Apologies for not posting on the forum sooner and for welcoming you on board, as such. Unfortunately and like everyone else, it is probably not the place that you would wish to be, however, I do hope that you find some comfort, inspiration and friendship.
I’m really replying to you from a 2 prong approach, as I have seen that you have also posted under Abraxine, Germcitabine + MM-141 trial - worried wrong choice, as you had concerns that perhaps that you had made the wrong choice, in terms of your Dads treatment. I just want to re-iterate what Leila has said and to re-assure you that your Dad is certainly very lucky to have you by his side, helping him to make decisions in relation to his treatment choices. You have done a lot of research and have carefully considered all the pro’s and con’s….so well done!
As you say, there is never an easy or right or wrong answer. We all do what we think is best, at that particular time and with the information that we have, so please do not have any regrets. If at any point, your Dad feels that the clinical trial is not for him, then he may withdraw from it at any time.
I would also like to thank you, as we were also not aware that this trial was available in the UK. If I am right, it does not appear to be available on the NHS as yet, but we needs to explore this a little further. For anyone who is interesting in reading some further information about it, the link is below:
This second link is an American website that gives a little further information:
Essentially and in really basic terms, MM-141 is the drug being researched. It is a monoclonal antibody type drug and it works by trying to block the receptors or proteins on the outside of the cancer cell, to stop it from growing. The receptor (protein) that it is trying to block, in this instance is an insulin-like growth factor 1 (IGF-1) receptor. It looks like patients need to be tested for levels of insulin-like growth factor 1 (IGF-1) receptor before they can take part in the trial.
People taking part in clinical trials have to be monitored very closely in relation to side effects. The research team will also have very strict guidelines in how to manage those side effects, and this may be specific to the clinical trial and not the standard of care, normally offered. Again, if it’s any reassurance and as you have already mentioned, your Dad will be very closely monitored throughout his involvement with the trial.
I know that it must have been disappointing that your Dads white cell count dropped and that there is a delay in treatment, however, clinical trials often have very ridgid guidance in relation to managing blood counts and the oncologist will have made the decision that is safest for your Dad. This may well be one of the side effects that they need to monitor closely, and it may (or may not) also be an indication that your Dad is actually receiving the trial drug (MM-141), but you obviously may never know this. People who are taking part in clinical trials are also given specific guidance in relation to the specific side effects that they needs to watch out for, when to contact healthcare professionals and who to contact.
I've just read your updated post and am really please that Dad is now able to get treatment....fantastic news!
Also, please do not hesitate to call through to the support line (0808 801 0707) should you have any specific queries and do continue to use the forum, as I can see the forum family has already provided valuable support.
Pancreatic Cancer UK Specialist Nurse
Support and Information Team