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.

No More DEX!

YAY! After 23 cycles of pomalidomide (CC-4047, Actimid) with dexamethasone (DEX), I've taken my last DEX tablet, at least for a while. Recently I've only been taking 4 mg per week anyway, which probably doesn't do a lot of good but certainly seems to induce most of the same side effects as a larger dose.

Thursday's results (December 10) again show the myeloma to be stable. M-Spike, IgG, and light chains all about the same as 28 days ago. Stable is good - my myeloma and I are at a standoff. Let's hope that continues without the DEX. More actual test results are listed below and from the righthand panel.

Ashwagandha:

No noticeable improvement, so clearly the ashwagandha isn't helping much. Of course it's possible that the myeloma has begun to figure out the pomalidomide, so M-spike would be higher without the ashwagandha, but I doubt it.

DEX Replacement:

First of all, maybe the DEX doesn't need to be replaced. But I'll see if I can find something that will help the pomalidomide, so that I don't have to go back on DEX. In my own earlier efforts to find a treatment, I had thought that nothing did much good, because M-spike never seemed to go down or even stop climbing. Looking back, though, I can see that IgG did stop climbing for a while, even if M-spike didn't seem to, when I was on my "kitchen sink" regimen, taking low-dose naltrexone (LDN) with curcumin, quercetin, resveratrol, and EGCG. The truth is that M-spike can't actually climb much when IgG is stable, so M-spike was probably more stable than I thought back then. Now, what would happen if I replaced the DEX with the kitchen sink stuff?

Oh, that's right, LDN is a prescription, so I'd need to discuss that with Dr L and I doubt it would be permitted as part of the study. I need a substitute. LDN is thought to work by causing the body to release endorphins which help somehow, possibly just by inducing a very sound sleep. Well, ashwagandha does that too, at least it seems to put me to sleep. So I guess I'll keep taking the ashwagandha at bedtime. Here's the new regimen, to be merged in with the other supplements that I take:

	Ashwagandha		225		mg
	Curcumin		8000		mg
	Quercetin		4000		mg

If those don't seem to make a difference after a cycle or two, I may try resveratrol and EGCG next. We'll see. Meantime I have to order more of the supplements. The full updated supplement regimen will be available from a link in the right-hand panel soon.

Wild Alaskan Salmon Oil:

We recently spotted this product on the shelves at Costco in Maplewood, MN: Wild Alaskan Salmon Oil. It is made by a company calling itself Alaska Protein Recovery, LLC, and purports to be (1) Free of mercury and other heavy metal pollutants (because Alaskan waters are low in pollution), (2) from a certified sustainable wild-salmon fishery, and (3) "proud to be made in the USA" (i.e. not from China). Two 1000-mg capsules supply 600 mg of omega fatty acids, including DHA 220 mg and EPA 180 mg. I must admit that I don't know if that is good or not - I haven't studied fish oils. The flax oil that I already take shows different fatty acids on its label, so comparison is difficult. I have been taking two flax oil capsules per day, and will now add two salmon oil capsules. Perhaps by the time I've used up the 180 salmon oil capsules I'll know whether this was a good idea or not.

Some current test results:

Test		Sep 17		Oct 15		Nov 12		Dec 10		Remarks
M-spike g/dL		0.9		0.9		0.9		0.9		Best tumor measure
IgG mg/dL		1070		1020		1100		1090		Variation is normal
L FLC mg/dL		2.54		2.68		2.61		2.36		L Free light chains
Calcium mg/dL		9.9		10.3		9.8		10.0		Below 10.2 is best
Creat mg/dL		1.1		1.0		1.0		1.1		Kidney, lower is better
HGB g/dL		14.7		15.0		14.4		14.3		Hemoglobin, normal
RBC M/uL		4.08		4.21		4.00		4.00		Red cell count, low
WBC K/uL		4.1		4.2		3.9		3.7		White cells, 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		Best with a wide browser window. Very "technical."

More ASH reports coming up.

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

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Salad as dinner.