I have been searching for simplified ways to express to you the risk from CT scanning without getting overly technical. I hope you all got my prior message that the younger you are and if you are female the risk goes up particularly using the age criteria. Below is a simply put video that gives a brief way to think about your risk IF you have access to or get the radiation readings from your scans. One of the many questions I have not been able to obtain a convincing answer for, is whether an immune deficient CLL patient is at greater risk from the same amount of ionizing radiation than an equivalently aged healthy immune person is? Simplistic logic would seem to suggest there is a greater risk in immune compromised people. The video does not address this.
Video: How much dose do I get from different procedures?
After viewing the above video, click link below for a very cool X-Ray Risk calculator tool. I would suggest playing around with it by putting in information as a 40 year old female vs a 70 year old man to impress upon you where the risk is gravest.
Suggestions for using: Remember to click on the menu for scan type i.e. "plain film X-ray" (default) vs "CT scan" (select each time you change data input). Then select body tissue or area of scan and the calculator will put in a mSv (milli-sievert) value for you. This will likely not be what your actual scans expose you to but it can be a way to calculate relative risk given age and gender. You might want to put in an arbitrary number of scans that are likely in a Clinical Trial scenario for one year, even if you are in the W&W of your CLL journey. I suggest 4 or 5 scans. Since radiation is cumulative throw in 10 scans and see what you get. The calculator is cool in that it gives some other risk data at the bottom to put “risk” in a perspective of sorts. If you keep a log of your radiation exposure from all sources you could easily tailor this calculator to be more specific and accurate for you and your individual scanning experiences.
Wayne, please edit your URLs to have spaces before and after them and HU should interpret them correctly. The URLs formatted this way should also work fine on other forums.
I'm not sure exactly what you mean by spaces as it looks spaced from where I am. Maybe it is me that is spaced(: Should I re submit the whole article or will everybody see the hopefully working links? This is a more interactive post that I hope members will use.
Thanks for heads up. I hope the other links worked. Don't know what I did differently?!
In the above article you have both links bracketed with <>. If you just have www not <....>, I'm certain the links will work fine. I'd edit them only I have a bung hand and am using a tablet's predictive text to write this. Plus hopefully you and other readers will read this and save me future work
Hopefully my screw-up is a learning curve that will avoid future work on your end for which I apologize. I see that Murphy's Law is still working given the timing with your bad hand - It is always reassuring to know we can count on some things remaining consistent(-;
That is a bummer you cannot make the "calculator" links work. It is interactively fun to see your "risk" profile as you "nuke" yourself at different ages and in different ways. I clicked on the links posted by Dick and that worked as well as my converted to tiny url links... I have a Mac desk-top if that makes any difference. The cyber gods work in mysterious ways.
Yeah it is, but I found some good info in the links I posted. If a neck to pelvis scan (plus contrast) is about 10 mSv , then together with a PET scan and another CT last May and the remaining 6 scans, I will have at least 100 mSv. I think I should ask for a thyroid shield, what do you think?
I believe you raise a devilishly hard concern to answer at this time in my learning curve. I have had a very difficult time getting knowledgeable people to answer important questions like your thyroid concern in the Clinical Trial context. Your concern is emblematic of a bigger area of organ tissue sensitivity. I have met two guys recently in their 30s who are both entering Clinical Trials and can expect many scans - so what about the abdominal/pelvic scan and the "family jewels"?? Conceivably they could be looking at Clinical Trial enrollment over a 30 year span.
Ionizing radiation in a pediatric setting is a prime and rightly deserved focus for reducing radiation but none of the papers I have come across discusses the frequent CT use in the adult Clinical Trial setting. I am over 70 now and though I am uncomfortable with the frequency of scans it is easier to justify the risks than with folks <60.
I would bring up your concern with your Doc and radiologist if possible and give us a heads up as to their response.
Your last two links were particularly interesting but I fear many folks will not pursue looking for the detailed papers which are difficult to translate into an individual's actual experience. That is why I was happy to have found the Risk Calculator even with its obvious flaws.
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Does anyone with CLL or cancer, part of \"Downwinder\" radiation exposure from 1950s.
CT scan of abdomen pelvis and chest is that a basis for starting treatment?
Dr. O'Brien on Trial Design, CT scans and the one and only place for FCR.
CT scan after 9 weeks of Obi +Ventoclax. Is this normal practice in the UK?
Should I have a baseline CT scan after a CLL diagnosis? 
