Tuesday, April 26, 2016

Stunning Myeloma Marker Results

In the three weeks of this new three-drug regimen, Pomalyst, Darzalex, and dexamethasone (DEX), IgG has dropped 39%, from 1330 mg/dL to 807 mg/dL, in tests done by Mayo Clinic.  This spectacular result brings IgG to the lowest level I have seen since my diagnosis in 2003.  To confirm that result M-Spike dropped 33%, from 1.2 to 0.8 g/dL, also the lowest value since 2003, when it was measured once at 0.52 g/dL.

This appears to be a spectacularly good omen, but a few things temper my enthusiasm just a little:

1. Three weeks ago, at the beginning of the new regimen, my blood also contained about a half dose of a different monoclonal antibody, unnamed because it was part of a study.  That agent declines in strength with about a four week half life, and it had been about four weeks.  Thus I have actually been treated by a four-drug combination, with one drug half gone and gradually disappearing.  We don't know what will happen when it is entirely gone.  No one has done this before.

2. Just yesterday, after the blood was taken for these tests, we reduced the DEX and moved the day that I take it to the night before the infusion.  The goal is to reduce the side effects of the DEX, but going forward it might also reduce its benefit if we're unlucky with this change.

3. In any case, three weeks is just not enough time to evaluate a new regimen.  Stuff happens.

Despite all of this temperance talk, todays results are amazing and wonderful.  They have to mean something good.  In four more weeks the tests will be repeated, and we are hoping for more great news.  In the meantime, I'll get another infusion every week. It went very well today - again no infusion reactions.

Neutrophils 3700

I was guessing 1700 / uL, with a little false bravado, actually just hoping they would be over 1000, so I was shocked to see the smiling nurse with the printout showing 3700, nine times as many as yesterday's count of 400.  Yesterday the doctor and nurses were concerned about neutropenia, asking me how I felt.  Based on prior experience, however, I believed that the neutrophils were there all along, just not measurable for some reason.  After a good night's sleep they have to be teased out of hiding, or out of some other phase, or whatever neutrophils do.

Note: I am not a doctor - what happens to neutrophils overnight is WAY above my pay grade - I am making this up!  Sort of - here is an article discussing it.  Good subject for study, because I'm sure that there are people who DO know.

Anyway the threshold for proceeding with the infusion was 1000 / uL, so here we go full speed ahead.  I'm already in the chair, waiting for the prednisone to drain into me - the Darzalex can't be started for another hour after that.

These things happened between yesterday's blood draw and today's:
  • Last night I took 20 mg of dexamethasone (DEX), and skipped one dose of Pomalyst.  I think this may be the most important factor in improving the neutrophil count.  This morning my fasting blood glucose was 143, normally about 90.  That is a proven DEX effect, of course, and I wonder if that alone can affect neutrophils.
  • This morning I got up well ahead of the blood draw and ate a good breakfast, including two cooked eggs with a scrap of last night's salmon, plus uncooked strawberries, blueberries, cherries, and blackberries, with low-fat plain yogurt, every item organic of course.  In that mix we would find plenty of live bacteria, especially in the yogurt where it is intentional, and perhaps the food can cause the neutrophils to come out and play.  I really AM making that up, but it is consistent with the realization that morning blood draws are almost always fasting, and afternoon draws always follow one meal at least, usually two meals.  
  • I did some short but intense adrenaline-pumping exercises this morning just before checking in for the blood draw:  Six flights of stairs, running up as fast as I dared and walking back down carefully, and as many pushups as I could do. 
  • The blood draw itself was done at about 11:00 am, compared with 7:30 am yesterday.  I have always believed (and observed) that neutrophils are at least double at 1:00 pm from what they are at 7:00 or 8:00 am.  Now I am wondering if it might be more about the food than the time of day.  In almost 13 years of treatment I never thought of that until today.
Next week's blood draw is 7:30 am on the same morning as the infusion.  I will do everything the same as above, except the time of day.  If the doctor agrees I will eat a similar breakfast, too, even if the doctor has ordered a blood glucose test, because the previous night's DEX will screw that up anyway.  I may not skip the Pomalyst, either, because yesterday's low count was a false alarm.
We are still waiting for the results of yesterday's kit draw to show up on the Mayo Clinic patient portal.  This is a real-time post.

Monday, April 25, 2016

Where Oh Where Have My Neutrophils Gone?

In advance of tomorrow's planned fourth Darzalex infusion, the doctors did a CBC with differential today to see how my neutrophils were standing up to the Darzalex / Pomalyst combination.  Surprise!  Neutrophils were just 400/uL, where the reference range for this lab is 1800 to 7700 /uL.

In other words, my neutrophils measured less than one fourth of the value representing the very bottom of the reference range - the lowest count that I remember in almost 13 years with myeloma.  Doctors and nurses were all asking if I felt OK, because a low neutrophil count (neutropenia) can result in neutropenic fever, potentially a life-threatening condition.  In the past my doctors have stopped treatment when neutrophils dropped below 1000.

So what do we do about that?  I have a Darzalex infusion scheduled for tomorrow.

First, I don't believe the number.  I don't doubt the accuracy of the test (much), but I have a history of low neutrophil counts that probably weren't low.  The neutrophils are actually there, but they don't show up (at least not as neutrophils) in a CBC with diff.  In the past, I have used two "tricks" to make the neutrophils appear:
  1.  Take the blood in the afternoon.  I have repeatedly found that my neutrophil count is at least double in the afternoon.  In lieu of afternoon, take the blood as late in the morning as possible.  Today's draw was at 7:30 am.
  2. Do some physical exercise just before the blood draw.  One doctor told me that the neutrophils hide in muscle tissue and can be rousted by exercise.  Another doubted that they hid in muscles, but implied that they were there somewhere, just not appearing as white cells, and told me that it was actually adrenaline that made them come out to play.  We're WAY above my pay grade here, but either way a little high-intensity exercise could do the trick - I do several flights of stairs as fast as I dare, and one set of pushups, as many as I can.
Please note:  I AM NOT A DOCTOR.  And even though these two tricks do seem to work for me, doctors and patients alike have told me that they don't work for everybody.  Maybe they ONLY work for me.

A third "trick" is dexamethasone (DEX).  Not a trick, really, but my doctors seem to agree that DEX may actually support my neutrophil count.  As evidence I have had CBC's for three weeks in a row now, prior to this one, always in the morning and with no exercise, with neutrophils always comfortably within the reference range.  In each case I had taken 40 mg of DEX the night before or two nights before.  This time we moved the DEX by one day, so the blood draw happened to come first, and got this surprisingly low result.  I think the DEX might matter a lot IN MY CASE.

So tomorrow I will use all of the tricks.  I have taken my DEX tonight already, and skipped tonight's Pomalyst capsule.  I will get another CBC/diff at 10:30 am, after getting myself just a bit sweaty with exercise.  The doctors and I have agreed that a count of 1000 per uL will be the threshold, below which the Darzalex infusion will be postponed until the count gets back up to a safe range.  At 1000 or above we will proceed with the infusion and return to the regimen.

We also drew blood for the myeloma markers today: IgG, M-spike, and light chains.  That was a "kit," then sent by overnight express to Mayo Clinic.  Those results will come on line tomorrow and I'm mighty interested.

Saturday, April 23, 2016

Three Infusions

Two at Mayo Clinic, and now the third at a highly-rated local hospital.  We have made twelve 200-mile round trips to Mayo in Rochester so far just this year, almost one per week, and I'm tired of the drive.  Of course I'll do whatever it takes to stay alive, and Mayo is indeed a world-class center for myeloma treatment, so that sounds like whining.  However, if the drive is not necessary, it is certainly more convenient (and safer) to have procedures like blood draws and even infusions done barely a 10-minute drive from home.  My current Darzalex (daratumumab) regimen calls for weekly infusions for eight weeks, then every other week for a while (if it works), and eventually once per month.

Mayo Clinic is a model of professionalism of course, and it's big, with at least two infusion centers that I know of.  By contrast the local infusion center is smaller with about a dozen chairs, most of them arranged in a circle, under the watchful eyes at the nurses' station.  But they're good.  After one infusion there, I would be hard pressed to choose one place over the other - I have no concerns about the competence of either.  This was the local hospital's first Darzalex infusion, so they literally went to school on it before I came, and they knew exactly what they were doing.  I know because I checked and confirmed everything they did, just as I had at Mayo.

My first infusion at Mayo took about nine hours, the second about six and a half, and this third local one a little over five and a half.  The amount of Darzalex is the same for each infusion, but the rate of infusion can be increased if the patient's experience with previous infusions is good.  See the Darzalex Dosage and Administration instructions. By luck I have experienced no infusion reactions at any point along the way so far, and as long as that continues, this third infusion will be the model for most or all of my future infusions, five and a half to six hours.

As many as two of those hours are not actually required by the infusion itself but by the preparation for it.  There are pre-medications (Tylenol, Benadryl, and prednisone), followed by a delay for the prednisone to take effect.  Just as important is the careful work at the pharmacy in preparing the half-liter infusion bag with the correct amount of Darzalex solution.

Local infusions will make my life a lot simpler, but control of the myeloma is what it's about.  In addition to Darzalex my current regimen includes Pomalyst 2 mg every night, with dexamethasone 20 mg once per week taken the night before the infusion, and an equivalent dose of prednisone with the infusion.  Next week the doctor has ordered a blood test kit that will give us a first indication of the effect of this regimen.  I'm sure interested.

Thursday, April 7, 2016

Pomalyst and Darzalex

Darzalex (daratumumab) is a potent myeloma treatment by itself, but even more so when combined with Pomalyst (pomalidomide), and that is what my Dr WG wants me to have now.  I couldn't agree more.  Two studies that have benefited other people have failed for me, one after the other, and my IgG and M-Spike have increased.  Far worse, my most recent PET/CT shows five lesions in my bones including three scary ones in the spine, so it's time to bring out the big guns.

I've been taking Pomalyst again now for a month, 2 mg every day, with dexamethasone (DEX) 40 mg weekly, waiting for the drugs from the most-recent study to wear off, and Tuesday I received my first infusion of Darzalex.  That was an experience.  I have been SO lucky - more than 12 years with myeloma without any infusions EVER.  That ended last December, with the last study, because one of the two study drugs was an infusion, but Darzalex is in a class by itself.  This is NOT a complaint, because we myelomiacs do whatever is required to stay alive and running marathons (or whatever) and we don't whine about it, right?  This is just a report.

According to the manufacturer's Darzalex Dosage and Administration instructions, there is the possibility of an infusion reaction of some kind.  For this reason the infusion rate starts out low and builds up.  If any reaction occurs, the infusion rate drops back to the beginning.  Furthermore, the very first infusion is a special case - the infusion rate is very low indeed - and if the instructions are followed correctly it cannot take less than 6 1/2 hours.  With a reaction, it could obviously take longer.  A few weeks ago in Virginia Beach we attended a support group meeting where I spoke with two people for whom it took most of the day.  Then I spoke to a friend from our own support group who breezed right through it - didn't recall that it took 6 1/2 hours.

In addition to infusion time, some amount of time is required to prepare for the infusion.  Since I don't have a port of any kind the nurse had to find a good vein (I have lots) and set up the temporary port.  Then I was given oral Tylenol and Benadryl, followed by an infusion of prednisone (the pre-meds), all to reduce the likelihood of a reaction, and there was a little waiting for the Mayo Clinic pharmacy.  When the Darzalex infusion arrived, the drug itself (I think three 400-mg vials) was already mixed with a liter of saline, that bag covered by a semi-transparent shroud intended to keep light away from the mix.

At first my "vitals" were taken every 15 minutes, really just blood pressure and heart rate I think, not even temperature or pulse oxygen, but of course they always asked how I felt.  The 15 minute intervals became 30 as time went by, I had no infusion reaction at all, and I suppose the Darzalex itself took about 7 hours total, maybe a little more because the infusion pump stopped and beeped every time they needed to take vitals.  Added to other delays I was in the chair for almost nine hours.  I dozed a little (the Benadryl) but mostly talked to my sweeties and amused myself with the computer.  Easily the most physically relaxing day I've had in years.

My advice: Go with the flow, get an early morning appointment with nothing else on the day's calendar, and plan on a nice, long, but easy day. Bring stuff to do - computer, smartphone, Kindle, books, magazines, friends to talk with, even watch TV or sleep.  My sweeties brought me food now and then during the day, and even a Starbucks.

Mayo Clinic knows how to do infusions!  The nurse who started me out (Andy) very carefully wrote out the start times for each medication on a whiteboard, and a chart of the specific settings for the infusion pump for each hour of the Darzalex infusion.  All of the nurses referred back to that chart as the day went on and shifts changed.  I wish I had taken a picture of the whiteboard.

Unfortunately for us Mayo isn't next door, it's about a 200-mile round trip, but we have an infusion center within a short walk of our house.  Darzalex infusions are weekly for the first eight weeks, then every other week for a while, and although I have appointments for three more infusions at Mayo I also have an appointment with a local provider to see if the infusions can be moved next door.  Mayo would, of course, continue to be my primary source for overall management of the myeloma.

We know that after seven wonderful years on Pomalyst my myeloma finally progressed, as we knew that it would eventually. A PET/CT revealed a hot spot appearing in one vertebra.  According to my doctors, that is probably a sub-clone of the original myeloma, somewhat immune to Pomalyst.  I was then taking Pomalyst as a single agent, and according to one doctor it's possible that the new clone could have been managed for a while by the simple addition of DEX to the regimen, but now after the failed studies it appears that we need both DEX and a third drug to manage the clone or clones.  Dr WG suggested that if this regimen gets my numbers down nicely, and the hot spots disappear, then perhaps Darzalex could be my next seven-year treatment.  Wouldn't that be something?  82 years old, getting monthly infusions, and maybe even still running a marathon now and then.  Dream big!

Tuesday, April 5, 2016

Better DEX Experience

Three weeks ago I whined mightily about taking DEX.  The worst problem was acid reflux the second night after taking it, but there were other issues too.  I'm happy to say that I have had better experiences since then.

Acid reflux:

Lots of good people offered great suggestions regarding the heartburn (acid reflux).  This formula has worked for three weeks in a row.  After the worst heartburn of my life, now zero heartburn:
  • I take the 40 mg of DEX with food at the Sunday evening meal, and the reflux happens (happened) Monday night.
  • No food at all in the last few hours before going to bed Monday night.  I figure two hours may be the minimum, although I have not tried less than three.
  • No beer or other alcohol at all Monday.
  • No chocolate after noon Monday.
  • No coffee after noon Monday.
  • Take a Zantac with dinner Monday night, but no other time.
  • Take calcium citrate 250 mg twice daily every day.  No other calcium works the same.
  • Drink some extra water if there is even a hint of a symptom after dinner Monday night.
Other:
        
The sleeplessness on Monday and Tuesday nights has improved too - I guess my rickety old body is getting accustomed to the DEX once again.  I'm still hyper on Monday and grumpy on Tuesday and Wednesday, but getting better.
     
It's not like I haven't taken this stuff before!  My Mayo doc is hoping to get me down to 20 mg and reduce it from there if the new regimen does the trick,  More about the new regimen in the next post.  

Thursday, March 17, 2016

Whining About DEX

Dexamethasone (DEX) is a part of many myeloma regimens - my doctor says "everything works better with DEX."  I've taken it before, and not liked it then, but this most recent experience is something new indeed.

Sunday night I took the "usual" 40 mg dose, ten little 4 mg tablets, at bedtime.  In the past this has worked OK for me because the DEX doesn't interfere with my sleep that first night.  And it didn't interfere Sunday night, I slept well.  Monday, then, was "DEX day," full of energy, as if 200% caffeinated all day.  I got a lot done, including an energetic 4-mile walk/run.

Trouble started at bedtime Monday night.  Never in my life have I had such heartburn - was that from the DEX?  I suppose so, I think so.  I slept very little that night, awake because of the DEX and forced to sit up for part of the night to ease the acid reflux.  In the morning my esophagus was still inflamed, warm coffee causing pain when it reached the bottom.

Tuesday became another DEX day, my body once again on full alert.  I tried for a much needed nap, but no dice.  Again I got a lot done, rounding up materials for a wood duck house that we are building for our back yard, and preparing for our upcoming 93rd marathon, but I felt like I was running on empty.  Tuesday night I did finally fall asleep after a couple of restless hours, but awoke again at 4:00 am only to lie there until rising.

Wednesday was strange.  I felt like someone else, I don't know who.  Not sick, but not OK.  I did finally get an afternoon nap, and Wednesday night I was able to sleep, waking Thursday morning mostly recovered.

I really don't want to have that experience again, especially the acid reflux, which might actually have caused permanent injury at the bottom of the esophagus.  I know that the doctors believe that the 40 mg dose of DEX is more effective than a lower dose, but I wonder if it is worth the unpleasantness and, indeed, the risk.  I can try to manage the acid reflux by finishing the supper meal at least two hours before bedtime, and skipping my usual one beer and all chocolate.  I will take calcium citrate morning and evening, and perhaps eventually take a prescription remedy if necessary - I don't have such a prescription yet and don't know if there really is an effective one.

The current plan is to take the full 40 mg once more this coming Sunday and see how it goes.  Sigh.

In other news I am now taking Pomalyst once again, 2 mg daily.  This can suppress neutrophils, but a CBC on Wednesday showed them at 5.2 k/uL, which is about twice what my neutrophils usually run.  I don't know why - does DEX help with neutrophils?  A quick Google search suggests that it may indeed help, possibly one of the reasons that "everything works better with DEX."  Oh well, let's try one more week.

Thursday, March 10, 2016

The Study Is Over

For me.  Sad to say, because this treatment was the easiest I've ever been on, and it has worked well for other people (with other blood cancers).  Yesterday's blood tests and PET/CT show progression of the myeloma, however, and after 13 weeks (a quarter of a year!) it certainly should be heading the other way.

According to Dr WG the PET/CT does not show any new lesions in my bones, which probably means that the study treatment was doing some good.  However, it does show increased activity in the existing lesions.  For a while we wondered if that increasing activity was "flare," caused by my own immune system attacking the myeloma.  There may indeed be some flare, but we have reached the point where it doesn't matter, because the myeloma is clearly not backing down.

To underscore that point, the blood tests also show progression in the last three weeks.  M-spike is level at 1.5 g/dL, but IgG increased by 9% from 1600 to 1740 mg/dL, the seventh increase in a row, except for one sharp bump up and back down when I was quite sick with the stomach flu. Furthermore my Lambda Light Chains almost doubled from three weeks ago, from 4.46 to 8.60 mg/dL, while Kappa chains went down.  I'm not sure what this means but no one believes that it can be good.

I gave the study a good try, but it's over.  Sigh.  So what's next?

Happily, I do have a little Pomalyst left, not expired yet, so I can start taking that immediately, with the blessing of Dr WG.  I'll also take 20 mg of dexamethasone (DEX) tonight, and then 40 mg Monday night, no doubt the first of many Monday nights.  I like to take the weekly DEX on Monday so that its side effects are mostly gone by the weekend, which is when I run marathons. Also, I like to take it at bedtime because, surprisingly, it interferes with my sleep the least that way.

Dr WG is still considering a second drug to take with the Pomalyst and DEX, or perhaps eventually with Revlimid and DEX.  Daratumumab (Darzalex) is a great choice, though I'm certainly no fan of Janssen Biotech, the company that is "commercializing" it, because of past criminal activity.  Elotuzumab (Empliciti) is a possibility as well.  Pembrolizumab (Keytruda) has also shown promise in early trials with Pomalyst or Revlimid and DEX.  It is FDA approved for melanoma (it saved President Carter), but is not yet approved for myeloma and thus may present an insurance issue.  All of those are monoclonal antibodies, not unlike the study drugs that I have been taking, but with demonstrated efficacy when combined with an IMiD like Pomalyst or Revlimid.

Another choice is an IMiD with a proteasome inhibitor and DEX - the standard of care for newly-diagnosed patients.  Unfortunately, though, I have already tried one proteasome inhibitor, which did nothing for the myeloma but did cause peripheral neuropathy.  Proteasome inhibitors work miracles for most patients, but may not be in my future.  The one possibility is carfilzomib (Kyprolis), as it may be the least apt to cause side effects.

It's great to have choices! I'll post as soon as a plan is finalized.

Thursday, March 3, 2016

No More DEX

For over a week I had to take a little dexamethasone (DEX) now and then to manage a severe pain in my back and lower right abdomen.  I don't know for sure why the DEX fixed the pain when Vicodin didn't, but it was magic.  DEX is a powerful anti-inflammatory, so my theory is that something was inflamed and pressing on the spinal cord, and the DEX reduced that inflammation.

If that's what happened, I don't know why the inflammation showed up, or why it went away.  I haven't taken any DEX for three full days now, and I'm glad to be off DEX because it can have serious side effects from long term use.  I may need to take it as part of a future treatment protocol, but not for the current protocol.

I have another appointment at Mayo next week, and a PET scan is scheduled to try to get more information about the possible cause of the inflammation.

Friday, February 26, 2016

DEX is OK

My doctors have now told me that a little DEX to manage the pain is OK on the current medication study.  DEX can also have a treatment benefit, in addition to pain relief, and I suspect that the study authors are at least slightly interested in that result too.  My daily medication log will now include the DEX, if any, and the dosage.

It's working quite well - one 4-mg tab of DEX seems to last at least 30 hours before the pain returns.  I've had three tabs so far, with a fourth due today if needed.

My main doctor at Mayo would also like me to come there (180 mile round trip) for another scan.  In emailed messages he suggested PET/CT, but I then suggested PET/MRI if available (it's brand new), because it might provide more information about my spinal issues with less radiation exposure.  I haven't heard back, but he may be checking on it.  I'll do what he recommends.

I also asked for a prescription of smaller DEX tablets, perhaps 2 mg instead of 4, to see if I can get almost the same benefit with half the side effects.  Maybe.

The St Croix Valley Runners are getting together for our monthly "happy hour" party at a local brew pub tonight, and I'm definitely looking forward to it.  I'll bring gluten-free chips & dip.

Wednesday, February 24, 2016

Adventure In Pain

Lots has happened since my last post, and this is a record of those events.  I have to write it somewhere.  It's interesting to me, part of the journey, but you'll be the judge.  It's mostly whining.

Background for the reader:  Last Wednesday I had an infusion of a study drug and an infusion of Zometa, and also began a week of oral Valtrex in case my back pain might be the prodrome for shingles.  By Friday the pain in my back and abdomen was much more pronounced, continuing into Saturday.  I posted about that here.

Saturday, February 20, 2016:

I have a new respect for people who are obliged to tolerate serious, chronic pain.  It consumes me, clouds my mind, makes focus difficult, and I want to lie down and sleep until it goes away.  But sleep is not always possible either.  I can't eat, because nothing sounds good and because it would probably come up again anyway.  To other people I must be a total dud, a zombie, no personality at all except as a whiner.

Saturday evening my sweetie took me to the emergency room at a small but very competent local hospital.  Since the pain seemed to be located in the right rear quadrant of my lower abdomen, they did a CT scan there.  They found nothing, sending me home with a prescription for Vicodin (not fillable at that time of Saturday night without a long drive).  Factoid: Vicodin prescriptions can't be faxed in - you have to bring a paper copy to the pharmacy with the doctor's actual signature on the actual paper.

Sunday, Feb 21:

I had a bad night with little sleep, but in the morning my right eye was acting strange.  The eyelid drooped, it hurt a little to look to the side, or up, or down, and at first I couldn't get it to point where the left was pointing.  I was concerned that this might be another symptom of the onset of shingles, this time in the eye, so at 8:00 am we were in Urgent Care.  We saw a very competent NP who basically instructed me to contact the on-call eye doctor and get my butt over there.

I did, and she was wonderful, opening her office for me on Sunday.  After almost an hour and a half of tests she concluded that shingles was a very unlikely cause of my symptoms, though she couldn't actually diagnose the cause.  If symptoms worsened she wanted me to come in the next day, a normal work day.  If not, then Tuesday to see another eye doctor.

The abdominal pain had not gone away, of course, so she tolerated my mopey zombieness quite well I thought.  That pain made for another miserable day and night, with little sleep of any quality.  Neither naproxen nor acetaminophen helped much, though I didn't try them together.  I stopped the Valtrex, just in case it was part of the cause.  No help.

Monday, Feb 22:

The right eye seemed a little better in the morning, not normal, but no need for another urgent eye-doc visit.

By 7:00 am I was calling for an appointment with my regular primary doc, who is a good one.  His schedule was full until Thursday, so I got an appointment with a different doc who is an internist but has experience with myeloma patients.  Then I went back to the hospital for an ultrasound of the lower right abdomen.  Like the CT scan Saturday night, the ultrasound found no problems.

The doc was lucky draw!  He quickly sorted out the options, cut through the crap, and diagnosed the pain as (1) A reaction to the Zometa infusion, or (2) Pressure on the spinal cord from the myeloma and associated inflammation.  If he was right the pain wasn't in the lower abdomen at all, it just felt like it.  Like the ER doctor, he recommended the Vicodin, especially at night.  "You can't heal if you can't sleep."

I went home and thought about inflammation.  What is the most powerful anti-inflammatory I have on hand?  Dexamethasone (DEX) - everyone knows that.  Willing to try almost anything, but not ready for the Vicodin until evening, I took one tiny 4 mg DEX tablet.  That's not much DEX - in myeloma treatments a normal dose of DEX is ten of those tablets, totaling 40 mg, once per week.  It didn't help right away, but I went to bed about 2:00 pm and was able to get to sleep.

I awoke three hours later and the pain was gone.  All of it.  That tiny tablet of DEX was MAGIC!  I had a wonderful evening, ate well, had a beer, enjoyed some TV with my sweeties, then slept like a log.  As life should be.

Tuesday, Feb 23:

Fasting blood glucose was 114 and pulse oxygen 98 on waking.  I sometimes measure glucose when on DEX, and this was a different dose.  114 is fine.

The right eye seemed still better, though not best yet.  I saw another ophthalmologist, who concluded that the cause was most likely a temporary loss of blood flow to a nerve bundle that serves the eyelid and the muscles which steer that eye.  The eye itself is fine, not involved.  This happens, he says, and in my case the nerves luckily seem to be recovering, and might actually recover fully.  What caused the loss of blood flow?  He wouldn't opine, but there sure is lots going on.  I have a followup appointment months from now.

The back and abdominal pains were still gone, and I felt wonderful, full of pep.  We went to the YMCA where I walked three miles at a pretty good pace of about 14 minutes per mile.  This was a very good day!

Toward afternoon the pain began to return in my back.  By bedtime it felt as though a blunt object like a butter knife was pressed hard against my back along the right side of my spine.  Though the abdominal pain did not return, this sharper pain also became a 7 of 10 and made sleep difficult.  I kept trying to find a comfortable position, but position didn't much matter.  At midnight I took a Vicodin, my first, only to find that it had no perceivable benefit.  At all.  The pain remained.  The bottle says it's OK to take two, but if one didn't help at all then I supposed that two would only double the side effects without much benefit.

Therefore, at 2:00 am I gave up on the Vicodin and took another 4 mg tablet of DEX.  Three hours later I felt much better and slept soundly.  Better to treat the inflammation than try to mask the pain, I guess.

Wednesday, Feb 24 (today):

The right eye is better yet.  Waking blood glucose on DEX was 116.

The back pain isn't entirely gone this time, maybe a 1 or 2 of 10, as it was for a few weeks prior to last Wednesday's infusions.  Why wasn't the DEX as magical this time?  Did the inflammation get a little worse in two days, or have my body and the inflammation become accustomed to the DEX?  Anyway I sit down carefully right now, instead of plopping into my chair.

What's next?

I may be off the study - I don't know if two little doses of DEX are permissible, especially when it seems that more doses may be necessary.

I'm not sure that I care, though.  In my opinion the myeloma markers should have turned the corner and headed back down within these eleven weeks of the study.  I have calls in to both of my Mayo doctors to discuss this, and to discuss the future regimen if I go off the study.  They are good at calling back - I'm sure I will hear from someone by tonight.  I'll report back to you.

If you have actually read all of this, you have gone well beyond the call of duty.  You are my hero!  If you didn't read all of it, I suspect you are in very good company :-)

Be well, be strong.

Saturday, February 20, 2016

Lots More Whining

Just can't get enough of it!

Last Wednesday's visit to Mayo Clinic marked the end of the every-week 200-mile round trips, but the results didn't shed much light on my medical condition.  Is the "flare" in my vertebrae due to the myeloma itself, or is it inflammation caused by my immune system attacking the myeloma?  We're hoping for the latter, of course, and sticking with the current medication study, but this does require more than a little faith.

Here is the whining:  

Last night I was quite uncomfortable for much of the night.  The neuropathic pain on the right side of my back became much worse, perhaps 6 or 7 out of 10, and was accompanied by an abdominal ache that almost felt like it was kidney-related.  I was a little nauseous.  

Unable to sleep, I took a naproxen (Aleve) liquid gel, sat at my computer for an hour, and then was able to sleep.  Today the naproxen has worn off, and the pain remains.

So what could it be?
  • Last Wednesday I had my very first infusion of zoledronic acid (Zometa), which is used to strengthen the bones of myeloma patients.  The prescribing doctor informed me that I might feel "achy" for a few days, especially because this was my first infusion. Indeed, a quick review of the literature suggests that it can cause all of the symptoms that I am experiencing.  If so, those symptoms should abate within a few days after the infusion.
  • Also last Wednesday I started a prescription of valacyclovir (Valtrex), because the doctor thought that my neuropathic back pain might possibly signal the onset of shingles, and wanted to head it off if possible.  One gram, three times daily.  A review of the literature suggests that valacyclovir can cause all of the symptoms that I am experiencing, including actual (usually reversible) kidney failure, especially in older patients.
  • Myeloma or inflammation.  I am making this up, but I believe that if the myeloma is near the spinal nerve canal, it could push on those nerves and cause neuropathy.  Inflammation from the myeloma treatment could do the same.
  • What if the doc is right, and I am feeling the prodrome of shingles (herpes zoster)?  It can cause all of my current symptoms too, including the gut ache.  It isn't curable, but it is treatable and the valacyclovir is a recommended treatment..
Whatever the pain is, there isn't much more that I can do unless I decide that it is caused by the myeloma.  Then I can quit the study and go on a tested regimen, like daratumumab (Darzalex) with dexamethasone, combined with Pomalyst or Revlimid.  

Review of Test Results:

Today I reviewed my test results from the last 10 months, to try to help with that decision.  Here is a busy little table of the results.  In that table, the current study is Study # 3.  Bottom lines:
  • IgG has been the best marker of my tumor burden for years, and during the 12 weeks of this study has crawled up 10%, from 1450 to 1600 mg/dL.  This is not a big increase, but I certainly wish it were down.
  • Similarly M-spike, another good marker, has increased slightly from 1.4 to 1.5 g/dL.
  • Lambda light chains have gone up from 2.89 to 4.46 mg/dL.  I don't know if this is significant, but I'm sure that down would be better than up.
  • PET/CT and MRI show a significant increase in the brightness and size of the hot spots in T5, T9, and T11, but no additional hot spots and no apparent bone damage.  Is it myeloma, or is it just flare?
In a seven-week period last October and November IgG jumped 15%, from 1260 to 1450 mg/dL, so the recent rise of just 10% in 12 weeks suggests that the study drugs might at least be doing some good.  Further, though I didn't include it in the table, calcium was occasionally above the reference range prior to this study, but has been reliably below it in recent weeks.  This suggests that the study drugs might, at least, be preventing any serious bone damage.

I keep hoping that there is a corner, and we will turn that corner soon, to be evidenced by a downturn in IgG and M-spike.  However, I suppose the chance of that is less for every week that we don't turn the corner.  I am aware that some other myeloma patients on this study have left it because their myeloma progressed, so that could happen to me as well.

I'll wait a few more days for my back to get better.