Re: clinical research: safety & end points and the roads to get ther

[Guest guest]

Entirely possible, tho no actual studies have been conducted

that cover CLL in patients, like us who had early childhood

radiation treatments. I had 3000 rads to my head and neck,

at age 2 and a half. and several of my CLL doctors have

expressed their views that this was the originating problem.

HOWEVER there is NO actual proof at this time. Head and

Neck however is a different level of exposure, than the

feet. Head and neck involved the Thymus gland which may be

at the root of the problem. That is not to say that any

therapeutic radiation on a child is a grand idea. I do wish

that people would consider the age when radiation exposure

occurred as well as dosing in their calculations of risk.

If you have access to your original records, which I do, you

may be able to have someone who specializes in this are take

a look, however it probably won't make any difference, other

than satisfy some curiosity on your part. Oct 11, 2011

article in Hematologica, sent to me by states that

Ionizing radition was found to be one cause of the ATM

deletion in 11q CLL patients, which I am, both. Of course

this was not a study done to prove 'cause' of CLL or missing

ATM, but rather to investigate what missing ATM means in

CLL. Some caution is prudent when trying to fix cause on

something that affects so many pieces of our lives,

especially since our lives have taken many twists since we

were children. However, I was warned over 30 years ago that

my exposure did put me at risk for, at first thyroid cancer,

then others. I did speak to the investigator who headed

many follow up studies on my cohort of kids, and he allowed

that he saw no reason why many other cancers could be

affected by the radiation we had, however his funding had

been cut off and no more cancers were going to be

investigated.... so here we are...

I've just come to grips with it, after all I am still here

after 60 odd years and a heck of a lot of radiation. In

fact, if I were an adult and given that dose in ONE DAY, it

would have been lethal. I wasn't and it didn't. and I'm

still here, and making trouble.... still, with you, I wish

they hadn't done that. Some have questioned why anyone would

allow their children to do this, but before we go there, we

have to look at history. this was done to over 10,000

children at two top hospitals. One was affiliated with the

University of Chicago at the time, and the other was s

Hopkins. Hopkins and the NIH are pretty palsy, in fact

Hopkins gets a huge share of NIH funding. NIH funded the

follow up studies on my cohort, yet Hopkins denies any

knowledge of this study, calling it instead, 'accepted

medical practice' at the time. There are those who question

that. there are various estimates of how many american, and

other citizens around the world, uk etc were involved in

such 'experiments, trials, studies or just plain

treatments..... some say they were NOT experiments, others

disagree. But estimates range at around half a million at

the time... who knows. Eileen Welsom, a Pulizter prize

winning journalist wrote a book on the subject.. the

plutonium files I have a 700 page book that covers Joint

Houses of Congress investigation into this during the

Clinton Administration under Hazel Oleary, who didn't fare

too well as a result of opening that pandora's box... poor

woman. much has been written about the US Human Radiation

Experiments conducted post WWII, many of which continued

well into the 1970's. check out you tube, 'human radiation

experiments', and as for genetics,, check cold spring harbor

laboratory... interesting stuff.... conclusions? no, but

interesting none the less. What's even more interesting is

every time this comes up, no matter where, there follow

slews of responses of " I think I may have been one of those,

or my brother, or mother etc " ..... In any thoughts of

trials, experiments and treatments it's a good idea to have

a pretty firm grip on the history of such things in our

world, even after tuskegee etc etc etc let's not forget

agent orange... medical ethics, human nature and

history...just interesting, but that's me.

be well, Beth Fillman

[Guest guest]

I'm puzzled about references to people " panicking " about CT

scans in trials. In the thalidomide trial I was in there

were a whole lot of things the doctors running these trials

did not know. In trials, I would think that happens fairly

often.

In that trial, one of the unknown things was how long to

continue the patients on the thalidomide. I think a minimum

of 1 year was required but I believe after that it was open-

ended. I continued on it for 2 yrs. The trial had

produced a complete remission and it was my first one. Three

previous cycles of treatment hadn't achieved any real

remission at all.

I think the doctor and I both felt if there was any chance

that continuing on the drug would enhance the benefits and

support the CR, I should take it. 2 yrs after I started,

however, I was scheduled for heart surgery and told I had to

stop the drug. Consequently the surgery was postponed and I

faced a choice about resuming the thalidomide. I wanted to

live a normal life again and thalidomide did not really

allow for it, so I stopped. My doctor was wholeheartedly

supportive.

Another part of the trial that was unknown was how

frequently to order CT scans. The protocol called for a

certain number; I think it was an arbitrary decision made

I'm sure for the best of reasons. But I'm also fairly sure a

rationale for fewer scans could have been found if it had

been deemed better for the patients back then. I've learned

though that there is often great enthusiasm surrounding

trials and I think even good, patient-oriented doctors may

push past certain things in their enthusiasm.

We all make similar choices all the time. It's important to

visit a relative in another state so we get on a plane or

jump in a car and (usually) don't worry about it even though

the chances of surviving a plane or serious car crash aren't

good, i.e. priorities get set for all kinds of reasons and I

for one believe doctors are human.

I've never panicked about the number of CT scans I've had.

It's comforting to know that age-wise, the damage is

probably less but in general I try not to worry about things

I have no control over. I continue to be enormously

grateful the trial came into existence and that I was

fortunate enough to be in it.