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.

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.

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.

I Had Fun Today

I had a chance today to address employees of Celgene, makers of pomalidomide, the investigational drug that has kept my myeloma stable for more than four years now.  I'm grateful for the drug, and told them so.  They seemed pleased, and I had a lot of fun.

Celgene recently announced that they have submitted pomalidomide to the FDA for approval, see previous post.  I will be delighted when the drug is accessible to even more people.

Celebrating Four Years on Pomalidomide

This month is the fourth anniversary of my start in the pomalidomide study, and today is the end of the 52nd 28-day cycle. The news is pretty good.

Bones: Because calcium has been a little high lately, suggesting a possible bone issue, we did a skeletal survey and a bone density scan today. Quote from bone survey report: "Generalized spotty osteopenia without localized lytic lesions. No change since 3/4/09." That works for me! Although x-ray doesn't always show myeloma lesions, this report means that I probably do not have a bone on the verge of breaking. Furthermore, the bone density measurements were the same as two years ago, within the measurement accuracy of the DEXA system, so my overall bone health is good. That's all good news. I do not take Fosamax, but I do take Vitamin D3 and Vitamin K2 (not Vitamin K).

Cancer markers: IgG dropped significantly, from 1280 to 1100 mg/dL, and M-spike obediently followed, dropping from 1.1 to 1.0 g/dL, where it hasn't been since last September. That's very nice. I doubt it's a trend, but wouldn't that be great? Lambda light chains are up, from 1.99 to 2.80 mg/dL, but kappa chains are up too and anyway I'm not sure that light chains are an important marker in my particular myeloma.

Other: Calcium is still high, at 10.3 mg/dL, but that could be a lingering effect from the marathon last Sunday. Some dehydration happens in a marathon, like it or not, and recovery takes a while. Liver markers are at the top of the reference range, too, but we might attribute that to the marathon as well. Neither is an issue right now. Both the red blood cell count and the white cell count are a bit lower than usual though, and I don't know what to think of that. We'll see what they do next month. Actual counts are shown below.

Doctor L:

• I pointed to a rash on my leg, suggesting that it might be from the Bactrim DS antibiotic that I've been taking, or perhaps it could be from shingles. She said that it could be the Bactrim, which has a reputation for causing rashes, but that it wasn't shingles. I was taking the Bactrim to deal with an infection in my jaw, a bad tooth, but the tooth is getting better after some dental work and I stopped the Bactrim a few days ago. The rash looks a little better already, but not enough yet to know for sure that Bactrim was the cause.
• I asked again how long I can remain on the pomalidomide study, and she confirmed that I can probably take it until my myeloma no longer responds to it. She knows of one myemomiac who was in the first Revlimid study and is still on it after eight years.
• We discussed my sports hernia (abdominal wall strain, athletic pubalgia) and she actually suggested acupuncture. Some of her patients have found great relief from neuropathy through acupuncture, when all else failed. This is about healing, not pain relief, but who knows? I'm actively seeking an acupuncturist - willing to try anything to avoid surgery.

Most-Recent Test Results:

Test		Dec 14		Jan 12		Feb 07		Mar 08		Remarks
M-spike g/dL		1.1		1.2		1.1		1.0		\ Tumor marker
IgG mg/dL		999		1190		1280		1100		/ Tumor marker
Lambda mg/dL		3.15		2.24		1.99		2.80		L Free light chains
Calcium mg/dL		10.3		10.0		10.2		10.3		High
Creatinine mg/dL		1.1		1.0		1.0		1.0		Kidney, OK
HGB g/dL		15.1		15.1		15.2		14.2		Hemoglobin, OK
RBC M/uL		4.17		4.36		4.18		3.86		Red cells, low
WBC K/uL		4.8		4.8		4.5		3.7		White cells, low-norm
ANC K/uL		1.90		2.40		1.70		1.50		Neutrophils, low

Related Links:

My Myeloma		A discussion of my myeloma, not very technical.
My Treatment History		Not technical.
My Test Charts		Graphic displays of several key test results over time.
My Test Result Table		Somewhat technical. Best with a wide browser window.
My Supplement Regimen		With links to where I buy them.

Two lovely volunteers with the three of us after the B&A Trail Marathon last Sunday:

Probably Good News

After 48 cycles on the sweet little pill called pomalidomide, my cancer markers are about the same as last month. IgG is higher than I would like to see it, at 1280 mg/dL, but it didn't jump up again, it actually dropped slightly. M-spike stayed still at 1.1 g/dL. So the cancer still appears to be stable. Dr. LH did mention that stress (3 marathons in 3 weeks?) could contribute to increased IgG, and I know that I have a tooth that is starting to go bad, so those are reasons why IgG might be a little higher than expected.

Lambda light chains dropped a bit, too, while kappa light chains remained the same. I'm not sure that means anything, except it can't be bad.

Calcium has bounced around in recent months, and it's back up again. We discussed doing a skeletal survey, to check for bone lesions, but Dr. LH said that if the calcium is coming from bone lesions, it isn't likely to go down again next month. So we'll hold off for a month and see. She suggested that better hydration might improve the calcium numbers, and I think she's right - I know that I don't drink enough water. I need to figure out some easy way to fit proper hydration into my life so that it happens automatically. Yeah.

I haven't been blogging here much lately, because we three have been on the road a lot, but we're going to the ASH Conference in December and I hope to blog several times while there.

Some Current Test Results:

Test		Aug 25		Sep 22		Oct 19		Nov 17		Remarks
M-spike g/dL		1.1		1.0		1.1		1.1		\ Tumor marker
IgG mg/dL		1150		1020		1310		1280		/ Tumor marker
Lambda mg/dL		2.25		2.49		2.75		2.12		L Free light chains
Calcium mg/dL		10.5		10.0		10.0		10.3		OK
Creatinine mg/dL		1.1		0.9		1.1		1.1		Kidney, OK
HGB g/dL		14.7		14.9		14.6		15.0		Hemoglobin, OK
RBC M/uL		4.08		4.09		4.07		4.18		Red cells, low
WBC K/uL		3.8		6.2		4.8		5.3		White cells, normal
ANC K/uL		1.40		2.60		2.30		1.70		Neutrophils, normal

Related Links:

My Myeloma		A discussion of my myeloma, not very technical.
My Treatment History		Not technical.
My Test Charts		Graphic displays of several key test results over time.
My Test Result Table		Somewhat technical. Best with a wide browser window.
My Supplement Regimen		With links to where I buy them.

There's oatmeal under there somewhere:

Still Stable

Pomalidomide Study:

After 41 cycles on the pomalidomide (CC-4047) study, my M-Spike is still 1.0 g/dL, and IgG is up only slightly. Lambda light chains are up significantly, but they were down a lot last month.

News from the International Myeloma Workship in Paris:

New data from the CALGB study showed that patients who were given Revlimid maintenance after a transplant achieved an overall survival rate of 90% after two years or more, compared with 83% for patients receiving a placebo. Some doctors believe that maintenance therapy of some kind will become the new standard of care. Here is the IMF article. The IMF is the International Myeloma Foundation.

That information and other myeloma facts were presented at a Journalists Workshop, a video press conference by the IMF, which is available for viewing on the web. It lasts about an hour, and is a summary of the high points of the Myeloma Workshop. At about 45 minutes there is a one-minute clip showing me running in a marathon in Providence, Rhode island last Sunday. The clip was included in the press conference as a demonstration of the effectiveness of the new study drug pomalidomide. You could fast forward through the running part, but the rest of the video is actually interesting and I recommend it.

Some Current Test Results:

Test		Feb 07		Mar 09		Apr 07		May 05		Remarks
M-spike g/dL		1.0		1.0		1.0		1.0		Best tumor measure?
IgG mg/dL		1200		1050		1080		1130		Best tumor measure?
L FLC mg/dL		2.47		2.50		2.08		3.07		L Free light chains
Calcium mg/dL		10.1		9.6		9.9		9.4		Dandy
Creatinine mg/dL		1.0		1.0		1.2		1.1		Kidney, OK
HGB g/dL		16.0		15.2		15.5		14.7		Hemoglobin, good
RBC M/uL		4.44		4.40		4.27		4.11		Red cells, marginal
WBC K/uL		4.1		5.3		4.9		4.6		White cells, OK
ANC K/uL		1.40		1.61		1.90		1.90		Neutrophils, sufficient

Related Links:

My Myeloma		A discussion of my myeloma, not very technical.
My Treatment History		Not technical.
My Test Charts		Graphic displays of several key test results over time.
My Test Result Table		Somewhat technical. Best with a wide browser window.
My Supplement Regimen		With links to where I buy them.

Today's lunch: Leftover roast organic chicken (I love cold chicken), hot organic broccoli with a little hot sauce, organic heritage plum tomatoes, and organic USA strawberries. Everything there is normal size except the strawberries, which are enormous. It's strawberry season!

Boring Mayo Clinic Visit

Never. Even though nothing changed this month, I never feel complacent. Forty cycles on the pomalidomide (CC-4047) study are complete, and nothing changed this month, so I could have felt complacent. But I dread the inevitable day that the myeloma figures out how sidestep the pomalidomide - life will change when that happens, maybe not for the worse, there are other treatments, but life will change. Also, I suppose I don't want myeloma's reemergence to be a shock when it happens, and it can't be a shock if I'm always fully aware of the possibility.

Dr RH:

This visit was as routine as any we have. We don't know Dr RH very well, so after the medical stuff was done we chatted a bit, learned a little about each other. We like him - he'll do well for us, replacing Dr KDS, who really is gone now and whom we will miss. We also saw Dr L for a few minutes, a treat.

The Evolution of a Myeloma Recurrence:

With few exceptions, myeloma figures out how to defeat every medication. Maybe now, maybe later, even much later, but it does. I am definitely not a doctor or a biologist or anything of the sort, but I nevertheless have a simpleminded theory about that:

• Some carcinogen alters the DNA of a plasma cell, or maybe a memory B cell, in such a way that the cell forgets how to die when it ought to, and perhaps with other DNA problems too, but without alerting the body's normal defenses. There may actually be MANY alterations of the cells, but most are detected and squashed, or cause that cell to die, or fail for some other reason, until one suceeds. This is how cancer starts, including myeloma.
• That cell also has the ability to replicate itself or to produce other myeloma cells. I think there is still some dispute about how this happens - is the original progenitor a stem-like cell or an actual plasma cell? Anyway it multiplies.
• A medicine (Revlimid, Velcade, melphalan, whatever) is able to kill the myeloma cells or reduce their rate of replication. The tumor burden goes down - yay!
• But additional carcinogens, or the same carcinogenic influences, continue to make random alterations to the DNA of the remaining myeloma cells, which mat not be very stable to begin with. Most of these changes don't make any difference, or they may even cause the cell to die, but eventually one of those changes, by chance, makes a cell resistant to the current medications.
• Now, that twice-altered cell is the strongest of the myeloma cells and is able to proliferate faster than the old ones in the face of the medication. It multiplies, replaces the old myeloma cells, and the drug is no good any more.

Anyway that's my theory and I'm sticking to it. If it were true, what would be the implications? Most important, REMOVE AS MANY CARCINOGENIC INFLUENCES AS POSSIBLE! We should do exactly the same things that we should be doing to PREVENT cancer in the first place:

• Eat the healthiest foods, organic where that is important, to reduce the intake of pesticides.
• Maintain a healthy weight - studies show that overweight alone is a carcinogen.
• Exercise several times per week, to keep the body's immune system and other systems healthy.
• Don't smoke, duh.
• Stay away or protect ourselves from other common carcinogens such as gasoline, solvents, formaldehide in new construction or furniture, herbicides, pesticides, plus food additives such as nitrites and BHA/BHT.

I wrote more about cancer prevention in a previous post. It's how to live.


Gluten-free oatmeal with organic yogurt, organic strawberries, organic pear, pineapple, kiwi, walnuts. Might be some organic blueberries under there too.

Fighting Secondary Cancers

I'm cheerful today, after visiting Mayo Clinic for the end of the 38th 28-day cycle of pomalidomide. IgG is up a paltry 3%, from 1170 to 1200 mg/dL, but M-spike is down a whopping 17%, from 1.2 to 1.0 g/dL. I don't actually believe that my monoclonal proteins dropped that much, because last month's figure was a medical impossibility (higher than IgG), but it feels good anyway. See, it doesn't take a lot to make me happy. We celebrated with a couple of bowls of kettle-popped organic popcorn.

STABLE is the proper description:

The myeloma is stable. IgG has varied between 923 and 1350 mg/dL since July of 2008, two and a half years. I just want to stay on this regimen forever, running marathons and otherwise enjoying life. It doesn't work that way, but so far pomalidomide has given me nearly three years of normalcy.

When pomalidomide fails, what's next for me?

Every treatment fails eventually - that's a dependable feature of myeloma. Apparently, though, I will have plenty of options. I've had thalidomide, pomalidomide, dexamethasone, and low-dose naltrexone so far, no other doctor-prescribed treatments. There are Velcade studies at Mayo right now, and Carfilzomib, plus several new agents which work in magically new ways. Dr KDS mentioned Phase I, II, and III trials - lots going on, and I might be eligible for several of them. I'm feeling good about the future.

We even discussed bone marrow transplant, but I'm not sold on that, for me. I have a slow-moving variety of myeloma, and I'm hopeful that it can be managed by using the existing treatments in a serial fashion and, perhaps, by taking advantage of new ones as they come along. The cure for myeloma is to live long enough to die of something else, and that's my plan. Meantime, life is to be lived!

What About Secondary Cancers?

There is new evidence that long-term treatment with Revlimid, such as Revlimid maintenance after a transplant, may result in an increased risk of second primary cancers including lymphoma, leukemia, and solid tumors. The risk is still low, perhaps less than 5%, but studies seem to show that it is somewhat increased compared with people not on Revlimid maintenance. Doctors are trying to quantify this risk now, to determine whether it says anything for or against long-term maintenance. The Myeloma Beacon has a very current article on this issue.

So what about pomalidomide? Thalidomide, Revlimid (lenalidomide), and pomalidomide are all immunomodulatory drugs (IMiDs). They all "modulate" the immune system, suppressing it to some extent, in their multi-pronged campaign against monoclonal plasma cells.

THE FOLLOWING ARE THE SUPPOSINGS OF A NON-DOCTOR. READ AT YOUR OWN RISK: We know that an important role of the immune system is to kill cancers before they can get started. The DNA of a cell goes wacko (technical term) for whatever reason, say a coincidental zap from a gamma ray that left the star Alpha Centauri 4.2 years ago, or a treatment by an alkylating agent like melphalan, or a radiation treatment for something, or even a PET scan. The immune system detects the wacko cell and swats it down. Game over.

If the immune system is suppressed, however, maybe it wouldn't detect the wacko cell, or maybe not until that naughty cell has multiplied and the group has become too strong and adaptable for any immune system to swat it down. Thus the drug doesn't actually cause the cancer, it simply opens the door for it. Again, this is all supposition; I am not a doctor.

If something like that is happening, though, we might see secondary cancers in people taking other IMiDs like thalidomide, if we look, and eventually perhaps in those of us taking pomalidomide. Dr KDS says that there really is no information on that last point yet. Pomalidomide is too new. I don't know if anyone has yet looked at the information that does exist. But I do know that I've been on pomalidomide for nearly three years now, and that easily qualifies as long-term treatment. There was no transplant, but this is maintenance nonetheless.

How Do We Fight Secondary Cancers?

Job One, of course, is to discuss this with our doctors, and keep ourselves up to date.

Job Two, in my opinion, is to live a healthful lifestyle that fights cancer. That is a huge subject covering nutrition, exercise, sleep, addictions, and much more. It is, however, more or less in our own control. We can influence our own futures and make it more likely that we'll be here for our grandchildren. I've been thinking about writing a book about this (of course there are books out there already), and may blog about it, but here are some simple principles:

• Nutrition: We simply avoid eating anything that does not contribute to health. Does soda contribute to health, or a jelly doughnut, or french fries? Of course not! So we choose a healthful alternative, like charged water, a slice of organic whole-grain bread with a little organic raspberry jam, or a banana. Further, we go for the very best foods, especially fruits and vegetables, organic where suggested by the "dirty dozen" lists. Good nutrition contributes in two ways: (1) we avoid ingesting foods that cause cancer, foods full of pesticides, bad fats, and empty sugars; and (2) we do eat high-quality foods containing nutrients that our bodies need to build a competent immune system, including antioxidants and other micronutrients. We are what we eat.
• Exercise: Some is good, more is better. A good goal is a half hour, five days a week. We three try for an hour and usually make it. A balanced program, aimed at improving overall health, will include some resistance training (muscle building) and some aerobic exercise, with the prior advice of a doctor of course.
• Sleep: How can our health be at its best if we shortchange ourselves on sleep? Studies show that most people need eight hours, some more and some a little less. One test: if I need to use an alarm clock to wake up, then perhaps I'm not getting enough.
• Addictions:
  • Smoking: Oh, for God's sake, if you still smoke, do whatever it takes to stop. No excuses - it's killing you and everyone around you. Rehab if necessary. If you live with a smoker, move out.
  • Overweight: Overwhelming evidence points to overweight as a serious cancer risk. If you are obese (BMI 30+), or even overweight, please find a way back into your bathing suit, whatever it takes. This will require a serious lifestyle change - you will fail if you think it might not. Talk to people who have done it.

We three have followed these principles for years now. Does that mean we won't get additional cancers? No, it means that our risk is lower than it would be otherwise. That's all that any of us can do.

Some Current Test Results:

Test		Nov 18		Dec 16		Jan 13		Feb 07		Remarks
M-spike g/dL		1.2		1.0		1.2		1.0		Best tumor measure?
IgG mg/dL		1300		1080		1170		1200		Best tumor measure?
L FLC mg/dL		2.92		2.41		2.49		2.47		L Free light chains
Calcium mg/dL		10.3		9.8		10.3		10.1		OK
Creatinine mg/dL		0.9		1.0		1.4		1.0		Kidney, OK
HGB g/dL		15.0		14.6		15.3		16.0		Hemoglobin, good
RBC M/uL		4.26		4.23		4.48		4.44		Red cells, marginal
WBC K/uL		5.9		5.1		3.3		4.1		White cells, OK
ANC K/uL		2.30		2.50		1.19		1.40		Neutrophils, sufficient

Related Links:

My Myeloma		A discussion of my myeloma, not very technical.
My Treatment History		Not technical.
My Test Charts		Graphic displays of several key test results over time.
My Test Result Table		Somewhat technical. Best with a wide browser window.
My Supplement Regimen		With links to where I buy them.

High-quality food is often quite colorful. Canned wild-catch salmon baked under yogurt and a little shredded cheese, organic lettuce, pineapple, pickled organic beets, onions, organic peas:

Whoopee!

IgG and M-spike both dropped 17% in the last 28 days, more than offsetting the increase of last month, and returning to levels that are typical of the stable plateau of the last two and a half years or so. Still on the pomalidomide (CC-4047) trial, I'm a happy camper. Please enjoy a beer for me.

Why did it go down? The better question is, why did it go up last month? Maybe because at that time I was recovering from two different virus infections and probably a related bacterial infection, and also had quite recently received my flu shot, the Magnum Jolt version for seniors.

Interesting: If it's true that IgG went up last month because of challenges to the immune system, then M-spike must have gone up for the same reason. Indeed, it's possible that the entire increase in IgG came from the M-spike component of IgG. Why would M-spike respond to challenges from intruding organisms? The answer is way above my pay grade.

Neutrophils: Again I had the CBC done at the local clinic on the afternoon before the visit to Mayo, because my neutrophil count seems to be much higher in the afternoon than in the morning. Also, just before the blood draw, I run up four flights of stairs and do some pushups, trying to squeeze out a little adrenaline, which is thought to tease the neutrophils out of their hiding places. Absolute neutrophil count was 2.5 K/uL, well into the normal range and WAY above the cutoff threshold of 1.0. Yay.

Discussed with Dr KDS:

• We agreed that I'm still stable on pomalidomide as a single agent. I won't change anything.
  
  
• A recent study has (finally!) shown that Zometa, one of the bone-building bisphosphonates, actually has a modest anti-myeloma benefit in addition to its bone-strengthening ability, improving both the average time to disease progression and the overall survival of study participants. Doctors are still getting their heads around this, but one possibility for some patients is Zometa once every month! Zometa can have serious side effects, though, including unusual and disabling fractures, and osteonecrosis of the jaw, so it is not an automatic prescription.
  
  
• Two more studies, evaluating the use of Revlimid as maintenance therapy after stem cell transplant, showed that patients in the Revlimid arm of the study developed more secondary cancers than those in the placebo arm. Numbers were small, however, with less than 3% in both arms together developing a secondary cancer. Both studies, by the way, also demonstrated that maintenance therapy improved time to disease progression, but neither showed a clear improvement in overall survival.
  
  
• Recent evidence suggests that my immune system may not be as strong as I have though it was. Three different virus infections were defeated only very slowly. Dr KDS is concerned that I could contract an opportunistic fungal infection called pneumocystis pneumonia, common with AIDS patients who may also have compromised immune systems. She prescribed a sulfa-based antibiotic called trimethoprim-sulphamethoxazole, brand name Bactrim, to be taken every day as a prophylactic treatment to prevent that pneumonia and any number of other bacterial and fungal infections.
  
  There is a slim possibility of myelosuppression, however, which means low red and white blood counts; HELLO I already have that from the pomalidomide. It can also, rarely, cause liver or kidney failure, a potentially fatal complication. I hadn't heard of Bactrim prophylaxis before, but Dr KDS said that it has been used without incident by other patients in my situation. She knows that I will study this stuff and do my best to balance the risk of pneumonia against the risk of side effects, before making a decision. She also gave me an order for liver and kidney function tests which I can have done after trying the antibiotic for a week or two. Perhaps I'll talk to Dr B, my new PCP, about this.

Some Current Test Results:

Test		Sep 23		Oct 20		Nov 18		Dec 16		Remarks
M-spike g/dL		1.2		1.1		1.2		1.0		Best tumor measure?
IgG mg/dL		1070		1130		1300		1080		Best tumor measure?
L FLC mg/dL		2.58		2.78		2.92		2.41		L Free light chains
Calcium mg/dL		10.0		10.0		10.3		9.8		Below 10.2 is OK
Creat mg/dL		0.9		1.0		0.9		1.0		Kidney, OK
HGB g/dL		15.8		14.9		15.0		14.6		Hemoglobin, OK
RBC M/uL		4.43		4.31		4.26		4.23		Red cells, marginal
WBC K/uL		4.2		4.3		5.9		5.1		White cells, OK
ANC K/uL		1.60		2.14		2.30		2.50		Neutrophils, normal!

Related Links:

My Myeloma		A discussion of my myeloma, not very technical.
My Treatment History		Not technical.
My Test Charts		Graphic displays of several key test results over time.
My Test Result Table		Somewhat technical. Best with a wide browser window.
My Supplement Regimen		With links to where I buy them.

Uncertain Result

At the end of the 35th cycle of pomalidomide, IgG is up 15% to 1300 mg/dL, and M-spike is up 9% to 1.3 g/dL from the end of the previous cycle. Further, lambda light chains are up a little with kappa chains down. The markers are consistent, all pointing to an increase in actual tumor burden.

But maybe not. I had a bad cold with fever for most of the four weeks preceding this blood draw, and then also got my "high dose" flu shot. Either of those insults could have caused IgG to go up, the "good" immunoglobulins responding to the threats. Also, M-spike had been at 1.3 two months before, so it's just back to where it had been. As always, I'll be wondering what next month's tests will bring.

Neutrophils were up this time, well into the normal range, probably in response to those same two threats. We get the CBC at the local Stillwater clinic the afternoon before the Mayo Clinic visit, because my neutrophils are much higher in the afternoon, but I suspect they would also have been well above the threshhold of 1.0 K/uL in the morning at Mayo on this occasion.

Calcium is up because I took my usual supplements. Often I skip calcium tablets for a day or two before the Mayo blood draw, to avoid this slightly-high reading. It will be down next month, if I remember to skip calcium.

Flu Shot:

I got mine at the local clinic, and learned afterward that there are two dosages: (1) Normal dose for adults, and (2) "High dose" for seniors 65 and older, four times the strength, which is the shot I received. In discussing this later at Mayo Clinic, it appears that the CDC has given very little guidance about the use of this high-dose shot. Should a senior be given that shot even if he/she has a compromised immune system? If so, what about an adult under 65 with a compromised immune system? Apparently, doctors are left to make this decision themselves with no help from the CDC.

Some Current Test Results:

Test		Aug 24		Sep 23		Oct 20		Nov 18		Remarks
M-spike g/dL		1.1		1.2		1.1		1.2		Best tumor measure?
IgG mg/dL		1100		1070		1130		1300		Best tumor measure?
L FLC mg/dL		2.79		2.58		2.78		2.92		L Free light chains
Calcium mg/dL		10.1		10.0		10.0		10.3		Below 10.2 is OK
Creat mg/dL		1.3		0.9		1.0		0.9		Kidney, OK
HGB g/dL		15.7		15.8		14.9		15.0		Hemoglobin, OK
RBC M/uL		4.39		4.43		4.31		4.26		Red cells, marginal
WBC K/uL		4.4		4.2		4.3		5.9		White cells, OK
ANC K/uL		1.41		1.60		2.14		2.30		Neutrophils, normal!

Related Links:

My Myeloma		A discussion of my myeloma, not very technical.
My Treatment History		Not technical.
My Test Charts		Graphic displays of several key test results over time.
My Test Result Table		Somewhat technical. Best with a wide browser window.
My Supplement Regimen		With links to where I buy them.

Banana Man and Minnesota Don (right) near the finish of the Route 66 Tulsa Marathon. Banana Man is a Team In Training (TNT) runner, raising money for the Leukemia and Lymphoma Society, which supports myeloma research too. Banana Man had run another marathon the DAY BEFORE, or else I would never have seen him after the start.

Pomalidomide Rocks

At least for me it does. I've been on a study of Celgene's pomalidomide (CC-4047) for 34 complete cycles now, and it has kept my myeloma stable for all of that time. At first I took it with "low-dose" dexamethasone (DEX), and after two years graduated to pomalidomide alone (actually with aspirin and acyclovir). M-spike and IgG dropped quickly in the first three months, and for more than two years IgG has been about a third of the starting value with M-spike tracking appropriately.

"Pomalidomide" is the drug's generic name, while CC-4047 is a code name for the same drug in drug trials. Someday it may have the brand name "Actimid," when it is available for sale. I hope that happens soon, because it's good stuff and people are dying right and left.

I think this is publishable news: Mayo Clinic will soon open a new arm of the CC-4047 study. Entrance criteria were not established when I was there on Oct 20, but one objective is to make it available to more people who need it, so I suspect the entrance criteria will be fairly wide.

Cycle 34 Test Results:

At the end of the previous cycle, my IgG was down a little and M-spike was up. This time, IgG is up a little and M-Spike is back down. I suppose that's the definition of "stable" for us myelomiacs, because these tests do have some error tolerance and our blood varies too. Other markers, like lambda light chains, calcium, and some of the CBC blood counts are virtually unchanged. No problem - a boring visit -:) Let's have lots more of those!

Neutrophils were a bit of a surprise, though. The study requires at least 1000 of those tiny critters per microliter of blood, or else the pomalidomide has to be stopped until neutrophils climb above that mark again. Sometimes mine have been below 1000, so we've chosen to switch to 1:00 pm blood draws, taken the day before the Mayo visit, because my neutrophil counts are reliably higher in the afternoon. This time, though, the afternoon count was 2100, actually well into the "normal" range, and another count the next morning at Mayo also showed 2100. Why? Maybe because I have a miserable cold, and those little buggers are an essential part of the battle that's going on. They have been recruited and they are rallying!

Mayo, Dr KDS:

• I have a pain in the index finger of the left hand - can't quite localize it though. Could it be myeloma? Answer: Probably not - myeloma usually attacks larger targets with more marrow.
• I changed my diet this month to reduce the amount of simple sugar. This means no cookies or other sweets, and less fruit. Since the myeloma didn't change much, I believe this experiment was a failure and will go back to the higher-fruit diet.
• I also had more constipation than usual this month. It's a known side effect of pomalidomide, but we agreed that the increase was probably due to the reduction of fruit in the diet.
• An afternoon blood draw produces a neutrophil count about 50% higher than does a morning draw, for me. Dr KDS tried that with another patient, though, and it didn't work. We're all different.

Some Current Test Results:

Test		Jul 29		Aug 24		Sep 23		Oct 20		Remarks
M-spike g/dL		1.1		1.1		1.2		1.1		Best tumor measure?
IgG mg/dL		1160		1100		1070		1130		Best tumor measure?
L FLC mg/dL		1.86		2.79		2.58		2.78		L Free light chains
Calcium mg/dL		9.9		10.1		10.0		10.0		Below 10.2 is OK
Creat mg/dL		1.0		1.3		0.9		1.0		Kidney, OK
HGB g/dL		14.0		15.7		15.8		14.9		Hemoglobin, OK
RBC M/uL		4.16		4.39		4.43		4.31		Red cells, marginal
WBC K/uL		2.8		4.4		4.2		4.3		White cells, OK
ANC K/uL		0.93		1.41		1.60		2.14		Neutrophils, normal!

Related Links:

My Myeloma		A discussion of my myeloma, not very technical.
My Treatment History		Not technical.
My Test Charts		Graphic displays of several key test results over time.
My Test Result Table		Somewhat technical. Best with a wide browser window.
My Supplement Regimen		With links to where I buy them.

Cell-phone photo along a local running trail. I love Minnesota in the fall!

US 52 Was Under Water

We three drive down US 52 from the east side of St Paul to Rochester once every 28 days for my checkup at Mayo Clinic. It's the shortest, fastest route. Usually we get up at 3:50 am, take an hour to shower and get ready, then 90 uneventful minutes later I'm in line for my 6:30 am blood draw. We knew that Thursday would be different, because of the heavy rain, but we didn't know how different. A check of MNDOT's Traffic Conditions Website showed that US 52 was closed, so we went another way - no fun driving in "driving" rain, but US 61 & 63 were open and it took us only about a half hour longer. Heading back, that MNDOT web site said that US 52 was open again, so we started out that way. Just a few miles south of Pine Island, though, we found water rushing across the four-lane highway. Some vehicles were crossing it, but some were not and we turned around. Police were conspicuously absent. At 5 pm the local news said that US 52 was closed right where we encountered the water.

We later discovered that the city of Pine Island had in fact become an island, though it normally is not.

IgG versus M-Spike:

IgG is a measure of ALL Immunoglobulin G proteins, good and bad, where M-Spike is a measure of just those Immunoglobulin G proteins that are monoclonal, the bad ones, all exactly the same. Medically, M-Spike can never be higher than IgG. Thursday my IgG was 1070 mg/dL, but M-Spike was 1200 mg/dL (1.2 g/dL). Not possible. I hate that! I was feeling pretty good about another "stable" result until that M-Spike came bombing in.

I asked Dr KDS about this impossibility - which number is most likely to be wrong? She wasn't sure, but assured me (paraphrasing here) that she has seen this before, because both tests have an error tolerance, but that she was NOT worried. Further, I'm still stable and, as always, let's see what next month brings.

Sigh. I fret about this stuff, and was hoping for a fret-free 28 days. I've been on the pomalidomide (CC-4047) study for 33 complete cycles now, and it has done a fine job of keeping me stable. Nevertheless, I know that the ride will end some day and I will need to take a different course of drugs that may have much worse side effects. So I'm always wondering if that time is near and hoping that it isn't.

For now, though, I'm going to try to convince myself that the M-Spike number is wrong. There is nothing in the other cancer markers to suggest an increase in tumor burden. Calcium is fine, kidneys are fine, liver is fine, and light chains are not much changed. In fact, an IgG measurement of 1070 mg/dL is actually a decrease of 3% from August and 8% from July. We'll go with that.

Carfilzomib:

Mayo Clinic will soon start a trial of this brand-new drug. Carfilzomib is a proteasome inhibitor, like Velcade, at least as effective but much less likely to cause painful neuropathy. Furthermore, it can be effective in patients for whom Velcade has failed. I blogged about it here. I'm not sure what it will take to qualify for the trial, but if you go to Mayo you might ask about it.

Velcade:

I am not a medical doctor, so you shouldn't believe anything that I say. Nevertheless: If you are offered twice-weekly Velcade as a treatment, just say NO. Twice-weekly infusion is still the official, approved regimen, even though several studies have shown that once-weekly infusion is much less likely to cause painful neuropathy in most patients. In addition, there can be a threshhold effect: if a patient on twice-weekly infusions does develop neuropathy, switching to once-weekly may not help the neuropathy much. Once you get the neuropathy it's yours to keep, and any amount of Velcade will reactivate it. A patient who starts out with once-weekly infusions, however, is much less likely to develop serious neuropathy in the first place. If your doctor insists on starting out with the official twice-weekly protocol, change doctors. No kidding. Velcade is an excellent drug, but it's useless if the neuropathy prevents you from taking it.

Some current test results:

Test		Jun 29		Jul 29		Aug 24		Sep 23		Remarks
M-spike g/dL		1.0		1.1		1.1		1.2		Best tumor measure?
IgG mg/dL		1120		1160		1100		1070		Best tumor measure?
L FLC mg/dL		1.74		1.86		2.79		2.58		L Free light chains
Calcium mg/dL		9.9		9.9		10.1		10.0		Below 10.2 is OK
Creat mg/dL		1.2		1.0		1.3		0.9		Kidney, OK
HGB g/dL		14.5		14.0		15.7		15.8		Hemoglobin, OK
RBC M/uL		4.30		4.16		4.39		4.43		Red cells, OK
WBC K/uL		3.4		2.8		4.4		4.2		White cells, OK
ANC K/uL		1.09		0.93		1.41		1.60		Neutrophils, low

Related links:

My Myeloma		A discussion of my myeloma, not very technical.
My Treatment History		Not technical.
My Test Charts		Graphic displays of several key test results over time.
My Test Result Table		Somewhat technical. Best with a wide browser window.
My Supplement Regimen		With links to where I buy them.

Neutrophils and Dermatology

On Thursday, July 29, I visited Mayo Clinic to assess Cycle 31 of pomalidomide (CC-4047). Still stable. IgG was up about 3.5%, and M-spike went from 1.0 to 1.1 g/dL. But we've been here before. In February, IgG was a little bit higher than it was Thursday, and M-spike was 1.1 just last May. The numbers may have a slight upward trend, but they do seem to bounce around on their way up. I'll not worry this time. Maybe next time.

Neutrophils:

My neutrophil count was 930 cells per microliter, just below the threshhold. They won't give me a new bottle of 28 pomalidomide capsules for the next cycle until neutrophils go above 1000.

Therefore, we scheduled another CBC (with differential) for the afternoon, because my neutrophil count seems to follows a circadian rhythm, rising through the morning into the afternoon. In all but one of the previous four cycles I have needed a second CBC, and in each case the second neutrophil count was comfortably above 1000. In all of those cases the second count was taken on a later day, in the afternoon.

This time, though, the second count was done the same day, in the same Mayo Clinic lab. By Thursday afternoon, neutrophils had jumped 63%, from 930 at 9:00 am to 1520 at 1:00 pm. Furthermore, the total white cell count also jumped up from its all-time low of 2.8 up to 3.8.

I knew that physical exertion could increase neutrophils, so before the 9:00 am blood draw I jogged a half mile, walked up and down six flights of stairs, and did 30 pushups. If that helped, it wasn't enough. Dr Lacy informed me, though, that it's really adrenaline that flushes the neutrophils into the blood stream. I asked if a good scare would do as well as exercise, and she thought it would. Anyway, for the second blood draw, I ran a few very short, high-intensity sprints and ran full speed up two flights of stairs. I really don't know if that helped either - maybe the increase is all due to normal circadian rhythm.

Next time, I'll get the CBC drawn the afternoon of the DAY BEFORE the Mayo Clinic visit, at a local clinic. This is OK with Dr L, and may solve the problem of unnecessary duplicate neutrophil counts.

Dermatology:

At the last visit, I asked Dr L about a bump on my forehead, wondering if it was any kind of skin cancer. She didn't think so, but scheduled a "dermatology consult" for this visit. Well, at Mayo Clinic that's more than a cursory peek at one spot. I was asked to put on a hospital gown (the kind that opens in the back, of course), and the doctor checked most of my skin, even those parts that are almost always in the shade.

He was not at all interested in the little forehead patch that brought me in, but he saw several "pre-cancerous" spots on my forehead and zapped them very quickly and efficiently with a little can of freezing spray. He said that about one in a hundred of those spots can become malignant. He asked about a spot on a knuckle, and I told him that it was a bruise (I knew when it happened), but he nonetheless zapped that one too.

I asked him about the skin on my arms, which is now so thin and weak that I can't even use band-aids on it. I know that it has been thinned by age and by steroids, but he said the big culprit is sun damage. We discussed sun screen (use a good one, such as the Vanicream that Mayo Store sells), and hours of the day - he suggested 10:00 to 3:00 I think, but I would go another hour in the afternoon, 10:00 am to 4:00 pm, daylight savings time. That's a three-hour window each side of high noon, sun time.

We asked if there was a way to repair the damaged skin. He said that Retin-A has been tried by some, but he wasn't impressed by the result. Retin-A can make skin even MORE sensitive to the sun, and has other significant side effects, so I'll stay away from it but probably will be more careful to use sunscreen.

The doctor said that if any of the frozen spots became open sores, I should just use vaseline on them. We asked about Neosporin, because I've had such excellent results treating other cuts and scrapes. He replied that they recommended Neosporin in the past, but eventually discovered that about a third of people are allergic to it. So far no problem with my treated spots, but if there is a problem I'll use Neosporin anyway because I don't seem to be allergic.

Some current test results:

Test		Apr 29		May 27		Jun 29		Jul 29		Remarks
M-spike g/dL		1.0		1.1		1.0		1.1		Best tumor measure
IgG mg/dL		1010		1110		1120		1160		Good tumor measure
L FLC mg/dL		2.41		2.58		1.74		1.86		L Free light chains
Calcium mg/dL		9.7		9.9		9.9		9.9		Below 10.2 is best
Creat mg/dL		1.3		1.3		1.2		1.0		Kidney, normal
HGB g/dL		14.1		14.7		14.5		14.0		Hemoglobin, barely OK
RBC M/uL		4.21		4.36		4.30		4.16		Red cells, low
WBC K/uL		3.3		3.6		3.4		2.8		White cells, LOW!
ANC K/uL		0.73		0.92		1.09		0.93		Neutrophils, LOW!

Related links:

My Myeloma		A discussion of my myeloma, not very technical.
My Treatment History		Not technical.
My Test Charts		Graphic displays of several key test results over time.
My Test Result Table		Somewhat technical. Best with a wide browser window.
My Supplement Regimen		With links to where I buy them.

That's the oatmeal, right in front on top.

Stable Again

Tuesday, June 29, was the end of Cycle 30 of my participation in the trial of pomalidomide (CC-4047). I'm pretty happy to be on that trial, because neither the myeloma nor the drugs have substantially impacted my lifestyle, let alone threatened my life. If you just ignore the fact that I have cancer (?) I'm a lucky guy, and I feel that way.

IgG and M-spike:

This time IgG was virtually unchanged, and M-spike actually went down from 1.1 to 1.0 g/dL. It makes me wonder if last month's M-spike result was off just a bit. That can happen, with M-spike especially. I wish IgG was down too, but maybe next month.

Lambda free light chains were down a lot, but Kappa chains were too, so the ratio improved only slightly - and I really don't know what these numbers mean in my case anyway.

Neutrophils:

Neutrophils remain dodgy. Last time they were 920 (little critters per microliter), below the cutoff, but this time they were 1090, just above. When they are below 1000 I am supposed to hold the pomalidomide until they come back up above, lest I fall prey to an opportunistic infection. Neutrophils are a key component of the very-complex immune system, and a low count (neutropenia) is dangerous. The good news, in my opinion, is that neutrophils seem stable. At first, after discontinuing dexamethasone (DEX), they headed downhill for a few cycles, but that decline may have stopped. I do make every effort to increase the count before each blood draw by exercising, which is supposed to force some of the neutrophils out of muscles into the blood stream. This time I jogged a half mile, pumped 30 pushups, walked up and down six flights of stairs, and did leg stretches. This is apparently a "legal" tactic, but I don't know if it helps. What DOES help, I'm quite sure, is to wait until afternoon for the blood draw, because neutrophils are naturally higher then. I'm trying to get my appointments scheduled for the afternoon instead of the morning.

Discussion with Dr L:

• I have a funny-looking spot on my forehead that a dermatologist will check out at the next visit. It's not melanoma, but she can't rule out some other skin cancer.
• I had heard someone in our support group say that her doctor told her to wear a medical bracelet saying "irradiated blood only." If I understood correctly, Dr L said that the risk is that a few white cells in the transfused blood could cause graft-versus-host disease, which the irradiation can prevent.
• I asked if Mayo Clinic makes it a practice to inform new patients of the existence of support groups. She said that was specific to the doctor and also to the patient. She believes that some new patients are simply not ready to hear the kind of information that is shared at support groups, though others might be.
• Dr L estimated that perhaps a third of the patients who entered the pomalidomide trial in my cohort are still in the trial. I didn't ask, but I assume that the drug has stopped working for most of those who have left the trial.
• A similar pomalidomide study is currently open and recruiting more patients again, with a slightly different study objective.

Some current test results:

Test		Apr 01		Apr 29		May 27		Jun 29		Remarks
M-spike g/dL		1.0		1.0		1.1		1.0		Best tumor measure
IgG mg/dL		1070		1010		1110		1120		Variation is normal
L FLC mg/dL		1.82		2.41		2.58		1.74		L Free light chains
Calcium mg/dL		9.8		9.7		9.9		9.9		Below 10.2 is best
Creat mg/dL		1.2		1.3		1.3		1.2		Kidney, normal
HGB g/dL		14.6		14.1		14.7		14.5		Hemoglobin, normal
RBC M/uL		4.39		4.21		4.36		4.30		Red cells, normal
WBC K/uL		3.3		3.3		3.6		3.4		White cells, low
ANC K/uL		0.94		0.73		0.92		1.09		Neutrophils, LOW!

Related links:

My Myeloma		A discussion of my myeloma, not very technical.
My Treatment History		Not technical.
My Test Charts		Graphic displays of several key test results over time.
My Test Result Table		Best with a wide browser window. Somewhat technical.
My Supplement Regimen		With links to where I buy them.

Nice gluten-free chef salad lunch at a local restaurant:

Innovative Treatment for Relapsed and Newly-Diagnosed Myeloma

Friday night I attended a satellite session hosted by Celgene, the makers of Revlimid and other drugs. Dr David H Vesole, of Hackensack University Medical Center, focused on the newest treatments for myeloma. He said that the two most important tools are Revlimid and Velcade (and he might as well have included dexamethasone (DEX) because it is almost always combined with Revlimid and Velcade).

The new kid on the block is all three, termed VRD. In one study it produced a response in 100% of patients, and a very good partial response (VGPR) or better in 75%. That's pretty amazing. Unfortunately, though, 15% of patients experienced severe neuropathy. Other studies suggest that low-dose DEX may work as well, and with once-weekly Velcade instead of twice-weekly, neuropathy may be reduced to a much smaller number of patients. Continued maintenance with Revlimid improves the result.

Potential newer kids on the block:

• Carfilzomib: This is a "proteazome inhibitor" (interferes with the cell's ability to dispose of waste) like Velcade. Carfilzomib seemed to be on a fast track, but is back in phase I trials to zero in on the maximum tolerable dosage. At lower dosages it appears as effective as Velcade but with only 1% of patients experiencing severe neuropathy. At the higher dosages it may be even more effective, but neuropathy may be increased. I spoke to one person in the sales booth who thought it was still a year and a half away from FDA approval.
• Pomalidomide: I have been on a Phase II study of pomalidomide for 30 cycles. It's an immunomodulatory drug (IMiD) with the capacity to suppress parts of the immune system, particularly myeloma cells, which are wayward plasma cells. Dr Lacy from Mayo Clinic will be presenting a talk which shows a 49% objective response rate even among patients for whom Revlimid and Velcade (both) are no longer effective. I don't know when this drug will be approved - it seems to be on a slow track, and I wonder (lacking specific knowledge) if Celgene has sufficient incentive to hurry this better drug to market as long as Revlimid is making them so much money.

Unanswered questions according to Dr Vesole:

• Should patients be pushed toward a complete response (CR) when a good response is already obtained? Studies do suggest that they do better.
• Is a four-drug combination better than three? The jury is still out, and one study says that they are only equal.
• What do we do when a patient on a three-drug combination relapses?

Actual sign on a Montana interstate:

Ho Hum, Cancer Is Still Stable

Stable but not ho-hum, actually. Thursday, April 29, was the end of Cycle 28 of my pomalidomide (CC-4047) trial at Mayo Clinic. M-spike is still 1.0 g/dL, IgG is actually down 5%, and light chains are normal. That's great! The fly in the ointment is the neutrophil count, which is down to 730 cells per uL, where the reference range is 1700 to 7000. In theory, at least, this leaves me a little too vulnerable to bacterial and fungal infections.

Neutrophils:

The trial protocol requires that the pomalidomide dosage be reduced if neutrophils fall below 1000. Last month, neutrophils were 940 per uL, but another CBC performed four days later at a local clinic showed a count of 1500. When that result was faxed to Mayo, the study was continued unchanged. This time the neutrophil count was even lower, but Dr L again suggested a re-test in four days, and by golly the count on Monday afternoon was 1700. Huh. No change in pomalidomide dosage for at least another month.

How can the neutrophil count change that much? More than double! I'm surprised that it can, actually, but:

• Exercise can affect the count. Both Mayo doctors have mentioned this, and Dr LL, my primary care physician, explained that exercise pushes the neutrophils out of muscle tissue into the blood. Learning of this, I have done a few flights of stairs and a set of pushups before each of the Monday blood draws at the local clinic. On the other hand, I also did those exercises before last Thursday's blood draw at Mayo, and that time the count was the lowest ever.
• Dr L explained that neutrophils do follow the body's daily circadian rhythm, and they are higher in the afternoon than in the morning. In both cases, the Thursday blood draw at Mayo was done at about 6:40 am soon after a 90-minute drive, and the Monday blood draw at the local clinic was done in the early afternoon. Perhaps this accounts for much of the gain in count.
• Could food make a difference? Something in the stomach? I don't know a reason why food should affect the count, but results have been low on an empty stomach and high after two meals.
• Do you suppose there is a difference in the way that the two laboratories count neutrophils? Of course there is a difference, there is always a difference, but I doubt it is enough to double the count.

Hand Infection:

• Two months ago I whacked the back of my left hand against something and got an infection, either bacterial or fungal, and the hand eventually got quite warm, swollen, and painful.
• Over time, three different doctors have prescribed four different antibiotics. Whether or not the antibiotics helped, the infection eventually started to turn around after getting steadily worse for more than five weeks. It's still getting better, very slowly.
• I've babied that hand, keeping it extra warm and even applying a little heat for much of the time.
• The last antibiotic ran out 10 days ago, and the infection is still slowly getting better even without it.
• Here's what I think:
  • It's a fungal infection, because the speed of recovery didn't seem to change when the antibiotic ran out;
  • The speed of recovery is reduced by the shortage of neutrophils, which are important in battling either a fungal or a bacterial infection;
  • If I do nothing more, it will probably, gradually, heal itself. I hope; and
  • I sure am glad that I have nothing more serious to whine about!

Other Discussions with Dr L:

• I asked which test, M-spike (serum protein electrophoresis) or IgG (immunoglobulins), was more accurate. She took the question to mean "which is a better indicator of tumor burden" I think, and responded that IgG is better when numbers are quite high, and M-spike when numbers are quite low. For me, she said, with IgG and M-spike both near 1000 mg/dL (1.0 g/dL), they may be equally good indicators.
• Dr L is OK with my decision to NOT start taking Fosamax yet.
• She also doesn't know what's going on with the hand, and seems pleased that Dr LL, my PCP, is taking care of it.

Some current test results:

Test		Feb 04		Mar 04		Apr 01		Apr 29		Remarks
M-spike g/dL		1.0		1.0		1.0		1.0		Best tumor measure
IgG mg/dL		1180		1130		1070		1010		Variation is normal
L FLC mg/dL		2.78		2.10		1.82		2.41		L Free light chains
Calcium mg/dL		9.8		10.1		9.8		9.7		Below 10.2 is best
Creat mg/dL		1.1		1.0		1.2		1.3		Kidney, normal
HGB g/dL		14.2		14.7		14.6		14.1		Hemoglobin, normal
RBC M/uL		4.00		4.17		4.39		4.21		Red cells, normal
WBC K/uL		3.8		3.4		3.3		3.3		White cells, low
ANC K/uL		1.22		1.29		0.94		0.73		Neutrophils, LOW!

Related links:

My Myeloma		A discussion of my myeloma, not very technical.
My Treatment History		Not technical.
My Test Charts		Graphic displays of several key test results over time.
My Test Result Table		Best with a wide browser window. Somewhat technical.
My Supplement Regimen		With links to where I buy them.

Sore left front paw: