I've been in "watch and wait" for 4 years, and still remain asymptomatic, although my hemoglobin and platelets have gotten quite low. My hematologist is recommending a bone biopsy to "see how my CLL is advancing". I know that a biopsy is necessary when a decision is made to start treatment, but nothing I've read indicates that it's common during watch and wait. And since I've heard it's quite painful, I'm resistant.
Have others been advised to have a biopsy during watch and wait?
Hi Jim,
Section 1.3.5. Marrow examination in the iwCLL guidelines has this to say; "a marrow biopsy may provide important information, in particular
before starting therapies with cytotoxic agents." You haven't shared where you live, how low your haemoglobin and platelets are or how knowledgeable your specialist is about CLL, but it seems that they want to determine what is causing your low counts, given the absence of other CLL symptoms.
Bone marrow biopsies are not likely to be painful when done by someone who does them regularly.
Neil
The only pain I experienced was the sting of the local anaesthetic.
And on the first one they managed to anaesthetise my hip joint so I had to wait 3 hours for it wear off before I could stand and walk out.
Bmb if done by an experienced medical professional are tolerable. I have had three and none of them were particularly painful but I totally get the fear because I felt the same before I had my first one. If it really scares you, ask for sedation or a prescription for Ativan to calm your nerves. That being said my specialist only does bmb if it is really necessary because a blood test can’t tell them what is going on. In my case,I had high kappa light chains which indicated MM. I would ask why the bmb is needed and what they need from it that can’t be done by a blood test. Also, ask if the results would change your treatment plan.
My husband has had several, including when he was first diagnosed.
I have always been with him when he had a BMB. I would repeatedly remind the doctors beforehand that my husband was very sensitive to pain so make sure he was given whatever was needed so he didn’t feel any pain. It seemed to work.
My experience is… don’t leave treatment so long that you get sick (I did)… there is an acceleration of levels and symptoms just prior to treatment. The bone biopsy did not hurt at all and is a necessary part of the work-up to decide on whether to treat or not. For me… I I would have started treatment (Ibrutinib) earlier… significantly better quality of life.
AussieNeil has summed it up pretty well. Basically I suspect your Dr wants to see how much infiltration of the bone marrow by CLL. This may indicate CLL treatment to solve your anemia and thrombocytopenia. Tests will probably also be performed to get a genetic profile of your disease to better understand what and how to treat. I find the BMB unpleasant but quite bearable.
I had a bone marrow biopsy and CT scan last year, after 3 years of W and W. These resulted in the initial diagnosis of CLL changing to low grade Non-Hodgkins Lymphoma, and a new but linked condition of Bronchiectasis being picked up. I’m still w and w but now have medication to protect me from getting chest infections and also when I do need treatment they have a clearer understanding of what I will need. Yes it was a little painful, but the local anaesthetic helped, and I was fine soon after.
I was given a bone biopsy together with scans to diagnose my blood cancer/CLL. I was then put on watch and wait. The biopsies felt a bit uncomfortable during and afterwards but were not painful. I wouldn't hesitate to have them again.
I had only a 13 percent lymphnode involvement but when they did a bmb it showed 90% CLL infiltration and I had low hemoglobin as well. So they started treatment.
I’ve never had a problem with a BMB, but my doctor is amazing. A little pressure but never painful. Sally
Jim,
I'm very strongly SLL, on my last 2 relapses I had no swollen lymph nodes even on CT scans but a BMB showed 90+% infiltration which explained my plummeting haemoglobin, neutrophils and platelets. In both cases I needed to start treatment immediately. I've now had 6 or 7 BMBs and have never had a problem.
Jacques
Hi Jim, we're all different! After my first BMB I insisted on some kind of light med for pain. It was really painful and uncomfortable. I was also pretty nervous which does not help, but that's what meds are for! I'm not shy anymore asking for something to make it all tolerable.The biopsy will give you an idea of where you are at with CLL, as many have said here.
Best of luck,
Lorna
Hello jimwilmes
The idea of bone marrow biopsies sounds painful, it is not. I had my first BMB when being diagnosed and in W&W. My GP did my BMB and he was good and had done over 100 BMBs. Just had local anesthesia, took maybe 5 minutes after prep and etc.
If you are anesthetized properly, it shouldn't hurt. I've had a number of them, only 2 had any difficulty. One was done by brand new medical residents who took me over an hour late into the appointment where the premed wore off. The other, my sedation hadn't yet kicked in and my marrow kept crumbling so she had to repeat the process until she got a good sample. So instead of "virtually painless" there was *some* pain, but not horrible. My broken toe hurt much worse.
A BMB is a big nothing. I was waiting for the pain & none. It was over in a minute. Going to the dentist is 10 time worse. Don't lose a minute sleep over it.
it is normal to have a BMB, but not always necessary. The procedure does allow your oncologist to clearly understand your condition instead of guessing. I’ve had many biopsies. I highly encourage you to get the procedure where they put you under and use X-ray and power drill. You won’t feel a thing. I had 4 manual biopsies and three while put under. I won’t do it the manual way again. Good luck
When platelet drop it can be due to CLL and some suggest Treatment if they stay below 100,000
Low platelets in CLL can also be an autoimmune phenomenon and would be treated with steroids rather than CLL meds
If 2 or more of your cell lines are low (rbc and plt.) it can be a sign of MDS, a rare condition that comes with CLL
A bone marrow biopsy will answer all of these questions
Other causes of anemia could be internal bleeding than can be tested with stool sample, Iron or certain B vit deficiencies that can be tested with a blood draw.
Lastly
It could all be random as my platelets took huge dives several times and recovered over time without intervention. In fact I went in for the BM biopsy and my numbers had recovered and the biopsy cancelled.
Good luck and God bless
skipro
jimwilmes -
Some countries may have their own guidelines that vary somewhat from the iwCLL Guidelines. Most of them see bone marrow biopsy as something that can be done if the cause of cytopenias (low RBC/HgB or platelets) is not clear. For people with CLL, the 2 main causes are autoimmunity and CLL itself crowding the marrow. If there's a positive blood test for autoimmunity that causes low hemoglobin or low platelets, they can treat the autoimmunity, and delay CLL treatment. CLL itself will eventually cause both of those cytopenias (RBC/HgB and platelets), though. There's probably other reasons for those cytopenias that I'm not aware of.
I think bone marrow biopsy depends on the situation. It's not a requirement for treatment in most cases if there are other indications for treatment. It's more common with SLL decisions, I think, because blood testing doesn't provide as much info, and repeated lymph node biopsies may not be desired. Hemo/oncos who don't see many CLL patients may be more prone to doing a BMB, because BMB is standard of care for acute leukemias.
=seymour=
Hi Jim,
There have been great answers here about people's experiences with BMBs, especially with respect to bone marrow infiltration levels. But IMO, AussieNeil has asked an important question about the question, (whether BMBs are normal in W&W), that is: what is your medical context? There are so many different versions of CLL & each country has different treatment approaches.
Pardon the goofy analogy (metaphor?), but it almost feels like we could be discussing automotive advice w/o knowing what model car, whether it's gas or diesel, how old it is, which options it came with, which country, what its repair history is, and whether you've taken it to a specialist or the local mechanic. All we know is it's a car and some of the fluid levels are low. We don't even know what other other diagnostics have been run.
Those of us lucky enough to see CLL specialists know they track its advancement by comparing our blood labs over time. In the US & many other countries, they do a FISH test to check our cytogenetic markers. They test for our IGHV mutational status, which also plays a part in how soon our disease progresses. Lately, they even do next generation sequencing to help decide the best treatment plan (also a regular blood test). mdpi.com/2072-6694/16/13/2450
CLL specialists remind us to look out for physical symptoms like fatigue, drenching night sweats, fevers, and unexplained weight loss.
This HU pinned post “When will I need treatment” has lots of great info. healthunlocked.com/cllsuppo...
I often refer to this list: from ASH 2018: ashpublications.org/blood/a...
Active disease should be clearly documented to initiate therapy. At least 1 of the following criteria should be met.
1. Evidence of progressive marrow failure as manifested by the development of, or worsening of, anemia and/or thrombocytopenia. Cutoff levels of Hb <10 g/dL or platelet counts <100 × 109/L are generally regarded as indication for treatment. However, in some patients, platelet counts <100 × 10^9/L may remain stable over a long period; this situation does not automatically require therapeutic intervention.
2. Massive (ie, ≥6 cm below the left costal margin) or progressive or symptomatic splenomegaly.
3. Massive nodes (ie, ≥10 cm in longest diameter) or progressive or symptomatic lymphadenopathy.
4. Progressive lymphocytosis with an increase of ≥50% over a 2-month period, or lymphocyte doubling time (LDT) <6 months. LDT can be obtained by linear regression extrapolation of absolute lymphocyte counts obtained at intervals of 2 weeks over an observation period of 2 to 3 months; patients with initial blood lymphocyte counts <30 × 10^9/L may require a longer observation period to determine the LDT. Factors contributing to lymphocytosis other than CLL (eg, infections, steroid administration) should be excluded.
5. Autoimmune complications including anaemia or thrombocytopenia poorly responsive to corticosteroids.
6. How ill you are depends of which of the criteria are met. Lymph count and lymph nodes don't result in illness while anaemia and thrombocytopenia will.
Personally, I've had 2 BMBs done by a very experienced CLL specialist (for a clinical trial) and they hurt like hell. So (outside of a clinical trial) I'd want to make sure all these other recognized guidelines have been followed before doing it again. But if they had, and a CLL specialist really thought it was important, I'd follow that advice.
I'm glad you're here, and that you're asking good questions. I hope you add more info to your profile bio so we can be of more service in answering your questions. Hang in there.
I got the bone biopsy and it wasn’t painful at all. I wasn’t really anesthetized but given an injection for pain and a drug that is to remove it from memory. They told me I could have gotten anesthesia but it would led be considered surgery and my doctor didn’t prescribe surgery. The oncologist I see, decided to start treatment when my anemia got worse. I trust that the doctors know best but all have different opinions about when to start treatment. Best to you.
Bone Marrow Biopsy
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Frequency of CT scan during 'watch and wait'
watch and wait. 
