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.

Afternoon Delight

Neutrophil Count:

I'm still taking pomalidomide (CC-4047), participating in a trial of that new drug. It has kept my tumor burden low and stable for two and a half years, but in the last half year it has also suppressed my neutrophils enough that they tend to fall below the cutoff of 1000 cells per microliter (1.0 K/uL). In each prior case we have drawn the initial (failing) blood sample in the morning. But in another blood draw in the afternoon, usually a few days later, the count was always plenty high, sometimes almost double the morning count. In the meantime, though, there was a question whether I should get the pomalidomide pills or not, and more than once the treatment actually slipped a few days.

So this time we finally got smart and did the blood draw (CBC with differential) the AFTERNOON BEFORE the Mayo visit, at the local clinic. I ran up and down a few flights of stairs first, as usual, trying to work up a little adrenaline to chase some neutrophils out of their hiding places. The clinic did a very professional job, running the CBC and manual differential so quickly that I had the printout in my hot fist less than an hour later. It showed a neutrophil count of 1400, so I went to Mayo the next morning, August 24, knowing that there would be no drama about the neutrophil count and the pomalidomide. A saving of money, time, and stress. Whew.

IgG dropped about 5% this time, from 1160 to 1100 mg/dL, which is good. M-spike, however, remained the same at 1.1 g/dL (1100 mg/dL), which is technically impossible. M-spike measures the BAD (monoclonal) portion of immunoglobulin G, whereas IgG measures the total of both good and bad. They cannot be equal unless the good portion is zero, which is quite unlikely. Both measurements have tolerances, however, especially M-spike, and I suspect that they just happened to lean toward one another this time. In any case the result is either stable or down a little, which is good. Lambda light chains are up quite a bit, but so are Kappa light chains and the ratio is virtually unchanged. I'm happy - on to Cycle 33!

Supplements:

I hate taking supplements. I admit it. I take a LOT of them, but I have to make myself do it. This time my 7-day pill minder ran out on the same day that the cycle started, and I didn't fill it right away. When it's empty, I don't take any supplements, and for ten days I just didn't take the time to fill those little plastic boxes, though I religiously took the pomalidomide. When I did fill the boxes again, I cut back the number of different supplements significantly. I dropped the curcumin, feverfew, flaxseed oil, pancreatic enzymes, resveratrol, bromelain, milk thistle, and half of the CoQ-10 (ubiquinol). Later I put one or two of those back - the current supplement regimen is here.

Results of the supplement holiday:

• Tumor burden: Nothing happened, at least nothing bad. I conclude that those dropped supplements have not contributed to the myeloma treatment.
• Neuropathy: It did seem to get a little worse. Previously, I felt some numbness in the right thumb and the left pinkie finger. Now, though, I feel it in both thumbs, both pinkies, and both index fingers. In addition, the backs of both hands feel a little numb. I think that my feet are a little more numb too, athough I haven't tested them as carefully. PLEASE NOTE: My neuropathy is insignificant compared with what many people feel. I'm not complaining about it (much); the important point is that the neuropathy did seem to get worse during the ten days with no supplements and has not improved since resuming them.
• A bodily function unique to males actually seemed to improve during the ten days without supplements. Is there one particular supplement that I am still taking which tends to suppress that function? More research is indicated.

Some current test results:

Test		May 27		Jun 29		Jul 29		Aug 24		Remarks
M-spike g/dL		1.1		1.0		1.1		1.1		Best tumor measure
IgG mg/dL		1110		1120		1160		1100		Good tumor measure
L FLC mg/dL		2.58		1.74		1.86		2.79		L Free light chains
Calcium mg/dL		9.9		9.9		9.9		10.1		Below 10.2 is best
Creat mg/dL		1.3		1.2		1.0		1.3		Kidney, normal
HGB g/dL		14.7		14.5		14.0		15.7		Hemoglobin, good
RBC M/uL		4.36		4.30		4.16		4.39		Red cells, low
WBC K/uL		3.6		3.4		2.8		4.4		White cells, OK
ANC K/uL		0.92		1.09		0.93		1.41		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 canned salmon a'la Sweet Pea. Big strawberries, small plate.

Race Myeloma Awareness

A verrrry bad pun - "raise" myeloma awareness - get it?

Myeloma patient Keith May and the IMF have entered a racecar design called "The Survivor" in a contest called Sponsafier. The winning entry will be built as a full sized car, showcased at a NASCAR race, and your votes can help push us across the finish line.

This will raise awareness of myeloma, the International Myeloma Foundation, the great work being done to change the course of myeloma, and the work that still needs to be done. Here's what you can do:

Just take 30 seconds every day until August 28, click nascar.myeloma.org, wait for the screen to develop, and simply click the “vote” button. You don't have to log on or enter ANY information. For extra credit, you can do this with every computer that you have available, every day.

“The Survivor” is one of several hundred entries in the Sponsafier contest. Some are just artistic designs and some like Keith’s support a cause. Now we all have the opportunity to support Keith, myeloma awareness, and the IMF by voting every day for the next 11 days, and by asking your friends, families, and colleagues to vote too.

The messages on the car are simple: “Beat myeloma to the finish line,” and simply “Beat Cancer.” What better way to get there than by racing? Click nascar.myeloma.org.

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:

Vitamin D with Calcium Reduces Cancer Risk in Women

John A Milner, PhD, Chief of the Nutritional Science Research Group, Division of Cancer Prevention at the National Cancer Institute presented a talk on vitamin D supplementation at the recent meeting of the American Society of Clinical Oncology (ASCO) in Chicago. He stated that current guidelines suggest 400 IU of vitamin D, possibly more for the elderly, up to 600. He also noted that too much vitamin D can be toxic, e.g. 50,000 IU daily for a long time, but that there is probably a safe range between those.

He cited the 2007 data from a Creighton University four-year study of 1179 healthy women aged 59-73, all from rural Nebraska. Subjects took 1400-1500 mg calcium and 1100 IU vitamin D daily, and the study was designed to assess the effect on bone health. In a secondary analysis of the results, researchers found that subjects taking the supplements had almost a 75% reduction in the risk of cancer, all cancers.

Dr Milner noted that the study did not have a "vitamin D only" arm, so there was no way to assess the value of taking vitamin D supplements alone. The NIH is funding further research. Further, he cautioned that other studies have shown that too much vitamin D actually increases the risk of some specific cancers. He also believes that this is a very individual issue, and that additional research will help doctors understand just who might benefit from supplementation and who might not.

I have been taking 1200 mg calcium and 2000 - 5000 IU vitamin D3 (cholecalciferol) daily for several years now. I don't plan to change, but I may have my vitamin D level measured and then see. From his talk, it appeared that the risk of breast cancer and other diseases started to increase as the blood serum concentation of vitamin D reached 60 to 100 nanomoles/L (24 to 40 ng/mL).

This may be the last ASCO post. I'm out of subjects. Back to regular stuff.


Dinner aboard the Amtrak Empire Builder, Chicago to the Twin Cities, slightly blurred by the motion of the train:

ASCO Presentation: Selenium and Vitamin E Do Not Prevent Prostate Cancer

The government-funded Selenium and Vitamin E Cancer Prevention Trial (SELECT) included 36,000 men, each having a PSA of 4 or less, at many different medical centers, for 5.5 years, and cost $100 million dollars. The men took selenized yeast and vitamin E, or a placebo. Eight percent were smokers. Now seven years later, there is no evidence of a reduced risk of ANY cancer, especially prostate cancer, which the researchers expected would be reduced.

Other studies had suggested a benefit, and researchers don't know why it didn't appear. The presenter, Eric Klein MD, suggested that we may need to take a more comprehensive approach, evaluating the benefit of whole foods instead of discrete nutrients. He pointed to a rat study showing a benefit from tomato powder where there was no benefit from lycopene, the studied nutrient. Maybe a single nutrient only helps people who have a deficiency in that nutrient.

He closed by suggesting that such disappointing results might make it difficult to get another $100 million for the next study!


That's quiche in the middle. Sort of. Good stuff.

Three More Drugs at ASCO

Several speakers at the ASCO conference mentioned carfilzomib and pomalidomide as the most-promising new drugs in our futures. I posted about those here. At least three other new drugs also show promise: (1) Elotuzumab, (2) Denosumab, and (3) Vorinostat.

• Elotuzumab is a laboratory-manufactured monoclonal antibody which works against a cell surface glycoprotein, CS1, highly expressed in multiple myeloma (MM). Like the antibodies that our own bodies produce, it attaches to the target protein and kills or disables the cell possessing that protein. It has been tested successfully in Phase I and II trials with both Velcade and Revlimid. In the Revlimid trial, 28 patients with lots of prior therapies experienced an overall response rate of 82%. Not bad. I personally believe that many more monoclonal antibodies are in our future - these are the "silver bullets," highly-directed therapy that really could make myeloma a chronic disease. Someday, not yet.
  
  By the way - the suffix "mab" on the generic drug name elotuzumab means "Monoclonal AntiBody." We'll see more MABs.
  
  
• Denosumab (see - here's another) is also a monoclonal antibody, this time directed at a signal protein which promotes bone removal. Thus denosumab inhibits destruction of bones by myeloma and its treatments. This is cool stuff. Several Phase III studies were reported at ASCO, all of them showing an advantage for denosumab over Zometa. Quoting the conclusion of one study (9042), which included myeloma patients: "In this head-to-head study, patients receiving denosumab had longer time to first skeletal-related event (SRE) or hypercalcemia and time to radiation to bone compared with Zometa. A lower proportion of patients experienced an on-study SRE in the denosumab group compared with Zometa." In another study, patients taking denosumab experienced less bone pain than those taking Zometa.
  
  
• Vorinostat, brand name Zolinza, is already approved for some cancers. It is a new class of drug called histone deacetylase (HDAC) inhibitors. I don't know what means, actually, except that it works by a different mechanism than Revlimid, Velcade, melphalan, or dexamethasone, making it an excellent candidate for use WITH those drugs. So far it looks promising in early studies with both Velcade and Revlimid. Another HDAC inhibitor, panobinostat, also shows promise.

Nice salmon dinner aboard the Amtrak Empire Builder:

Maintenance or Not - A Patient Perspective

I posted about this three days ago, but have now heard the talks and thought about it some more.

At least three different papers at the American Society of Clinical Oncology (ASCO) make this clear: When a good response (from a transplant or drug combo) is followed by continuous maintenance with a single agent drug, the time of remission may be extended significantly.

For example, I get an autologous stem cell transplant (SCT), or I go on a multi-drug treatment, and achieve a "very good partial response" (VGPR) or even a "complete response" (CR). That may be followed by a couple of months of additional drug therapy, such as Velcade or Revlimid with dexamethasone (Dex), to "consolidate" my response and hopefully improve it even more. Then I would LOVE to go on a drug holiday for a while, but instead I start taking Revlimid at 10 mg/day, 21 days out of each 28 (example). According to one study, my chance of remaining free of disease progression for three years would be increased from 35% to 68% because I took the maintenance drug.

Speakers at the conference used words like "new treatment paradigm," implying that post-SCT maintenance will soon be the standard of care. Mostly they mean maintenance with low-dose Revlimid as a single agent.

Having thought it over, though, it may not be a simple choice for me. For instance, we know that the myeloma will eventually return in either case, so if I take Revlimid for maintenance, will I still have it available as a possible therapy later when the disease does come back? My very knowledgable friend says maybe so, because (1) the Revlimid dosage will be higher; (2) and it can be combined with other agents such as Dex and even melphalan or Velcade. I am skeptical, but neither of us is a doctor, and this question really did not come up at the talks. I sure do want to get the opinion of my Dr L.

Here are some pros and cons from my point of view.

Pro Maintenance

• A longer time before my tumor burden goes up and my doctor and I have to figure out a new plan. Just take the drug and don't think too much about it.
• More-frequent blood tests. These will be necessary to check for drug side effects, and in my view this is a pro rather than a con because the tests may reveal other problems, including disease progression, sooner than otherwise.
• A greater chance that a brand-new therapy will be available by the time I need it. How cool would that be!
• Maybe, but not for certain, a longer life. See below.

Pro Drug Holiday

• Regular, ordinary, high-quality life, including:
  • Freedom from the suffocating expense of Revlimid or whatever is my maintenance drug. This affects some people much more than others.
  • Freedom from the side effects. So does this.
• When the myeloma does come back, Revlimid may be fully available as my next therapy. It might be anyway, but I suppose more likely if the myeloma hasn't come back in the face of Revlimid maintenance.

The studies aren't mature enough yet to show an actual survival advantage for maintenance. It is possible that they will never show one because the myeloma will eventually return in either case, at which point other therapies will be tried, and some may succeed.

I am not actually facing this decision right now, and I invite you to comment if you are. Aw heck, comment anyway. :-)


Below: A slide by the lead researcher in the study of the drug that I am currently taking. I'm still receiving primary therapy, not maintenance.

By the way, Blogger was down for a day and just came up, so look farther down for posts that got stacked up in the interim.

Estrogen in Chicken and Beef

Japanese researchers presented a poster titled "Does dietary estrogen intake from meat relate to the incidence of hormone-dependent cancers? (1553)" Unfortunately, they did not answer their own question. They did measure estrogen levels in checken and beef from three countries, however, finding high levels of estrogen in USA chicken and beef. They summarized the work as follows, quoting directly from their abstract:

"The high estrogen concentrations in Japanese chicken, USA chicken, and USA beef have been attributed to the residue of external estrogen in the feed given to the livestock. The nearly zero level found in Japanese beef and Brazilian chicken is considered to be natural endogenous amount without estrogen supplementation. The estrogen levels in meat are much lower than those of contraceptive pills (0.035 mg/tab). Even so, when considering lifetime exposure to meat containing higher level of estrogen than human fat tissue, estrogen intake from daily meat consumption cannot be disregarded as a factor governing human health. Consequently, dietary estrogen intake from meat might promote estrogen accumulation in the human body and could be related to the incidence of hormone-dependent cancers."

Hmmm. The researchers did not say how they obtained the USA chicken and beef, but I suspect that it was not from organic sources. I do believe in buying only organic meat, or at least meat that is advertised "no added hormones." It may cost more, but cancer is a real bummer.

Some of the 30,000 people at ASCO:

Complementary Treatments and Therapies

I believe that we can improve on the treatments offered by conventional medicine. In particular, I believe a healthy lifestyle with the best possible food, plenty of aerobic and resistance exercise, good sleep, and freedom from excessive stress. Beyond that are naturopathic therapies and supplements which might help against the cancer, or especially against the side effects of the cancer or the drugs.

Several papers at this year's ASCO meeting dealt with such complementary therapies, which apparently can improve both the cancer outcome and the patient's quality of life. These are scienfific studies by serious researchers at well-known medical centers, with the papers approved by ASCO's review committee. One of those, a study at MD Anderson, determined that as many as 54% of patients use complementary or alternative medicine in some form. (9091). None of studies below are specific for myeloma patients, but they might to be applicable to anyone in cancer treatment:

• Neuropathy:
  • A study of topical menthol for treatment of peripheral neuropathy concluded that two thirds of patients with long-term neuropathy experienced an improvement in pain and function. (9129). I'm thinking it would smell good too.
  • Another study, of electrostimulation with a machine called the MC5-A Calmare therapy device, seemed to show that it "appears to dramatically reduce pain in refractory CIPN (neuropathy) patients with no toxicity." (9029). For a few patients, pain was reduced to zero after ten daily treatments. Normally I would be skeptical of such a study with a specific machine, wondering about the objectivity of the authors. They do not report any conflicts, though, so maybe it's worth a try. But I wouldn't buy the machine - better to find a therapist who already has one.
  • There is no rule saying that a person in pain can't try both of these, along with the other naturopathic remedies that are out there.
  
  
• Fatigue:
  • Guarana is a plant native to the Amazon basin that has been used as a stimulant since pre-Columbian times. Patients in a Brazilian cancer center were given 50 mg of guarana extract twice daily, and the researchers reported "Guarana is an effective, cheap and nontoxic alternative for the treatment of fatigue in breast cancer patients receiving systemic chemotherapy." (9007).
  • Rochester researchers studied 410 survivors of many different cancers and found that "YOCAS yoga intervention significantly improves sleep quality, fatigue, and quality of life while reducing sleep medication use among survivors." (9013).
  • The Bangalore Institute of Oncology studied 66 metastatic breast cancer survivors and concluded "The results offer preliminary support for stress reduction benefits of yoga intervention. However larger randomized controlled trials are needed to validate these findings." This study even found that yoga increased the number of NK (natural killer) cells, suggesting a possible clinical benefit beyond just quality of life. (9099).
  
  
• Actual Therapy (this is probably not "complementary" but an interesting use of an inexpensive natural substance): Mistletoe extract. A consortium of cancer centers studied 44 patients with a variety of advanced solid tumors (breast, prostate, ...) using a combination of mistletoe extract (EMEX) with a drug called gemcitabine (GEM), concluding "The EMEX/GEM combination demonstrated limited toxicity, no alterations of GEM Cp during infusion of EMEX, clinical benefit in 48% of patients, good tolerability and excellent EMEX compliance. Addition of EMEX may allow for use of higher doses of GEM and increase the (minimum neutrophil count)." (2559). Note that the work was done with solid tumors and may have no application to myeloma.

(2559) NCCAM/NCI phase I study of mistletoe extract and gemcitabine in patients with advanced solid tumors.
(9007) Effect of guarana (Paullinia cupana) on fatigue in breast cancer patients undergoing systemic chemotherapy.
(9013) Effect of YOCAS yoga on sleep, fatigue, and quality of life: A URCC CCOP randomized, controlled clinical trial among 410 cancer survivors.
(9029) Pilot trial of a patient-specific cutaneous electrostimulation device (MC5-A Calmare) for chemotherapy-induced peripheral neuropathy.
(9091) The use of complementary and alternative medicine in patients seen in phase I clinical trials program.
(9099) Role of yoga in modulating fatigue, sleep disturbances, salivary cortisol, and immune measures in breast cancer survivors: A randomized controlled trial.
(9129) Treatment of chemotherapy-induced peripheral neuropathy (CIPN) with topical menthol: A phase I study.

Signs Of The Times

Just a few signs I saw as I ran along Chicago's lakewalk and riverwalk this morning:









By the way, I highly recommend Cancer Girl's blog, especially right now since she is at ASCO too. She's funny and insightful. We met her and her runner husband yesterday and were delighted.

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:

Older Patients Are (almost) Like Anyone Else

The standard of care for newly-diagnosed older patients (60 and over - is 60 elderly?) has been treatment with melphalan and dexamethasone (DEX), especially in Europe. The "novel" drugs, thalidomide, Revlimid, and Velcade have not been used for older patients as much as they might, because there was no data showing that they were safe and effective for older patients. (Are they safe and effective for anyone?) By the way I'm 69, so this is a subject dear to my rickety old heart.

Today I saw a poster discussion titled "Elderly patients with lymphoma and myeloma can effectively participate in clinical trials of novel agents." Duh. Also, a recent Italian study shows that Revlimid added to melphalan and DEX improves the response rate and probably the overall survival. Further, when Revlimid was added as maintenance, the progression-free survival was significantly enhanced over melphalan and DEX alone. Another trial showed a similar advantage when Velcade was added to melphalan and DEX instead of Revlimid. Just like regular folks.

Some precautions may be necessary. Researchers have developed several different procedures for assessing a patient's physical and functional capacity. They find that function (ability to live independently) is an independent predictor of survival. Other serious health problems (heart, diabetes, etc.) also predict poor survival.

Some nuggets from a session titled: "Geriatric Oncology: The older Cancer patient":

• "Cure" means to live long enough to die of something else.
• Many older patients have five or more OTHER serious illnesses.
• Older patients do not necessarily experience higher toxicity from novel drugs.
• One speaker said we need more studies, and then "Please hurry - I'm aging fast!"
• "Older" means 60 to 79. No one even thinks about people over 80. You're on your own.
• Yet the median age for newly-diagnosed patients is about 65 (I think, my comment).
• For patients over 75, use reduced dosages, e.g. thalidomide 50 mg instead of 100 or 200.
• For relapsed/refractory patients, try all of the approved drugs, and when all else fails, put them on a trial! (Just like anyone?).

So, if the definition of cure is to live long enough to die of something else, then we most-mature adults have a much greater chance of being cured. Celebrate that!


Lunch aboard Amtrak: Spinach salad with cold salmon. Tasty, healthful, and served graciously. About $9.00.

ASCO Headline: Maintenance Works

And so does consolidation. This may be the most important new information for myeloma patients this weekend.

ASCO is the American Society of Clinical Oncology, currently holding its annual meeting at McCormick Place in Chicago, 30,000 strong. I am here as a guest of the International Myeloma Foundation (IMF), to observe the information presented by the many speakers, and to blog about it from the perspective of an ordinary patient. Yay for the IMF! And thank you. I love this stuff. But be advised: I am not a doctor, just an engineer. You should get your medical advice and even your facts from your doctor.

The ASH (American Society of Hematology) conference a half-year ago suggested that maintenance works, and ASCO confirms it. What is it?

• Consolidation is a drug therapy given AFTER a stem cell transplant (SCT), to further reduce the tumor burden.
• Maintenance is administration of a drug (Revlimid, Velcade, ...) for a long period AFTER a good response has been achieved from an SCT or other therapy, to keep the ugly buggers down.

I attended a session titled "Expert Perspectives in Individualized Treatment of Hematologic Malignancies" (yikes - what was I doing there?). Dr David Vesole of Hackensack University spoke on "Updates on Innovative Treatment for Newly Diagnosed and Relapsed/Refractive Myeloma. More about that in another post.

Consolidation:

Dr Vesole cited two different studies, one using Revlimid and another using Velcade, both showing a significant advantage for consolidation. In the revlimid study, two months of Revlimid increased the percentage of patients showing a very good partial response (VGPR) or better from 58% to 70%. In the other study, Velcade was started at three months after the SCT, and continued for six months. After those nine months, 49% of the patients taking Velcade were still in near-CR or better, contrasted with 33% of the control group.

Maintenance:

The brand-newest papers on post-SCT maintenance have not been presented yet, but the abstracts are available. As Dr Durie of the IMF has pointed out in a press release dated yesterday, the new studies may influence doctors toward continuing therapy (maintenance) as a means of preventing or delaying relapse. The study results are quite clear: maintenance works. One study was "unblinded," in fact, because those on the Revlimid maintenance arm were doing so much better than those on placebo. I will attend these sessions, and will report on them if I learn anything beyond what is in the abstracts.

What does this mean for us?

Unfortunately, it's both sweet and sour. In many cases, we should probably NOT enjoy a drug holiday after achieving stable disease from an SCT or other means. Instead, going on maintenance, we will incur: (1) side effects of Revlimid or Velcade; (2) the cost of those drugs, and (3) the nuisance of taking the pills or getting the infusions. But we may likely enjoy a longer period before relapse and quite possibly a longer life. Life is good - I'm in favor of it.

What about those who are already on a drug holiday? Should I start now? Is it too late to start? Ask your doctor - I don't think the studies answer that question.

Myeloma Is Not a Chronic Disease

This post is a respectful tribute to Elizabeth Redman, who died yesterday, June 1, 2010, way too soon.

In the last year or two we have heard hopeful words about turning myeloma into a chronic disease, especially for low-risk patients, and with the "novel" treatments like Revlimid, Velcade, and the other drugs currently in trials.

BUT WE ARE NOT THERE YET, not even close. With the best of care, many of us are still dying. This is my own little list of people that I have known personally, face-to-face, mostly from support groups in Minnesota:

• Elizabeth Redman, 2010
• Elijah Alexander, 2010
• Donna Costello, 2010
• Gene Early, 2009
• Helen Berg, 2009
• Ken Meister, 2008
• Mike Ohara, 2007
• Joyce Momont, 2006
• Donna Penrose, 2005

No doubt each of us has such a list of friends who have gone.

The point? We can't let up. New drugs like pomalidomide, carfilzomib, and the monoclonal antibodies can't come fast enough.

Stay tuned for news from ASCO, the annual meeting of the American Society of Clinical Oncology.

Disappointing Test Results

Thursday, May 27, was the end of Cycle 29 of my pomalidomide (CC-4047) trial at Mayo Clinic. Unfortunately, my IgG and M-spike were both up about 10%, which is not good news. Every myeloma regimen fails eventually, and this could signal the end of my rather easy ride on pomalidomide. Furthermore, the neutrophil count is 920 (tiny buggers per microliter) and if it stays below 1000 I can't continue on the pomalidomide study until it goes back up. Otherwise, in theory at least, I'm a little too vulnerable to bacterial and fungal infections.

Neutrophils:

My Mayo blood draws are usually ay 6:30 am, and the neutrophil count was below 1000 at the end of both of the previous two cycles. In an afternoon blood draw a few days later, in both cases, the count had jumped up well above 1000 and I was able to continue on the study. This time, though, I was heading out of town to run a marathon, so we did another blood draw at Mayo before I left, still in the morning but not so early, hoping that it would show 1000 or above. But the vaunted Mayo Clinic screwed up! They did the CBC, but failed to do the differential which shows the actual absolute neutrophil count. By the time we discovered this, the test could not be repeated and we were almost halfway from Minnesota to Idaho. So the next day we stopped in Billings, MT, and had blood drawn there. I do not yet know the results of that CBC, so I can't be sure of continuing on the study. I'll assume the best unless I hear from Mayo.

Genistein:

I have been taking genistein, a soy isoflavone, throughout the pomalidomide trial, about 50 mg/day. It is supposed to have some anti-cancer effects by "supporting" the immune system. However, since myeloma is a cancer OF the immune system, there is a question whether it should be "supported," and in addition there are other questions about any estrogen-simulating supplement. So I decided to stop it for a cycle, to see what might happen to IgG and M-spike. I guess I got my answer. Back on genistein!

Hand Infection:

Three 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. It has healed very slowly, but it's almost better now.

Some current test results:

Test		Mar 04		Apr 01		Apr 29		May 27		Remarks
M-spike g/dL		1.0		1.0		1.0		1.1		Best tumor measure
IgG mg/dL		1130		1070		1010		1110		Variation is normal
L FLC mg/dL		2.10		1.82		2.41		2.58		L Free light chains
Calcium mg/dL		10.1		9.8		9.7		9.9		Below 10.2 is best
Creat mg/dL		1.0		1.2		1.3		1.3		Kidney, normal
HGB g/dL		14.2		14.7		14.6		14.1		Hemoglobin, normal
RBC M/uL		4.17		4.39		4.21		4.36		Red cells, normal
WBC cells/uL		3400		3300		3300		3600		White cells, low
ANC cells/uL		1290		940		730		920		Neutrophils, LOW!

ASCO Conference:

I have been invited to attend the annual meeting of the American Society of Clinical Oncologists next week, and I will be blogging in "real time" about the presentations that I see there. Here are a few of the topics that seem interesting to me:

• Studies of Carfilzomib, a Velcade-like drug which has far fewer side effects;
• Post-transplant maintenance therapy with Revlimid or another drug, versus no maintenance. We're going to hear that maintenance prolongs lives!;
• Denosumab versus Zometa for bone problems;
• More about pomalidomide (when will they get this FDA approved?);
• Doxil, Velcade, and dexamethasone as front-line therapy; and
• LOTS more. I can't hope to cover it all.

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.

I haven't had time to update the charts, test results table, and other documents (see links above) that go with this post, but wanted to get this posted now while I have a few minutes. I'll get around to the rest later, but there is really not a lot of change except the increase in IgG and M-spike.

P.S. June 2, 2010: The blood test (CBC) at Billings Clinic showed 1890 little guys per microliter (how can it go up that much from 920 in one day?) so I'm still on the study!

Breakfast:

Mom Is 100!

MY MOM IS 100 TODAY!

We had a heckuva party over the weekend, people coming to Minnesota from as far away as California. She's lovely, and I'm so proud of her. Go MOM!

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:

Minnesotadon Is Now on Twitter

Big deal. I'm not yet sure why, actually. I used Twitter for the first time on Monday, April 19, to keep track of the Boston Marathon. I liked that. Then I found out how to have the title and first few words of each new blog post sent to Twitter, as if I had "tweeted" it.

We'll see what comes of this. Twitter seems to be a good way to keep track of people if both are on-line and on Twitter, or if one is on Twitter and the other one posts to a blog. Otherwise, email might be better.

Pomalidomide Side Effect?

Pomalidomide keeps my cancer stable, but has significant side effects:

• Bradycardia (reduced heart rate). This doesn't bother me, but it does some people.
• Blood clots. These can appear as deep vein thromboses (DVTs) or pulmonary embolisms. They are life-threatening, but I haven't had one. I do take an aspirin a day.
• Peripheral neuropathy. The bottoms of my feet are numb in some places, and I have one thumb that tingles. From what I hear, my neuropathy may be fairly typical.
• Neutropenia, which is a low neutrophil count. Neutrophils are a major front-line fighter in the immune system, and without them we cannot easily fight off infections.

And I have an infection. At least four weeks ago, I apparently whacked the back of my hand against something, possibly outdoors working on a tree that we removed and cut for firewood. A bruise appeared, and a red circle around a tiny puncture. In the ensuing weeks the infection spread to three knuckles and the tissue between them, now overtaking most of the back of the hand and causing enough swelling to make it quite impossible to close the hand.

We've tried three different kinds of antibiotics in those weeks, with varying results. None of them reversed the infection, but one or two may have halted or slowed its advance. The one that may have worked the best, Biaxin, was stopped because liver enzymes appeared to go up, one of the risks of Biaxin. Now my local primary care physician, Dr LL, has me on a fourth antibiotic, doxycycline. We'll see how that goes.

Neutrophils may be important here - we really don't know HOW important, because we don't yet know the type of bacteria or fungus causing the infection. People with normal immune systems also get infections, but I sure haven't had one like this before. If necessary, we can stop the pomalidomide for a week and still remain on the study. But the myeloma is stable now, and I really don't want to mess that up!

Otherwise, though, life is wonderful. We three ran another marathon last Saturday.

The News Is All Good

Stable M-spike and other cancer markers - see the latest post about that.

Neutrophils:

Last Thursday, April Fools Day, the Mayo Clinic lab reported my neutrophils at 940/uL, well below 1700, the bottom of the reference range, and even below the cutoff of 1000, where the pomalidomide trial protocal calls for a reduction in my dosage of pomalidomide. So we re-tested today, at Stillwater Medical Group, and got a count of 1500/uL. That's good - Mayo already called and told me I could stay on the protocol.

But I'm quite surprised that the neutrophil count can jump up that much in just four days. I heard that the count can be improved by exercising before the blood draw, so I did some pushups, a few flights of stairs, and some runner's stretches before heading off to the clinic. But even if that helped the count, is it a true indicator of "neutrophil power" or did it just improve the count temporarily? Your guess is better than mine.

I run about four days a week, but lately haven't been doing any deliberate exercise the other three. If exercise really does help with the neutrophil count, then perhaps I should start every day with a little exercise. Yard work is good!

Liver Enzymes:

• AST: Apr 1 Mayo Clinic 85, range 8-48; Apr 5 Stillwater 27, range 0-40. Down to normal in just 4 days.
• ALT: Apr 1 Mayo Clinic 112, range 7-55; Apr 5 Stillwater 60, range 8-58. Not quite down yet, but close.

I've had liver enzymes go above the reference range before, and then drop right back down to normal the next month, so I wasn't too worried, though this was the highest they've ever been.

I have a theory about why they were high. AST and ALT are enzymes that are produced by the liver when it is injured, but they can also be produced by injury to muscle and maybe even other tissue. When the blood was drawn at Mayo, I had a bruise and an infection in one hand, the same arm from which the blood was drawn, in fact from a vein that takes blood back from the tissue around the injury. Could the enzymes actually be coming from the injured hand? When I suggested this to local Dr L, my primary care physician (PCP), he didn't even laugh out loud. He didn't agree, but he didn't reject the idea either.

Anyway, the injured hand is getting better, if very slowly, and this time I had the blood drawn from the other arm.

Bisphosphonates:

Mayo suggested, though not too strongly, that I might want to start taking alendronate (generic Fosamax) to reduce the risk of breaking a bone, which would likely put an end to my running. But there are risks and possible side effects, some serious. Local Dr L and I discussed this at some length. My T-scores range from -1.1 to -1.7, mild to moderate osteopenia (not osteoporosis). I have no family members with broken bones, or any other risk factors except two years of steroids (dexamethasone). The normal guidelines would not call for treatment at this time. Myeloma is not normal, however, it breaks the rules and sneaks up on us. Dr L thinks we should deal with this by checking the density at least once per year.

For now, no bisphosphonates. I'm OK with that.


Oatmeal underneath, pineapple, papaya, blueberries, kiwi, mango, really big strawberries, kefir, walnuts. Mostly organic.