Friday, August 19, 2016

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!

Saturday, June 25, 2016

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.


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.

Sunday, June 12, 2016

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."


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

Sunday, May 29, 2016

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.

Tuesday, May 10, 2016

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.

Tuesday, May 3, 2016

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!

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.
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.