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.

Monday, May 11, 2015

Day 21 of Cycle One

The trial specifies treatment doses on days 1, 8, and 15 of each 28-day cycle, the oral Primary drug plus dexamethasone (Dex) 40 mg.  I have taken all of those pills, and today is the sixth day after the last dose:
  • Myeloma results:  No information yet.  That's next week, on Tuesday, which is also Day One of Cycle Two.  Hope hope.
  • CBC Today: Good. White cell count is entirely normal, neutrophils especially, and platelets are above the bottom of the reference range.
  • Peripheral neuropathy:  Just before starting this trial I chanced upon a myeloma friend who had been on the same trial, but had to stop it because of painful neuropathy in his feet.  He said that it started with numbness.  I already have a slight numbness in my feet from prior therapies, so I have been very alert to changes, but so far have not felt any changes.  Fingers crossed.
  • Headache:  Yes, when coming off Dex, occasional and easily treated with naproxen (Aleve). 
  • Nausea, other stomach issues, rash, infection:  None.  I took one anti-nausea pill before the first dose, and none since.
So far this has been an incredibly easy regimen to take.

I'll post again when the myeloma results (IgG and M-Spike) are known.  The recent PET scan spotted a lesion in my T5 Vertebra, but I probably won't know the fate of that lesion for some months.

Monday, April 27, 2015

Day 6 of Cycle One


Good CBC.  As part of my new myeloma regimen, we do a CBC with differential at the end of each of the first three weeks, just before taking the next dose of the Primary Drug.  I get that done at the local clinic, with the results sent to Mayo Clinic.

I'm not a doctor, but I know what my doctors want to see in the CBC, and by that standard I'm doing great:
  • White blood count is 5.8 k/uL, higher than I remember seeing it in years and well within the reference range.  
  • Neutrophils, which have been lower than they should be and which we have watched with apprehension, are 3.5 k/uL, perfectly normal.  
  • Platelets are 172 k/uL, on the low side but about where they have recently been and also well within the reference range.  
We don't yet know if the first dose of this new regimen is fighting the myeloma, but the CBC at least suggests that it isn't hurting me.  I don't yet detect any side effects from it.  Tomorrow I'll take the second dose.  Three weeks from now we'll find out what is happening to IgG, M-Spike, and light chains.  I don't know when we'll look at the bright spinal lesion revealed by the recent PET scan, but PET is the only way to see it, so I hope we'll do that in a few months to confirm that the light has been extinguished.

Wednesday, April 22, 2015

Day One of Cycle One

I'm now on a study of a new drug (Primary drug), along with dexamethasone (Dex).  I take both once per week for three weeks, then one week off from the Primary drug, then repeat that cycle.

Yesterday was Day One.  We drove 100 miles to Mayo Clinic in Rochester for no reason other than to pick up the pills of the Primary drug (they wouldn't Fedex them), then waited 3 1/2 hours to pick them up, which normally takes less than an hour (not Mayo Clinic's best day, grump grump).  But we got back by dinner time, to take them as follows:
  • Dex with the evening meal: ten tiny 4-mg tablets = 40 mg.
  • Wait an hour and a half after finishing the meal and my one beer.  I asked - the pharmacist said beer is food.  Tsk.
  • Take a Kytril tablet (Granisetron) against possible nausea.
  • Wait another half hour.
  • Take the Primary drug.
This study has two arms which vary in the amount of the Primary drug. Apparently I'm in the high-maintenance arm, more likely to have side effects I'm thinking, but possibly more effective as well.  OK with me, because they'll drop the dosage if I run into trouble.  I want to see that PET Scan spot (lesion) on my T5 vertebra go away.

So far, on day 2, also known as the morning after, NO Problems:
  • My biggest concern is neuropathy, but after just one day I certainly wouldn't expect any neuropathy, and there is none.  I have just a little neuropathy anyway in fingers and feet, and that actually seems to be less today.  Perhaps the Dex is improving it temporarily - Dex is a powerful anti-inflammatory among other things.  Seven years ago the Dex with a different regimen cured my chronic headaches, apparently for good.
  • I experienced no nausea.  The prescription suggests taking one pill just before taking the Primary drug, then another 12 hours later.  I skipped the second one.
  • I slept well, despite the drugs.  Dex, especially, makes that difficult for some people - I'm lucky.
  • My blood oximeter displayed 97% with a heart rate of 55, both this morning and this evening.  Prior to this therapy, for the last seven years, those numbers would usually be about 98% and 44.  Heart rate is low because I'm a runner, with stronger than usual "cardiopulmonary function," according to the docs.  We'll see what they are during the week, off Dex.
  • In addition to neuropathy, the drugs can cause a drop in platelets and neutrophils, among others.  For this first month I will get weekly CBC counts.
I felt WONDERFUL in my run this morning, and ran faster than usual, an effect of the Dex.  It's like waaaay too much coffee.  I've had Dex before, and if experience teaches anything I won't feel quite so wonderful tomorrow, as the Dex effect wears off.  I'll let you know.

Monday, April 13, 2015

New Regimen

After seven years my myeloma has finally made an end run around my dear friend Pomalyst and found a way to hurt me.  The previous post shows the PET scan of the hot little lesion that threatens to hurt my spine.  Pomalyst is still working, you might say, because the blood markers IgG and M-Spike continue to be stable.  Nevertheless the T5 lesion appeared, so something must change soon, and I am enrolling in a study of a new drug.

Enrollment in the study is tomorrow, Tuesday, with a battery of appointments:
  1. Urine test
  2. Doctor visit
  3. Bone marrow biopsy
  4. Electrocardiogram
  5. Chest X-Ray
  6. Blood draw for who knows what
  7. Skeletal bone survey
  8. Second doctor visit
  9. 30-minute study (don't know what this is - maybe the pill pickup?)
This basically takes all day, but I'm very happy that they made it all fit into one day because it's nearly a 2-hour drive for us each way.

I consider myself an exceedingly lucky myelomiac, because once again the myeloma menace was discovered before it really hurt me.  There was no way to find this nasty little hot spot except a PET scan, and those are not performed routinely.  Had the scan not been done, most likely I would eventually have broken that vertebra, requiring surgery and possibly resulting in serious permanent injury.  Lucky.
Patient advocacy did play a part in the luck, though.  For seven years, on the anniversary of my start in the Pomalyst trial, I have requested some sort of check on the bones, be it an X-Ray survey, a DEXA scan, or a PET scan.  This year the PET seemed appropriate because of a minor pain in the lower back.  Nothing was found down there, but the T5 lesion up by the heart changed everything.

A fond farewall to Pomalyst, which has protected me through 60 marathons, including one in each of 47 states.  We were hoping to get to 50 states on Pomalyst this year, needing only Wisconsin, Illinois, and Nevada, but that will have to wait.  Anyway 47 isn't bad.  Perhaps we'll see Pomalyst again some time, probably in combination with something equally effective.  Meanwhile we keep running.

Friday, April 10, 2015

Seven Great Years

I started on a trial of Pomalyst seven years ago, 92 cycles ago, starting with CC-4047 (now Pomalyst) and dexamethasone (DEX) but most of the time taking 2 mg of Pomalyst daily as a single agent.  It's still keeping the M-Spike down to 1.1, but a PET scan on Tuesday revealed a small but bright (very active) myeloma lesion in the T5 vertebra.  This means that the current regimen is no longer working, my spine is at risk, and something has to change.

Copyright (c) 2015 Mayo Clinic
The image shows a cross-section of my body laying on my back, the view slicing through both arms and the chest, including the lungs (black) and with the T5 vertebra at the bottom.  The brightest spot is the myeloma, just above the spinal cord in the vertebra.

This image is copyrighted 2015 - no one has permission to display it online or anywhere else.

Dr L called this evening and we had a wonderful conversation.  Some points:
  • This may mean that the myeloma has mutated in that location, or that a pre-existing clone, resistant to Pomalyst, has finally raised its ugly head there.
  • Either way, this lesion has to be treated, both to protect the spine and to keep the new clone from taking over.
  • There is no way to know how fast the lesion is growing, so sooner is better than later.
  • The lesion is not accessible by needle (for a biopsy or for treatment), because the lungs and aorta are in the way from the front and side, and the spinal nerve bundle and bone prevent access from the back.
  • Dr L didn't think it was a good target for radiation therapy, feeling that a systemic treatment should be tried first.
  • This lesion probably cannot be seen by x-ray.  The hole in the bone might be seen by CT-scan, but that wouldn't show whether the myeloma was still active, so the only way to confirm a successful treatment will be another PET scan showing that the sugar-sucking bright spot is gone.
Here are three interesting treatment possibilities:
  • The study started with Pomalyst and dexamethasone, so why not just add DEX back to the regimen?  This would be the most conservative approach, but I'm not enthusiastic about it because I think the bright little lesion needs more aggressive treatment.  I really really want to stomp it out.  Really.
  • How about adding a few cycles of Kyprolis to the Pomalyst (with DEX), and then going back to Pomalyst maintenance if that regimen succeeds?  This approach might work, as Kyprolis and Pomalyst are a very potent combination.
  • There is a study of Ixazomib (MLN9708) with DEX at Mayo Clinic.  Ixazomib is a new oral proteasome inhibitor which appears to be very active against myeloma with few side effects.  The study regimen includes DEX, but not Pomalyst.  Mayo is checking to see if I am eligible.
There are other choices, of course, several others.  We exclaimed about the abundance of therapies available now, compared with those available 12 years ago when I was diagnosed.  Even thalidomide was then available only in a trial, and there was no Pomalyst, Revlimid, Velcade, Kyprolis, or (several others).

How to choose?  My personal goal is to stay alive and competent for as long as I can benefit my wife and daughter.  I believe that's my purpose here on earth, so all medical decisions are made with the advice of a great doctor and with that goal in mind.

Sunday, April 5, 2015

Dr Martha Q Lacy, Woman of the Year

The Leukemia & Lymphoma Society (LLS) combats all blood cancers, including myeloma, supporting research as well as the patients themselves.  Every year the LLS holds a Woman (and Man) Of The Year competition, to raise funds and to honor the nominees.  Dr Lacy is a nominee this year.
Martha Q Lacy, M.D.

Dr Lacy has been my doctor for the last seven of my 12 years with myeloma.  She introduced me to a trial of Pomalyst, the drug that has kept me up and literally running for all of those seven years.  More importantly, she is the Chair of the Division of Hematology at Mayo Clinic, a Professor of Medicine, a frequent speaker at conferences of the American Society of Hematology, and doctor for hundreds of other myeloma patients.  She's the real deal.

Recommended reading:  Here is a copy of a letter that we received from her a few days ago: lacyletter.html.

If you would like to honor Dr Lacy in the LLS competition, and help all of us blood cancer patients to boot, please go to her secure fundraising web page.

Thank you!