CNN Story

While I was in Washington DC a month ago, CNN interviewed me for their "Human Factor" segment - a guy running marathons with cancer. The story aired Tuesday morning, Nov 29, on their American Morning show.

It is available on CNN's blog pages: http://thechart.blogs.cnn.com/category/human-factor/, along with a short written story.

It is available without the written story here: http://www.cnn.com/video/#/video/health/2011/11/29/hf-don-wright-marathon.cnn.

It will probably air again at least once on Headline News, sometime during the week. Finally, a longer version is likely to be included in the Dr. Sanjay Gupta MD show, which airs at 6:30 am CST on Saturday and Sunday.

Probably Good News

After 48 cycles on the sweet little pill called pomalidomide, my cancer markers are about the same as last month. IgG is higher than I would like to see it, at 1280 mg/dL, but it didn't jump up again, it actually dropped slightly. M-spike stayed still at 1.1 g/dL. So the cancer still appears to be stable. Dr. LH did mention that stress (3 marathons in 3 weeks?) could contribute to increased IgG, and I know that I have a tooth that is starting to go bad, so those are reasons why IgG might be a little higher than expected.

Lambda light chains dropped a bit, too, while kappa light chains remained the same. I'm not sure that means anything, except it can't be bad.

Calcium has bounced around in recent months, and it's back up again. We discussed doing a skeletal survey, to check for bone lesions, but Dr. LH said that if the calcium is coming from bone lesions, it isn't likely to go down again next month. So we'll hold off for a month and see. She suggested that better hydration might improve the calcium numbers, and I think she's right - I know that I don't drink enough water. I need to figure out some easy way to fit proper hydration into my life so that it happens automatically. Yeah.

I haven't been blogging here much lately, because we three have been on the road a lot, but we're going to the ASH Conference in December and I hope to blog several times while there.

Some Current Test Results:

Test		Aug 25		Sep 22		Oct 19		Nov 17		Remarks
M-spike g/dL		1.1		1.0		1.1		1.1		\ Tumor marker
IgG mg/dL		1150		1020		1310		1280		/ Tumor marker
Lambda mg/dL		2.25		2.49		2.75		2.12		L Free light chains
Calcium mg/dL		10.5		10.0		10.0		10.3		OK
Creatinine mg/dL		1.1		0.9		1.1		1.1		Kidney, OK
HGB g/dL		14.7		14.9		14.6		15.0		Hemoglobin, OK
RBC M/uL		4.08		4.09		4.07		4.18		Red cells, low
WBC K/uL		3.8		6.2		4.8		5.3		White cells, normal
ANC K/uL		1.40		2.60		2.30		1.70		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.

There's oatmeal under there somewhere:

CNN Video Piece

CNN has prepared a story about me and my 59 marathons since diagnosis, and were planning to air it this Tuesday morning. In case you were thinking of tuning in (I was!) it has been rescheduled for Tuesday morning Nov 15.

But don't count on it. News always comes first.

Senator Amy Klobuchar

I had a chance to meet Senator Amy Klobuchar yesterday. She's the best:

Oral Drug Parity, Part 2

HR 2746, the Cancer Coverage Parity Act of 2011, is intended to guarantee that private insurance will cover oral cancer medications on terms no less favorable than inpatient chemotherapy. Yesterday, as a blood cancer patient, I helped the IMF and the LLS bring this issue to five congressional offices, each time explaining the issues and helping the staffer to understand why we care about it. See yesterday's post.

Today we visited six more congressional offices, this time including the two Minnesota senators, for whom I'm an actual constituent:

• Andy Taylor, Legislative Assistant to Congressman Michael T. McCaul (R-TX;
• Brian Fauls, Deputy Chief of Staff for Congressman Dan Burton (R-IN);
• Whitney Brown, MPH, ASPH Public Health Policy Fellow at the office of Senator Al Franken (D-MN);
• Senator Amy J. Klobuchar (D-MN) and Andrew Hu, Legislative Assistant;
• Katie Meyer, Legislative Assistant for Congressman Erik Paulsen (R-MN); and
• Andrew Wankum, Legislative Assistant for Congressman Kevin Brady (R-TX).

Again, like yesterday, everyone was quite cordial, and most sounded quite positive on our issue. Some were chatty, some not, some had a little fun, and maybe talked about running too, some not. I have never been to Capitol Hill before, but I found that I really enjoyed this.

Why the bill should pass: It's bipartisan because cancer hits both sides of the aisle, it costs the government nothing because it is directed at private insurers, and it doesn't require insurers to cover cancer meds - it only requires parity if they do cover them. We hope that several of the congressmen will co-sponsor the bill.

Some insurers don't like the bill, mostly because it requires them to change something. They're obliged to be fair, poor babies.

Amy Klobuchar is something else. Of the staffers we saw in the various offices, there may have been just two or three who had a grasp of the issue before we arrived, but Senator Klobuchar knew all about it - even told us a funny story about it! There is no Senate sponsor yet, and I'm hoping that either she or Senator Al Franken will do that. I admit to being a big Klobuchar fan, for a long time, and I even got a hug.

If you noticed, ten of the congressmen and senators were men, but the one woman senator was the only one who showed up in person. Thank you Senator Klobuchar. To be honest, I think that's more about Senator Klobuchar than it is about gender, but feel free to disagree.

Thank you also, very much, to all of the staffers who met with us and took our message to your congressmen and senators.

Thanks to Christine Murphy of the IMF and George Dahlman of LLS, who did their jobs so competently, and Coles Hull, who guided us throughout, and thanks to Nancy Glick and Stephen Gendel, true professionals.

Earlier in the morning I was interviewed by CNN, preparing a piece about people who are responding to critical issues in their lives (or something like that). The snapshot below shows me with the CNN producer, and with the Potomac River in the background. The piece may air on CNN's American Morning show, Tuesday, November 8, which starts at 7 am Eastern time. Or maybe 6 am - that's what my guide says. More about this as I learn more.

UPDATE Nov 5:The CNN piece has been rescheduled to Tuesday Nov 15. Probably. More here.

Now we three are off to New York.

Oral Cancer Drug Parity

Many of us have discovered that oral drugs that we take at home, like Revlimid or Thalidomide, can cost us much more than intravenous (IV) drugs, like Velcade, delivered in the doctor's office or a clinic. There are various reasons for the difference, including deductibles, co-pays, annual or lifetime maximums, and the "donut hole." The costs can be so staggering that many patients simply don't fill their prescriptions.

So why not just use IV chemotherapy instead of oral meds? (1) For some patients, oral meds may very well be the best medical treatment, especially with the newest oral meds; (2) It is SO much more convenient for the patient (us) to take a pill once a day instead of sitting in a clinic for an infusion. We can work, and travel, and live fuller lives, without being tied to a clinic; (3) For some patients, the nearest clinic may be many miles away; and (4) In some cases the oral drug may cost the health care system less, considering the much higher number of office visits required for IV therapy.

Fourteen states have now enacted laws requiring insurers to cover oral drugs on terms as favorable as they cover IV drugs. HR 2746, the Cancer Coverage Parity Act of 2011, is intended to fix the problem at the federal level, eliminating the need for the remaining states to enact their own legislation.

After running the Marine Corps Marathon yesterday, I stayed in Washington to help the International Myeloma Foundation (IMF) and the Leukemia and Lymphoma Society (LLS) bring this issue to the attention of a few congressmen and senators. Today we visited:

• John Martin, Legislative Director for Congressman Phil Roe, MD (R-TN);
• Paul N. Balzano, Legislative Director for Congressman K. Michael Conaway (R-TX);
• Caira Woods, Legislative Health Fellow for Congressman Frank Pallone, Jr. (D-NJ);
• Pat Pelletier, Legislative Correspondent for Congressman John Kline (R-MN); and
• Elizabeth Hoffman, Legislative Assistant for Congressman John R. Carter (R-TX)

I've never done anything like this before, and was actually more apprehensive about these meetings than I was about Sunday's marathon - I didn't sleep well last night. But I found that I liked it, especially after the first person was warm and affirming. Everyone was cordial, at the very least. In most cases, the issue was new to the staff person with whom we spoke. They were there to be educated and they learned something. I enjoyed it and will sleep well tonight!

Tomorrow we have six more meetings. I believe five are with congressional staff, and hopefully one with an actual senator. Can't wait.

Article in Minneapolis Star Tribune

Here's a nice article in the Minneapolis Star Tribune's East Metro Section about my marathons and Team Continuum, published yesterday.

Team Continuum helps families that are devastated by the costs and disruptions of cancer.

You can help, using someone else's money! If you have a Fecebook account and go to my E-Race Cancer Facebook Page and "like" it, a donation will be made to Team Continuum by a generous third party. We invite you to do that - there is no cost to you.

Of course you are certainly also welcome to go directly to my Team Continuum page and make a further contribution to the cause. It's deductible.

Thank you!

Not Good News Today

I've participated in a study of a new drug called pomalidomide (originally called CC-4047) for 47 cycles now, each 28 days long. It's been a wonderful ride so far, with the cancer held stable for more than 3 1/2 years. Eventually every treatment fails, however, and when that happens I will see the cancer markers starting to increase.

They increased today. The blood test results at Mayo Clinic showed a 28% rise in immunoglobulin G (IgG), from 1020 to 1310 mg/dL, which is the largest jump in IgG since I started in the study. The monoclonal (naughty) component of immunoglobulin G is called M-Spike, and it increased too, though more modestly, from 1.0 to 1.1 g/dL. The results do go up and down, of course, for perfectly natural reasons, and they most likely will go down again next month. Or, they could continue on upward. Meanwhile, I'll be on pins and needles.

What if they do keep going up? There are several other treatments that my myeloma hasn't yet had a chance to outgrow, and some of them will undoubtedly help.

Better news: Calcium, kidney function, hemoglobin, and white counts are all within normal limits. I think that means that the myeloma most likely isn't hurting me yet.

Some Current Test Results:

Test		Jul 28		Aug 25		Sep 22		Oct 19		Remarks
M-spike g/dL		1.0		1.1		1.0		1.1		\ Tumor marker up
IgG mg/dL		1030		1150		1020		1310		/ Tumor marker up
Lambda mg/dL		2.21		2.25		2.49		2.75		L Free light chains
Calcium mg/dL		9.8		10.5		10.0		10.0		OK
Creatinine mg/dL		1.3		1.1		0.9		1.1		Kidney, OK
HGB g/dL		15.1		14.7		14.9		14.6		Hemoglobin, OK
RBC M/uL		4.17		4.08		4.09		4.07		Red cells, low
WBC K/uL		5.1		3.8		6.2		4.8		White cells, normal
ANC K/uL		1.90		1.40		2.60		2.30		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.

Prepared by Sunshine on the road between Hartford and St Paul: Applegate organic chicken/turkey fire-roasted red pepper sausage, organic mustard, tuna dish (organic peas, tuna, organic brown rice), veggie dish (organic squash, organic sweet potatoes, onions), avocado:

Stacy Died

Stacy was the wonderful young mother of two small girls and as warm, caring, and upbeat a person as I've ever known. She was struck down today by myeloma.

I feel so damn ANGRY at this disease. So helpless. I hate it! My own ride with myeloma has been easy by comparison, but now I've personally known thirteen people, shaken their hands and spoken face-to-face, people like Stacy, who have gone down before this merciless killer. All of them died too early, and Stacy's death is a particular tragedy.

Some people say that new treatments for myeloma might eventually turn it from a uniformly fatal disease into a chronic one. That's a great goal, but we're not there yet, not when a young wife and mother of two cannot be saved by the best medical care on earth. There is a lot of work to do.

Stacy, we love you and we commend you to the hands of God. We will most certainly miss you here.

Stacy, second from left, with her mother and two daughters:

Still Stable After Cycle 46

I'm a very fortunate myelomiac, I know that. My numbers go up slightly, and then they go down again. This time they're down a bit after the 46th 28-day cycle of the investigational drug pomalidomide. I've never been injured by the myeloma and I can still run, and in fact we just finished our 55th marathon since diagnosis. That's very lucky indeed, and I'm so grateful to the professionals at Mayo Clinic, and to Celgene, the makers of pomalidomide, and to my two sweeties who care for me, and all others who make the hope come true. Life is very good.

Serum Cancer Markers:

My myeloma is IgG Lambda, a very common type. So far, the tumor burden seems to be quantifiable by measuring its surrogates, the IgG protein level and the M-spike. IgG is down from 1150 mg/dL last month to 1020 this time. Accordingly, M-spike is down from 1.1 to 1.0 g/dL. Light chains are basically unchanged. Liver enzymes are up a bit, but that could be from running a marathon four days ago - they're still within the reference range.

Calcium:

Last month my calcium was 10.5 mg/dL, which is significantly above the top of the reference range. Doctor LH recommended that I cut my daily Vitamin D3 supplementation in half, to 2500 IU, and I did. This month calcium was 10.0 mg/dL, just below the top of the reference range. Calcium in the blood has varied quite a lot from month to month, so we can't say for sure that the Vitamin D3 reduction made any difference, but it might have. There is such a thing as too much Vitamin D, although 5000 IU/day is far below the levels generally thought to be harmful. That threshhold might change, however, when the supplement is taken for years, as I have done.

Too much calcium in the blood can be harmful in itself, playing a part in atherosclerosis, but for a myelomiac it can also be a signal of bone loss, indicating that the myeloma is active in the marrow of some bone or bones. I'm glad that it went down, and for now I'll stay on the reduced amount of Vitamin D3.

Even though the calcium level went down, though, it's still on the high side of normal. Considering that it's been 18 months since the last skeletal survey, Dr RH thought it would be reasonable to have one, and scheduled it as part of next month's tests. That's a proactive approach that I appreciate. I did have a clear PET scan six months ago, but myeloma can be very sneaky.

Some Current Test Results:

Test		Jun 30		Jul 28		Aug 25		Sep 22		Remarks
M-spike g/dL		1.0		1.0		1.1		1.0		\ Tumor marker
IgG mg/dL		1070		1030		1150		1020		/ Tumor marker
Lambda mg/dL		1.74		2.21		2.25		2.49		L Free light chains
Calcium mg/dL		10.0		9.8		10.5		10.0		OK
Creatinine mg/dL		1.3		1.3		1.1		0.9		Kidney, good
HGB g/dL		14.8		15.1		14.7		14.9		Hemoglobin, OK
RBC M/uL		4.28		4.17		4.08		4.09		Red cells, low
WBC K/uL		3.6		5.1		3.8		6.2		White cells, normal
ANC K/uL		1.17		1.90		1.40		2.60		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.

Presque Isle State Park, September 18, 2011, a view of Lake Erie from along the marathon route:

Collaboration With Team Continuum

I'm now running on behalf of Team Continuum, raising money for people living with cancer, while I pursue my goal of running a marathon in each of the 50 states. We three have a full schedule of marathons for the rest of 2011, including the New York City Marathon, the Marine Corps Marathon, and several others.

You can help. If you go to my new E-Race Cancer Facebook Page and "like" it, a donation will be made to Team Continuum by a third party. We invite you to do that - there is no cost to you.

While you are there, you are certainly also welcome to click on the Team Continuum link and make a further contribution to the cause.

Thank you!

Vitamin D3 and High Serum Calcium

At my last Mayo Clinic visit, serum calcium tested at an all-time high, 10.5 mg/dL. The reference range is 8.9 to 10.1 mg/dL, so it's significantly above normal. Why is that? (1) It could be the myeloma attacking a bone somewhere; or (2) Dr LH noticed that I take a lot of Vitamin D3 and Vitamin K2 supplements, and decided to measure INR and Vitamin D levels. INR was OK.

Vitamin D levels came back the next day, and a couple of days after that Dr LH called to discuss them:

Test Name	Result		Units
25-Hydroxy D2	<4.0		ng/mL
25-Hydroxy D3	71		ng/mL
25-Hydroxy Total	71		ng/mL	Total (D2+D3) optimum level is 25-80 ng/mL

Dr LH pointed out that the Total Vitamin D is near the high end of the optimum range, and suggested that I cut my Vitamin D3 from 5000 units per day to 2500 per day, which is easy enough to do. Arguments for doing that (these are from my own research):

• Some authorities believe that it is possible for continuously-high levels of Vitamin D to cause high serum calcium.
• In some individuals, high levels of calcium can result in deposition of calcium in arteries, atherosclerosis.
• There is really not enough research to determine the safe amount of supplementation.

Arguments against reducing Vitamin D supplementation:

• According to the Vitamin D Council, toxicity begins at about 200 ng/mL and higher. They suggest an upper limit of 100. Other authorities seem to agree, though research on humans is lacking and individual responses could vary widely.
• The purpose of the high Vitamin D3 intake, along with Vitamin K2, is to combat bone loss. In a one-year test this seemed to be effective, with two density scans a year apart showing no measurable difference in density. It's just one short test, but I'm reluctant to make a change that might reduce the effectiveness of this treatment.

So what to do? My serum calcium levels have varied widely in recent months. Below is a chart of recent measurements.

Possibilities: cut the Vitamin D3 supplement in half or leave it the same for the current cycle, and, either way, the serum calcium might stay high or it might go down. But if I cut the D3 in half and calcium remains high, then we should worry about a myeloma hot spot in a bone somewhere. That's the worst case scenario here, so let's check for it.