My husband was diagnosed with CML 12 days ago- so we're new at this. He has yet to start treatment. He has been offered a chance to enter a clinical trial designed to show whether Bosutinib is a better first-line treatment than Imatinib. On the trial, he would be randomly selected for either of these. The trial lasts for 5 years. Alternatively, he can attend the local hospital and take Imatinib. Any thoughts? Is anyone here on the trial? experiences of other clinical trials. We are coming to a decision point and he doesn't know which would be better.
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Hello, and welcome to the group. This site is wonderfully useful, and most if not all your questions will get some sort of answer from someone who has faced similar problems.
For myself, I have just finished 5 years of being on a clinical trial, in my case it was imatinib v. dasatinib, and I was given imatinib. I would recommend taking part in the trial, for several reasons.
1. You are likely to get more time to discuss the disease and symptoms with your specialist nurses and consultants
2. It is only by holding clinical trials that advances in medicine can be made.
3. If your husband does not do well with whichever pills he is given, this will be picked up quickly.
As I understand it, one may leave a clinical trial at any time if one is unhappy with it. There may be other factors in your eventual choice, for instance, would your husband have to travel much further to a specialist centre if he goes on the trial? In my case I was lucky, as the hospital I attend is quite near my home and I would have been treated there in any case.
Whatever you decide, I hope it goes well for you both. It is a very difficult time, but please do keep on asking questions!
Olivia
Hi and welcome,
I totally endorse what Olivia has said about clinical trials for CML. Both imatinib and bosutinib are very effective treatments for chronic stage CML with bosutinib being one of the 2nd generation TKIs... which means that imatinib was the original TKI which changed the prognosis of CML for the majority of people diagnosed in chronic stage. This drug was extremely successful when it was first introduced to the wider CML population from 2000 onwards. 2nd generation TKIs have built upon the success of imatinib and attempted to target the abnormal cells in a more defined way- there are 4x 2nd generation TKIs available depending on individual responses to initial therapy with either the 1st generation imatinib or 2nd generation nilotinib.... both of these are available at 1st line therapies through the NHS.
If your husband declines the clinical trial, then he should be given the choice of either nilotinib or imatinib. Depending on his preference he should be given the choice.
However, I do agree that clinical trials do give some advantages. All of which Olivia has outlined in her post.
Several people are treated with bosutinib and have responded very well. All these drugs have side effects and while one can suit an individual another might not. Regarding bosutinib the majority do suffer from some kind of gastric disturbance in the initial weeks.... but this is managed very well and will - for most- disappear as the body gets used to the treatment. Imatinib can have other effects.. most notably for a majority, fatigue and aching/cramping muscles in the first few months of treatment... again these effects do get better with time and are manageable for most people.
All in all, having been lucky enough to be part of a clinical trial of imatinib in 1999, I would encourage enrolment. Not all trials are equal, but for CML you do get randomised to clinically effective drugs- rather than with trials for other conditions run the risk of being randomised to a placebo!
Best wishes, I am sure he will make the best decision that is right for him.
Sandy
Hi,
I'm on the same trial - I was diagnosed on Tuesday and started taking bosutinib on Saturday (quite scary how quickly things are moving - I only went to my GP with suspected anaemia five weeks ago!). So far, so good - I've had very few side-effects, just slight abdominal pain and very mild nausea.
I'm really glad I'm on this trial - with this, if the bosutinib doesn't work out, I can still take imatinib so it's an extra line of defence.
Do let us know what you and your husband decided on - there's only one other person on this trial at my hospital so I'd be interested to hear how other people get on with it! Best of luck.
All the best,
Fran