Question about needing bone marrow biopsy after treatment

[brian_in_Seattle]

I've just completed 5 chemo rounds of FCR. My hematologist, when I asked him about needing a biopsy to check the effectiveness of treatment, said basically that a) my counts all looked right where they'd hoped they would be, and b) how would having more specific information from a biopsy help? His point in (b) was that knowing a more precise measure of the effectiveness of my treatment would not change the eventual time to next treatment. And when I did need treatment, even then it may not be needed. What do others make of this approach? I had thought that the biopsy was pretty standard after treatment. Thanks!

[Cllcanada Top Poster CURE Hero]

MRD negative, which is one CLL in 10,000 leukocytes ...is an indication of the deepest and longest remission in CLL ... it is done on bone marrow or wait 3 months post treatment and run a flow MRD on the blood.

~chris

[kc1953 in reply to Cllcanada]

1 in 10,000 or < 1 in 10,000 to be considered MRD- ?

[Cllcanada Top Poster CURE Hero in reply to kc1953]

Sure less than 1 CLL cell in 10,000 leukocytes... some tests like PCR can measure down to 1 cell in 100,000 leukocytes, still MRD-

MRD negative is just an arbitrary line in the leukocyte sand...

~chris

[kc1953 in reply to Cllcanada]

In reality it would seem that predictive power of mrd as far as durability of remission is a continuum. < 1 in 10,000 is best, but how much better than exactly 1 in 10,000 (.01% which was my post treatment bob result). Only time and the relative aggressiveness of ones CLL will tell.

[Cllcanada Top Poster CURE Hero in reply to kc1953]

CLL is also constantly changing, and everyone is different. Prognostic indicators group patients, but they say little about a specific patient.

~chris

[brian_in_Seattle]

Ha! I like him too, but you'd have to be in Seattle.

Are you doing OK? How long post treatment?

[Mick491]

Not sure about others but i had one before FCR then one after. Seemed to be usual practice then but it was 2010/11 and things may have changed. Not pleasant though.

[Oleboyredw-uk]

I had a bmb prior to treatment with FCR in 2012. A matter of hours before. Three months after end of treatment I had a second bmb. My consultant justified this, and it made sense to me, by saying you can only establish effectiveness of treatment in terms of clearing 'the bad stuff' out of bone marrow by doing a bmb. A normal blood test only checks peripheral blood.

It varies a lot, but both my bmbs were no problem. As Mick491 says others have different experiences.

Chris gives a better technical explanation.

rob

[bkoffman CLL CURE Hero]

An MRD- response now on a BMB might obviate the need for a 6th round of FCR. It would also be somewhat predictive of the durability of your response. For some of us, BMB are not that bad. Stay strong, Brian

[kc1953 in reply to bkoffman]

I had one just prior and one after. Not fun, but also not horrible. I guess ymmv.

[sandybeaches in reply to bkoffman]

Brian, will the immune function/response of B lymphocytes be normal if a patient has an MRD response after FCR? What about the immunoglobulins - will they return to normal levels or always be lowered? Thanks, Sandy

[bkoffman CLL CURE Hero in reply to sandybeaches]

Immune function may be slightly better when the tumor burden is very low, but immune reconstitution just doesn't happen in CLL, especially after chemo-immunotherapy. They are working on it, but it remains a major unmet need in CLL- improving our lousy immunity even when our cancer is in deep remission.

[brian_in_Seattle in reply to bkoffman]

Thanks, I am trying to!

My doc stopped me at the 5th round because a) my blood tests looked good and b) I was getting hit hard by the treatment, with the cumulative effects getting worse and my blood counts taking 5 weeks to recover between rounds.

[Cammie]

I think it depends on the mind set of the medics!

In my case it is not usual to have a further bmb after treatment and like your doctor they rely upon the blood test results.

I suppose it also depends upon whether you need to know the possibility of the length of remission. But even then it's an estimate because things can change. Trade off is do you worry about not having an estimate of remission time or do you worry if the bmb shows no MRD?

Brian's post above deals with a good question are you stopping treatment after five sessions or are you getting the sixth?

If the latter then you would have to wait at least 3 months to be offered one after treatment is completed.

The chances are still that cll will return until we have a cure so would knowing an estimate of remission time really help?

Getting on with life whilst in remission is the most important in my view and when or if the condition returns we will deal with it then

Geoff

[brian_in_Seattle in reply to Cammie]

I agree with your philosophy. The estimate of remission time for me would not be especially useful or helpful psychologically, but it may be for some I'm sure.

[Fowey2009]

Can only speak from husband's experience. BMB provided peace of mind in showing MRD- Allowed us to get on with our lives without Sword of Damocles hanging over us. In a different psychological place than during watch and wait. (Not being naive - know it may come back but in the meantime getting on with living life to the full)

Beryl

[BellaBee10]

Hi Brian,

Thanks for asking this question.

I had my 6th round of FCR just over a week ago. The plan is to have a CT scan just before Christmas and if that shows remission, then have the bone marrow biopsy to confirm MRD outcome. The Prof said there's no point doing a bone marrow biopsy unless scan is clear.

In the meantime, every reason to be positive.

All the best to you.

Nic from Wiltshire

[brian_in_Seattle in reply to BellaBee10]

Best of luck, Nic!

[Hidden]

I'm in the UK and am finding different areas go about testing differently even in the UK. I like you were stopped after 5 cycles of FCR because my bloods showed remission. I have never been offered a bone marrow biopsy or CT scan. Blood tests and examinations always suggested the disease was mainly in my blood. No lumps and bumps for me!

I have my first appointment on watch and wait in two weeks. This is 3 months after the last FCR and the blood test prior wants FBC, liver, U&E.

Like you I want to be told MRD negative or suggested PFS but I know they won't because I'm sure they will not test and anyway our CLL can change from any pathway.

So, do we live with good news or bad news? Part of me says I want to know. My relatives want to know possibly more than me because I just accept my chronic disease and they want closure.

Watch and wait is a good state to be in as there is no cure, yet. But you just can't help being curious.

I have lots of questions for my appointment in 2 weeks. I'm not demanding a BMB because just more hassle and worry waiting for results . If they suggest one OK.

I always tell people I'm the lucky one because I know I have Cancer and it is being monitored. Watch and wait will do me especially as I now feel so full of life.

[Fowey2009 in reply to Hidden]

I think being told you are in remission (following a BMB) is a completely different mind set to watch and wait. There are even suggestions that some of those with MRD neg may be cured, but they don't have enough evidence yet.

[Hidden in reply to Fowey2009]

My thoughts are that do I need to know that the FCR wasn't as successful as the lucky. If it was successful or not I will still be on watch and wait anyway. Yes to be told MRD negative would be super but what if a different result? A true dilemma for information.

[alice111]

My husband had exactly the same response from his Haematologist following chemo ...we were happy enough with this as it won't inform further treatment atm while he is in complete remission..

[MF79]

I had a follow up bone marrow as part of FLAIR trial in U.K. I have SLL, so nothing to see in blood, scan result was good and bone marrow showed no measureable disease. It gave me peace of mind. However bone marrow being taken was not a pleasant experience. I had to apologise for swearing at the haematologist.

[Penkman]

Hi Brian, I am in a similar position. Had my 5th FCR three weeks ago with my consultant suggesting this would be my last one. He told me I would need a further BMB and another CT scan to see if my lymph nodes and spleen had returned to normal size. I was not aware of having any enlarged nodes and certainly cannot feel any. I believe these follow up tests will determine if negative MRD has been achieved. Not sure if a sixth treatment will be given if it hasn't. See my consultant next week and will report further whenI know a bit more.

[brian_in_Seattle in reply to Penkman]

best of luck to you!

[scarletnoir]

Ha! I guess the answer is - better to have the BMA if the news is good, but better not if it isn't. Of course, we don't know in advance what the result will be...

In my case, the haematologist was old school (now retired) and did BMAs before and after 4 rounds of BR chemo. He was excellent at the procedure, and I'd say I suffered 'mild discomfort' - no more. I gather that other less practised or competent doctors can cause more pain.

In the event, the news was good - an MRD result - and 4 years and counting into remission. So, a great encouragement at the time, after shooting from diagnosis to treatment in 8 months. Would I have wanted to know if the news was bad? I'm not so sure...

[Cllcanada Top Poster CURE Hero]

Actually you can be MRD negartive and have a Complete or Partial remission apparently... nothing is cut and dry in CLL... and MRD negativity is not the standard of care. Clinical trials are one thing the clinic is another.

healthunlocked.com/cllsuppo...

The views on MRD...a few months ago...

bloodjournal.org/content/12...

mdedge.com/hematologynews/a...

cancernetwork.com/hematolog...

[Fran57]

Hi. My husband finished FCR a year ago this month and all results appear good so far but his consultant hasn't requested this test either and I think she believes the same as yours.

We are in the U.K.

Best wishes for continued good health .

Fran 😊

[mehall51]

BMB prior to 6 rounds of FCR, just bloods and CT scan post FCR. All is well. Good luck

Mike

[lankisterguy Volunteer]

This type of discussion always elicits a thorough & deep reply from Dr. Furman. He differentiates the prognostic testing and information from the predictive. Simply expressed is whether the test results will change the choice or timing of treatment- if yes- it's predictive and useful to the patient and doctor. If treatment will NOT change based on the results- then it's prognostic and only beneficial to statisticians in clinical trials, but no benefit to the patient or doctor- beyond emotional or curiosity.

Dr. Furman has treated me 3x with non Chemo agents. The first was a clinical trial with 8 CT scans and 2 BMBs despite only reaching 0.08% MRD. The later 2 treatments were done with no CT Scans or BMBs, only peripheral blood tests and manual external exams.

If I reach 0.00% MRD in blood on Venetoclax when he tests me later this month, I will volunteer for a BMB with a MRD on the marrow. If both show MRD neg, then we can decide whether to stop Venetoclax and go back to Watch & Wait.

So I suggest you ask the doctor if the information is critical to treatment decisions or just "standard practice" with no decisions based on the outcomes. Then the patient can decide whether it's worth the potential discomfort to satisfy someone's curiosity.

Len

[brian_in_Seattle in reply to lankisterguy]

Excellent first paragraph. That really puts things in clear language. Very helpful. Thanks Len! And best of luck!

Brian

[ShariS]

Like many, I had BMB's before & after 6 mos. FCR. I've always wanted to know as much as possible & this was no exception. I was pleased (OK, ecstatic) to find MRD- status & BMB's don't bother me much. Both specialist & generalist were able to speak rather specifically about what that means in terms of the future & I appreciate those discussions greatly.

[lapermone]

Whether one opts to do bmb, or aspiration, (never had them separated, always had both,) may depend on how "typical" your cll is, and was. However, and this is a big consideration, even if our cll was as normal as wonder bread, after chemotherapy, of any sort, you have a different type. You now have leftovers; what one expert recently called them. Different types of cll behave differently, and respond differently. They may also progress differently, but they're not the same ones you had, knowing what they are might help with planning or decisions. Most specialists prefer to wait for a period post treatment since the treatment is still working and it gives a more complete picture of whatever the gain was...as well as any newcomers to the mix, ie, leftovers, or new kids on the block that may have to be dealt with.

I've been around the block on CLL....four different treatments. My disease is not at all typical. I've been to many of the top"experts" and if I've learned a few things I could offer..... it's that CLL is not a stable disease, no matter how indolent. And that protocols don't work in every case. One shouldn't try to copy a trial protocol in an individual case. And that you can't ever have too much information on your disease; learn it, keep it, share it with all your doctors, and keep learning.

In this case, what's the harm in doing the test? If the possible benefit outweighs the "risk" do it. My only real question might be timing.

Be well, beth

[lapermone]

I'm as cynical as the next guy, but as far as doing any test in the context of a trial? As soon as any trial posts an abstract everyone wants to know,,,,how'd it do. That's aside from the FDA, or anyone paying for treatment and your doctor. Without those test results we don't know how the drug performed. If your cll happens to be centred nodally, or is more myloid, how would your doctor even guess if you'd do well on that drug.

Beth

[HAIRBEAR_UK Founder Admin]

Had one last Monday before starting my trial, was told it wasn't necessary but wanted to put a mark in the sand!

[Cammie in reply to HAIRBEAR_UK]

Hope all is going well my friend?

[PaulaS Volunteer in reply to HAIRBEAR_UK]

When do you start the trial, Nick? We'll be thinking of you and wishing you well.

Paula