Monday, June 30, 2008

Diabetic for a Day

Or two. DEX makes us temporarily diabetic by messing with the glucose transport system, which decreases the body's normal ability to move glucose out of the blood and into muscles and other organs.

I have a blood glucose monitor and did a simple study of my own blood glucose, taking a reading every half hour or so all day long, on four different sore-fingered days. Here is the bottom line result, where Day 1 is the next day after taking the DEX the previous evening. The "glucose" value is an average for the whole day, expressed in mg/dL:

Day  Dose mg  Glucose   Comment
1 40 144   Highest was 193
2 40 101
5 40 88   DEX effect must be gone
1 20 116

Click to enlarge, BACK to return right here More information about this little personal "study" is detailed in earlier blog posts HERE and HERE. Graphics included. The graph here shows Days 1, 2, & 5 on 40 mg DEX.

I am NO expert in diabetes, but when Dr. L at Mayo saw the graphics and numbers for Day 1, she reduced my DEX dosage from 40 mg to 20 mg. The glucose spike of 193 mg/dL seemed to be a particularly important factor. Fasting glucose for a non-diabetic should be in the range of 80 to 120, and diabetics are urged to keep their glucose, fasting or not, below 180.

Many diabetics will need insulin shots along with a careful diet, but those of us who are not normally diabetic already have the insulin, except that its effect is inhibited by the DEX. Therefore we need to manage our temporary DEX-induced "diabetes" at least partly through diet. When I asked Dr. L about this, she commented that several of her patients are eating a low-carb diet on DEX day.

Here is a set of dietary principles that I have recently been following, with the help of Sunshine and Sweet Pea (they're the cooks!), on DEX day 1 and, to some extent, on Day 2:
  • Most important: Keep the amount of food modest, because all food raises blood sugar. I do this with Weight Watchers "journaling," but calorie counting would work too;
  • Reduce carbohydrates in favor of protein, and good fats such as nut oils, olive oil, and fish oils;
  • Prefer carbohydrates with a low glycemic index, to reduce the glucose spike;
  • Eat some of the protein and fat first at each meal, because this slows the entire digestive process and thereby moderates the glucose spike;
  • Good food: Chicken, fish, vegetables, nuts, eggs, certain fruits and berries, legumes, whole-grain foods; and
  • Bad food: Sugar (except fructose), soda, potato, candy, white bread or any relative, (the list goes on).
One caution: People whose kidneys are already at risk should be careful about increasing protein, and every myelomiac should take plenty of fluid to help the kidneys. As always CONSULT YOUR DOCTOR! But don't settle for "oh, don't worry about it." This is real, and somewhat outside the experience of many oncologists. Know what you are talking about, be your own advocate, and press a little. If you're interested, a blood glucose monitor costs between $30 and $100 with supplies.

You might notice that the foods that we eat on the DEX diet are foods that are really good for us anyway, and delicious. Those that are bad are ones that we never eat, ever. We just tilt the balance of protein, fat, and carbohydrates. So except for the protein issue for those with kidney disease, there is no downside to eating like a diabetic for a day or two. The food can be wonderful!

I wholeheartedly invite your comments, pro or con, and I especially hope that you will straighten me out if I have made any errors, or share with us if you have something to add.

Examples of DEX day meals that I have recently eaten. Oh, the suffering that we put ourselves through :-)
DEX lunch
Today's DEX lunch: Organic chicken breast, Jim's broccoli, dill cheese, organic strawberries. Weight Watchers points = 6.

DEX Salad
Today's DEX salad: Organic romaine, cucumber, avocado, organic cashews, organic strawberries, pecans, organic red wine vinegar. Weight Watchers points = 6.

DEX Dinner
Yesterday's DEX dinner: Wild-caught Alaskan sockeye salmon, organic lime, Jim's organic beet greens, spinach, and onions, with a few organic raisins, plus orange and mango. Weight Watchers points = 8.

Thursday, June 26, 2008

Equivocal Results

In early March I joined a phase-2 trial (study) of Celgene's new IMiD drug CC-4047, with once-weekly dexamethasone. The first three cycles brought very good results, each with approximately a 25% reduction in markers, but this fourth cycle was less spectacular. My two primary markers are IgG and M-spike:
  • IgG is actually up 15%, definitely the wrong direction and suggesting an increase in monoclonal protein. However, IgG has a normal variation because it responds to bacterial and viral threats to the body, so the increase may be entirely normal and could mask an actual decrease in monoclonal protein.
  • M-spike is down 8%, and although that test is the best measure of monoclonal protein, it may only be accurate to 5% or 10%. Lambda free light chains are also down slightly, however, which does lend more credence to an actual decrease in M-spike.
I get to interpret these results as I please, and I say that there is a modest decrease in monoclonal protein and therefore, most likely, a decrease in tumor burden. So there.

Side effects of the two drugs, CC-4047 and dexamethasone (DEX), are described in a previous post.

We will continue with 2 mg of CC-4047 daily and 20 mg DEX once weekly for the fifth cycle. Here are some related links:

    My Myeloma     A discussion of my myeloma.
My Treatment History Not technical.
My Test Charts Charts of key results over time.
My Test Result Table Needs a wide browser window. Technical.

Other things that Sunshine and I discussed with Dr. L today:
  • I have noticed a slightly irregular heartbeat, an occasional extra beat actually, on two mornings while laying in bed on my left side, both times a day or two after taking the DEX. The irregularity goes away if I move off my left side. Neither Dr. L nor I are very concerned about it.
  • I am NO fan of DEX, but for a day or two after taking it I do notice some unexpected benefits:
    • My chronic headache disappears and I don't need to take my usual naproxen;
    • My BPH also disappears; and
    • So does my nighttime stuffy nose, for which I otherwise take a nightly nasal spray.
  • The meaning of LDH: It is a non-specific marker of "cell turnover" (cell death) which was once of some value in prognosis for a newly-diagnosed patient because it correlated inversely with survival. However, other problems such as heart disease can also give rise to high LDH, resulting in an incorrect cancer prognosis. Newer markers are much more specific to myeloma, and Dr. L wondered if LDH should even be included in the standard battery of tests any more.
  • I asked why the myeloma drives IgA and IgM (in my case) so low, and Dr L responded that the reason for that is not yet well understood.
  • Though I'm a long way from "remission" at this point, we discussed the three treatment options that seem to be available after remission is achieved: (1) Continue treatment; (2) Continue treatment at a reduced dosage or frequency; or (3) Stop treatment and wait watchfully. Dr. L confirmed that the studies which have been done thus far do not clearly indicate a survival advantage for any of the three.
Here are a few specific test results:

Test   5/29   6/26   Remarks
IgG mg/dL 1260 1450 May be a normal immune response
M-spike g/dL 1.2 1.1 I hope this is real!
L FLC mg/dL 4.25 4.03 Down is good
Calcium mg/dL 9.7 10.1 Hopefully just a normal swing

In addition, the absolute neutrophil count (ANC) dropped from 2.41 last time to 1.65 this time. This could indicate that the CC-4047 is suppressing the neutrophils, and if that happens we will have to change the test regimen. However, there is a note in the results saying that the ANC was derived in a different way this time and may not be comparable to previous results.

I'm more concerned about a remark in the CBC results saying that "toxic neutrophils" are present. I'm not quite sure, but I think it means that my body actually is dealing with a minor infection (I do have a sore nose), or maybe a muscle-repair job from the marathon that I just ran.

Perhaps I'll call Dr. L.

Friday, June 27: Dr. L says it's nothing to be worried about, probably just a normal response to a minor infection or other threat, so I won't worry.

Fruity breakfast: Gluten-free oatmeal, organic flame raisins and dried cranberries, organic strawberries, organic nectarine, blueberries, organic cashews, mango, organic pomegranate juice, organic nonfat milk.

Saturday, June 14, 2008

Agent Orange

Vietnam veterans and other veterans who have myeloma and who may have been exposed to the herbicide/defoliant Agent Orange are eligible for benefits from the Veterans Administration and other agencies. There is no conclusive evidence that Agent Orange causes myeloma, but there is some evidence and it is acceptable to the Veterans Administration. If you are a veteran who was exposed to Agent Orange, then you may know the cause of your cancer.

But what about those of us who were not in the military and certainly were not knowingly exposed to Agent Orange. It is quite possible that we WERE exposed, not to Agent Orange but to other commonly-used commercial weed killers containing the same ingredients as Agent Orange. One of those, widely available in the USA and fairly typical, was Ortho Weed-B-Gon, which once contained two primary ingredients: 2,4-Dichlorophenoxyacetic acid (2,4-D); and 2,4,5-Trichlorophenoxyacetic acid (2,4,5-T).

The second ingredient, 2,4,5-T, was also marketed separately under the brand name Silvex. It contained a dioxin called TCDD, produced as an inevitable by-product of manufacture. TCDD is toxic to humans in the smallest qualtities, and was banned for use on agricultural crops in 1970, but remained in use for lawn weed control until 1985. TCDD can cause cancer 20 years or more after exposure.

The first ingredient, 2,4-D, is still widely in use in the USA, most European countries, and most of the rest of the world. Most government agencies have concluded that it is safe. However, a different dioxin called DCDD is present in 2,4-D, and some believe that DCDD may be as harmful to humans as TCDD. It is banned for use on lawns in a few countries including Denmark, Sweden, and Norway.

Agent Orange was a mixture of approximately equal parts of 2,4,D and 2,4,5-T. Commercial lawn preparations of the 1950's, 60's and 70's typically included more 2,4,D than 2,4,5-T, but only a little 2,4,5-T could contain enough dioxin to be harmful.

Personally, I have used Weed-B-Gon nearly every year since the late 1950's. I have sprayed thousands of gallons of that stuff, some of it on dandilions and much of it to control poison ivy. Most recently, of course, Weed-B-Gon has not contained 2,4,5-T with its TCDD dioxin, but it always contains 2,4-D with DCDD. Was my myeloma caused by exposure to 2,4,5-T twenty, thirty, or even fifty years ago? Was it caused by 2,4-D more recently? We'll probably never know. But you may be sure I'll be wearing a very high-quality mask the next time I attack that poison ivy. No more bare-faced Don.

Breakfast with lots of antioxidants: Gluten-free oatmeal with organic flame raisins and dried cranberries, mango, organic strawberries, banana, blueberries, cashews, organic pomegranate juice, organic nonfat milk.

Monday, June 2, 2008

Good News from ASCO

The International Myeloma Foundation (IMF) has posted a news article announcing findings presented at the American Society of Clinical Oncology (ASCO) last week indicating that "novel" treatment options such as Revlimid and Velcade have significantly improved patients' survival. In particular:
  • Two-year survival has increased to 93% for newly-diagnosed patients. The survival rate for people without myeloma is only three percent higher,
  • Velcade has produced a high complete-response (CR) rate, and
  • Further improvements are made by using Revlimid and Velcade in sequence or in combination.
The IMF believes that we are coming closer to making myeloma a chronic disease instead of a fatal one.

Stick around, it's getting better and better!