I am under chemo immunotherapy of Bendsmustin and Rituximab. Finished 4 cycles and next one due on 6th March.
My doctor wants me to have whole body CT and pet scan to see whether lymph nodes shrank and start the 5th Cycle Infusion.
My doubt is whether the dye injected in my body while CT and pet scan have any impact on the chemo drugs and any gap is desirable after CT and pet scan for flush off the dye from the body and start Infusion of Bendsmustin.
I am aged 73 and dx in 2013. I am Ighv mutated and no bad markersike Cd 38 and Zap 70. No chromosome deletions like 17p 13q, 6q etc. But I am Trisimy 12.
No major events during the 4cyckes of B R chemo immunotherapy so far.
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venk_46
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In an Ibrutinib clinical trial, my wife had contrast CT scans every 3 weeks (way too much). At month 14 her trial oncologist told her to stop taking Ibrutinib immediately and see him. Shortly thereafter she was hospitalized for 9 days for multiple problems partially attributed to a reaction/alergy to the CT iodine dye. The main problem was her kidneys - high creatinine, calcium, and GFR. She almost died. Please read more about CT/PET scans at mskcc.org/cancer-care/patie...
Good to know that you had completed 4 Cycles of BR. Hope you do not have any side effects ? I had 2 cycles having terrible itchy skin over chest shoulders scalp and neck. Fortunately my blood parameters are normal. Now I am worried to either to continue my 3rd cycle ? Thanks
I can't give direct advice as I don't know how bad you feel... I had 4 rounds of BR in 2012, and also had bad rashes on the chest and legs - especially back of knees. The doc asked if I wanted to continue after the first dose... I said yes - it was just about bearable - and given that I have been in remission ever since, it was the right decision - for me.
The rashes gradually went away - it took at least a year for them to fade, I think - so I took a lot of Piriton and used creams. It still returns on occasion, especially in cold weather, on the backs of the knees mainly.
Ask yourself and the doc:
1. Is the BR treatment working for me, as far as the CLL goes?
2. If it is... how are the bloods now? Do I need to have more doses to reach MRD -ve, or am I 'there' already?
3. If I do 'need' more doses, will they make the rashes worse, and can I tolerate that?
All the very best of luck for a successful outcome, either with BR or an alternative.
I would challenge your doctor to justify the CT Scan. Will they use those results to decide whether to stop treatment? If yes, why are they proposing giving you the 5th treatment before the results of the CT Scan are known? You may want to have this entire dialog with the doctor well before agreeing to your treatment or scan.
Your postings 3 & 4 months ago indicate that your treatment was started due to dropping Hgb and ALC at 100k, so why not use blood tests to determine whether more cycles are needed. You also mentioned: enlarged lymph nodes every where in my body ,which are not bulky and spleen and lever enlarged .
Too many CT Scans expose us to unnecessary radiation risks, and IMO- PET scans are worse. PET scans rarely used by the CLL experts unless they are trying to locate a particular node that might be suspect for a Richter's transformation, or is this connected to your suspicion of having transformed to PLL?
Where are you? Is this treatment and testing for your real benefit or to collect data for a trial?
In the US, trials have already concluded that Ibrutinib is superior to the B in BR. This is even more so for older CLL patients.
In the UK, I think there remains a kind of financial triage that intentionally give sub-par treatments that can delay the more effective and more expensive targeted drugs for a few years. BR is usually effective at knocking back CLL for 5 years or so, but with more serious side effects that can be long term.
Thank you for your advice and analytical approach to my problem.
I am IGHV mutated with no bad markers in flowcytometry and no deletion of cromozomes in Fish test, my doctor suggested B R chemo. Completed 4 cycles with out any issues.
Ibrutinib is very expensive now and it is to be taken life long, I agreed for BR chemo.
My blood work is good with TLC as 8.9 with absolute neutrophils at 7.57(slightly high) and abs. Lymphocytes as 0.36(low), Hb at 13.
Whether flowcytometry is desirable at this point in place of CT PET scan to know any bad CLL cells are present?
There is a high resolution version of the FLOW cytometry test that is used to get to MRD neg or the newer designation of U-MRD 4, those are often used to decide when to stop chemo treatments.
Hi ven_46 — I’ve completed 4 cycles of BR, my 5th round will be March 5th & 6. So far there is no talk of getting another ct, my last being a month before treatment started. I get my blood checked the day before each round & dr appt following treatment. Blood a little low for wbc & platelets which is to be expected. My spleen seems to not be palpable & lymph nodes are no longer noticeable everywhere I can see & feel.
At what point of time, doctor decides to stop further cycles of chemo.
I also get my blood work on every cycle, before start and after. At the end of 4 cycles, lymph nodes in neck, throat, under arms, groin etc had shrunk and not felt now to my hand. My lever and spleen are not palpable now.
Hb is 13,Tlc is 8.9,platelets 135.
My doctor is happy with the figures.
Abs. neutrophils at 7.57(85%) and abs. . lymphocytes at 0.36(4%) which is very low is worry to me though my doctor did not comment.
He plans 5th cycle on, 6th March.
I am mutated and no bad markers and no chromosome deletions.
Is it not good to complete all 6 cycles of B R chemo to expect better remission, as long as no adverse reaction and well tolerated?
Your doctor stopped after 4 cycles and what made him to stop further chemo?
Other than Complete blood count with peripheral smear review, any further tests were done in your case.
I had 4 rounds of BR in the UK in 2012, but no CT scans at all - the haematologist judged progress purely on the blood counts. I got a CR and am still in remission... don't think I'd fancy a lot of CT scans unless they are well justified.
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ASH 2018: Dr. Chadi Nabhan on the Cost of Ibrutinib vs. Chemo vs Chemoimmunotherapy in CLL and on way too much chemo being used.
CT SCAN 
CT scan results
Richter syndrome - No carcinogenic nodes detected in Pet Scan
