I've had 2 or 3 bone marrow biopsies since learning I had MGUS 11 years ago. All were at my request, performed at Mayo Clinic JAX, and virtually painless. I did feel the lidocaine injection and
then some brief pressure, but it was over within 20 minutes after I arrived at the clinic. Bless my late husband's heart, his own quarterly bone marrow biopsies for most of 14 years due to a rare form of CLL really were painful. I was allowed to watch all but one of his in various clinics around the country and they were so painful he'd be in bed for 2 days after. I learned too late for him that it matters who does them and where. At Mayo JAX for example, you have 2 nurses who each do 7 bone marrow biopsies every work day and it shows. Subsequent biopsies have been as easy as my first, so for me, it
was an reasonable ask to reassure myself that an increase of plasma cells weren't the cause of new symptoms. Two primary cancers were found early in my own body in the past 2 years because of one routine screening and another one scheduled a year early because of a gut feeling one of my Drs and I had about my low ferritin. So I personally am reluctant to dismiss the value of having what has been an easy for me "screening" of my bone marrow for anyone who wants one for peace of mind if nothing else. Nor would I say to you or anyone else that the choice not to have one isn't the right choice for you unless it is only because you think it's going to be painful which doesn't seem to be the case here. Anyone who
is concerned about the possibility of pain should be aware though that they can request light anesthesia if they feel they want or need it.

I'm actually seeing Dr Ailawadhi again this month and plan to ask his opinion about doing another biopsy since it's been 3 years and there are some changes. My involved light chain went off the chart after steadily increasing over the years, I'm having more iron infusions, recurrent infections, and Bence Jones protein popped up in the 24 hour urine for the first time. I have developed neuropathy, am fatigued, and recently, a CT scan for something unrelated shows a healed spontaneous rib fracture that wasn't there last year. And my ANA came back positive though the
associated autoimmune disease markers were negative. The rib could be from a short round of radiation and the ANA could be from previous COVID infection, but taking another look seems prudent since we have learned from the Icelandic study that anyone can progress at any time. For the newly diagnosed, I am excited to see that a new formula was recently revealed at ASH I believe that determines when a baseline biopsy should be performed vs not that appears to be so stunningly accurate, it will likely replace the standard protocol established by the Dr who discovered
and named MGUS, Richard Kyle from Mayo Rochester decades ago. Cancer research moves at lightning speed and the use of liquid biopsies at Dana Farber and elsewhere is also promising as a possible replacement for traditional bone marrow biopsy methodology. I applaud you for taking a deep dive and for seeking
opinions from some of our best researchers. One thing I've learned over the four decades of advising newly diagnosed cancer patients is they need to get to an NCI designated Comprehensive Cancer Center before the first treatment is administered. Data is undeniable - patients who seek counsel at these centers live longer and better. Best of health to you 🙂

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