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:

Itty Bitty Snowstorm

We three headed off to Rochester for my every-28-day early-morning blood draw at Mayo Clinic, part of the Phase II pomalidomide study. Highway 52 was dry and clear of ice, until suddenly we found ourselves in a snow squall at 65 mph. Traffic slowed, the road was wet, the flying snow swirled in our headlights. Then, in less than a minute, the snow disappeared again, giving way to a clear, starry sky. Why? During that little storm we passed by a refinery, and apparently the zero-degree air was turning the refinery's abundant water vapor exhausts into a local micro-mess for travelers. I've never seen that before. I don't mind if I never see it again.

Cancer Markers:

The Mayo visit went OK, the end of the 37th 28-day cycle. After a 6:30 am blood draw I was scheduled for a 3:15 pm visit with Dr L, but got in to see Dr KDS (yes, she's still here!) instead at about 10:15, which got us home hours ahead of the original schedule.

Test results, however, were no better than so-so. IgG went up about 8%, from 1080 to 1170 mg/dL, and M-spike skyrocketed 20% from 1.0 to 1.2 g/dL. Converting units, this puts M-spike at 1200 mg/dL, which is a physical impossibility because M-spike is the monoclonal (bad) part of IgG and therefore must always be lower than IgG. So which measurement is wrong? I'm of the opinion that IgG, measured by immunofixation, is more accurate than M-spike, measured by electrophoresis, so I'll take that IgG value. In fact, I think that Mayo's M-spike measurements have always been high. When I changed from Minnesota Oncology to Mayo three years ago, my M-spike jumped up 32% even though IgG sat still. I don't know which is wrong, MOHPA or Mayo, but there is certainly something fishy today. Anyway the cancer markers are up a little, but they do bounce around, and I don't need to get my shorts in a twist about it.

Calcium and Creatinine:

Dr KDS is just a little concerned about calcium at 10.3 mg/dL and creatinine at 1.4 mg/dL, both slightly above the reference range. Calcium has been that high before, but creatinine, which is a measure of kidney function (malfunction?), has never been quite so high. She gave me an order to have those tested again in a week, at the local clinic. She couldn't think of a medical reason why BOTH calcium and creatinine would go high at the same time. Vitamin K2 helps calcium to deposit in the bones instead of circulating in the blood, and I had been out of it for a couple of weeks, so I'll take that for the calcium and lots of water for the creatinine and see if those numbers go down.

Neutrophils:

Pomalidomide drives neutrophils down, including mine. If they go below 1000 cells per microliter, I have to go off the study, at least until they come back up. As in recent months, I had neutrophils checked (CBC with Diff) the day before the Mayo visit, in the afternoon at the local clinic, instead of in the morning at Mayo when all of the other blood tests are done. At 1:00 pm on Wednesday, neutrophils measured 1800, well above the threshhold and actually into the "normal" range. Unknown to me, though, Mayo had accidentally scheduled another CBC, to be done with the other tests at 6:30 am Thursday. Since it was the more recent test, it would override the previous test if it were under 1000. Happily, it was 1190. Note, though, that the afternoon neutrophil count was 51% higher than the morning count. I also do some vigorous exercises just before the blood draw, because adrenaline helps too. These are not tricks - the neutrophils are real - they just hide in the morning. It doesn't work for everyone, I'm told, but it's working for me.

Some Current Test Results:

Test		Oct 20		Nov 18		Dec 16		Jan 13		Remarks
M-spike g/dL		1.1		1.2		1.0		1.2		Best tumor measure?
IgG mg/dL		1130		1300		1080		1170		Best tumor measure?
L FLC mg/dL		2.78		2.92		2.41		2.49		L Free light chains
Calcium mg/dL		10.0		10.3		9.8		10.3		Slightly high
Creatinine mg/dL		1.0		0.9		1.0		1.4		Kidney, high
HGB g/dL		14.9		15.0		14.6		15.3		Hemoglobin, OK
RBC M/uL		4.31		4.26		4.23		4.48		Red cells, marginal
WBC K/uL		4.3		5.9		5.1		3.3		White cells, OK
ANC K/uL		2.14		2.30		2.50		1.19		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.

Recent breakfast, oatmeal on top. Frozen organic blueberries and strawberries, fresh kiwi, organic walnuts, organic kefir (tastes better than yogurt):

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.