CT scan while on Venetoclax + Rituximab - CLL Support

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CT scan while on Venetoclax + Rituximab

RamsesII profile image
7 Replies

Hello to all fellow members! I wonder whether any of you being on Venetoclax + Rituximab treatment has had a CT scan to monitor changes in lymph nodes and if so at what point in treatment time has this been carried out. I am currently in week 4 (200mg daily) of ramp-up. All responses are more than welcome and highly appreciated. Many thanks!

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RamsesII profile image
RamsesII
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7 Replies
cajunjeff profile image
cajunjeff

Outside of a clinical trial, I doubt most doctors would do CT scans as part of a regular venetoclax treatment protocol. It might be a bit more common to see a CT scan done before starting treatment to get a baseline or one at the end of treatment.

If a person has abnormal labs and palpable nodes at the start of therapy and the nodes no longer become palpable and the labs turn normal, its reasonable to assume internal nodes that cant be palpated have reduced as well. If one's spleen is palpable below the ribs before treatment and shrinks back behind the ribs after treatment started, that would be another indication the same thing is happening throughout the lymph nodes.

I suppose if one were mrd negative and considering suspending therapy, a CT scan might provide useful info. There is expense associated with a ct scan and a slight radiation risk. So absent a particular reason, I doubt CT scans would be a regular part of venetoclax monitoring.

I am soon to start venetoclax and will have a bone marrow biopsy and CT scan to get a baseline. That is the protocol at MD Anderson where doctors are more likely to run such tests. I doubt that is the norm everywhere. I do not expect to have any CT scans during treatment, but if I get MRD negative and am considering stopping therapy. I expect to probably get another BMB and possible another CT scan. If I get MRD negative in my blood and marrow, I think it unlikely any nodes would show on a scan anyway.

Fran57 profile image
Fran57

Hello.My husband is currently today in hospital for his second ramp up to 100 mg Venetoclax.

No talk of a CT scan just yet, but maybe they will next week…

I hope you are doing okay.

Stay safe,

Fran 😷

Newdawn profile image
NewdawnAdministrator in reply to Fran57

Hi Fran, I had a CT scan about a fortnight before starting Venetoclax to assess progress on my extensive lymphadenopathy. I’d been on Ibrutinib for nearly 2 months at this point.

Newdawn

Fran57 profile image
Fran57 in reply to Newdawn

Yes, Paul did have scans before starting Venetoclax. They were for his prostate cancer radiotherapy and his consultant was happy with those, because they showed very little in the way of lymphadenopathy. I know his spleen is a bit enlarged; perhaps she will want one done later, or maybe not.

I am happy to report that this week’s hospital visit seems to be going better than last week … he’s taken more books and pants! 😂

He went in last night and had blood tests then, and this morning and had his 100 mg Venetoclax this afternoon. No need for rasburicase so far, because the doctor was happy with the blood tests.

Hopefully, if his bloods are okay tomorrow morning, he may come home this time tomorrow.🤞🏻

And he feels much better today, after his hot night and headache Monday night , following the third covid vaccine. 😊

Thanks again. Stay safe,

Fran 😷

lankisterguy profile image
lankisterguyVolunteer

Hi RamsesII, -

We have had several past discussions about CT Scans.

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Having a "baseline" scan before starting treatment is common among some doctors, perhaps those with experience in SLL and other NHLs where lymph node size is the primary indicator of progession and treatment success.

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But among CLL expert doctors, there is less enthusiasm for scans, as long as there are no odd symptoms and the blood test results are as expected. And if the patient achieves MRD-U with no palpable nodes or spleen, the CLL experts might avoid a post treatment scan. This is intended to reduce exposure to ionizing radiation and the resulting small increases in 2nd cancer risks.

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You may want to read these discussions and replies:

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healthunlocked.com/cllsuppo...

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healthunlocked.com/cllsuppo...

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healthunlocked.com/cllsuppo...

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Len

Shepherd777 profile image
Shepherd777

Like Newdawn after 3 months on Imbruvica, my wife had the CT scan to see how numerous nodes were through out her body and how big they were before starting Venetoclax. She only had about 5 nodes and none were over 2.7 cm so they were not concerned about a sudden large cancer death from Venetoclax. Plus her WBC was down from about 98,000 to about 25000 after imbruvica so once again not much left for a big cancer death dump.

ttomo profile image
ttomo

I finished a 14-month clinical trial in August of 2020. Unfortunately. part of the trial protocol requires total body CT scans once a year for six years. I am not real excited about all of that extra radiation but those ate the requirements.

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