Bloodwork is stable, watchful waiting,stage 1(ish).What's the chance that the bone marrow biopsy will show anything different or additional?

[HeatherW71]

Thoughts? Should I bother? I don't really feel like we have a decent staging. Memorial Sloan Kettering Dr says we can do a bone marrow biopsy and some mutation/genetic testing? Am I wasting my time? Or should I do it to get more peace of mind?

[WittyApricot]

HI Heather,

I think the genetic testing for mutations and such is definitely worth it. It will give the docs and you and idea of the progression of the disease and help them to better understand your treatment options if and when you need them. For the bone marrow biopsy, I had it done to confirm my diagnosis as something about my CLL/SLL was questionable. I hope this helps.

Oh and I go to MSK too---they are great with regard to genetic information--they found my cryogobulinemia diagnosis, a rare blood disease.

[HopeME]

I would definitely get it done. It will provide a baseline for the future. I’ve had three BMBs with little difficulty. Sloan Kettering is a top flight hospital. They know what they are doing.

Best,

Mark

[Alex830]

I did have a bmb because they thought I might have multiple myeloma. My CLL specialist normally doesn’t do bmb unless there is a reason for them.

[MisfitK]

I would definitely do the mutation and genetic profile testing, but I'd skip the BMB unless the doctor deems it medically necessary (I'm assuming that you are on private insurance, and getting pre-approval based on medical necessity might be a thing).

[SurfSurf]

Hi Heather-

I was watch and wait for 9 years, monitored by MSK. My CLL was initially confirmed by a lymph node biopsy. I didn’t have BMB until I signed up in Jun 2023 with trial 20-044. The trial includes 3 BMBs. Happy to share my experience with MSK and the V+O if you wish. Very happy with my doctor and his team at MSK.

[skipro]

Currently, bone marrow biopsy in the watch and weight phase is very uncommon. All of the genetic testing is outlined in an article in the CLL Society website so that you can ask your doctor to run all of the tests on the list to see if you have any dangerous risk factors .

all of these test can be done on a blood draw without a bone marrow biopsy.

Good luck and God bless you

Skipro

[PoisonDwarf]

Hi HeatherW71,

I live in Canada where genetic testing/ bone marrow biopsy is only done when treatment is indicated. For me it’s hypothetical, for you the tests can be done at any time. Personally, the questions I would ask myself are, am I better off knowing now, what are the benefits & how would I deal with the information if the markers were less favourable? Everyone is different so there’s no right or wrong, simply what you decide is best for you in consultation with your doctors.

Whatever you decide I wish you all the best.

Lynn

[neurodervish]

BMBs are generally done only as part of clinical trials. Tests for mutational status, genetic markers, peripheral blood samples, palpation of lymph nodes and even CT scans generally offer enough data to determine a proper course of action. Getting a BMB before having these other tests done seems quite unusual. [Edit: Apologies, I just reread your bio and see that you've had CT scans and get regular blood work. But have you have you been tested for genetic markers and mutational status?]

Your first post discussed having unexplained fatigue, and I wonder if that's your motivation for getting a BMB now? That is, is your bone marrow heavily infiltrated?

Personally, I've had 2 BMBs and wouldn't wish it on anyone. I understand that some people get through them without a lot of pain, and I wish I was among them.

[HeatherW71 in reply to neurodervish]

Yeah, I'm super fatigued and struggling with it alot. Yes, this is my motivation for it. I've done all the bloodwork.. none specific for mutation. But I figure it's good to get the baseline also... even if I have "normal" marrow infiltrate. I just wanna feel better. I've been struggling with fatigue for years.. they always told me it was weight related... lost a bunch of weight and I'm down to the lowest weight in my adulthood and I'm still struggling. Have some strange things too like right hand pain and swelling, right elbow pain and feet swelling. Out of the blue.. on and off. I feel much older than 52.

[SofiaDeo]

Staging in CLL is not critical like it is in many other cancers. For us, IMO it's more of a description than something that is needed for a treatment decision. For example I was "Stage 0" at diagnosis but had some unusual symptoms, such that initially I was worked up for an acute leukemia. I had a BMB as part of this, and happened to have almost complete marrow infiltration, which is unusual for early CLL. I picked out a treatment (clinical trial) and got started about the time my other cell lines started dropping from the infiltrated marrow. I went from normal while cell counts on yearly physical early summer, to white cell counts 50,000 and severe symptoms over a period of 2-3 weeks late December.

So I was happy I did it, and likely would have wanted one for a "baseline" at diagnosis. There are a few risks with the procedure, like any medical procedure, but I preferred to have the information. If you have a very vanilla presenting CLL, if it was discovered on routine checkups, if you don't have any symptoms, one may not want to. If you are feeling really "off" and have some anxiety, getting the baseline may relieve some of it.

Re: the other genetic testing, if knowledge will relieve your anxiety/help you plan, go for it. To me, knowing if one has a variant that is statistically likely to need treatment versus one that often does not, may be helpful. If I had been told I stood a good chance of being in the 1/3 of people who never needed treatment, the diagnosis would have been much less stressful. But I do think we need to take any markers commonly considered "poorer outcome" with a grain of salt. The newer agents are changing the outcomes we saw in the period before, say, 2010. I know I was expected to die, and almost did at one point, yet here I still am. AntiCD20 treatment, the BTK's, Venclexta, new agents in the pipeline, the new combos, are changing the statistics.

[HeatherW71 in reply to SofiaDeo]

What were your "unusual symptoms" because I'm feeling like something is off for sure. So it's possible to have almost full marrow infiltration with Stage 0 or 1 and "stable" bloodwork is what you are telling me then?

[SofiaDeo in reply to HeatherW71]

I am not sure what you mean by "stable" bloodwork. Are you referring to a series of tests over a number of months, and things are stable and within normal limits except for lymphs?

I had had several tooth infections the summer of 2010 from cracked molars, after "normal bloodwork" earlier that year on routine physical. Mid December, I suddenly started making mistakes at work (as a pharmacist, this was bad and immediately noticeable), felt exhausted/barely able to stand up at the end of the day, had neck/jaw lymph nodes and body pain. I assumed it was yet another infection, but worse than before. It being Christmas time, getting in to doc/bloodwork didn't get done until late Mon Dec 27. On Dec 28, I was called about the labwork which basically had WBC around 50,000 plus abnormal cell shapes. On the 30th I was in the nearest hem-oncs office, 1 &1/2 hour drive away. My small rural mountain town still does not have a hem-onc practice. Night swears started shortly thereafter, as I was getting worked up for what initially was thought to be an acute process. I told the doc he had carte blanche to order anything he thought appropriate, I would do it, and a BMB was something he requested. So was FISH and flow cytometry.

I don't recall my platelets dipping or anemia showing up for a few more months until I got into a study. Once the FISH/flow gave the CLL diagnosis, the doc didn't think I needed lots of continuing bloodwork unless I had new symptoms. He knew I was looking for a trial elsewhere in the US. But I *was* Stage 0 at the diagnosis, and the BMB *did* show almost complete marrow infiltration, but my neuts, platelets, and RBC's were OK. So yes, it is possible to be Stage 0 or 1 with a high degree of infiltration. It's not common, just possible. One reason why I recommend people get the BMB for a baseline, other things being equal. I mean, if you have a major fear of needles or procedures, unless your doc thinks you are an outlier who should have one, I wouldn't necessarily put myself through it. A skilled practitioner (doc or nurse) who does them a lot will cause very little pain. I had problems once, when my marrow kept crumbling & the ARNP needed several tries to get a decent sample, but that was not for lack of skill on her part. I felt more intense pressure instead of pain, although ones' body often may react to the procedure. I broke out in a cold sweat & felt nauseous during the "multiple attempts" one, but that was my body reacting. Like a muscle that starts twitching uncontrollably, if one doesn't panic it passes pretty quickly.

I often can tell when my CLL is active, or "something is wrong". You may be feeling disease activity, and it may not correlate with your marrow infiltration.

[HeatherW71]

Thank you so much for clarification on what you meant. I'm I understanding it correctly, at the time of your BMB, you weren't diagnosed with CLL yet or did I read that wrong?

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[SofiaDeo in reply to HeatherW71]

That is correct, I had a BMB as part of the workup when the doc initially was thinking an acute leukemia. With lymphs at 4.87 instead of close to 50,000, you are very early into this process. I also know the shock of the diagnosis affected my energy, I was clinically depressed very quickly. Could some of this be playing into your "feeling bad"? The word "cancer" is a huge shock, I remember having an abnormal pap smear years before this, and walking around in a daze for the few weeks it took for a biopsy to return (my mother had cervical carcinoma). I felt awful waiting on those results, the shock of potential cancer really affected me. Early into this diagnosis the flood of stress chemicals can affect some of us IMO.

[HeatherW71 in reply to SofiaDeo]

I appreciate the thought, but I'm not thinking that is the case since it's something that we've been trying to figure out fir at least 5 years before my actual diagnosis.The cancer diagnosis...almost helped... if that makes sense? Finally thought, ok...now we have a reason for feeling so run down. It's confusing... less answers.. more questions. I just recently had to get a uterine biopsy (extra thick lining) and have to have a colposcopy next month because I have so irregular pap and HPV apparently sitting dormant until now. Ugh. It's so many thing.

[MisfitK in reply to HeatherW71]

Have you had your vitamin D level checked? That can cause a feeling of always being run down/fatigued.

[HeatherW71 in reply to MisfitK]

Yup...mildly low from time to time.

[SofiaDeo in reply to HeatherW71]

I take an Rx to keep my Vit D, 25-hydroxy level around 70 ng/ml. At one point it was around 20, and supplementing did help. I have had docs order 1,25-dihydroxy Vit D test in error.

[MisfitK in reply to HeatherW71]

I'd see if a supplement keeping it from ever being low helps. If you're mildly low, you probably won't feel the effect for 2-3 weeks, but it could help.

[HeatherW71 in reply to MisfitK]

Like what? Vitamins? I had gastric bypass 14 yrs ago so I'm on them all. Although I'm on folic acid and have heterozygous MTHFR gene mutation... so I don't think it's even doing anything.. or possibly doing harm. apparently with that mutation "Our bodies can’t process excess folic-acid and it is stored as toxins in our organs and tissues" so I'm not sure why my Primary would put me on it. Except, she told me that I didn't have the MTHFR mutation and my 23andMe said I did. 🤦‍♀️My head hurts from all this spinning. 😆

[MisfitK in reply to HeatherW71]

No, just Vitamin D. If you are low in Vitamin D, you can have the continual issue you've had, and it's an easy fix to increase your D level with a D3 supplement. It takes a few weeks to feel the effect if that's the issue (if you were REALLY low, you'd notice in days, but those who are only moderately low take a few weeks to notice if the increased D level is making a difference to their fatigue).

[SofiaDeo in reply to MisfitK]

And to add to what MisfitK says, "low levels" of Vitamin D as well as others need to be tested/monitored because for *you personally", a higher level may turn out to be optimal. Remember when one talks about Vitamin levels (as well as certain other test levels) what's "too low" has been culled from data in large populations. No one has tested for "optimum health". There will always be outliers, people who aren't the same as the "average" person.

So randomly taking OTC VitD may not be helpful, because you don't know *if* any changes in your symptoms correlate with a blood level. It took a few years after diagnosis before my Vit D levels were markedly low, I had started avoiding the sun at diagnosis. It took a while for my levels to gradually decline. So I took an Rx Vit D, and got retested after a few months. The following year, my level was a tad too high, so the dose was adjusted. Then it got a bit low, so adjusted again. Within a few months after the initiation of therapy, I did notice a difference, I felt better. But I did it supervised, and I have personally found when my level drops below 60 ng/ml I can tell.

If you have had gastric bypass I wonder if you are like me, I have problems absorbing vitamins/minerals. I need more supplements/nutrients than the "average" person, and have since I was a child getting adult MVI/mineral supplements.

[HeatherW71 in reply to SofiaDeo]

1000% and Dr's don't really know how to account for the gastric bypass variable. All meds. I felt a whole lot better when I received the iron infusions and they told me that my iron was "within normal limits". I tried to explain to them that I believed that my optimal level was the higher end of "normal"... instead of the lower. The flat out said no. No infusions if you are within normal limits. I tried to explain but it went on deaf ears. They should know that the "normal" range is just a vague average. It's very personal though And if you don't fit into the normal box... they just treat you as you are being difficult. They were like... "your insurance will not pay for you to get infusions if you are within the limits".

[HeatherW71]

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[AussieNeil Administrator]

Your results are fairly good for someone with CLL. Have you had your immunoglobulins checked (IgA, IgG, IGM)? These are important in fighting off infections and I wonder if they might be low and hence causing your low protein result. I'd ask your doctor that about the low ionic gap reading too, though a low or high anionic gap reading commonly resolves with a retest.

Neil

[HeatherW71 in reply to AussieNeil]

Thank you Neil! I appreciate you looking at them. Nope, I haven't had anything other than a few Iron infusions. I was thinking that the protein issue might be from my gastric bypass from 14 yrs ago. I don't get alot of protein but I'm not about that "shake life" either. They are terrible. I'll just add some cottage cheese and hope that gets better.