They Know Me on Sight

I walked toward the hematology desk at Mayo Clinic and was greeted by name before I got there. No one wants to be that familiar at that desk, though of course it's a compliment to the sweet technician who remembered me. Imagine how many people she sees in a day, not to mention a month. Good news again today, though, at the end of the 55th 28-day cycle on the pomalidomide study, my numbers are stable once more.  I'm going to write a country-western song about pomalidomide .. my secret love, takin' me to bed every night, keepin' me alive ...

Cancer markers:

IgG is down about 6%, from 1210 to 1140 mg/dL, but it goes up and down a bit, and the difference may be within the measurement accuracy of the test. M-spike is unchanged at 1.1 g/dL. Lambda and kappa light chains both dropped slightly, though the ratio is about the same and I don't really know what the light chains mean anyway.

For the second straight month every other blood marker of any significance was within the reference range, even the red blood cell count. I feel very good, too, and I'm running well, considering recent surgery. I had been concerned about calcium, but it's been well within the reference range for three months now, so I'm sure I have no dissolving bones.

ASCO:

The annual meeting of the Americal Society of Clinical Oncology (ASCO) will be held in Chicago this coming weekend, and my sweeties and I have been invited to attend. We will be helping to staff an advocacy booth supported by the International Myeloma Foundation, and blogging about new myeloma research. We might even go for a nice run on the Chicago Lakeshore Trail.

Advocacy Issues:

• Early Access to Emerging Treatments: Current rules often prevent doctors and their patients from trying new treatments, even if the patient is dying. We as a nation want to prevent patients from suffering unexpected side effects, of course, but for dying patients the side effect of NO treatment is worse.
• Oral Drug Parity: Some expensive, targeted cancer treatments are administered as infusions in a clinic, while others are pills, taken at home. Because prescription drug coverage almost always has a much higher co-pay and deductible than the medical insurance that covers in-clinic infusions, patients whose best treatment option is a pill can be faced with bills as high as $10,000 per month. Some states have passed legislation requiring insurers to cover oral treatments on terms no less favorable than in-clinic treatments, and federal legislation is proposed.  It can't come soon enough.

More to come ...

Most-Recent Test Results:

Test		Mar 08		Apr 04		May 04		May 29		Remarks
M-spike g/dL		1.0		1.1		1.1		1.1		\ Tumor marker
IgG mg/dL		1100		1290		1210		1140		/ Tumor marker
Lambda mg/dL		2.80		2.24		2.75		2.53		L Free light chains
Calcium mg/dL		10.3		9.6		10.0		9.7		OK
Creatinine mg/dL		1.0		1.2		1.0		1.2		Kidney, OK
HGB g/dL		14.2		14.6		15.6		15.7		Hemoglobin, OK
RBC M/uL		3.86		4.08		4.31		4.37		Red cells, not bad
WBC K/uL		3.7		6.1		5.3		4.6		White cells, OK
ANC K/uL		1.70		1.50		2.70		1.80		Neutrophils, OK

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.

Everything here is organic except the oatmeal in the meat loaf (we don't know where to get oatmeal that is both organic and gluten free). Yes that's a dill pickle in a sweet potato:

Revlimid and Second Primary Cancers

Newly-diagnosed patients:

Last Monday, May 7, 2012, the FDA issued a Drug Safety Communication which says, in part, "in clinical trials of patients newly diagnosed with multiple myeloma, those patients treated with Revlimid had an increased risk of developing new cancers." These are also called "second primary cancers."

If you are considering Revlimid as initial treatment or as a maintenance treatment, you may wish to read on before you lean very heavily on that FDA statement:

• The FDA statement contains no new information. The facts on which the statement is based are from three well-known studies on newly-diagnosed patients, and are over a year old. If your doctor doesn't already know of these studies, it's time to get a new doctor.
  
  
• Since one year ago, new information about those studies has been made available, and it is not clear to me that the FDA used that information.
  
  
• The three studies are all different, with somewhat different objectives, and none was specifically designed to reveal the frequency of second primary cancers. They were meant to show the difference in progression-free survival and overall survival, comparing Revlimid maintenance with a placebo, after transplant or other initial treatment.  The Myeloma Beacon has a good description of the three studies.
  
  
• Analysis by FDA and others may be wrong, and this may be one reason:
  • All three studies demonstrated that Revlimid maintenance does extend the time to relapse.
  • In some cases the patients on maintenance had twice as much time, or even more, before relapse.
  • Therefore, patients on Revlimid maintenance had much more time to develop second cancers before relapse than did patients on the placebo.
  • It appears that some of the studies, if not all three, stopped looking for second primary cancers once a patient had relapsed.
  • Thus, we would expect patients in the Revlimid arm to collect more second primary cancers, just because they had more time to do so.
  
  
• Even if Revlimid treatment did result in more second primary cancers, that risk may be lower than the risks from not taking it.

Patients with relapsed/refractory myeloma:

The FDA also reviewed results from two clinical trials which supported the initial FDA approval of Revlimid. I find their description of the data to be confusing at best, but in the worst interpretation of it, patients on Revlimid with high-dose dexamethasone experienced fewer than four second primary cancers per 100 patients per year.

Bottom line:

I'm not a doctor, but I have opinions anyway, and in my opinion, the FDA Safety Communication should not be an occasion to change any decisions about using Revlimid, which is still one of the best treatment options available. Other very smart doctors are trying to make sense of this issue as we speak, and we should wait until better information is available.

I admit to a little bias on this issue, because: (1) I take pomalidomide continuously. It is a close relative to Revlimid, and I don't want to think about second primary cancers from that; and (2) I like Celgene, the makers of both drugs. However, I really don't think that we have enough information yet to even say for sure that Revlimid poses a greater risk of second primary cancers than no treatment at all.

Please comment, especially if you have any corrections or suggestions about facts or reasoning in this blog post. Please let me know. Thanks.

We Lost Another One

Mike Olson, from Menominee WI, participated regularly in the Stillwater, MN support group meetings, and was instrumental in starting a support group in Eau Claire, WI.  Mike's myeloma was aggressive, however, eventually overwhelming every treatment Mike's doctors could offer.  After a couragous and exhausting battle, Mike died at home Thursday, May 10, 2012.  We will miss him.

Here is the obituary.

Cycle 54, Still Stable

At the end of the 54th 28-day cycle on the pomalidomide study, I'm happy with the results once again. It's good stuff.

Cancer markers:

IgG is down slightly, from 1290 to 1210 mg/dL, but the difference may be within the measurement accuracy of the test. M-spike is unchanged at 1.1 g/dL. Lambda and kappa light chains did their usual dance, this time lambda chains are up slightly, but I doubt it means anything.

Every other blood marker of any significance was within the reference range, even the red blood cell count. I feel very good, too.

Anniversary:

Sunshine and I have recently begun the 50th year of our marriage. We're having a lot of fun running marathons in each of the 50 states, but 49 years of marriage is far more significant and satisfying.

Most-Recent Test Results:

Test		Feb 07		Mar 08		Apr 04		May 04		Remarks
M-spike g/dL		1.1		1.0		1.1		1.1		\ Tumor marker
IgG mg/dL		1280		1100		1290		1210		/ Tumor marker
Lambda mg/dL		1.99		2.80		2.24		2.75		L Free light chains
Calcium mg/dL		10.2		10.3		9.6		10.0		Normal
Creatinine mg/dL		1.0		1.0		1.2		1.0		Kidney, OK
HGB g/dL		15.2		14.2		14.6		15.6		Hemoglobin, OK
RBC M/uL		4.18		3.86		4.08		4.31		Red cells, not bad
WBC K/uL		4.5		3.7		6.1		5.3		White cells, normal
ANC K/uL		2.40		1.70		1.50		2.70		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.

Normal Breakfast: