Disappointing Test Results

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

Neutrophils:

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

Genistein:

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

Hand Infection:

Three months ago I whacked the back of my left hand against something and got an infection, either bacterial or fungal, and the hand eventually got quite warm, swollen, and painful. It has healed very slowly, but it's almost better now.

Some current test results:

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

ASCO Conference:

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

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

Related links:

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

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

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

Breakfast:

Mom Is 100!

MY MOM IS 100 TODAY!

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

Ho Hum, Cancer Is Still Stable

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

Neutrophils:

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

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

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

Hand Infection:

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

Other Discussions with Dr L:

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

Some current test results:

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

Related links:

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

Sore left front paw:

Minnesotadon Is Now on Twitter

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

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

Pomalidomide Side Effect?

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

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

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

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

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

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

The News Is All Good

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

Neutrophils:

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

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

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

Liver Enzymes:

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

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

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

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

Bisphosphonates:

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

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


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

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.

Second Level of Advocacy

The International Myeloma Foundation has undertaken a major advocacy initiative, to convince the U.S. Congress to address several issues crucial to cancer patients, including:

• Affordable access for as many people as possible;
• Elimination of the barrier of "pre-existing conditions; and
• Continued investment in research.

Here is the full Statement of Principles.

This is the right time, while health care is up in the air.  The initiative now has two levels:

1. Writing:

We write letters to our congresspersons and senators. It is made easy on this IMF web page:  Enter your zip in Write to Congress, then on the next page, click "Write to ALL of your representatives with one click."  Please do this. It is SO easy to do.

2. Meeting with our elected representatives:

This is the IMF's newest and potentially most-effective initiative. Senators and congresspersons all have offices in their home districts, and we can make appointments to visit them or their staff person. The IMF has scheduled two one-hour web-based seminars to teach us how to do this in a manner most likely to achieve a result:

• Tuesday, February 23, 1:00 pm EST (12:00 CST); and
• Thursday, February 25, 1:00 pm EST (12:00 CST)

Then we will visit our representatives during myeloma awareness month, "March Against Myeloma."

To take part in the web seminars, email Meghan Pullarn at IMF or call 410-252-3457. She'll be glad to hear from you.

Cycle 25 Results

February 4, 2010, end of Cycle 25:

This was another good visit. Not a GREAT visit, but a good one. A GREAT one would include a significant drop in M-Spike, and today's number was 1.0 g/dL, the same as the previous cycle. In fact M-Spike is only reported to the nearest tenth, because the test is not highly accurate, and the actual monoclonal proteins may have gone up a fraction of a tenth, because IgG increased 6% and Lambda light chains increased a little. But I'm still off DEX, and Dr. L pronounced the myeloma STABLE! When that changes there are lots of things to try, including going back to the DEX and possibly adding Biaxin. So far my only treatments have been thalidomide (years ago), pomalidomide, and DEX.

I'm still on a Phase II trial of pomalidomide, brand name Actimid, previously called CC-4047. It's a new IMID drug in the family which includes Revlimid and Thalomid (thalidomide). I get one 2-mg capsule of pomalidomide per day, every day, but no more DEX. I also take an aspirin every day to reduce the likelihood of a deep-vein thrombosis (DVT), which is one of the most-dangerous potential side effects of the pomalidomide. So far so good, no DVT. I go to Mayo Clinic every 28 days for blood tests and an exam. Pomalidomide is working for me, and the study so far shows that it has a lot of potential, even for patients whose myeloma is not controlled on other drugs. It's a drug we can live with.

Other pomalidomide side effects that I do experience:

• Bradycardia: This is a reduction in heart rate below the normal rate. In my case the normal resting heart rate is already low, usually in the high 40's, because I'm a runner, and pomalidomide takes that down to the low 40's. It hasn't been a problem, though, unless it's slowing my running pace, and I can't really tell about that because any bradycardia effect would be masked by the effects of the DEX.
• Peripheral Neuropathy: Pomalidomide can cause numbness or even pain in the hands and feet, sometimes other parts of the body. My neuropathy is very mild, just numbness in parts of the soles of both feet, and numbness with tingling in one previously-injured thumb. It's not a problem - days go by with no thought of it entering my head.
• Depressed Neutrophil Count (neutropenia): The count dropped to 1.22 k/uL, where 1.70 is the bottom of the reference range. I'm a little concerned, but not too concerned, because for some reason the lab had to do a manual count, which is "not exactly comparable" to the usual automatic count. It's down 12% from last month. If it goes too low the risk is neutropenic fever, which happens when the body's defenses are down. Lethal sepsis can follow if treatment is not immediate. Hopefully before that, Dr. L will switch me from daily pomalidomide to 21 days on, 7 days off, but she did remark that the neutrophil count was still above 1.0 k/uL. According to one source, a value above 1.0 for a white male is only mild neutropenia, and a value below 0.5 is severe.

Other discussions with Dr. L:

• Some patients (on the study?) are now taking Biaxin, drug name clarithromycin, an antibiotic, because it has been shown to potentiate the combination of an IMID drug with DEX. It seems, however, to increase the symptoms normally attributed to DEX, not necessarily those attributed to the IMID drugs, so perhaps it potentiates mostly the DEX and not so much the IMID. Since I am not taking DEX, it might not help treat the myeloma.
• But I have recently scraped my wrist, removing a small bit of skin, and that area is showing some infection. Since I'm allergic to penicillin, Dr. L prescribed a three-day regimen of Biaxin to calm that small infection site, so I guess there's a tiny chance that it will help with the myeloma too. Only a tiny chance.
• I'm a little surprised to discover that my local pharmacy doesn't carry Biaxin, so I can't get it until tomorrow. I wonder if that's because it's usually sold in blister packs of 7 or 14 days, as Zithromax is sold, and I only need three days worth. Anyway we'll start tomorrow noon.
• Pomalidomide is toxic to neutrophils, thus depressing my count. According to Dr. L, though, DEX can promote the production of neutrophils, another reason to use DEX with pomalidomide. Since I'm now off DEX, I don't enjoy that benefit.
• The next appointment, in March, will bring us to the two-year anniversary of the PET scan which showed lesions in three of my bones. Since then the pomalidomide and DEX have presumably given the bones time to rebuild in those areas, but I asked Dr. L how we can be sure that the myeloma has not continued or renewed its attack on my bones. I care a LOT about this, because my runner's lifestyle would be halted abruptly by almost any broken bone. She pondered a bit and wasn't adverse to a new PET scan, I thought, but then suggested a new bone density measurement instead. She said that it might be a good idea because long-term DEX treatment can reduce bone density, and a loss of bone density correlates well with myeloma bone injury. So we'll do that. Yet to be decided is whether we do the bone density measurement on the next Mayo visit or, instead, at my local hospital where I have a baseline of previous measurements.
• For at least 10 years prior to my myeloma diagnosis, I took naproxen (Aleve) tablets or liquid gels, standard over-the-counter dosage of 220 mg naproxen sodium, twice a day as suggested on the label, every day, to manage headache pain. Neurologists tried everything to get at a cause of the pain, but eventually we all concluded that the naproxen wasn't such a bad way to deal with whatever it was. When the pomalidomide drug trial began, my M-Spike at first came down rather steeply. Then, for whatever reason, the headaches disappeared, possibly a beneficial effect of the DEX. So I stopped taking naproxen in midsummer 2008. At about that time, the decline of the M-Spike slowed, and it leveled off at about 1.0 g/dL. Coincidence? Dr. L said that there is some evidence that NSAID's may have some anti-myeloma effect. I wonder if that might be increased synergistically if the NSAID is used in concert with another agent, such as pomalidomide. Dr. L wasn't adverse to a naproxen experiment, if I want to do it. I think that she agreed that naproxen is relatively safe. It poses a slight risk to the kidneys, but I get kidney function checked every 28 days. I'm thinking about it. The headaches do seem to be coming back a little, now that I'm off DEX.
• Mayo wanted to do a trial of Celebrex with MGUS or smoldering patients, to see if that NSAID has a significant anti-myeloma effect, but the study could not accrue enough patients to go forward. I recall having an exchange of emails with the doctor who was heading that trial, back when my myeloma was smoldering, but I was not eligible as a trial subject for several reasons, not least of which was my long-term use of naproxen.
• Dr. L was not aware of any study using naproxen. If I try it, I probably shouldn't change anything else, no change to the supplements I'm taking, or I won't know what made the difference if there is one.
• I mentioned to Dr. L that I tried to refill my prescription for acyclovir, which I take to ward off shingles, but the pharmacy said they couldn't get a supply of it. She was aware that there is currently a shortage, and suggested a couple of alternatives, but thought perhaps I could just get along without it, especially since I am off DEX right now. No more acyclovir, at least for a while.

Some current test results:

Test		Nov 12		Dec 10		Jan 07		Feb 04		Remarks
M-spike g/dL		0.9		0.9		1.0		1.0		Best tumor measure
IgG mg/dL		1100		1090		1110		1180		Variation is normal
L FLC mg/dL		2.61		2.36		2.18		2.78		L Free light chains
Calcium mg/dL		9.8		10.0		9.6		9.8		Below 10.2 is best
Creat mg/dL		1.0		1.1		1.1		1.1		Kidney, normal
HGB g/dL		14.4		14.3		14.4		14.2		Hemoglobin, normal
RBC M/uL		4.00		4.00		4.05		4.00		Red cell count, low
WBC K/uL		3.9		3.7		3.5		3.8		White cells, low
ANC K/uL		1.53		1.55		1.38		1.22		Neutrophils, low & falling

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. Quite technical.

We recently ate at the Lake Elmo Inn, in Lake Elmo, MN.  The Tuesday brunch buffet is scrumptious, with two entrees, lots of salads, vegetables, and fruit, and many irresistible deserts.  That chicken is not gluten-free, but I scraped off the sauce before eating it.  In the upper right is a homemade turtle with chocolate, caramel, and pecans.  You can go back for more, and I did.  We all did.

Critical Elements of Health Reform

I received an email today from the International Myeloma Foundation (IMF) asking me to post about the Cancer Patient Statement of Principles, to help assure that the essential elements of health reform will become law despite the current partisan tension.

Happy to do it! These elements are:

• Affordable access to basic and catastrophic health care coverage for as many Americans as possible.
• The elimination of "pre-existing conditions" as a barrier to health care coverage.
• The elimination of annual and lifetime caps on insurance coverage.
• Closing of the Medicare "donut hole."
• Continued investment in research and innovation to address the needs of those with all deadly diseases.

To show your support for these priorities, please visit the IMF advocacy page and contact your Senators and Congressperson.  And feel free to blog about it yourself!

Thank you!    Don

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.