coming up with something new to offer me.

    I have found it very rewarding taking part in the trials but I realise they are not for everyone.

    Happy to answer any questions you may have.

    Best wishes with your decision.

    Sharon xx

  • Hi Sharon

    that's really encouraging and useful info. I probably will do the trial although it means going to hospital every weekday for blood test and injections for up to 24 weeks if it works. At least its not meant to cause problems for my white cells so can still swim. I'll read your article

    love francesca x

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