I have been invited to participate in a study,which is looking at active inflammation in patients with fibrosis scarring. It is purely voluntary to participate in the study. The procedure will involve me undergoing two special scans called pet ct and pet/MRI I will be injected with radioactive sugar and a further scan with dye. I don't know if I should participate in this study, because even though they say it is pretty safe , I don't want anything that would make my condition any worse, but at the same time I would love to help others by them studying my condition.
Appreciate your feedback tried not to make it long winded😃😃😃
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Godgrace
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I had a PET/CT Scan Just 8 days ago, it does take quite a long time, 2/3 hours, mine took 2 hrs and have no ill affects other than the usual bruising from the needle. You can find out more from here:
If I were invited to take part in a trial I should leap at it. But my situation is not yours. From my point of view, as I am still hoping for some clearer ideas about what is going on in my lungs it would be of great benefit. But presumably you have a diagnosis. I think they would not have invited you to take part if they did not believe that it would advance their understanding of your disease. And also that they were confident of the safety.
Thanks for getting back to me. Still intrigued. Does this mean that your Emphysema is not run-of-the-mill, bog standard Emphysema? I have heard of scarring associated with Emphysema.
I would like to help with something like that. I recently had a nuclear stress test and had no ill effects whatsoever. The amount of radiation is minimal.
I hope that you manage to come to a decision that's right for you. Do keep us informed. XXX
It obviously has to be your decision, but I'd jump at it too. It could help others but it might also help you by giving your doctors extra information. Do let us know. Sue x
Thanks so far for the replies, my major concern was being pumped with radiation but a lot of your replies have made me realise the risk are minimum at best.
Do you know who is doing the study: how many people are taking part: Does it just involve the scans you have mentioned: how much of your time will it take: Do you have to keep diaries or answer questionnaires either by email or teleco: does it entail you taking drugs or not taking the drugs you normally take. Just a few questions you might want to know.
If you do take part then good on ya and thank you. Whatever you decide, I wish you the best.
The study is going to be done by the university College London hospitals.institute of nuclear medicine. At this time I do not know how many of us will be involved in the study. They say the most important part of this research is the first pet ct scan using the radioactive sugar.The whole scans would take a total of 4 hrs of my time they claim.my main fear is not contacting cancer due to the radiation even though they claim the chances are slim.Hope this answers your questions. Thanks
On a positive note criteria for studies is very strict hopefully that will put your mind at rest. Equally whilst you are helping with a study they may identify any unknown problems you have before they rear their ugly head which could be sorted. It's a big decision that only you can make but rest assured you will recieve the best of care. Best wishes
It sounds really interesting and valuable and I would love to be part of it but only you can make the decision. The risk, as Stone says, will be very small and think how much good you will be doing. I hope that you make the right decision for you. Many blessings xx
Hi , I too was toying with taking part in a phase 3 Trial medication for COPD , I went up to the clinic and spoke to one of the Drs there , she was very helpful and obviously like you was scared of the risks involved. But like everything all medications have risks . She gave me a list of things that will happen over the course of a year , of which involves lots of health checks , that you wouldn't get at your GP , this is what attracted me , but there is a lot you have to do yourself as in an electronic diary . Reporting everything health wise . This is monitored 24/7 by the team involved and they contact you ammediately if they notice anything from the readings. There are 3 types of inhalers involved , one being normal , but no one will know which one you have , unless in an emergency. Firstly though I'm being checked for Angina by my own GP before any decisions can be made . So a lot to think about . My other thoughts were that all the medication I take now , would have been tried and tested on other people and they are helping to control my health issues. Good luck with your decisions
I too had both if the scans you mention. Had no problems or side effects. Only you can decide if you want to go ahead with the study - go with your instincts. Good luck.
I am on a trial at the moment and went into thoroughly with the lung specialist beforehand. It will have taken a year when it ends in September and entails an injection every few weeks. I also have an electronic diary and if my condition worsens they contact me to discuss my situation. I am really looked after well and am examined thoroughly each time. I have Emphysema severely. My trial was tried with asthmatics first and found to be helpful and so they decided they would try with emphysema patients. Of course, I may not be on the drug it could be a placebo!
They are hoping this drug will help to stop us have exacerbations too frequently.
I just feel if we help science these drugs could be helping in the future, hopefully.
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