CT Scan

[12Caine12]

Why do we need CT scans during treatment? Can't they just do a bone marrow biopsy? That will tell you how much cll is in the marrow, which is the bottom line. If there is a high % of cll cells then it's likely you'll have lymph or spleen enlargements. But if the %'s are recovering then it's likely your spleen and nodes will follow suit.

[Hidden]

i don't know. Did you ask doctor why.

[12Caine12 in reply to Hidden]

I just thought of that question. I will ask during my next visit.

[SenateurDupont]

CT scan will show if there is nodes in different part of the body. They can measure them, see a progression. I think that several parts of the body showing node will give a indication in the binet or rai scale.

Also it can show if other suspect masses are present in the body. However, there is a limitation of a number of CT scan a person can get. That being said... I am not a doctor, he's the one who will prescribe this specific exam.

[Catnap7 in reply to SenateurDupont]

Do you know what kind of limitations on CT scans ...I really don’t know and I have been getting quite a few in my trial

[SenateurDupont in reply to Catnap7]

I really don’t know the limitations! However I do know that my hematologist was a bit angry at my doctor who prescribed me a CT scan. She thought it was too soon to have that kind of exam for me after checking my blood tests. She told me it was like if he had taken out a bullet in her gun to treat my CLL. But it’s not a number like 6 or 7. I think it’s your condition that will guide the doctor to prescribe this test.

[Catnap7 in reply to SenateurDupont]

Thanks

[Pinhead1 in reply to Catnap7]

So far, my husband has gotten 2 CT scans during his 15 month trial. He is on month 10.

[CLLerinOz Administrator Volunteer in reply to Pinhead1]

There doesn’t seem to be any common ground: different trials use CT scans in different ways. Some, like your husband’s, require a relatively low number; others can require twice that number. It’d be great if an agreed protocol could be used across all CLL trials. Does anyone know if that’s where things are heading? Perhaps it’s already there but invisible to patients who just see what looks like different approaches. It looks as if it’s determined on a trial by trial basis.

[cllady01 Former Volunteer]

One possibility: not all nodes are palpable, they are too deep in the body-

[schmitthj007]

There are valid reasons for CT scans in the setting of trials and to assess treatment response. CLL cells are located with huge variances in your blood , bone marrow, lymph nodes (spleen as one big lymph node), but also possibly in other organs. In order to assess full remission and responses a CT would be needed and could guide further therapy. A negative bone marrow and blood work in the setting of enlarged lymph nodes and spleen may indicate one is not in complete remission and guide further therapy. Hope this helps.

Heiko

[Dahlia7 in reply to schmitthj007]

Exactly. The bad guys have multiple places to hide including lymph nodes and bone marrow.

[MsLockYourPosts Passed Volunteer]

Are you in treatment, and if so, which treatment are you getting? Are you involved in a trial? The answers to those questions will help others to tell you about their experiences. Necessary tests, including scans and biopsies, would be different if the treatment is something like FCR vs one of the newer non chemo drugs. And, some trials require more testing than one would normally get. The bottom line for some CLL/SLL patients is whether nodes are impacting vital organs, which wouldn't show on a BMB. I hope that this will help you to narrow down your concerns.

[Big_Dee]

Hello 12Caine12

Good question. I think BMB and CTS are waste of time as "it is what it is" and neither is going to treat CLL. I my case I had BMB to confirm CLL bone marrow infiltration and CTS to check for organ CLL status after treatment. I can see it's use as a means of knowing when to stop treatment, particularly if treatment is giving one serious side effects. I am not a doctor, but I would expect my doctor to have any testing done which they felt would help treat me. Blessings.

[jbctx]

My experience only. If you are in a trial you are much more likely to have multiple CT scans and BMB’s so that researchers can gather critical changing data points. In my case every 3 months.

I have read elsewhere that neither of these tests are required for straight forward treatment, I find this a little difficult to believe but would not argue the point. If a FISH or some other test is adequate to “identify prognostic aberrations and to clarify diagnosis” that is fine with me.

That said, I have to agree with cllady01. I had a “massive” spleen, swelling in my neck, under arms, groin and ankles prior to treatment. All of this was not debilitating just present and looking back a little uncomfortable. After three treatments it had all apparently gone. I had a CT scan that confirmed this with the exception of the portacaval node buried somewhere in my chest, oh well!

My treatment continues but this example indicates the precision and results of a CT scan when looking below the surface.

[Davidcara in reply to jbctx]

Just wondering, what is considered massive spleen? Mine is 17cm

[Newdawn Administrator in reply to Davidcara]

A normal adult spleen is approx 11cm depending on age, weight and height. Over that is enlarged. Massive is usually over 20cm I believe.

Newdawn

[Davidcara in reply to Newdawn]

Thanks for the reply jbctx and Newdawn

[jbctx in reply to Davidcara]

Not sure at what point I read "massive" but I did find a notation from November 2017 that indicated 13.4 cm x 7 cm x 24 cm. This would agree with Newdawn's definition. That said, I recently found that my spleen is still a couple of cm's greater than normal but it seems the spleen is unlikely to return to normal due to scar tissue, regardless of the positive effect of treatment.

[antonb]

A CT scan shows with detail the internal Lymph nodes that can affect your health ( they can interfere with organs and even arteries ) . Once you are treated, they will show the evolution and efficacy of the treatment..

You will need one so they can decide treatment and one after several months to see how you respond to the drugs.

After that CT scans will be rarely asked ..... you will have routine blood , maybe a flow cytometry to show how much of your cells are still defective...

[1935husband]

I have only received one CT scan and no BMB.

They were able to get all the info needed from blood tests.

Have been on IB for 13 months and numbers getting better at every test.

Next one due in April.