8CT Scan Protocol

[Amberesque]

I have SLL, been on BTKs for 2.5 years. I still have a lot of disease symptoms + drug side effects.

It's been 2 years since my last CT scan and hematologist wants to do one not because nodes are palpably swollen but because of my anxiety about other symptoms. This doesn't seem reason to expose myself to radiation.

What's the protocol for use of CTs in SLL while on BTKs? How is a PET different and when is it indicated? (Note: PET scans are not approved for use in CLL/SLL where I live, BC Canada).

[Skyshark]

CT scan is x-ray. It will usually use an iodine contrast agent injected into the blood via a cannula during the scan.

PET scan a radioactive sugar is injected into the blood via a cannula. Then you wait about 15-20 minutes for it to get around the body before the scan. You become an x-ray emitter. I was told to keep at least 2m away from kids and pregnant women for 12 hours. The PET scan was to check for transformation to Richter Syndrome. RS lymph nodes take up more of the radioactive sugar with the blood and have a high "SUV", while normal CLL the nodes have low "SUV". My result was low "SUV".

BTKi make you more likely to bleed and bruise. They should take extra care and possibly observe you after removing the cannula.

CT scans are a frequent part of clinical trials of BTKi drugs. Article on BTKi bleeding, says platelet function is not impaired.

ncbi.nlm.nih.gov/pmc/articl...

I'm on V+O. I got about 100m out of the X-ray dept after my last CT scan. When I took my parking ticket out of my pocket to get it stamped for free parking at he cancer unit I saw blood on it. I'd sprung a leak and had to go back to the x-ray dept to get it staunched and redressed. Left a trail of blood spots down the main corridor of the hospital. They had used a vein at inside of elbow, all other cannula have been on lower arm or near wrist and I've had no problems with those.

[CoachVera55]

A CT Scan would be a good way to see if anything is wrong with you physically if you still have disease symptoms & side effects. And 2yrs seems like a good enough period in between. I am thinking that at least your anxiety will be lowered by knowing. I had a rough start with full dose Zanubrutinib & had 3 CT Scans in 3 months because of Chest Pain but there was no other options offered. I know better now to trust my own instincts but it was a completely brand new experience. I was in W&W for 13yrs 8mos & I knew what was going on with me then & I still know better than any doctor, but I’ve been in this body for 57yrs. I find an Ultrasound better than a PET Scan so I don’t think that you are missing anything there. Best of luck & try to get them answers best way possible…

[scryer99]

I've had 5 CTs in the past year and #6 is next week, due to clinical trial and some complications. I am still walking around and not glowing in the dark.

A more serious quantitative discussion of your risks is here: webmd.com/cancer/can-ct-sca...

The gist: a full-strength chest CT applies about as much radiation as you would get in 2+ years of walking around normally from sunlight. Your odds of it causing new cancer are about 1 in 2000.

For most situations in CLL patients, it seems to me that the diagnostic value of the CT scan is higher than the risk. Don't just do them willy-nilly, but usually if the doctor wants one, I'd say it's better to take that advice than not.

[skipro in reply to scryer99]

As an orthopedic surgeon we are trained to limit the number of follow up CT scans of fractures due to risk of other cancers

In my profession I was expo a lot of radiation and my oncologist believes that's why I developed CLL at such a young age.

In a few studies, orthopedic surgeons who have to work around a lot of Xray were 5 times more to get cancers like CLL than other workers and docs at the same hospitals.

Further, ultra sounds are very good at finding things being looked at by CT.

Good luck and God bless

Skipro

[skipro]

Have you considered changing gears to venetoclax plus obinituzumab aka V + O which could work when BTKs aren't working as well as we'd like?

Skipy

[Amberesque in reply to skipro]

Hi Skipy. Thanks for your responses to my posts. My doctor and I have not talked about switching to V&O at this point, no. I think the only context where that came up was as next line treatment when Calquence is no longer working for me.

I'm in a situation where the BTK shrunk my nodes and spleen but the pain and discomfort I have in those areas never left. So the doc is always telling me I'm fine because my nodes aren't palpable, meanwhile I have terrible pain in those areas and am often hoarse from the neck discomfort and feel like I'm choking. The neck pain also refers up to my skull and causes headaches. I guess it's nerve pain but I don't understand WHY I still have it if everything's fine. That's also what causes me to disbelieve my doctor's favourable opinion of my survivability, if that makes sense.

And now there's the autoimmune-type reactions of hives and joint pain that my doctor thinks are unrelated to SLL which leaves me very frustrated. At this point I am so fatigued of trying to communicate with medication professionals that I don't know where to turn, and I'm still avoiding the CT my doctor requisitioned because I'm not convinced it's warranted.