bmb showing partial remission after 6mnths fcr treatment

[kel555]

hi all ive had my bone marrow results which shows. pr. partial remission after 6 cycles of fcr finished in Jan 2021...unmutated,,,bloods show ..hb..112...plts.55...neuts..0.7 ..wbc..2.0...my question his,,is this a bad thing the p.r.and as anyone else who is un mutated had the same ,,,thank you ..kell

[devonrr]

Be so careful if your neuts are below 1. What you do and what you eat. You are susceptible to any infection.

First 6 months and really a year; you are not back to fighting fit/normal.

Sorry can’t help you with the partial remission query.🙁

[kel555 in reply to devonrr]

thankyou denvonrr for your reply i will keep safe with infections,,,kell

[kel555]

hi his there anyone there

[AussieNeil Administrator in reply to kel555]

Hi Kell,

When we have treatment, it's possible to have a range of responses through from disease progression/no response, to partial response/remission, to complete response with an incomplete haematological (i. e. blood count) recovery, to a complete response with full haematological recovery. With the complete responses, the depth of the response can be measured by looking at how few CLL cells remain. The depth of response is a surrogate/predictive measure for how long our remission is likely to last.

In most countries, FCR remains the 'gold standard' for treatment, despite the medical appreciation that those who are IGHV unmutated are statistically unlikely to respond as well as someone who is IGHV mutated. In the UK and thankfully a growing list of countries, treatments are gradually transitioning to 'non-chemo' treatments, but it's often a rite of passage to first have an older 'chemo' treatment such as FCR, before access is provided to the more expensive 'non-chemo' treatments.

Based on your blood test results, you appear to have responded very well to FCR, but I presume your spleen/lymph nodes may not have returned to the normal range to rate a partial remission. As devonrr noted, you are currently neutropenic, so it's important that you continue to be careful to avoid infections until your neutrophils recover.

Statistically, your remission may not last many years, but we really can't know until you live it. (If you had a FISH test prior to starting treatment, it may be possible to find studies showing how long remissions lasted for others with your particular FISH results, but these predict the likely outcome for a group, not an individual). What's important is that treatment options in the UK are continually improving and your next treatment is statistically likely to give you a longer remission than what you will likely get from your FCR treatment.

Wishing you a complete recovery of your blood counts and a long remission.

Neil

[cajunjeff]

I have not had fcr but can make some layperson comments about your labs.

Cll doctors can have differing views of what constitutes a compete remission vs a partial remission. My guess is that you are considered in partial remission because your platelets and neutrophils have not sufficiently recovered.

What can be most important with labs is trends as opposed to a shapshot in time. In looking at your labs a month ago, you have shown gradual improvement with hemoglobin, platelets and neutrophils. That would lead me to believe that you are seeing a gradual improvement in your labs after being knocked down hard by fcr and that your marrow remains functional to some degree.

So I think its a good thing. A complete remission is better than a partial remission, but a partial remission is still good and could yet turn into a full remission. I would think the recovery of your labs, however slight, over the past month is a great sign. Should the upward trend in your platelets, hemoglobin and neutrpohils continue with your next labs, and there is every reason to hope they will do so, that would be even better news.

This article discusses the criteria used to determime complete and partial remsissions with cll:

ashpublications.org/blood/a...

[bennevisplace]

I also did 6 cycles of FCR and got close to undetectable MRD. Between 1/100 and 1/10,000 CLL cells, the book defines as "intermediate MRD, partial response". Whether IGHV mutated or not (mine is) it's better to achieve undetectable MRD, which correlates with longer time to progression.

Chapter and verse here

journals.lww.com/hemasphere....

[Jm954 Administrator]

Hi Kell,

it's good to see that your results are not any lower than a month ago and your neutrophils and platelets have improved a little. It's still early days and I think your bone marrow will recover more fully as time goes on.

When you say you've been told you've had a partial remission, I'm not sure if that means that there is still CLL in your bone marrow or if it's clear of CLL but you've got a delayed recovery of normal haemopoetic components which is why your blood results are low.

I would ask that question and also if they did any cytogenetics on your marrow and was there any signs of myelodysplasia. All those questions will give you an idea of your future options.

Jackie

[kel555 in reply to Jm954]

thank you Jackie ,iam just a bit worried about the second jab because i think the first jab put my blood numbers way down ,,,what do you think...k

[Jm954 Administrator in reply to kel555]

You need to talk to your doctor but I wouldn't have thought it would do that. It's more likely that it would cause a rise in reactive lymphs and second jabs are statistically less likely to do that. For myself, I would have it, covid is more of a risk to you.

Let us know what your doctor says.

Jackie

[Cheshire2016]

My husband completed FCR Oct 2020. His 3 month check ( on the flair trial) was a few days after his first Pfizer vaccination.

The results from bone marrow and bloods were MRD, but as he had a node that was slightly bigger than expected, they assigned a partial result. (Flair trial criteria are strict)

His bloods were re-checked last week and were found to show no detectable disease.

We wonder if the node was due to vaccination?

So I’d ask for the reason that you were assigned PR, was it bone marrow, blood or nodes?

Like you he’s unmutated, so we share your concerns about FCR, but we were told it’s the TP53 which has a bigger effect on outcome.

He’s also struggling to get neutrophils back to normal, and is currently suffering from shingles, ( extremely painful) so I’d certainly ask to be kept on antivirals until your recover.

[kel555 in reply to Cheshire2016]

thank you Cheshire , he said my ct scan looked good but he did mention small detectable cll cells in bone marrow he didn't mention the bloods iam on the flair trail at Christie got a appointment on 7 may to see consultant so i will be asking ,, also i have my second jab oxford on Monday not sure about that because i think the first jab put my blood numbers down esp the platelets,,,,,,kell