Bone marrow

[tootsie2]

My Bone marrow biopsy showed that I have 80% cancer in the marrow. Is this rather high for people with CLL? Do all CLL patients have a bone marrow biopsy

[lexie]

I have 70% in the marrow and my CLL specialist isn't concerned enough to treat based on that alone. That BMB was 4 years ago so I suppose the percentage has since increased.

[81ue]

BMB outside of a clinical trial is only when they need to see what is going on inside like for diagnosis. I asked when I'd get one again and was told they have no reason to look unless there is another adverse event (like drastic change in measured blood numbers and medication failure). When you are on a clinical trial they are more likely to include BMB as a part of getting the research results

[PlanetaryKim]

Mine was 95-99% at the time I started treatment. But I wouldn't recommend waiting that long. Many CLL people don't have bmb before starting treatment.

[TimHB]

I was 80% at start of treatment and less than 5% after 6 months of ibrutinib with obinutuzumab.

[PlanetaryKim in reply to TimHB]

that was great rapid progress on marrow clearance.

[AussieNeil Administrator]

Bone marrow biopsies (BMB) nowadays only tend to be done as a condition of trial involvement or (particularly outside of USA), by a CLL specialists when there is something out of the ordinary happening with blood counts even for someone with CLL. Being the factory where all the different blood cell types are made, a BMB is the best way to work out what's going on. A CLL specialist sees so many people with CLL, they can generally infer what's going on by observing changes in your blood counts.

It's not unusual to get infiltration percentages into the 90's prior to starting treatment, but as PlanetaryKim shared, you do need a bit of extra capacity to allow for bone marrow production suppression at the start of treatment, in order to hopefully avoid the need for transfusions to support you until the bone marrow is sufficiently cleared.

Neil

[GMa27]

I had 3 BMB. I prefer to have them. It's a bone marrow disease so I agree with my experts to have them. I had my first to confirm dx 13 years ago. Then I had one last year when treatment was mentioned. Then I had it after 3 cycles of FCR to see if I reached remission. Blood work was promising but Dr. Pinilla from Moffitt Center and Dr. Byrd at the James said it would be best to have BMB to confirm remission. Never felt anything for all 3 and my insurance covered them. This is disease is very frustrating. Not all experts agree on testing and treatment. 💕

[Graham2222]

I was at 92 per cent before treatment - or ‘stuffed’ with cancer cells as my consultant put it. Down to minimal now.

I’ve had five BMBs, all on an ibrutinib trial. Can’t say I’d queue up for them, but they’re not as bad as I imagined.

[Mick491]

I was very ill prior to going on ibrutinib so had a BMB which showed 50%. I recently had a BMB after taking ill again because of conflicting drugs and that shows after 8 months had reduced to 30%. So for me despite things going wrong the ibrutinib is still attacking the CLL in the marrow.

[Ellieoak]

Tootsie. Yes it happens to all patients. But depending what drug you are on depends on how much your bone marrow is affected.

[Meic13]

I had 80%when they began my treatment plan.

[haposwald]

I have a question about the BMB! Is it a good idea for a BMB when you might be or close to remission to see if the CLL is still detectable in the bone marrow? Thanks in advance for any and all responses

[tootsie2]

Thanks everyone, when I heard I had 80% I truly thought I would be dead very shortly.

[KatieBlue in reply to tootsie2]

😞

My labs generally weren’t bad. In fact they liked to point out how much higher others’ WBCs and lymphocytes were. But they were going up and my platelets were going down so they thought a BMB was warranted.

It was 90%. This was June last year. I started ibrutinib last September. Will be the start of a second year 9/19.

My WBCs and lymphocytes are in or close to normal ranges now. Though watching my hemoglobin and some low protein numbers. I expect another BMB at some future point, but could be a long ways off.

[noeagaman]

I had 95% bone marrow infiltration prior to FCR and then just about zero after FCR.

[Mldeterm]

My husband was 70% when he started treatment but he presents heaviest in his nodes. Specialists only use BMBs sparingly but you will hear of them a lot with clinical trials. That's when my husband had his.