Friday, February 12, 2016

Some News Might be Good News

Tuesday night I felt a little back pain while in bed, unusual for me.  As it happened, we had already scheduled an MRI at Mayo Clinic for the very next day to look at the nearby vertebrae, numbers T5, T9, and T11, and compare that with MRI images from last October.  Doctor WG called last night to talk about those results:
  • Neither the doctor nor the the radiologist can see any significant damage to the bones of those vertebrae.  That is very good news.
  • However, we still don't know for sure whether the PET scan hot spots are due to increased tumor burden or to inflammation ("flare") caused by my own immune system attacking the tumor cells.
  • We don't get much help from blood tests - IgG and M-spike went up a little from the week before, but light chains didn't.
  • The back pain continues, at level 3 or 4 out of 10, and may actually provide the best guidance.  If it gets worse I can choose to stop this study and go on a proven 3-drug treatment like Revlimid and dexamethasone (DEX) with Kyprolis or Darzalex.  Of those choices, I have only had DEX before - the others would be new to my myeloma.
  • It is quite possible that the pain is not caused by bone damage but by the flare itself, in which case it should decrease as my immune system mops up the remaining myeloma cells.
  • Dr WG believes that the immune system "flare" has reached its peak by now, and should decline from here rather than get worse.  
  • Dr WG also did discuss this whole issue with Dr ML, my original doctor at Mayo Clinic, before calling me.
The back pain isn't worse, but it has changed a little.  Wednesday it seemed to originate in the spine and radiate outward in the muscles toward my left, but today I can feel it on both sides of the spine.  Muscles along the ribs are sensitive to touch, though the spine itself is not very sensitive.  It is still just 3 or 4 out of 10, which is good. 

There is the possibility that the pain was actually caused by some brief snow shoveling on Tuesday, which followed an 8-mile walk/run on Monday.  So for the time being, there will be no snow shoveling, running, or speed walking until the pain goes away.  Sigh.

I know - I'm whining.  But this is how I get my head around the very important decision that faces me - whether or not to continue on the study.  The study medications have no noticeable side effects, so I would like to stay on it (even though the administration of the study is a huge pain in the posterior).  Any alternative "proven" treatment will definitely have side effects, including and especially those from dexamethasone.  Therefore, unless the back pain worsens or my myeloma clearly progresses, I'll stay on the study.

The bad news:  Our friend and fellow blogger Pat Killingsworth has died.  Here are his:
He was a fierce blogger, posting something useful about his myeloma journey or about myeloma in general every day.  My sweeties and I knew him and his wife Pattie personally, from their days in nearby Wisconsin.  We miss him.  Go with God Pattie.

Thursday, February 11, 2016

No News Is No News

We still don't know if the current immune therapy is working.  Are the vivid PET scan hot spots just "flares" of inflammation caused by my own immune system attacking the myeloma cells, or are they actually increases in the myeloma tumor burden?

Yesterday's MRI of the thoracic spine may give us the answer, when those 3D images are compared with a previous MRI from last October.  That takes an expert radiologist, and results should come today.  A preliminary view seemed to suggest no changes in the bone structure of my vertebrae, but I'd like that confirmed before I run again.

If you haven't heard, a good friend of ours, Pat Killingsworth, is in the hospital with TTP, a blood disorder.  He is unresponsive and on life support.  Here is his blog: .  The latest information is in the comments after his most recent post titled, significantly, "I'm Not Dead Yet!"

Thursday, February 4, 2016

Immune Therapy Flare

Wednesday, February 3, 2016:

PET Scan Results:

Today was PET scan day.  I had once thought that the PET scan would show definitively whether or not the current regimen was working.  However I am currently on a study of immune therapy, and last week Dr WG prepared me for today by explaining that the current study medication could cause the PET scan hot spots to show a "flare."  That is the therapy, if it is working, could actually cause previously-existing hot spots to appear larger or more intense than they did in the PET scan of four months ago, because of inflammation caused by my own immune system currently attacking the myeloma.  He also told me, however, that if the therapy is working he wouldn't expect any additional hot spots to appear, beyond those already seen on the previous PET scan in October.

Sure enough, the hot spots did flare!  I don't yet have numbers on how much they flared, but it was a lot, and he said that he would be very surprised indeed if the increase in size and intensity was due to an increase in tumor burden.  Two of the hot spots are in my spine, vertebrae T5 and T9, and he thought that I would certainly have back pain in those areas if the flare was due entirely to the tumor.  Indeed, I ran a marathon last Sunday (number 92) without feeling pain in my spine.  There is one additional hot spot, in another vertebra, but Dr WG believes that it was present in the previous PET scan, just not bright enough to be noted by the radiologist.

Dr WG actually seemed to be quite enthused about the possibility that the trial therapy really is working as it is supposed to work.  Last week he had related a personal experience from several years ago, where a patient (with a different cancer) was not apparently improving on immune therapy, and in fact seemed to be getting worse fast.  The patient was told that nothing more could be done, and advised to go on hospice care.  However, the patient walked beck into the clinic a few weeks later, completely cured, no cancer lesions remaining.  The point is that immune therapy has to be evaluated differently from other therapies, whether in myeloma or other cancers.

As part of that evaluation, Dr WG has ordered an MRI of the affected areas for next week.  Hopefully, we will be able to compare those MRI images with MRI images from four months ago to see if the myeloma lesions have actually grown.  If they have, then plenty of other treatment options are available, including at least eight drugs already approved for myeloma which I have never yet tried.  However, I really want to give this therapy every possible chance, because it is easy to take and I experience no noticeable side effects from it.

Other Results:

IgG and M-spike were both down slightly from last week, IgG dropping from 1510 to 1440 mg/dL and M-spike from 1.5 to 1.4, lending more credence to the theory that the flares are not due to increased tumor burden.  Furthermore, IgG (including that which comprises M-spike) has a half life of about three weeks, so even if the myeloma cells are being killed left and right, the IgG proteins that they have already produced would not decline a lot in just a week.

My myeloma is IgG lambda.  The lambda light chains did show a modest increase over last week, but the kappa light chains increased even more, so the ratio actually went up a little and no one really knows whether the increased light chains have any meaning.

Beta 2 Microglobulin is a tiny protein found in the blood, often used in the diagnosis of multiple myeloma.  Higher values normally indicate a worse prognosis.  Mine was 2.56 mcg/mL today, 21% higher than any previous value over my 12-year myeloma history, 30% higher than three weeks ago, and barely within the reference range.  The doctor was skeptical that such a modest change could have any meaning, but I still wonder.  Beta 2 Microglobulin can be released into the blood by the destruction of white cells, and myeloma cells are white cells, so maybe it's just possible that the increase in this test result is another indication that the flare is due to the destruction of myeloma cells.  Anyway, if the increase means anything at all, I choose to put a good spin on it rather than a bad spin.

I am excited about the possibility that the therapy could be working, and if it works for me it could work for many.  We keep on running, and we keep on hoping.

Monday, January 18, 2016

Scary or Encouraging?

My myeloma is the Immunoglobulin G (IgG) type, so the doctors and I consider that the blood proteins IgG and M-spike (monoclonal protein) are the best markers for my tumor burden.  Last Tuesday IgG jumped 21% from 1390 to 1680 mg/dL, the highest value in years and the largest jump I have ever seen between two measurements.  That jump happened in just one week.

Either the myeloma has suddenly gone crazy, or something else is going on.  This blog is titled Myeloma Hope, so I hope that something else is happening, something good.

My doctor ML warned me in advance that the myeloma markers might not even be measured during the first eight weeks of the current study, because they might go wild (and presumably scare the pants off a simple country boy like me).  However, until now the measurements have nevertheless been done, hence today's blog about them.

Myeloma is a cancer of some (most) of the plasma cells that live in the bone marrow, but not ALL of the plasma cells - there are still some good ones.  Unfortunately there is no way to evaluate the plasma cells (good or bad) without a bone marrow biopsy, and even then you only get the cells at the exact spot of the biopsy - another spot will give a somewhat different result.  However, in my case the good and bad cells both generate Immunoglobulin G, a key constituent of any healthy immune system.  The IgG measurement includes the immunoglobulins generated by BOTH the good and the bad cells, and M-spike represents just the useless immunoglobulins made by the malignant cells.

The study drugs are intended to help my immune system recognize the malignant plasma cells as intruders and take action against them, so it is possible that the increase in IgG is actually an increase in the GOOD immunoglobulins which are designed to attack the malignant cells.  If so, then perhaps the study therapy is starting to work!  This notion is somewhat supported by the fact that M-spike remained constant at 1400 mg/dL (1.4 g/dL) for the week, despite the jump in overall IgG.

I say "somewhat" because I don't quite trust the accuracy of M-spike, in part because a week ago it was actually higher than IgG, an impossible result.  That has happened before - Dr WG says they "round up" the numbers.  In addition, even before rounding up, I don't believe that the numbers have either the accuracy or the precision of the IgG measurement.  Nevertheless a steady M-Spike is better than an increase.  I'll take it.

Oh, I hope that this therapy works!  It is SO easy to take - I feel full of energy every day, and neuropathy from previous therapies (especially the next-previous study) is gradually disappearing.

At the ninth week of the study I will get another PET scan, and then we will know.  If it isn't working I have a plan, but I sure want it to work.  Week seven is coming up.

Thursday, December 31, 2015

Modestly Good News

Tuesday, December 29, 2015:


My new treatment regimen is three weeks old now, and my blood is being checked every week at Mayo Clinic (182-mile round trip).  For the first two weeks the myeloma markers went up - the treatment didn't seem to be working at all.  Nevertheless, Dr WG and I agreed  that I would continue on the study for the first eight weeks, then get the scheduled PET scan to get the best possible information about the state of my myeloma.

However (Yay!), my primary myeloma markers went down a bit at the end of this third week.  IgG dropped 12% from 1520 to 1350 mg/dL, and M-spike dropped 7% from 1.4 to 1.3.  These are not big changes, but they go the same direction and therefore are probably real.  I guess we'll find out for sure next week, and the week after, ...

One factor that confuses the measurements a bit is the slow decay of IgG, which has a half life of two to three weeks in the blood stream.  This means that even if the treatment does kill some of the myeloma cells that are spewing out the monoclonal IgG, that IgG stays around for a while to screw up the measurements.


It's hard to believe, but after more than 12 years with myeloma, I had my very first infusion just three weeks ago as part of the current trial.  I had another today.

At Mayo in Rochester, Gonda Building tenth floor, you are brought into a cute little private room (one of many) with a very fancy lounge chair, a TV & remote, extra chairs for my sweeties, outlets to plug in my laptop, and the infusion equipment.  They offer water, juice, and snacks as well.  Next time I'll ask about beer.

I don't have a port or picc line (yet?), so in my case they inserted a tiny needle into a vein on the back of my left hand (I'm right handed).  To hold it in place they covered the entire back of the hand with a clear plastic bandage, then bent the tube around and secured it with medical tape halfway up my forearm.  The infusion felt cool as it began to flow in, but there was no other sensation or reaction.  Thirty minutes later it was all over, as they flushed the very last bit of medication into me with a little saline.  Very easy.

Except: Medical tape of any kind is a problem for me.  If it doesn't tear my ancient skin off upon removal, the adhesive causes an allergic rash that can last for weeks.  So this time I brought my own stuff!
  1. Some skin was torn when the bandage was removed from the back of my hand after the first infusion, so I brought adhesive remover wipes (Uni-Solve brand works well) which the nurse was happy to use and which left no torn skin or adhesive residue behind.  
  2. When the adhesive tape wrap was removed from my forearm after the first infusion it left an allergic rash that is still not entirely resolved three weeks later, so this time I brought a first aid wrap, a highly stretchable tape that sticks to itself but not to the skin.  That held the tube in place perfectly and left no rash.
The nurse at Mayo told me that they have those items on hand, so I could just ask for them next time.  Maybe I will, but I'll bring my own just in case.

Am I getting good at this?  I don't like the idea of getting good at chemotherapy.  But my sweet wife recently acquired a sign that I see every day:  "if you are lucky enough to be here, you are lucky enough!"  12 years with myeloma, still here, still running marathons, heading into my fourth quarter-century - indeed I am lucky.

Friday, December 11, 2015

Bone Marrow Biopsy

PET/CT scan, PET/MRI scan, 46 vials of blood, two 24-hour urine collections, two more urine samples, ECG, Skeletal (x-ray) bone survey.  That is the list of tests required for qualification and for Cycle 1 Day 1 of my new myeloma therapy trial.  Not to mention height, weight, blood pressure, temperature, walking blood oxygen, and a short physical exam.

I won't name the medications involved in the trial yet because, in case they don't work for me, I wouldn't want to discourage anyone else from using them.  One of them is already a whiz-bang success for certain other cancers.  I can say that the study does involve immunotherapy, meaning that the medications take advantage of my own immune system to dispose of the errant plasma cells that are my cancer.

Tuesday I had an infusion of one medication, and was given capsules of another to take at home.  I have taken those faithfully for three days now, and will drive the 180-mile round trip to Mayo Clinic again next Tuesday to see how things are working out.  And the Tuesday after that, and on and on for a while.  Fingers crossed.

I had such a lovely 7-year ride on Pomalyst, running 60 marathons in 47 states during that time.  Wouldn't another 7 years like that be wonderful?  All prayers accepted.

Wednesday, October 14, 2015

Two More Bone Lesions

We have known for months now that the (unnamed) oral study regimen I've been taking was doing nothing for my numbers, IgG and M-Spike, except holding them stable.  We held out some hope, however, that it might at least take care of the lesion in my T5 vertebra.

Alas, the opposite has happened.  Last Friday's PET/CT shows that the T5 lesion has increased in intensity from 6.3 to 10.1 SUV max.  Further, there is a "tiny" lesion with SUV max of 3.7 in T9, and one in the right scapula with SUV max of 5.2.  The study regimen works very well for some people, I'm told, but my myeloma isn't fazed by it.  Of course I am now finished with that regimen, and I have other reasons to be pleased about that.

What's next?  I don't know yet.  Happily there is no emergency - according to the doctors all three of the lesions are still small and unlikely to cause a bone fracture soon.  Two doctors at Mayo have agreed with me that Kyprolis and Pomalyst together might be a powerful regimen for me, but one of those doctors said, "that combination will always be available," encouraging me to enter a trial of something new instead.  Moreover, Kyprolis (carfilzomib) is an injection/infusion on two consecutive days each week, for three weeks out of each four, so I would have to arrange my marathoning schedule to be home for that.

Pomalyst gave me a wonderful seven-year ride as a single agent, and I started on it as part of an early study.  I would like to do that again - who wouldn't?  Right now two of the best myeloma specialists on the planet are researching studies that might be appropriate for me, even looking into a particular one that is currently not recruiting.  I expect some news from them soon, perhaps today.

Most certainly I will blog about it.

Friday, September 25, 2015


Mayo in Rochester is doing a study of PET/MRI, comparing it with PET/CT for myeloma patients.  A standard full-body PET/CT gives a patient one of the largest doses of radiation of all the imaging procedures, but most of this is due to the CT, not the PET.  The CT is required because the PET doesn't by itself provide enough information to determine where the bright spots from the PET are actually located.  PET doesn't distinguish between bone and soft tissue - it just sees the radioactive sugar molecules that have been gobbled up by active cancer cells.
March 2015 - PET/MRI scanner
arrives at Charlton Building

MRI can see the bones and soft tissue, thereby providing a reference for the PET's bright spots.  While CT uses X-ray technology to make its image, MRI does not, and contributes no radiation risk.  It's noisy and maybe takes a little longer, but safer.

I don't want to make too much of the risk of a PET/CT - some authorities would say that it increases the risk of a later cancer by at most 1 chance in 500 or 1000.  Contrast this with the natural incidence of fatal cancer in the U.S. population, about 1 chance in 5, so one CT or PET/CT is down in the noise.  Repeated CT's add up, though, so Mayo seems to limit PET/CT's to no more than one every six months, which makes it difficult to follow a patient's myeloma.  Hopefully, PET/MRI can shorten that interval.

I've been waiting for months now to find out whether the lesion in my T5 is responding to the current study regimen, so in about two weeks I will participate in the PET/CT - PET/MRI comparison study.  I really want this to work, for my own sake and for all other myeloma patients.

Thursday, September 24, 2015


End of Cycle 5 of the current study medication.

For me this study started in April, and as of two weeks ago I seem to have have little to show for it.  That's why I am not identifying the current study medication.  Also, I am aware that this medication has worked spectacularly well for some other people, and I wouldn't want to scare anyone away from trying it.

Throughout the five months IgG and M-Spike have both hovered around the same values that they had when I stopped using Pomalyst.  Pomalyst was an unqualified success for me, holding my myeloma steady for seven years, until a PET scan finally showed a lesion in vertebra T5, probably from a sub-clone of the original myeloma.

Meantime the side effects of the current study regimen are significant:
  • In my case it includes dexamethasone (DEX), which has its own set of side effects, and I can't be certain which come from which drug.
  • I take the meds in the evening, so the next day is DEX day.  I have kept track of blood glucose and discovered that a diabetic diet (low carb and slow carb) helps to keep blood glucose down on DEX day and the day after.  Nevertheless I have the other DEX symptoms of high anxiety, loss of sleep, tight voice, bad skin, and more.  DEX was reduced this month from 40 to 20 mg/week, but I don't feel a big change.
  • I have lost quite a bit of leg muscle, evidenced in significantly lower running/walking speeds.  DEX is famous for this side effect, but perhaps the study drug is somewhat responsible as well.
  • The large muscles in my legs ache, except on DEX day and the day after.  Massage doesn't seem to help.  It's not a disabling pain - just a constant background that can interfere with sleep.
  • Peripheral neuropathy has increased significantly, especially in my feet.  They are numb, though not painful, and sometimes they feel as if they are cold, but when I pull off the wool sock and feel them with my hands they are actually warm.
  • My normally-dependable appetite comes and goes in the days after the medication is taken - sometimes food doesn't seem very interesting.
  • In general, life has lost some of its zest.  The regimen gives me one week off out of each four, and I really do look forward to that week.
It's all worth it though, if the current regimen is reducing the lesion in T5.  Stable is not good enough, the lesion has to be on its way out - other regimens are available.  We'll find out in a couple of weeks, because a PET scan is scheduled with the next visit to Mayo Clinic.  I hope that the lesion is gone or almost gone, because little else would convince me to continue the current regimen any longer.

Two more weeks ...

Scary Run

Wednesday, September 23, 2015:
This morning I did a 4-mile walk/run, walking as fast as I could and occasionally running for 20 seconds or so, average pace around 13 min/mi.

In the fourth mile, after two (but not all) of those running periods, I felt a tightness or pain in the center of my chest, beneath the clavicle.  It was not a new feeling - I have experienced a similar feeling before when running and breathing too much cold air.  However, this morning the temperature was 73 and the dewpoint 64.  

In both cases the pain subsided almost immediately when I resumed walking, gone within a minute or less.  I felt no faintness, dizziness, or weakness.

This is DEX day.  Last night I took my weekly dose of the myeloma study drug, with 20 mg of dexamethasone (dosage has been cut in half), and took 0.4 mg of tamsulosin.  I also took a tablet of granisetron, as I was already feeling slightly rocky (almost nauseous).  Then early this morning I took 25 mg of Viagra a couple of hours before the run, and ate four eggs just before the run.  No rocky feeling today, though I have not been very hungry.

This warm-weather chest pain is new.  I have been on this same regimen for five months and have often run on DEX day, without having this pain, though I have rarely taken granisetron the night before a run.  I have eaten four eggs before. The tamsulosin (Flomax) is new, to treat BPH.  By afternoon I had contacted my primary doctor.  He wasn't quite ready to order a stress test yet, and this plan developed:
  • Do exactly the same run tomorrow, with the four eggs and with the tamsulosin, but without the weekly study drugs or the Viagra.  If symptoms reappear, then the problem is not the myeloma study drugs.  If they do not, then wait and see.
  • If necessary, do the same eggs/run/walk test again, but without the tamsulosin.
  • If symptoms still reappear, then perhaps it's time for the stress test.
Last night I had heartburn (reflux) which woke me from sleep - very unusual for me.    Were yesterday's running incidents also just heartburn?  Since it has not happened before, perhaps I wouldn't recognize it during a run.  Running is known to be a cause of exercise-induced heartburn, and could have been a contributing factor.
I am beginning to suspect the tamsulosin as a contributing factor.  Few medical references list heartburn (or reflux, or GERD) as a potential side effect of tamsulosin, but many references do list heartburn as a side effect of alpha blockers, and tamsulosin is an alpha blocker.   Granisetron is also known to cause heartburn for some people.

Today, Thursday, September 24, Second Run: 

Today I repeated yesterday's run, almost exactly, even eating the four eggs shortly beforehand. 
I did take the tamsulosin last night, but no myeloma study drug, DEX, granisetron, or Viagra.  I experienced no chest symptoms, so none of the drugs are off the hook as contributing factors.

I'll keep taking the tamsulosin for BPH, and wait and see if the chest symptoms appear again.  

Tuesday, June 23, 2015

End of Cycle Two

Tuesday, June 16, 2015:

I have been on a trial of a new oral regimen for two months now, and I am a little disappointed to report that there is no significant change in my numbers.  My IgG dropped from 1230 to 1190 mg/dL this month, and M-Spike from 1.2 to 1.1 g/dL, but both of those values are well within their recent variability.  The good news is that the numbers didn't go up!

Dr L tells me that this particular treatment regimen may take a while before it has a significant beneficial effect - several cycles perhaps.  I'll wait I guess - not much else to do.

All of the other numbers are OK.  Platelets are 144 billion/L, slightly below the reference range of 150 - 450 billion/L, but apparently nothing to fret about, so I don't.  Neutrophils and the rest of the white cell counts are dandy, red cells are fine.

Of course we don't know anything about the lesion in vertebra T5.  We can only see it with a PET scan, and we don't do those very often because of cost and also because of radiation exposure.

Peripheral neuropathy is an issue.  My feet feel somewhat numb, a little more than before this new regimen, and they tingle a little, but so far no pain.  I am keeping them warm and busy in hopes of slowing the nerve damage that causes the neuropathy.

In the meantime I am physically quite active with walking, running, cycling, and lawn mowing, living a life of quality and trying to keep the DEX (part of the new regimen) from disassembling my muscles.

Wednesday, May 20, 2015

End of Cycle One

Tuesday, May 19, 2015:

For most of the last seven years on the previous regimen I was happy when the results at the end of a cycle were the same as the results of the previous cycle.  "Still stable" was the byword.  We only changed regimens because of a T5 spinal lesion found by a PET scan.  I had hoped, though, that the results of this first cycle of the new regimen would show improvement, a reduction in IgG or M-spike, preferably both.


Nothing much yet.  Today my IgG was 1230 mg/dL, actually up just slightly (within measurement tolerance) from recent months, and M-spike was 1.2 g/dL, about the same as recent months.  No change there, but still stable.  Dr L did not seem concerned, pointing out that this regimen isn't as likely as other regimens to produce quick, dramatic results.

Something strange did happen to light chains though.  Both Lambda and Kappa went down, but Kappa went WAY down to a fifth of its value of five weeks ago, now below the bottom of the reference range at 0.3 mg/dL.  Dr L was not too concerned about that, and in fact said it means that something is happening!

We'll just have to wait another month.  Steady as she goes.  I'll be a patient patient.

PET Scan Lesion in the T5 Vertebra:

We will wait at least six months to look at this lesion again, because it can only be seen as a sugar-sucking bright spot on a PET scan.  PET scans are expensive and radiation intensive.  This is a dime-sized lesion in a bone that is actually fairly large, so Dr L didn't think that it seriously weakens the vertebra yet.

I asked if it is likely to be a new and different clone (since it showed up while IgG and M-spike were stable).  Dr L used the term "sub-clone," and said it is quite possible.  If so, however, we may not know soon because we cannot biopsy it, hidden behind the spinal cord from the back, and the lungs and aorta from the front.  We have to treat systemically.  My hope is that the new sub-clone is more responsive to the new regimen than the original clone was after this first cycle.  Hey, it could happen!


I have now heard from two friends who experienced painful neuropathy in their feet on my current regimen.  In contrast, however, Dr L said that only about 10% of patients have that experience.  So far I find myself in the 90% group - I feel some numbness in my feet and a slight tingling in my fingertips, but I'm not sure that either symptom is worse than it was before I started this regimen.  There is no pain and no loss of function yet.  I'm keeping my feet warm and busy, plus lots of Vitamin B.  Next month I will have an appointment with a Complementary Medicine doctor at Mayo, to discuss other neuropathy treatments and practices.


Platelets were lower than usual for me today, 134 k/uL, slightly below the bottom of the reference range, even though two weeks have passed since the last dose of the new drug.  On the previous regimen neutrophils were at risk, though mine never went below the study cutoff.  This regimen is more likely to affect the platelets, so if that count goes too low I could be at risk for internal bleeds.  Happily, this most-recent current platelet count is still well above the study cutoff of 25 k/uL.

Nevertheless I will be careful - as recommended by a knowledgeable Mayo pharmacist I have gone off aspirin and other supplements that could influence clotting.  Again this month I will be getting a CBC done locally prior to each new dose of the medicine.  If platelets (or anything!) are below the cutoff, we will stop the regimen at least until the numbers come back up again.

Plasma Cell Proliferation:

One of the results obtained from the bone marrow biopsy of five weeks ago is the Plasma Cell Proliferation Report.  This stuff is well above my pay grade (I am most definitely not a doctor), but as I understand it, "flow cytometry" is used to examine biopsied plasma cells more or less one-by-one.  Those cells which are determined to be monotypic (the myeloma cells) are examined by "quantitative DNA analysis" to see if they are in S-phase (in the process of dividing into two cells).  Dividing is bad - that's how cells multiply!

My report says "Monotypic Plasma Cells S-phase: 0.3%.  This means that about one third of one percent of the myeloma cells in that bone marrow biopsy on that day were dividing.  According to Dr L, that is actually a good number - my plasma cells are not going hog-wild on me (I believe the doctor used a medical term).

Further, this result corresponds closely to a 2008 biopsy result called the Plasma Cell Labeling Index, then used at Mayo Clinic but now mostly replaced by this flow cytometry result.  Still further, only one clone was detected - no new ones.  Meaning?  The plasma cells in that hip may not have changed much in 7 years on the prior therapy.  It is quite possible, though, that the cells in the T5 vertebra are a new clone, and we can't know yet how fast those might be dividing.  Fingers crossed.

Study Completion:

The Consent Form that the doctor and I signed does not mention a completion date for the study itself.  According to, however, this study will reach completion in July of this year.  Dr L discounted that, thinking that's just the date at which the study will stop accruing patients, and the study itself will likely continue at least until the FDA approves the drug.