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.