PET Scan Looks Good

Before I started the current regimen, a PET scan last April 9 displayed five different lytic lesions, three of them in the spine.  Last Wednesday's PET scan showed that all five lesions are significantly decreased, and most are gone.  One isn't even mentioned.

This is excellent news.  We knew that my M-Spike and IgG were down to about 40% of their April values, but that doesn't guarantee freedom from bone damage.  With these PET results, we can be pretty sure that no damage is occurring.  As we looked at the PET images together, Dr WG showed me a small chunk missing from a vertebra - looked like about BB size - damage that did occur before this regimen, but probably not bad enough to put the vertebra at risk of breaking.

So what is this potent regimen?  Please note: I am not a doctor.  This is working for me, but might not for you.  I am taking Pomalyst (pomalidomide) orally, 2 mg daily, 28 days of 28, and receiving infusions of Darzalex (daratumumab).  At first I received the Darzalex weekly, then every other week, and the last three have been four weeks apart.  According to the Darzalex prescribing document, these monthly infusions continue "until disease progression."

PET Radiology Report

I'm all for that.  Notice, though, the presumption of disease progression,  Myeloma always figures out a way.  So now that the myeloma is stable, the hope is that the period of stability will last a long time.  Happily, neither medication brings serious side effects with it.

With the Pomalyst and darzalex I am also taking dexamethasone (DEX) 12 mg on the weeks with no Darzalex infusion.  I asked Dr WG if I could stop the DEX, but he said that he prefers to ramp it down slowly.  He voiced the scenario that I have feared from the outset - a broken vertebra would most likely put an end to my running lifestyle.  As he suggests, I will happily (or grumpily) take 8 mg once weekly for the next month at least, before reducing it further.  DEX is no fun, but 8 is better than 12.

Overall the news is good, and life is great.  Before long we'll be off to Philly, to run the 100th marathon with myeloma.

How to Cure a Cold

They say there's no cure.  And "they" may be right, but there are a lot of things that we can do.

Heard from doctors fairly recently (but note: I am not a doctor):

• Gargle with warm salt water to sooth and treat the throat.
• Use a neti pot (nasal irrigation) to clear sinuses.
• Take Claritin (loratadine) and Claritin-D (loratadine with pseudoephedrine) to reduce symptoms.

Other common-sense and folk treatments:

• Keep extra warm, particularly the chest.  Especially avoid getting chilled.
• Get lots of sleep - morning and afternoon naps if possible.  In my opinion this is the best thing we can do.
• Chicken soup with lots of salt and pepper.  Maybe other hot, salty, peppery soups with onion, sage, and thyme.
• Zinc lozenges.
• Vitamin C.  We mix Vitamin C powder in some organic pomegranate juice.  Yum.
• Aromatic (menthol, camphor, ...) rub on the chest for extra heat and a nice smell.  I clip a towel around my neck too.
• Hydrate plenty.  Alas, alcohol probably doesn't count.
• "Feed a cold (and starve a fever)."  To keep the immune system strong, but junk food won't help.
• A key point:  Don't let up until the symptoms are all gone.  A chest cold will take advantage of a chill to start all over in the sinuses, or vice-versa.

The old joke - Do all of these things and the cold might be gone in as little as a week.  Otherwise it might take as long as seven days.

I have a cold and I'm only on day 5.  As we say in Minnesota, Uff-Da. 

02

All Good News

Friday, August 19, 2016:

Wednesday I brought a Mayo Clinic blood draw "kit" to the local clinic, where they drew the blood and shipped it overnight back to Mayo.  Last evening the results showed up on Mayo's patient portal, and I'm happy!

Since early April my treatment regimen has been 2 mg of Pomalyst every day, with infusions of Darzalex every week and then every other week, currently with 12 mg of dexamethasone (DEX) on the weeks between Darzalex infusions.  During that time my IgG and M-Spike dropped about 20% per month until a month ago, then leveled off.

Wednesday's results confirmed that IgG and M-Spike are stable, at least for now.  IgG was 515 mg/dL two months ago, 544 last month, and 506 on Wednesday.  M-Spike followed a similar pattern and was 0.5 g/dL on wednesday.  These numbers are as low as they have ever been since my diagnosis 13 years ago, and just a third of their values of last April.  The chemo regimen is doing a great job for me.

Where to from here?  Could we cut the Pomalyst or the DEX?  It's nice to think about, but mostly I'm just happy to be stable for now and content to wait another month.  I suppose another PET scan is indicated, to be sure that the lesions in my vertebrae have faded back (as I think they have), but I can wait for that too.  I haven't heard from Dr WG at Mayo yet - perhaps he will have a different idea.

I also had a heart disease scare in the last marathon, but a recent stress test was normal, actually better than normal, so I think the angina-like symptoms were caused by acid reflux.  Also, because my most recent colonoscopy was ten years in the past, the doc ordered one of those and that too was negative.  I feel thoroughly checked out and ready to run a few more marathons!

Bright Sun and Clouds

June 22, 2016

Bright Sun:

After the 10th Darzalex infusion, with daily 2 mg Pomalyst and weekly dexamethasone (DEX), IgG is down once again, from 644 to 515 mg/dL, another drop of 20%.  M-spike is down too, by a similar ratio, from 0.6 to 0.5 g/dL.  Both myeloma markers are now at a level never seen in my 13 years

since diagnosis, and apparently continuing down.  It probably means that the actual count of myeloma cells in my bones is declining by roughly the same ratio, a very hopeful thought.

Clouds:

HEMOGLOBIN: For the first time in years my hemoglobin is down a little, at 13.2 g/dL, where it is normally over 14 g/dL.  This is not a problem in itself yet, because 13.2 is a very livable number.  Indeed, many of my friends with myeloma would be tickled to have that much hemoglobin.  It's only a cloud because this is the third month in a row that hemoglobin has declined.  

The reason for the decline is a matching decline in my red cell count, now 3.8 trillion/L, where the bottom of the reference range is 4.32 trillion/L.  According to my Doctor WG, Darzalex can bind to the CD38 protein on red blood cells and thereby reduce their numbers.  In fact, according to the Darzalex Prescribing Information, a study showed that 45% of all patients experienced some level of anemia.  Dr WG didn't seem too concerned, perhaps because I had run a marathon three days before without serious fatigue.  We'll keep watching it - hemoglobin is measured before every Darzalex infusion, now every two weeks.

CHEST SYMPTOM: In the Vancouver USA Marathon last Sunday, three times along the way, I briefly felt a heaviness in the middle of my chest, accompanied by an ache going down both arms.  After further discussion, Dr WG said that I was recounting a classic description of angina, a symptom of heart disease.  The symptom appeared early and then disappeared in the latter half of the race, so I don't believe there is imminent danger even if it was angina.

I have posted about this symptom before, concluding then that it was reflux (heartburn) and not angina.  I have an appointment with my primary doctor in a few days, and I'll post as I learn more.

Review of ICER Report on Treatment Options for Multiple Myeloma

Who is ICER?

ICER is the Institute for Clinical and Economic Review.  As far as I can tell, it is funded primarily by insurance companies and by nonprofit organizations who, in turn, are funded by insurance companies.  They claim some funding by the federal government as well.  Other members include pharmaceutical companies who apparently participate in order to have some voice in ICER's proceedings.  A quick Google search shows that the title of many of ICER's documents is "Building Trust through Rationing," which I believe is their mantra and suggests that rationing health care is their real purpose.

ICER deals in statistics, not medicine, and a primary goal is to control costs.  I assume that this is why they don't want participation by patients.  They have been working on a report for multiple myeloma, and we myelomiacs have been concerned that they would produce a one-size-fits-all treatment algorithm that doctors might be expected to follow and insurers might try to enforce.

Garbage In, Garbage Out

ICER issued their final report on Myeloma on June 9, 2016, attempting to grade different myeloma treatments to provide comparative medical and cost values.  In my opinion this report is ridiculous on its face, saved only by one of its final recommendations.  ICER claims to have found over a thousand potentially relevant literature references to myeloma treatment, considered 38 worth reading, and exactly six Phase III studies worth analyzing to form their conclusions.

Thus they chose to ignore all Phase I and Phase II studies, which provide by far the largest part (I'd guess 90%?) of the current, up-to-date information that the FDA uses for myeloma drug approval and that doctors actually use in their day-to-day care of myeloma patients.  For this reason, ICER's entire analysis is fatally flawed.  As we say in the computer industry: "Garbage in, garbage out."

Blinders

As just one example of this blinders approach, the report ignores an old but widely-used myeloma treatment called cyclophosphamide (Cytoxan), which is frequently combined with dexamethasone (DEX) and either bortezomib (Velcade) or lenalidomide (Revlimid).  Indeed, many patients will recognize cyclophosphamide with bortezomib and DEX as the CyBorD regimen.  Because cyclophosphamide is relatively low in cost, it certainly should have been included in any economic analysis, but it appears nowhere except peripherally in the addenda.

ICER's peculiarly superficial analysis also minimizes or omits many other commonly-used and highly-effective regimens.  Worst of all, it gives especially poor grades to the treatments that are newest and possibly the most effective, such as pomalidomide (Pomalyst) and daratumumab (Darzalex).

Saved by the disclaimer:

One recommendation near the bottom of the final report and in the shorter Report-at-a-Glance, saves the report from total disrepute.  This appears under the heading "Insurers:"

Multiple myeloma is a condition in which many patients will cycle through most or all available treatments, and there is substantial variation in drug mechanisms of action and in the personal patient values that guide consideration of the trade-offs between extended survival and different side effect profiles. Given this background, and in the absence of better evidence, payers should not consider step therapy or “fail first” coverage policies for myeloma treatments.

Amen.  This statement seems to have two important implications:

1. ICER recognizes that their report has no value in guiding treatment for any particular patient (i.e. it turns out that we wasted our time producing this report); and
2. The PATIENT (the payer) is responsible for choosing an insurer or a plan which does not demand step therapy or "fail-first."

Let that be a lesson to us patients!  Maybe the best advice I've seen today - if you have a choice of insurers, choose very carefully.

My bottom line opinions:

• A doctor attempting to use the results of this ICER report as the primary guide for treating a patient would be committing medical malpractice, and if so
• It follows that an insurance company or plan that denied coverage based upon this report would be demonstrating a singular contempt for their own client, the policyholder.  

Whether you agree or disagree, or have a factual correction, you are invited to comment.  - Don

Yellow Roses

Wednesday, May 25, 2016:

My sweeties and I bought a nice bouquet of yellow roses to celebrate my latest treatment results.  In the last four weeks on Pomalyst (pomalidomide)(POM) and Darzalex (daratumumab)(DARA) my IgG has dropped 20% from 807 to 644 mg/dL, and M-spike 25% from 0.8 to 0.6 g/dL.  These numbers are the lowest that I have seen in my 13 years with myeloma.

Not all of that progress comes in the last four weeks, of course.  Here is a chronology of treatments and results since January, 2016:

• Wed Feb 17 First Zometa infusion, serious reaction to something, likely the Zometa (not relevant to these results).  Still on two-MAB trial. 
• Wed Mar 9 Last trial-drug infusion, then next day PET shows myeloma progression, stop trial and start POM immediately, 2 mg daily & 40 mg dexamethasone (DEX) weekly. 
• Thu Mar 24 Myeloma markers tested after 2 weeks on POM/DEX & trial drug, which has a half life of about four weeks.  Numbers down, see chart. 
• Tue Apr 05 After 4 weeks on POM/DEX & trial drug, M-spike down but can't continue trial drug, start DARA next day. 
• Mon Apr 25 After 3 weeks of POM/DEX & DARA plus fading trial drug, markers down significantly. 
• Wed May 25 After 7 weeks of POM/DEX & DARA, IgG and M-spike down to all-time lows.

Currently all of the immunoglobulins that we measure, IgG, IgA, and IgM, are below the bottom of their respective reference ranges and lower than I have ever seen any of them.  Implications?  For sure, my immune system is weaker than normal, but I don't know if it is actually weaker than it was before the POM/DARA regimen began.  I wish that IgA and IgM weren't so low, but perhaps that is the price to be paid for now, because the myeloma tumor burden has been reduced significantly - has to be.

That's the very good part.  I try to visualize the inside of my bones, dark red tubes with those little Y-shaped IgG Kappa immunoglobulins floating around hunting for the errant plasma cells and taking them out one by one.  Yee-ha!  Take that.

Somehow the POM plays an important part in this scenario too.  I haven't figured out how to visualize that, but for now it's enough to imagine that the POM weakens the cancer cells by reducing their fuel supply, or makes them easier to find, or recruits other parts of the immune system to help,
or whatever it is that POM does so well.

What's next?  One more weekly infusion of DARA, and then, as long as the regimen continues to work, every two weeks until September, and every four weeks thereafter "until disease progression," according to the Darzalex prescribing guide.  The worst-case result would be progression of the disease within weeks, and the best result would be a complete response, where immunoglobulin levels actually return to normal and the myeloma cannot be detected except by extraordinary measurement methods.  The most likely result is in between.  Time will tell, and patience is demanded even if patience is in short supply.

Technical thoughts:

For myeloma geeks: Darzalex is a monoclonal antibody which attacks the myeloma cells directly, just as my own antibodies and other immune defenses can attack them, but more effectively.  It is an immunoglobulin of type IgG Kappa, whereas my monoclonal myeloma cells are type IgG Lambda.  How do the measurements of IgG and M-spike distinguish between these two monoclonal antibodies, when I had received an infusion of Darzalex just the day before the test?  In each infusion I receive a 1200-mg dose of monoclonal antibodies.  When that is diluted by about 5 liters (50 dL) of blood (typical for a human body), it comes to 1200/50 = 24 mg/dL, which is a small value compared with the 644 mg/dL of my own (good and bad) IgG.  Check my math please.

However, since the Darzalex has an estimated half life of 18 days and I am getting weekly infusions, my blood contains more than just the most-recent dose, so maybe the correct amount is two or three times as high, perhaps 50 to 75 mg/dL.  That's a guess - the actual math is well above my pay grade.  Even so, the concentration of treatment antibodies is only about 10% of the reported value of IgG, 644 mg/dL.  Dr WG suggested that the technician who reads the M-spike could separate the myeloma from the treatment, but I don't know if that works for the quantitative measurement of IgG.  More to learn.

Personal thoughts:

Ms Wood Duck on our patio

Two grandchildren are visiting this weekend.  One is learning about birds, and watched a mother wood duck go into our new wood duck house to lay an egg.  The other is sitting in Grandma's lap, helping her read books to him, or getting help from Grandpa's in solving puzzles.  Precious moments all around.  When I was diagnosed the common wisdom was 3 to 5 years and out, but here we are 13 years later enjoying grandchildren who weren't even born then.  I feel so lucky that novel medicines like Pomalyst and Darzalex have kept me alive to get to know them, and for them to know their grandpa.

Pomalyst, Darzalex, and Corticosteroids

Weekly Infusion Number 6:  Blood draw, doctor visit, pre-medications, and Darzalex, about 6 hours total.

I took 20 mg dexamethasone last night, as part of the Pomalyst regimen, and received 100 mg of prednisone IV before the Darzalex, as part of that regimen.

As before no problems, no infusion reactions.  This is getting boring.

Boring is good.  I love boring.

Infusion Number Five

And the Orange County Marathon in California last Sunday, my 95th since diagnosis,  Whooee - still on track for 100 marathons this year.

This was also the third weekly Darzalex infusion at our local hospital.  Arriving at the infusion center at 7:45 am, I left at 2:45 pm, total seven hours.  That includes a blood draw for a CBC and metabolic panel, a visit with the doctor, the pre-medications (Tylenol, Benadryl, and prednisone), and finally the Darzalex itself.

No issues.  In particular, I have never had any kind of infusion reaction from Darzalex.  Apparently that makes me a lucky myelomiac, because the manufacturer's Dosage and Administration instructions suggest that about half of us may have a reaction, most of those occurring in the very first infusion. A reaction doesn't necessarily stop the infusion, but would slow it.  A myelomiac may wish to discuss this with his/her doctor, as I am NOT a doctor, just a patient.

In three more weeks (and three more infusions) I'll make the trip to Mayo Clinic and get updated myeloma test results and an eagerly-anticipated visit with my doctor WG.  Meanwhile, we hope that the spectacular 39% decrease we saw last week from the combination of Pomalyst, Darzalex, and DEX will be the prototype for these upcoming test results and other future results.

There is hope after diagnosis!

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.

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.

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.

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!

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.  

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.

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.

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.

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.

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.

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.

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:

• Facebook page:  https://www.facebook.com/pat.killingsworth
• Popular blog:  http://multiplemyelomablog.com/

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.

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:  http://multiplemyelomablog.com .  The latest information is in the comments after his most recent post titled, significantly, "I'm Not Dead Yet!"

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.

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.