We’d like to know what you all think or feel when you hear the words ‘clinical trial’ - share your thoughts here 
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Without clinical trials we wouldn’t have the drugs we have today. So they are essential to the development of new therapies and I would opt to get involved if I needed to.
Thankfully I have not reached that point in my journey but I do associate a clinical trial with when other options have failed:(
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Hi Elizabeth
From my perspective I always feel very positive when I hear about clinical trials. It shows that basic research has shown enough promise and progress to move from the bench into a clinical environment. Without clinical trials we wouldn’t have new treatments and robust trials are an important part of getting such treatments approved and adopted on a wider basis. Clinical trials often offer patients who have run out of options with current approved treatments further options that they might not have and can offer hope. It’s important to also be realistic and understand that not all clinical trials result in a positive outcome or result in new treatments but overall they are vital part of the journey to new treatments.
All the best,
Peter
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I agree with the comments made already. I see clinical trials as a really positive thing and such an important step in the development of new treatments etc. I can imagine it brings a range of feelings if you are involved in one. It would be really a interesting to hear from people who have been part of a clinical trial.
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Good to hear you all feel so positively about clinical trials, and you’re right we wouldn’t be where we are today without them, a lot of the treatments we use as standard have been through a trial at some point. But it’s also interesting to know that trials aren’t always for when things are going badly or options are limited, some patients go onto a trial as part of their initial treatment, as that’s the best option for them.
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It is really interesting @Elizabeth_BloodCancerUK because if you had asked me when I was first diagnosed what I felt about a going on a clinical trial drug treatment I emotions and thoughts would immediately go on high alert and I would be anxious and fearful and I would have immediately said that you are not trialing a drug out on me, I want a tried and tested drug regime treatment.
Now with the limited knowledge I have so far through Blood Cancer UK I understand a bit more what a clinical trial drug really is.
To be really honest I would still want a tried and tested drug regime treatment, but I would really listen to my consultant and then consider my options.
Perhaps I might be be out of tried and tested drug regime treatments and then suddenly a clinical trial becomes more attractive.
I believe, and I might have got the terminology wrong, that wonderful, expert researchers have developed these new clinical trial treatments and they have been fully researched and tested and that clinical trials are the very final steps before approval.
I believe there can be different types of trial and some involve placebos.
I realise that I probably sound selfish and without clinical trials we would not have the vital, wonderful treatment regimes we rely on to be there for us today, but I am being honest.
Please feel free to enlighten me.
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Same here Erica I would be very worried about being given a placebo and missing out on the opportunity to have an effective treatment early in my journey but if I were at the point were try anything I would of course be willing to support research in the hope that someone else might benefit in the future.
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Really good points from you both and totally understand the fear of having a placebo. Placebos are never allowed to be used in a study if it would mean putting people at risk by not allowing them to have an effective therapy. For example, in cancer clinical trials, placebos are never used on their own they would always be in combination with another treatment.
To explain the different phases of trials.
Phase I trials test if a new treatment is safe and look for the best way to give the treatment, and at what dose. Doctors also look for signs that cancer responds to the new treatment.
Phase II trials test if a type of cancer responds to the new treatment in a larger group of people, while closely monitoring for side effects.
Phase III trials test if a new treatment is better than a standard treatment.
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I wasn’t offered a clinical trial, but my mum was worried about me having any trial (I am in my 50’s!!). I did receive a fairly recently approved chemotherapy so my opinion is that if people hadn’t trialed that then I wouldn’t have had the successful treatment. So, in conclusion, sorry mum, I would be happy to do a clinical trial if it helped others in the future. My uncle died of Hodgkins Lymphoma over 80 years ago and I believe he was an early chemotherapy trial, I’m sorry I never knew him but pleased he may have helped many patients that followed.
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Hello @Suey, thank you so much for taking the time to share your story. Although not all patients are offered clinical trials, we always encourage patients to bring this into the discussion and ask if there are any options available to them. I’m sure your Mum was looking out for you of course, but sadly there are a lot of common misconceptions when it comes to clinical trials, and we actually talked about some of these trial related myths on our website recently. Common myths about blood cancer clinical trials | Blood Cancer UK I’m so very sorry to hear you lost your Uncle to Hodgkin’s Lymphoma. As you say, how wonderful to know he contributed to research and benefited patients in the future. If ever you wanted to speak to a member of our support team about Clinical Trials, please don’t hesitate to reach out: Clinical Trial Support Service .Thank you again.
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That’s really useful to know. I’ve always wondered about the placebo.
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Before I spoke to the Clinical Trials Support Service, my feelings about clinical trials were similar to those expressed by @Erica (as in ‘high alert’ if mentioned). If I was offered a clinical trial now, I think my feelings would be excitement and gratitude, and that’s not just because I’m further along in my myeloma journey: its because I understand more about the benefits that trials can offer to myself as a patient, as well as to other patients of the future.
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Hi @Coastgirl, thank you for contributing to the discussion. It’s so nice to hear that after speaking to the support team you felt better informed and possibly more positive about the prospect of clinical trials in general. Thank you once more for sharing.
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I was put on to a clinical trial during my treatment. At the point I was told about it I had already had 1 round of chemo but the consultants thought that the trial would be the best option and it turned out it was.
After I had my stem cell transplant one of the consultants suggested I go on another trial which I refused. It was either a placebo drug or a chemo drug and there wasn’t any guarantee which one you would get. The main reasons for refusing this trial was I had had enough of chemo, I wasn’t feeling great and didn’t want that to continue any longer than necessary, the trial was for a year and after my first trial I felt like I was a bit of guinea pig and just need to try and get back to normal life. The list of side affects was endless and filled me with no confidence that it would make a difference.
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Hello @Muzza,
Thank you for sharing your experience with clinical trials, I’m sure others will find it helpful to read about your story.
I think what you say is very important as it’s ultimately a very personal decision about whether you decide to partake in a trial or not, but it’s really good to hear that your team have been discussing these options with you regardless and allowing you the opportunity to decide what’s best for you.
Of course, it’s not a one size fits all situation, but over on Cancer Research UK they talk about the potential pros, or cons to partaking in clinical research. which others may find useful to read? The pros and cons of taking part in a clinical trial | Cancer Research UK
Thanks once more for contributing.
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I think of clinical trials as a positive progression towards helping people and I’d like to think they will lead to not only cures but better more comfortable ways of treating and managing not only cancers but other debilitating diseases - without clinical trials my brother wouldn’t be with me now
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I have looked into these clinical trials for Mycosis Fungoides and most of them seem to be in the USA but I live in England!I believe that you have to have something which hasn’t responded to the various first line treatments which is the case with me.Perhaps for more common cancers there are more of them, clinical trials that is?As long as the clinical trial isn’t harmful I’d give it a go as the other things don’t seem to work although obviously you can’t tell what would have happened had you not been on the other treatments perhaps it would have metastisised.Even in the USA there doesn’t seem to be much on the T Cell Lymphomas.
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Hi @Kevan7 , thanks for posting.
It sounds like you’ve already carried out your own search but if you’d like to talk through anything or have any questions, please do get in touch with our Clinical Trials Support Nurses - How our Clinical Trials Support Service can help you | Blood Cancer UK
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One totally personal thought …… my son, wife and two grandchildren live in Vancouver, Canada. I of course like to visit. I haven’t had to pay anything extra on my travel insurance as I have fortunately been “well” with ET.
But I am concerned that I either wouldn’t be able to go to Canada if I took part in a trial - or travel insurance would be refused if I took part one.
There must be others in the same boat ….
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