tag:blogger.com,1999:blog-19490962.post117283173824407583..comments2023-12-10T10:06:41.979+00:00Comments on mutations of mortality: Bringing a new drug to trialTerry Hamblinhttp://www.blogger.com/profile/06346629921055055879noreply@blogger.comBlogger9125tag:blogger.com,1999:blog-19490962.post-1173865859057976682007-03-14T10:50:00.000+00:002007-03-14T10:50:00.000+00:00Who on earth would want any medical professional t...Who on earth would want any medical professional to willy-nilly ‘make something up as they went along’! Thank goodness the old days are gone and for the protocal of phases 1, 2 & 3 which exists before a randomized controlled trial. In my view no medical professional however good they think they are should monitor anything alone – its arrogant and highly dangerous to think otherwise. The existing protocal protects patients from a these well meaning professional to go out alone on a whim, it also protects the teams who administer to the patients at all levels. The study into CLL and similar diseases as you are constantly posting - is very very specialised indeed with only a handful of medical professionals involved into its research. Perhaps, sharing the ideas with the ‘BIG BOYS’ is the way to go - they do have the finances and facilities to proceed within the protocal - which I repeat, not only exists to protect the patients in the trails but also the medical professionals who will be a team administering and monitoring the trials. <BR/><BR/>As you quoted in an earlier post, many medical professionals treating patients with CLL are themselves not up to speed with the latest and a less informed sufferer may not be able intellectually to discern the good from the not so good - CLL is not selective to any one group. To think a not so good could/might ‘make something up as they went along’ especially for a patient who has little knowledge but lots of trust in the professional - horrifies me. If a CLL specialist is on to something positive – share it – develop it within the protocal – go to the BIG BOYS if necessary. So what if they make the financial gains that’s a small price for getting closer to a cure – isn’t it! <BR/><BR/>I do recall a small ‘start-up’ experimenting recently at a London hospital, the three young men are now very, very sick indeed and have no support post the trails and I am led to believe the company went bust! (can you comment on that one?) <BR/><BR/>To answer your final question in the post - yes, after being well informed I would certainly be prepared to enter into a first line drug treatment - but only within the protocal set up to protect all sufferers and their medical support teams. Reading the responses to your post there would be no lack of volunteers for such a hypothetical imaginary drug. Yours, CLL Jan from Hindhead.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-19490962.post-1173015632779320842007-03-04T13:40:00.000+00:002007-03-04T13:40:00.000+00:00My answer would be a definitive Yes. I think it d...My answer would be a definitive Yes. I think it depends on the basic personality make up of each individual. I am always ready to try something new, something that really might be the cure instead of "washing my clothes in dirty water." Other personality's would rather wait and see what happens to the trial rats and even then, drag their feet about a newer treatment.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-19490962.post-1172950676860453622007-03-03T19:37:00.000+00:002007-03-03T19:37:00.000+00:00"The risk is that giving a bigger dose might be to..."The risk is that giving a bigger dose might be toxic in some unknown way."<BR/><BR/>Since the chemotherapy drugs used in CLL have known toxicities, I would still be tempted to take my chances with this one, especially since it can work equally well on 11q cases, of which I am one.David Arensonhttps://www.blogger.com/profile/13876562687586184006noreply@blogger.comtag:blogger.com,1999:blog-19490962.post-1172915456434559322007-03-03T09:50:00.000+00:002007-03-03T09:50:00.000+00:00Remember it has no toxicity at the doses previousl...Remember it has no toxicity at the doses previously given ie two thirds of the dose that we think might be enough for CLL. The risk is that giving a bigger dose might be toxic in some unknown way.Terry Hamblinhttps://www.blogger.com/profile/06346629921055055879noreply@blogger.comtag:blogger.com,1999:blog-19490962.post-1172914035269084732007-03-03T09:27:00.000+00:002007-03-03T09:27:00.000+00:00If the drug has no toxicity I would participate in...If the drug has no toxicity I would participate in a trial.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-19490962.post-1172874268560210912007-03-02T22:24:00.000+00:002007-03-02T22:24:00.000+00:00"...as first line treatment..." yes, certainly I w..."...as first line treatment..." yes, certainly I would participate!justmehttps://www.blogger.com/profile/00432622549940230450noreply@blogger.comtag:blogger.com,1999:blog-19490962.post-1172870241727900412007-03-02T21:17:00.000+00:002007-03-02T21:17:00.000+00:00Is this a trick question? Why would any CLL patien...Is this a trick question? Why would any CLL patient not want to take part in such a trial. I certainly would.Mary Connellhttps://www.blogger.com/profile/12725694479265957057noreply@blogger.comtag:blogger.com,1999:blog-19490962.post-1172865648566569722007-03-02T20:00:00.000+00:002007-03-02T20:00:00.000+00:00Given that this ideal drug has "virtually no toxic...Given that this ideal drug has "virtually no toxicity" in patients with other cancers, I would have no problem participating in a trial.David Arensonhttps://www.blogger.com/profile/13876562687586184006noreply@blogger.comtag:blogger.com,1999:blog-19490962.post-1172846940042840552007-03-02T14:49:00.000+00:002007-03-02T14:49:00.000+00:00As CLL patient, I would take the drug in a trial i...As CLL patient, I would take the drug in a trial if it were under the care of a CLL specialist in whom I trust.Anonymousnoreply@blogger.com