Celebrating Four Years on Pomalidomide

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

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

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

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

Doctor L:

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

Most-Recent Test Results:

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

Related Links:

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

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

Boring Mayo Clinic Visit

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

Dr RH:

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

The Evolution of a Myeloma Recurrence:

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

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

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

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

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


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

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.

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.

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:

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:

April Fools Test Results

Thursday, April 1, was the end of Cycle 27 of my trial of pomalidomide (previously CC-4047). The cancer has been declining or stable for more than two years now, and it was again Thursday. M-spike is still 1.0 g/dL, and IgG is down slightly, indicating that the M-spike value is probably correct. So that's good - wonderful even. Worth a celebration!

But some of the other test results are strange.

Liver Enzymes:

The reference range for AST is 8-48 U/L, mine was 85. The range for ALT is 7-55 U/L, mine was 112. They have been out-of-range high before, but not this high. Two possible explanations: (1) I had taken Biaxin, an antibiotic, to treat an infection in my hand, for the three days prior to the blood draw. Liver injury is a possible side effect of Biaxin; and (2) Muscle injury can also raise those enzymes, and I had run pretty hard on Tuesday, which always damages muscle a little bit. No doubt there are more possible explanations that I don't know about.

Dr KDS switched me to Keflex (cephalexin) to deal with the chance that Biaxin is the problem. And my primary care physician (PCP), the local Dr L, will recheck the liver enzymes on Monday.

Neutrophils:

Dexamethasone (DEX) actually helps support the neutrophil count. Since I've discontinued DEX, neutrophils have trended downward. Last month they were 1290 per uL, this month 940. That's a surprisingly big drop. The myeloma doctors don't want it to go below 1000, so if it stays down there we will have to reduce the dosage of pomalidomide, probably by stopping the treatment altogether for seven days out of each 28. For obvious reasons, we don't want to do that.

We know that other stuff is going on, though. I have a hand infection, I'm taking antibiotics, liver enzymes are high, so PCP Dr L will also recheck neutrophils on Monday. Then we'll worry about the pomalidomide dosage.

Free Light Chains:

Lambda light chains decreased from 2.10 to 1.82 mg/dL, which by itself sounds good. However, Kappa light chains plummeted from 1.06 to 0.27, and the ratio therefore went down from 0.50 to 0.15. Since Lambda and Kappa measurements tend to move together, the sharp decrease in the Kappa value calls the Lambda value into question. I can't make any sense of this. I'm hoping that the Kappa result is just wrong. Wacko. We'll see next month.

Red Blood Cells:

My red blood cell count has been below the bottom of the reference range every month but one since the start of the pomalidomide trial. This time it's just above the bottom, into the normal range, and hemoglobin is up too. Hurray! I have noticed that I can run a little faster too- maybe that's why.

Other Discussion with Dr KDS:

• Bone Density: Dr KDS had looked at last month's DEXA scan and told Dr D, a Mayo bone-health specialist, that my myeloma is under control but that I am a runner and a fracture would be devastating (like it wouldn't be for anyone!). My densities are:
  • Femur necks: T-score is -1.1, indicating mild osteopenia. Density for each is about 0.93 g/cm(sq). This is down about 3% from 2003, though Dr D didn't know about previous scans.
  • Lumbar spine: T-score is -1.2, indicating mild osteopenia. Density average for L1-L4 is 1.08 g/cm(sq). This is down about 4% since 2003, also unknown to Dr D.
  Dr D suggested Fosamax (alendronate) 70 mg per week, for not more than five years.
• I have a lot of faith in my PCP Dr L, and told Dr KDS that I would discuss this with him and get the prescription from him if he recommends it. Another topic for Monday.
• I took chlorophyllin this month, a new supplement, to help boost neutrophils. Since it didn't seem to do any good, and some other results are screwy, we agreed that the chlorophyllin would be stopped right away. Done.
• I am still taking naproxen sodium (Aleve) 220 mg once daily, to deal with headache and because there is a small chance that it will have some anti-myeloma effect, as Celebrex seems to have. Dr KDS had no problem with this.

Bisphosphonates for Myeloma:

Mayo Clinic and other medical institutions are backing away somewhat from the use of IV bisphosphonates, prescribing Aredia instead of Zometa and limiting the treatment to two years or so. And here you see a recommendation for an oral bisphosphonate (Dr D above) where an IV drug would have been prescribed just a year or two ago. Bisphosphonates remain in the bones for many years, and there is some evidence that overuse can lead to brittleness because the bones cannot renew themselves in the normal way.

Bone doctors estimate the probability of a broken bone with a formula called FRAX. When I put my numbers into the FRAX Calculator, I get a 6% risk of any fracture over the next ten years, and a 1% risk of a hip fracture. That's pretty low, not much above the risk for the general population. But FRAX is optimistic for a myelomiac, because myeloma tends to cause bones to weaken more rapidly than normal, especially in areas where myeloma lesions form. It will be an interesting discussion with my PCP Dr L.

Mayo Clinic Results Are On Line:

If you have ever been a Mayo Clinic patient, you can go HERE to log on and view results. I don't know how far back the results go, but mine are there from my initial treatment at Mayo in March, 2008. Not every result is there - a recent electrocardiogram is missing - but all of the normal (even abnormal) labs are there. You will have to get set up to log in and view your results, though, which involves mailing in a notarized form. Or you can sign up in person at your next appointment.

Some current test results:

Test		Jan 07		Feb 04		Mar 04		Apr 01		Remarks
M-spike g/dL		1.0		1.0		1.0		1.0		Best tumor measure
IgG mg/dL		1110		1180		1130		1070		Variation is normal
L FLC mg/dL		2.18		2.78		2.10		1.82		L Free light chains
Calcium mg/dL		9.6		9.8		10.1		9.8		Below 10.2 is best
Creat mg/dL		1.1		1.1		1.0		1.2		Kidney, normal
HGB g/dL		14.4		14.2		14.7		14.6		Hemoglobin, normal
RBC M/uL		4.05		4.00		4.17		4.39		Red cells, normal
WBC K/uL		3.5		3.8		3.4		3.3		White cells, low
ANC K/uL		1.38		1.22		1.29		0.94		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.

Oatmeal underneath, of course. Huge organic strawberries, blueberies, kiwi, walnuts, and organic kefir.

March 4, 2010, end of Cycle 26:

Two years ago this week, I started on a trial of the new drug pomalidomide (then called CC-4047) with dexamethasone (DEX). Within a few months my M-spike was down from 2.7 to 1.0 g/dL, where it has remained since, going as low as 0.8 and as high as 1.1. Pomalidomide is good stuff. It seems to produce a response in most myelomiacs, including many for whom other treatments have failed to work. I do hope that Celgene and the FDA can get together quickly and get it approved.

I am currently taking only two prescribed drugs: (1) Pomalidomide, 2 mg per day; and (2) Aspirin, 325 mg per day. I would also take acyclovir to ward off shingles, but acyclovir is hard to get right now.

M-spike was unchanged at 1.0 g/dL at the end of this 28-day cycle. IgG was down 4% at 1130 mg/dL, which is probably good - IgI varies. Lambda free light chains (FLCs) are down a surprising 24%, yet Kappa FLCs are up, suggesting that the Lambda decrease is genuine. I'm not sure what the decrease in Lambda means, but it can't be bad. Total white cell count was 3.4 K/uL, down slightly to the lowest value I've ever had, just below the bottom of the reference range. But the white count bounces around, and neutrophils even went up a little, so we'll just watch it.

At worst, the tumor burden appears stable, despite discontinuing DEX three cycles ago, and at best it may have decreased just a little. Furthermore, neutrophils have stopped their downward slide. I'm a happy camper.

Dr L also ordered a bone-density (DEXA) scan this time. The result for the lumbar spine, vertabrae L1-L4, is a decrease in absolute density of 2% compared with another scan 2 1/2 years ago at a different facility. I'd rather it was an increase, but there could be that much variation between machines, and I'll take it. Results for the femur are less clear to me, because the previous facility reported only one value for femur, and Mayo reported two, called "femur neck" and "total hip." If the "femur neck" value is comparable to the femur value from the previous report, then density actually went up by about 5%. This is possible, because Vitamins D3 and K2 are known to strengthen bones, and I take them very regularly. In any case I still have osteopenia, but not osteoporosis, and I hope to discuss this more with Dr L.

Differences this cycle:

• Dr L ordered 3 days of Biaxin at the beginning of the cycle. More about that below.
• My 30-year chronic headache has started to return, now that I'm off DEX, and I took a capsule of naproxen sodium whenever the headache reminded me, once every day or two. Two years ago, not long after the trial started, the decline in M-spike gradually leveled off in the same months that I gradually stopped using naproxen. Was there a cause and effect? Since Celebrex (celecoxib), a similar NSAID, is thought to have a modest anti-myeloma benefit, it is possible that naproxen might also. In my amateurish and hopeful opinion, it is even possible that pomalidomide and naproxen might be synergistic. If so, we'll take advantage of it.
• I started taking a new supplement, sodium copper chlorophyllin, one week before the blood draw. A recent article in Life Extension Magazine suggests that chlorophyllin may support neutrophil counts during chemotherapy. My neutrophil count did stop falling this time, actually going up slightly from 1.22 to 1.29 K/uL. Neutrophils bounce around a lot however, in response to bacterial threats in the body, so this is not very significant.
• We ran another marathon eleven days ago. I've never noticed that a marathon affects the myeloma results, though.

Discussions with Dr L:

• Biaxin (clarithromycin) is known to potentiate the combination of DEX and an IMID drug, such as Revlimid or thalidomide, and probably pomalidomide. Biaxin is no help by itself, and no one knows whether it would work with ONLY the IMID drug, without the DEX. Dr L prescribed a three-day course of Biaxin a month ago, to prevent a minor skin injury from becoming a major infection. Could those three days of Biaxin have helped the pomalidomide work on my tumor burden, even though I'm not taking DEX, and even though only three days?
• She looked at the skin injury, now just a red spot, and thought it was healing rather slowly. In contrast, I thought it was healing fairly quickly compared with similar, prior experiences on DEX.
• I asked if neutrophils are important to warding off shingles, since my neutrophils are slightly below the bottom of the reference range. She said no, that neutrophils attack bacterial infections, and lymphocytes are more important for shingles and other viruses. Happily, my lymphocytes are smack in the middle of the reference range.
• Somehow the subject of Velcade came up, and she expressed the opinion that Velcade might not be in my short-term future, even if pomalidomide begins to fail, because the twice-weekly infusions and the attendant neuropathy would mess up my very-active lifestyle. I didn't mention that I would prefer once-weekly infusions, and by the way whose lifestyle is NOT messed up by Velcade infusions? I was happy with her patient-centered concern though. Anyway the discussion of the NEXT treatment after pomalidomide seems farther off now that it did a cycle ago.
• I don't recall how this came up, but at one point Dr L said that in a given instance there may be a choice between any of several treatments, all of them good, none of them wrong. Anyway that's what I thought I heard - there may not be a BEST choice.
• I had a bone-density (DEXA) scan this time. When the results of the scan were unknown, I mentioned to Dr L that if a bisphosphonate is indicated, I have a very strong preference for oral rather than IV. To my surprise she agreed wholeheartedly, saying that new information is coming out indicating that myeloma doctors may be over-treating with the IV meds (Aredia and Zometa). The half-life of those bisphosphonates in the bones is 10 years (or did she say 20 years). Too much bisphosphonate may stop the bones from losing density, but the bones may not regenerate themselves. Instead they become brittle and subject to fracture, especially the femur near the hip. Mayo will be coming out with a modification of their mSMART protocols, which may include oral bisphosphonates. At least three different oral bisphosphonates are available, and she wasn't yet sure which she might prefer for me. I think I'd also consult with my primary care physician, my other Dr L, who has a lot of experience with oral bisphosphonates.

What's Next:

I've been taking curcumin 8 g/day, sixteen capsules, and I'm tired of doing that. I might even say I hate it. Curcumin could be helping, but I have little evidence, so I'll stop it and see what happens. Quercetin too. I'll go back to one 500 mg capsule of curcumin per day, and no quercetin, reducing my daily consumption by 23 capsules. Yay!

The chlorophyllin supplement is new, and I will continue that, to support the neutrophils and because it is a good anti-mutagenic agent. I will also take one naproxen capsule per day. I use the liquid type, in the hope that it will be less likely to burn a hole in my innards as some NSAIDs can do.

Some current test results:

Test		Dec 10		Jan 07		Feb 04		Mar 04		Remarks
M-spike g/dL		0.9		1.0		1.0		1.0		Best tumor measure
IgG mg/dL		1090		1110		1180		1130		Variation is normal
L FLC mg/dL		2.36		2.18		2.78		2.10		L Free light chains
Calcium mg/dL		10.0		9.6		9.8		10.1		Below 10.2 is best
Creat mg/dL		1.1		1.1		1.1		1.0		Kidney, normal
HGB g/dL		14.3		14.4		14.2		14.7		Hemoglobin, normal
RBC M/uL		4.00		4.05		4.00		4.17		Red cell count, low
WBC K/uL		3.7		3.5		3.8		3.4		White cells, low
ANC K/uL		1.55		1.38		1.22		1.29		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 Supplements		With links to where I buy them.

Leftover organic chicken or turkey, baked organic sweet potato slices, organic broccoli, jalapena tomato sauce.

When The Receptionist Knows Your Name

January 7, 2010, end of Cycle 24:

You know you're battling cancer when the receptionist at the Mayo Clinic Hematology desk knows your name as you walk in. Happened Thursday.

24 cycles of the pomalidomide (CC-4047, Actimid) study are complete, and it's been a great ride. Not over yet, but Thursday was a hint that it might be over before long. Or was it a hint? The worst news, really, was that M-spike went from 0.9 to 1.0 g/dL. I stopped dexamethasone (DEX) completely for this cycle, the first cycle without it, and M-spike inched up. Maybe. Although M-spike tracks the tumor burden most closely, it is not especially accurate, and IgG only went up a little, from 1090 to 1100 mg/dL, so maybe it didn't really change. IgG is a measure of ALL immunoglobulins, including the monoclonal ones that make up M-spike, so if M-spike goes up by 0.1 g/dL, then IgG has to go up by 100 mg/dL, all else being equal. So I don't know whether to cry in my beer or not. I guess I'll just drink it.

I did try to stave off an increase, with curcumin 8 grams per day and quercetin 4 grams per day during this cycle. Did they help? No way to know, but if they did, they didn't help enough to send M-spike southward. I've also taken ashwagandha for three cycles now, one capsule per day, and I think I'll probably stop that because it made no noticeable improvement for any of the three cycles. I'll keep taking the curcumin and quercetin for another cycle, on the theory that M-spike might have been worse without them.

The other bad news is that my neutrophil count has dropped to 1.38 K/uL, its lowest level ever and well below the bottom of the reference range, which is 1.70 K/uL. Further, my white cell count (which includes neutrophils) confirms this, dropping by just about the same amount. This is one of several possible pomalidomide side effects. I had thought I was immune to this problem, but now that I look closely, both of these numbers have edged downward during the 24 cycles. They bounce around a lot, because neutrophils and other white cells respond to microbial threats in the body, but the trend line tilts slightly downward, as indicated by the blue dots in this chart.

It's possible that those white counts are down partly because my body just hasn't encountered any threats lately. Somehow, I successfully navigated all of the Christmas and New Year's parties, plus a grandson visit, without catching anything. Whatever the reason, however, without sufficient neutrophils a person could develop a life-threatening neutropenic fever, so the pomalidomide study requires a neutrophil count of at least 1.00 K/uL. To keep the count high enough the regimen can be changed, from pomalidomide every day to three weeks on and one week off. If that isn't enough, there may be another way to reduce the dosage, perhaps taking the 2-mg capsules every other day, though we didn't discuss that. Getting ahead of myself here.

Running seems to be going a bit better without the DEX. Dr KDS says that it may take a couple of months for the DEX effects to wear off entirely. I do notice that a small open skin scrape on one ankle has healed over since stopping the DEX, and other little skin injuries heal faster too. I imagine that the microscopic muscle, tendon, and bone injuries that a runner gets all of the time will also heal more quickly. If so, they won't develop into painful injuries that would require me to stop or slow the training. We'll see. Several more marathons ahead this year, if all goes well.

Some current test results:

Test		Oct 15		Nov 12		Dec 10		Jan 07		Remarks
M-spike g/dL		0.9		0.9		0.9		1.0		Best tumor measure
IgG mg/dL		1020		1100		1090		1110		Variation is normal
L FLC mg/dL		2.68		2.61		2.36		2.18		L Free light chains
Calcium mg/dL		10.3		9.8		10.0		9.6		Below 10.2 is best
Creat mg/dL		1.0		1.0		1.1		1.1		Kidney, normal
HGB g/dL		15.0		14.4		14.3		14.4		Hemoglobin, normal
RBC M/uL		4.21		4.00		4.00		4.05		Red cell count, low
WBC K/uL		4.2		3.9		3.7		3.5		White cells, low
ANC K/uL		1.78		1.53		1.55		1.38		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. Very "technical."

Sunshine made this. I ate it for dinner. Yum.

Mayo Clinic Cycle 22, Still Stable

I've had trouble sitting down to write this post. The Mayo visit was November 12, almost two weeks ago. Plenty to say, but everything else intervenes, and I STILL don't have all the leaves picked up off the lawn.

Test Results:

At the end of Cycle 22 of the Mayo Clinic trial of pomalidomide with dexamethasone (DEX), no change in M-spike. Still 0.9 g/dL, which isn't bad. In fact the lab said it was 0.86 (verbal), but they round up for the written report because the test really isn't accurate enough to support two digits past the decimal. M-spike has hovered between 1.1 and 0.8 g/dL since June of 2008. IgG is up a little, but Lambda free light chains are down a little and the K/L ratio is up (good). Stable!

Calcium is back where it should be, and none of the other tests raise any eyebrows. Enough about test results.

Ashwagandha:

I've taken 225 mg of Sensoril brand ashwagandha every evening for the entire cycle. With no discernible change in test results, it's hard to say that the ashwaghanda has done anything, except help with a good night's sleep. Maybe I should double the dose. Instead, though, I'm now taking the pomalidomide at night, with the ashwagandha, rather than in the morning. That may make a difference, maybe not.

Peripheral Neuropathy:

Some months ago, after 15 cycles of pomalidomide, I noticed some numbness in the soles of my feet and a little tingling in my thumbs. No pain. I immediately did some research and started a new treatment for it, and the neuropathy stabilized. It hasn't changed much now in several months. I do not know whether my treatment is helping to stabilize it, because I haven't stopped the treatment to find out, but for what it's worth, here it is:

Daily dosage:

A good daily vitamin
A good multi-B vitamin
Vitamin B6	100		mg
Vitamin B12 sublingual	1000		mcg
Vitamin E	200		mg
Alpha Lipoic Acid	1200		mg
L-Carnitine	1000		mg
Bromelain	1000		mg
Flax Seed Oil	2000		mg
Curcumin	500		mg

Where it's necessary to take more than one capsule or tablet, I divide the dosage in two, taking half with breakfast and half with dinner.

I also believe in keeping the "peripherals" warm, because healing works far better when tissue is at body temperature. I wear wool socks most of the time, even in bed, and cotton gloves in bed. In addition, we eat very well (nothing that doesn't contribute to health), and get good exercise.

Things that are recommended (somewhere) but which I do not yet do:

• Topical emollient creams, with cocoa butter and spearmint, menthol, or even capsaicin, to stimulate nerves.
• Evening primrose oil supplement.
• "Magnesium Oil."
• L-Glutamine, up to 30 grams daily. I have it on hand, just don't find it convenient to take it.
• Pickle juice can work for cramps, maybe for neuropathy? One friend swears by it.
• Acupuncture.
• Transcutaneous electrical nerve stimulation (TENS). May have a temporary benefit.
• I don't smoke, but if I did I should stop! Duh.
• Biofeedback.
• Infrared heat.
• There are various gizmos and treatments advertised on the web. Buyer beware.

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. Very "technical."

Some current test results:

Test		Aug 20		Sep 17		Oct 15		Nov 12		Remarks
M-spike g/dL		0.8		0.9		0.9		0.9		Best tumor measure
IgG mg/dL		979		1070		1020		1100		Variation is normal
L FLC mg/dL		2.07		2.54		2.68		2.61		L Free light chains
Calcium mg/dL		9.7		10.0		10.3		9.8		Below 10.2 is best
Creat mg/dL		1.1		1.0		1.0		1.0		Kidney, lower is better
HGB g/dL		14.8		14.5		15.0		14.4		Hemoglobin, normal
RBC M/uL		4.13		4.01		4.21		4.00		Red cell count, low
WBC K/uL		3.9		3.7		4.2		3.9		White cells, normal

Discussion with Dr. L:

• She finished a recent marathon in a very nice time, despite having to wear a lot of clothing to keep warm.
• She thinks that my running inspires hers. As for me, I'm very proud of her.
• In answer to my question, yes, get a pneumonia shot.
• If ashwagandha didn't help in the first month, maybe in another month.
• There is a study of an oral form of Velcade.
• There is also a study of a drug currently in use for renal cancer.
• The pomalidomide trial is now open for people who have failed both Revlimid and Velcade.

American Society of Hematology (ASH):

Apparently it is unusual for a myelomiac to be able to run marathons. Thus far I have been lucky enough to avoid broken bones, and I've done eight marathons this year. The International Myeloma Foundation (IMF) has invited me to attend the annual ASH Conference, December 4-7, as an advocate for new treatments like pomalidomide. I will try to blog about it in real time, and will certainly report on it afterward.

Don finishing the OBX Marathon November 8

Ashwagandha

Mayo Clinic Visit Thursday, October 15, 2009, end of Cycle 21

Blood test results: M-Spike remained the same at 0.9 g/dL, IgG dropped slightly from 1070 to 1020 mg/dL, and Lambda light chains increased slightly from 2.54 to 2.68 mg/dL. These results don't really show a trend one way or another. "Stable" is the word.

Except: calcium is up from 9.9 to 10.3 mg/dL, above the reference range, and we don't know why. High calcium in the blood can indicate that bone damage is occurring. It went that high once before, though, and dropped right back down a month later. Hopefully next month's value will be back within range. I will skip my calcium supplements for a day or two before next month's tests, in case that makes a difference.

Of course I'm still concerned about the longer term, when the Phase II trial of pomalidomide with dexamethasone (DEX) eventually fails for me and a different, less-agreeable treatment will be required. Two months ago we reduced my DEX dosage from 8 to 4 mg once weekly - perhaps that was a mistake. Unfortunately, though, under the terms of the study, DEX can only be decreased and never increased, so if I want to continue taking pomalidomide I will continue taking 4 mg or less of DEX. Pomalidomide is good stuff - I DO want to continue on it for as long as possible.

Ashwagandha:

The study doesn't say much about supplements. Margaret has recently blogged about ashwagandha, also called "withania somnifera," a shrub from India and nearby countries. The root is widely used as a medication in that region, and in alternative medicine in other parts of the world. Margaret took ashwagandha herself, and saw her IgG drop 25% and M-Spike drop 10% over a period of several months. She has written several posts about ashwagandha, all worth reading. Because of her apparent success, I have begun taking ashwagandha in a modest dosage. I ordered the patented Sensoril brand, packaged in capsules by Jarrow. I take one 225-mg capsule daily, the amount suggested on the bottle, at bedtime because it also induces a restful sleep.

In addition, I have added 100 mg of ordinary vitamin B6 to my regimen as an additional treatment for the mild neuropathy that is induced by the pomalidomide, and doubled the supplements for thyroid. The entire daily supplement regimen is available from a link in the right-hand panel.

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 wiiide browser window. Very "technical."

Some recent test results:

Test		Jul 23		Aug 20		Sep 17		Oct 15		Remarks
M-spike g/dL		0.8		0.8		0.9		0.9		Best tumor measure
IgG mg/dL		1010		979		1070		1020		Variation is normal
L FLC mg/dL		1.95		2.07		2.54		2.68		L Free light chains
Calcium mg/dL		9.6		9.7		10.0		10.3		Below 10.2 is best
Creat mg/dL		1.0		1.1		1.0		1.0		Kidney, lower is better
HGB g/dL		14.0		14.8		14.5		15.0		Hemoglobin, normal
RBC M/uL		3.93		4.13		4.01		4.21		Red cell count, low
WBC K/uL		5.6		3.9		3.7		4.2		White cells, normal

Discussion with Dr. KDS:

Don:

• Peripheral neuropathy from the pomalidomide has not changed much in this cycle. Still some numbness in the bottoms of my feet and in my thumbs. There is also a little tingling but no pain. The "tickle" sensation in my feet, sensitivity to light touch, might actually have improved somewhat, but the sensitivity to pressure has definitely not improved.
• Many myelomiacs get shingles, because of compromised immune systems. I'd rather not, thank you. So I asked Dr. KDS about the shingles vaccine:
  • It is a live-virus vaccine, and not recommended for people who are immunocompromised; but
  • I don't get sick much - no empirical evidence that my immune system actually IS compromised, but
  • She pointed out that IgA, IgG, and IgM are important parts of the immune system, and in my case both IgA & IgM are at very low levels;
  • Further, if we subtract the monoclonal (worthless) M-Spike component of IgG from the total IgG, the remaining "good" IgG is also well below normal; so
  • I guess I really do have a compromised immune system. Not enough immunoglobulin goblins. **
  • Dr. KDS knows of a case where an immuno-compromised patient actually DID get shingles from the vaccine. Ouch.
  • I suggested using the killed-virus chicken-pox vaccine off-label as a shingles vaccine, but don't recall her response. It wasn't positive.

KDS on flu vaccines for myelomiacs, same advice as last month:

• Get the 2009 H1N1 vaccine as soon as it is available to me. I am not in one of the highest-priority groups.
• Get the seasonal flu vaccine when it is available to me.

Don's thoughts on flu vaccines for myelomiacs (Dr. KDS is not implicated in the following content :-)):

• Seasonal Vaccine:
  • So far, the CDC is not seeing much seasonal flu. In their latest report, almost all of the viruse samples submitted to them in the week Oct 4-10 were found to be 2009 H1N1.
  • Therefore, we need not rush to get the seasonal vaccine, because there isn't much risk of encountering the virus yet. However:
    • The seasonal flu is at least as deadly as 2009 H1N1;
    • Tens of thousands of people DIE from it every year in the USA alone; and
    • Those of us with compromised immune systems are especially at risk; so
    • We definitely should get it well before the seasonal flu peak arrives. The past three seasons saw minor peaks around Christmas with the major peak in February.
• 2009 H1N1 Vaccine:
  • Availability may be spotty because of the priority system, which is applied differently in different places.
  • Get it as soon as it is available, because the VIRUS IS AMONG US! Rampant in some schools.
  • In the meantime, we might be well advised to stay away from groups of people, especially young people.
  • Some doctors say that the vaccine might not do much good anyway, because compromised immune systems can't muster a proper response, but
  • To me that sounds like an excuse and not a reason. If it "might not" do much good then it also "might" do some good, and that's enough for me.
  • That same excuse could be used for skipping the seasonal flu vaccine, and no doctor suggests that.
  • I have not heard of any downside of the H1N1 vaccine, other than the rare problems that can occur with any flu vaccine. If you have heard otherwise, please comment.

We three have some airplane flights coming up, and have even talked about wearing medical masks in that wheezy, sneezy, huddled mass of humanity. We'll see!

** Halloween humor

---

Salad as dinner.

Mayo Clinic Visit Thursday, September 17, 2009, end of Cycle 20

Every treatment for myeloma seems to fail eventually. Somehow the cancer evolves, and the M-spike starts to climb again. On this Phase II trial of pomalidomide with dexamethasone (DEX), M-spike is checked every 28 days. It had been stable or dropping in recent months, but this time it went up, from 0.8 to 0.9 g/dL. Furthermore, this appears to be a real change, because IgG also went up 9%, from 979 to 1070 mg/dL, the highest level since February. Lambda light chains increased too.

But the news isn't quite as scary as it sounds. First, a small increase in M-spike doesn't necessarily mean that the bottom has been reached - we have seen M-spike go up before and then come back down again. It's happened twice already this year. Second, the increase in IgG could be due to an immune-system response to some sub-clinical invader in my body. In fact this seems fairly likely, because my white count and neutrophils are up slightly from last month and eosinophils are through the roof. Something may be going on besides myeloma at the moment.

Bottom lines:

• I'll have to wait another month to see if M-spike is really turning upward again. I sure hope not - it would be wonderful to get a nice, long ride from pomalidomide, because the drug regimen is relatively easy to take. When it fails, I will no doubt need to switch to something with more side effects.
• This uptick in M-spike coincides exactly with a reduction in the DEX dosage from 8 mg to 4 mg once weekly. So my hopes of going off DEX in the upcoming cycle are null and void. In another 28 days we'll see.

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. Very "technical."

Some recent test results:

Test		Jun 25		Jul 23		Aug 20		Sep 17		Remarks
M-spike g/dL		0.9		0.8		0.8		0.9		Best tumor measure
IgG mg/dL		1010		1010		979		1070		Variation is normal
L FLC mg/dL		2.63		1.95		2.07		2.54		L Free light chains
Calcium mg/dL		9.6		9.7		10.0		9.9		Below 10.2 is best
Creat mg/dL		1.0		1.1		1.0		1.1		Kidney, lower is better
HGB g/dL		14.0		14.8		14.5		14.7		Hemoglobin, normal
RBC M/uL		3.93		4.13		4.01		4.08		Red cell count, low
WBC K/uL		5.6		3.9		3.7		4.1		White cells, normal

Discussion with Dr. KDS:

Don:

• Peripheral neuropathy from the pomalidomide might be a little worse. It measures the same, but may have increased in areas that I don't measure, such as the backs of my hands. It does not interfere in my lifestyle in any way. There is no sensation from it unless I'm stepping on my feet.
• There are no red bruise marks on my arms this time. Did the reduction to 4 mg DEX make my skin less sensitive to bruising?
• I'm probably not getting slower (running) any more - maybe a little faster, though that may be psychological.

KDS:

• Wants me to stay on the current 4 mg dosage of DEX for at least 2 cycles before discontinuing it. So at least one more.
• DEX can cause steroid-induced myopathy, but my modest reduction in muscle capacity does not qualify.
• Muscle wasting is probably reversible if DEX can ever be discontinued.
• There is some risk of avascular necrosis of the hip with long-term DEX usage, but she can't quantify it. Balance that unknown risk against the other unknown risk of dying sooner from myeloma. Yikes.

KDS on Flu Vaccine:

• Get the 2009 H1N1 vaccine when it is available to people in my risk stratum. Immuno-compromised old people are at the top of the "second tier."
• According to the CDC (I looked this up): First tier is pregnant women, then health care workers, then all people age 6 months to 24 years, then people age 25-64 who have health conditions which put them at extra risk. Those first-tier groups comprise about half the population!
• Those of us who are over 64 probably have some immunity already, so we go later, even if we are immuno-compromised.
• Get the seasonal flu vaccine no later than November, but maybe sooner if the "regular" flu season (ignoring 2009 H1N1) seems to be peaking early.
• The two vaccines can be taken on the same day.
• Here is a link to the CDC 2009 H1N1 Flu Page.
• Here is a link to the CDC Weekly Update on Seasonal Flu.

My own flu shot advice: Keep in mind that I am an engineer and not a doctor, so feel free to IGNORE THIS ADVICE: Be sure to get the seasonal flu shot, because it may be at least as important as the 2009 H1N1 shot. Tens of thousands of people die every year from seasonal flu, especially immuno-compromised people.

More Great News

Mayo Clinic Visit Thursday, August 20, 2009, end of Cycle 19

Pomalidomide works! At the end of the 19th 28-day cycle on the Pomalidomide / Dexamethasone Phase II trial my M-Spike is 0.8 g/dL, as low as it has ever been, IgG is 979 mg/dL, below 1000 for the first time ever, and neuropathy caused by the pomalidomide (CC-4047) is easily tolerated and has not increased in two months. No big breakthrough this month, just more evidence of a continuously stable or declining tumor burden. I'll take it!

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. Very "technical."

Here are a few of the latest test results:

Test		May 28		Jun 25		Jul 23		Aug 20		Remarks
M-spike g/dL		0.9		0.9		0.8		0.8		Best tumor measure
IgG mg/dL		1030		1010		1010		979		Variation is normal
L FLC mg/dL		2.60		2.63		1.95		2.07		L Free light chains
Calcium mg/dL		10.0		9.6		9.7		10.0		Below 10.2 is best
Creat mg/dL		1.0		1.0		1.1		1.0		Kidney, lower is better
HGB g/dL		14.4		14.0		14.8		14.5		Hemoglobin, normal
RBC M/uL		4.06		3.93		4.13		4.01		Red cell count, low
WBC K/uL		4.0		5.6		3.9		3.7		White cells, normal

Doctor:

Discussion with Dr KDS:

• My neuropathy has not become worse in the last two or three months. It reached a level where the balls and heels of both feet are partially numb, along with one thumb, and then it stopped advancing. It's quite livable, barely noticeable most of the time.
• I've lost four pounds in the past two months. Maybe. If so, it would be a very good thing.
• I have the usual litany of dexamethasone (DEX) complaints:
  • Thin, aged-looking skin, easily bruised,
  • Slow healing of wounds,
  • Slow running - muscles wasted, and
  • A new complaint: Sleep is hard to come by the night after "DEX day."
• I have been taking 8 mg of DEX once per week, and that will be reduced to 4 mg from now forward, by agreement of Dr L, Dr KDS, and myself.
• The next lower level of DEX on this Phase II Pomalidomide trial, after 4 mg, is NONE. I like the sound of that. Say it again: NO DEX!
• I've been on DEX for 18 months now. If I were NOT on a trial, Dr L and Dr KDS would probably have taken me off DEX by now, she said, because of its many negative side effects. The trial does not allow a participant to go back on DEX, however, so they haven't moved me off quite as fast.
• Soon, though, I hope. Life is wonderful, considering the alternative, and I've had far fewer symptoms than most from myeloma and its treatments, but assuming that the numbers will remain stable I'd love to get some running speed back. What a treat that would be.
• I asked what additional long-term DEX effects I should watch for. Her response was "myopathy," which basically means weakening of muscles. In this case I think we're talking about skeletal muscles, and it's certainly happening already, as demonstrated by the loss of running speed.
• My blood pressure was excellent this morning, 123/66, but pulse rate was only 39, even though I had just walked in to the exam room and sat down. She seemed unconcerned - I have a history of heart rates in the 40's because of the running.
• How low is too low? I suspect that my heart rate goes considerably lower when I'm dropping off to sleep. Seems like it does.
• We both believe the low HR to be an effect of the pomalidomide, not the DEX. It seems to reduce my HR at the high end, too, limiting my top running speed in shorter, high-energy races. Going off DEX wouldn't help that.
• Most people who have been on the trial for this long have had their pomalidomide regimen reduced to 21 out of each 28 days, rather than every day. In most cases this is done because the person's neutrophil count or white-blood-cell count (WBC) has dropped below acceptable threshholds. I still take it every day.
• My neutrophils are 1.45 K/uL, about as low as we have seen them, but still well above the threshhold. Ditto my WBC. They may be a little lower than usual simply because I haven't recently been exposed to a threat.
• Or maybe not. Platelets are low too, at 167 K/uL, though they also have been as low in the past. All three of these numbers could be depressed somewhat by the pomalidomide. That does happen to other people, and time will tell.

For this last cycle I took the pomalidomide in the morning, as often as I remembered to do it then, before eating anything at all. I thought that it might have the most impact if taken on an empty stomach. If so, it didn't seem to make a very big difference. Nevertheless, I liked that and will continue doing it that way for the next cycle. DEX will be taken with Sunday dinner, as it was during this cycle.


Breakfast after a 5-mile run. Oatmeal below, most things are organic including the globs of yogurt.