CT scan after 9 weeks of Obi +Ventoclax. Is this normal practice in the UK?

[Fergusaims]

I started Obinutuzamab on 29th June & have introduced Ventoclax last week to the 400 mg ramp up max. aside from the normal day1 problems with Obi & have had very few problems. Bloods are in normal range, kidney function good, specialist happy..

The specialist now wants to add a CT scan & I am wondering what good this will do at this stage, given there are no visual nodes any more. Given that there is 10 months to go & I want to avoid unnecessary radiation, has anybody had a CT at this stage? Is this normal?

[kitchengardener2]

That sounds marvellous. I was started on Acalabrutinib, Aciclovir, Allopurinol and Trimoxazole ten days ago. I have been told that a CT scan will be arranged very soon to provide markers for the future. I had a CT scan during diagnosis in 2018 and another earlier this year. My consultant is happy with my liver,kidneys and spleen. My neck nodes have all but disappeared, not since the meds but since my two Covid19 jabs, both Pfizer.

[Fergusaims in reply to kitchengardener2]

The Obi wiped out my WBC from 222 to 3.2 in a week & my visible nodes under the arms, groin & neckline went away as well . I had a baseline scan about 3 weeks before treatment and I can only assume (I am talking to the doc tomorrow) that they want to see progress. But if this is a "nice to know" & treatment will still continue as normal anyway, then the CT could be seen as unnecessary. Interesting about the COVID jab and your neck nodes, as the second jab sent my under arm nodes up to the size of a golf ball. Good luck with your treatment.

[kitchengardener2 in reply to Fergusaims]

Thank you, good luck to you too. Be interesting to swap notes if you don't mind.

[Fergusaims in reply to kitchengardener2]

That's fine.

[lankisterguy Volunteer]

Hi Fergusaims,-

I agree with you, it sounds like the doctor is just being curious and gathering data with no diagnostic purpose. You may want to ask what decisions about your health and treatment will be made as a resut of the CT scan. If the doctor does not have a good response, about how it will benefit you (instead of him) I would refuse the scan, or suggest an MRI instead. Either way you will avoid the ionizing radiation.

-

I'm surpised at this proposed "extra" CT scan since I thought the NHS was very cost conscious and allocated testing like this very relutctantly. You may want to suggest that the doctor reallocate this valuable resource to another patient that needs it much more than you do.

-

Len

[Fergusaims in reply to lankisterguy]

Thanks Len. Yes, that's the way I've been thinking now, since the appointment was proposed. I'll let you know the outcome of the conversation with him.

[Fergusaims in reply to Fergusaims]

Hi Len,

The consultant is happy, without any argument to cancel this CT scan & push it back to the end of treatment if needed, as my bloods are very good. Pays to ask.

[kathymac5252 in reply to lankisterguy]

Our doctor is waiting a full year to do my husband's CT scan and bone marrow biopsy

[lankisterguy Volunteer]

I was on a clinical trial where the schedule required 4 CT scans per year, and my doctor said he thought it was excessive - but he could not openly challenge the trial protocol. He told me confidentally that, as the patient, I could refuse some of them. Especially if there was no medical need or treatment decisions at issue. Len

[Fergusaims in reply to lankisterguy]

In my case it is tax payers money potentially being wasted and the excess radiation issues. 4 CT scans a year does seem very high.

[cllady01 Former Volunteer in reply to Fergusaims]

Is there any possibility you have had deeper abdominal nodes that the Dr. wants to check on.

[Fergusaims in reply to cllady01]

I talked to the specialist yesterday, with a great outcome. My visible nodes have gone, my haemoglobin has gone to 16, platelets 155, WBC & neutrophils 2.5, looking very steady. He agreed that the CT scan is not necessary and given my results would wait until end of treatment (10 months time), unless bloods change. It was a "nice to know" request & I'm glad to have had the very adult conversation with him, with no resistance on his part. As many people have said before on here, it always pays to know about your condition, read as much as possible & politely query anything you don't understand & always ask for test results etc, so you, and/or your family can be informed about your condition. Doctors are only human.

[stevesmith1964]

HiI had a CT scan after cycle 4 of Obinatuzamab, then PET scan and BMB 4 weeks after cycle 6. All reassuring with no additional risk

[Tdcpride]

So I am a CT tech and I would 100% have the CT done if it was a modern CT less than 5 years old. The radiation dose in modern CT are so low that radiation exposure wouldn’t be an issue for me. How many CT have you had this year? What body part?

[Fergusaims in reply to Tdcpride]

This would have been the second since May & is a Thorax with contrast dye. While I understand that modern machines are much lower in dose, an unnecessary scan is still an unnecessary scan & more radiation. Nobody is plugging the age of the machine at this hospital & as NHS literature is saying scan radiation is between a few months and a few years background radiation for each scan, with a 1 in 2000 chance of developing secondary cancer in later years, I would like to have only necessary scans.

[CLLBGone]

re: CT scans

I am in an O&V trial, currently in the followup stage.

I had a CT at the beginning that provided a baseline, and then another when I cmpltd the medications. I rcvd another CT about six months into the follow up.

[Fergusaims in reply to CLLBGone]

Thanks CLLBGone. When you say emptied the meds, do you mean after 1 year of Venetoclax combo & the follow up being 6 months after that year? .

[CLLBGone in reply to Fergusaims]

I completed O April 2020, and V Dec 2020. Follow up labs started after Dec 2020 with a CT in June. I'm currently on six month follow up schedule. I hvnt asked how many more CTs will occur.

[Fergusaims in reply to CLLBGone]

Thanks. That sounds like a well spaced out plan, not what was originally (now not to happen) proposed for me. It makes sense to me. I like to think that it is like some cooks, who can't resist looking to see whether something has risen in the oven & opening the door let's the heat out and the dish collapses. Maybe i'm feeling poetic tonight. I also agree with you that O&V is a great, relatively pain free combo & good luck with your remission.

[CLLBGone]

Thanks, and best of luck to you too in your treatment journey traveling the cancer hiways & byways . . . . . and, as the long haul folks like to say: shiny side up, greasey side down