Some CLL clinical trials insist that patients have multiple CT scans. Every test should have a reason.

[bkoffman]

Special Article: The Cumulative Risk of Multiple CT Scans on Blood Cancer Patients Enrolled in Clinical Trials by Board member Bob Levis. Some CLL clinical trials insist that patients have multiple CT scans. Every test should have a reason. Patients should ask questions!

cllsociety.org/2021/09/the-...

[jorum]

Thanks for this Brian. It is very helpful and something that worries me from time to time.

I am on a trial that had a number of CT scans upfront and during the first 12 months. I considered this the cost of going on the trial and accepted the risk.

The problem was that periodically, I have been asked to sign a new patient consent forms. Three years into my trial, a new consent form was presented that required a CT scan every 24 weeks, regardless of my health status. I objected. This caused considerable angst particularly with an overly zealous trials nurse. Fortunately my supervising doctor is a reasonable person and we came to an interim agreement that was followed some months later by a change in the patient consent form that did not specify regular CT's and left it to the discretion of the Doctor to specify when they were needed.

Not sure if my link will work but I posted some of the information on Health Unlocked at the time: healthunlocked.com/cllsuppo...

Your article is helpful in bringing this issue to the fore such that CT scans are used a little more cautiously.

Best wishes

Jorum

[JigFettler Volunteer]

I've had 4 whole body CTs.

My calcs and research told me each was equivalent to 7years worth of environmental radiation.

Worthy of caution without doubt.

Just question the organisers, they hold a clinical responsibility for you.

Jig

[wmay13241]

My wife has had four clinical trials. All of them required CT scans. The doctor's reason was to detect progression - sounds reasonable since they were clinical trials.

[Katinlr]

I was in a clinical trial which required scans every four month. After the first three I was in obvious remission with barely perceptible MRD. I refused further scans, and after a bit of drama on the part of the sponsor and nursing staff, I was able to continue the rest of the trial without the scans. Dr. Ian Flinn was the trial physician and supported me all of the way.

[Dahlia7]

I enrolled in the LOXO 305 study 15 months ago and am doing well. The CT requirement was at the start of the study and then every 8 weeks for the first year and every 12 weeks for the second year. I expressed concern regarding the radiation and my doctor agreed. I have been getting 3 MRIs to replace the one CT scan at the required study intervals. It takes 3 MRIs( one per day for 3 consecutive days)to get all necessary scanning done. As I post this I await my 23rd scan since August 2020. Definitely inconvenient but I think it’s preferable to the much more convenient but potentially damaging CT scans. Tony

[johnl]

When I add up all the CT scan I've had from a clinical trial, lung surgery, hernia operations(4), and broken bones it's at least 20. So this is enough to scare the crap out of me. I still have to have a CT every 6 mos to check my lungs. I just refused one after I broke my collar bone.

john

[Vlaminck]

Thank you, all of you who have posted on here about clinical trials, for participating in the trials -- hopefully to bring a light at the end of this CLL tunnel sooner rather than later.

[steve5441]

When I read the article I thought, I've had quite a number of scans since I started in the LOXO-305 study. I would have guessed six, but checking my medical records the number was ten. But you actually get an upper and lower scan back to back. That made twenty, next one in December. Reading this would not have changed my mind at all, possibly some of the data gathered from these scans will be beneficial down the road for others.

[Catnap7]

Wow that article was an eye opener. Thanks. I have had 5 during my 2 yr trial and often wondered why so many. Glad that is my lifetime total

[Tortola2019]

Thank you for posting this article. As CLL patients typically have abnormal high numbers of circulating tumor cells, the idea of radiation causing a second or third it in these cells in particular worries me...another hit or two could transform any one of my 1/4 trillion CLL cells into a more aggressive cell... perhaps into a fast-growing diffuse large B cell lymphoma?