Friday, February 26, 2016


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.

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.