Doing Well

Still doing pretty well. I'm currently taking Darzalex monthly, Pomalyst 2 mg daily (28 days of 28), and dexamethasone (Dex) 8 mg weekly. Monthly blood tests don't normally show any cause for concern, and I feel pretty good. Except lately calcium has been a bit high, and the doctors and I are paying some attention to that. Maybe a PET scan is due, or even a bone marrow biopsy, since my myeloma seems to have become "nonsecretory" (it may not secrete detectable immunoglobulin fragments). Ugh.

I like a beer in the evening, but I skip that on Dex days and on the two days afterward. On infusion day I don't exercise a lot, but every other day we three go for a nice, fast walk, at least 2 miles and often 4 miles. As winter approaches we're planning to make a trip to the Mall of America at least one day per week and a nearer mall another day each week. Both malls allow walkers in the mornings before the stores open, so it's warm and safe. Otherwise we do have local options including our own treadmill.

In addition, my computer is programmed to remind me to walk some stairs every hour, and I usually do that. Three flights down and back up is enough to get the heart pumping. Four is better.

Life is filled with medical appointments right now. Monday is a CT scan in preparation for a dental implant; Tuesday is the Darzalex infusion; and Wednesday I meet with a favorite doctor for the Medicare annual wellness visit. Thursday I had an eye refraction, but I've cancelled that because I had one recently enough.

Not Dead Yet

Not even close, doing pretty well actually, though I should post more often. I was diagnosed with myeloma in July, 2003, and according to my math that's well over 16 years ago. My family and I go to two different support groups, and I get celebrated as one of the long-timers. I like that, so very preferable to being dead, I think.

I've been on Pomalyst (Pom) since March of 2008, with the exception of one year when the Pom trial ended. Trials of three different experimental regimens failed me then, but Darzalex became approved and the combo of Darzalex, Pom, and dexamethasone (dex) brought my numbers way back down. Eventually we eased up a bit, gradually dropping the dex altogether and reducing the Pom from every day to 21 days out of 28. That may have been a mistake.

Mayo Clinic Rochester MN

IgG and M-Spike stayed way down for three years, but last spring my shoulder began to hurt and my lambda light chains crept up almost to the top of their range. A PET scan showed a bright, colorful lesion in the right scapula, even though IgG and M-Spike said nothing about it.

The radiation treatments started the very next Monday, 10 daily sessions with breaks only for weekends. When that doctor heard that I was 16 years from diagnosis, he allowed that my myeloma must be "indolent," like a lazy schoolboy. Well OK, but here it was threatening the use of my right arm! Happily, the PET scan after that treatment showed only a very small lesion remaining in the scapula. Doc did good.

I'm back on Pom every day, Darzalex once a month, and dex 12 mg/week. The arm feels great, IgG and M-Spike are fine, and lambda light chains are right in the center where they belong. We'll find out more with another PET scan in March at Mayo Clinic.

Good News Again

Stable:

Since April of 2016 my treatment regimen has been Pomalyst (pomalidomide) and Darzalex (daratumumab), with dexamethasone in the early months.  That combination brought my IgG and M-Spike down to the lowest levels seen since diagnosis 14 years ago.  M-Spike has not been above 0.5 g/dL since August 2016, and it was 0.5 again last Tuesday.  IgG was 536 mg/dL, about where it has been for more than a year.  This is wonderful.

The Darzalex protocol (with Pomalyst) calls for infusions once per week for 8 doses, then every other week for 8 more, and finally once per month "until disease progression."  So far so good.  Darzalex is an infusion that takes several hours, but I get a blood draw, then a visit with the hematologist, and finally the infusion, and I'm still out soon after noon.  Some people bring a book to read - I bring my laptop and it's no problem at all.

I take it easy for the rest of the day, and life is back to normal the next day.  Darzalex is given with some prednisone (or dexamethasone) to reduce the likelihood of an infusion reaction, and I do feel some side effects from that steroid, but none from the Darzalex.  Life is good.  28 Infusions of so far - I wonder what my life would have been like without that potent, innovative new medication.

Pomalyst has been part of my treatment regimen, 2 mg daily, for all but one of the last nine years.  For the past two months my doc and I have tried cutting that to 2 mg for 21 of each 28 days, with no discernible increase in M-Spike or IgG.  Perhaps we'll reduce it more, we'll see.

PET Scan:

This was encouraging too.  "Essentially complete metabolic response of lytic bone myelomatous lesions to therapy. No new FDG avid lesions."  In other words, the old myeloma hot spots are gone and there are no new ones.  Three other findings were worthy of note:

1. Some inflammation at the bottom of the esophagus.  This matches my own symptoms of occasional acid reflux.  Something to deal with.
2. Stable, chronic thyroiditis.  Yup.  Dealing with it.
3. "Reactive FDG activity at the origin of the right hamstrings."   No kidding!  I've been battling this running injury all summer, and my sports doctor recently used ultrasound imaging to diagnose it.  He'll be happy to hear that the PET scan confirms his diagnosis.  Cool!  I've requested a disc with the actual PET images (always do), and can't wait to see it myself.

Transplant:

In 14 years with myeloma I have not had a transplant, because for all of that time the medications have kept my myeloma stable.  I asked the doc if there was any reason to think about collecting stem cells for an autologous SCT now, and he thought not.  I'm already 76 and currently on a good regimen, with several new therapies to try when the current one fails, and with more therapies in the FDA-approval pipeline.  By the time those options are exhausted, I'll hopefully be too old for any transplant doctor to consider me a good candidate.  So now my goal is to become the myelomiac to live the longest without a transplant.  Well, somebody's got to do it.

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.

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.

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.

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!