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.
Bone Marrow Biopsy
On "watch and wait", but started to suffer with eczema
Wait and watch
Frequency of CT scan during 'watch and wait'
watch and wait. 
