So What's All the Fuss?

I'm sure that I will find out! But so far, the first morning after the first dose of CC-4047 2 mg and dexamethasone (dex) 40 mg, I feel quite normal. I was a little restless toward morning, but that's not unusual, and not surprising in these circumstances. I got back to sleep and awoke refreshed. Are my thighs a little tired feeling, or am I imagining that? Time will tell.

This is Saturday morning, so normally I would be running with the St Croix Valley Runners right about now, but it's six degrees BELOW zero and I have wimped out! I'll run on the indoor track at "the club" later today, with my sweeties. That will be an interesting test.

Yesterday's visit to Mayo was uneventful, really. No more holes poked in me. We did a lot of talking and I picked up the CC-4047 and dex. A few things got resolved:

• Logistics: I will get weekly blood tests (CBC) at the Stillwater clinic, faxed immediately to Mayo, to be sure that my blood counts remain within a normal range.
• For a few months I will return to Mayo every month; I already have an appointment for April. If things go well, I will later have some of my monthly appointments with Dr Petryk at MOHPA, to save the drive down.
• Dr Lacy does NOT think that the lambda light chains are a sinister part of my myeloma, so she has not ordered 24-hour urine collections. That's a minor inconvenience (major for women) that I will not face every month.
• WITH the CC-4047 and dex I also take:
  • 325 mg aspirin daily, half at night and half in the morning, to ward off deep-vein thrombosis (DVT) from the CC-4047,
  • Ranitidine (generic Zantac) tablets 75 mg, one in the evening with the dex, and one the morning after, to reduce stomach acidity and hopefully ward off ulcer,
  • 400 mg acyclovir to ward off shingles, because I'm messing with my immune system.
• Dr Lacy gave me a 2006 Mayo Clinic study of the clinical effects of green tea (especially EGCG) on patients with early-stage chronic lymphocytic leukemia (CLL). The results were quite positive, and even though myeloma is different from CLL I will continue with the EGCG.
• I will continue with the curcumin as well, but haven't decided about other supplements. Need to make an appointment with my naturopath.
• My electrocardiogram shows "marked sinus bradycardia" (slow heart rate). That means I'm a runner!
• The bone survey shows "generalized spotty osteopenia" (between normal and osteoporosis) but no lesions from the myeloma. We know, though, that x-ray doesn't always show lesions before the bone breaks.
• After seeing that, looking at my previous bone density results, and knowing that I would be taking dex, Dr Lacy decided to prescribe pamidronate (Aredia) in a modest amount. But as we discussed this, she guessed that she didn't really care what bisphosphonate we use, and thought that Boniva or Fosamax would do as well. Those simple pills are much more convenient than 90-minute Adedia infusions at a hospital. I got away without the prescription actually in hand, but will eventually probably be taking a generic version of Fosamax weekly to maintain bone density.
• She volunteered that the running certainly helps as well.
• I intend to have a visit with a physical trainer to learn some good exercises for strengthening my back muscles, because (as the naturopath HH points out) bones will strengthen wherever the attached muscles are worked and strengthened.

I feel good about being personally proactive. If I had not made the desision to go to Mayo, I would not have had the PET scan and would not have learned about the lesions in my shoulder blades and spine. Further, I would not be in the CC-4047 trial.

The CC-4047 is 2 milligrams. How can two little milligrams of anything be so potent? Better living through chemistry (I hope).

Live well and long.

More Thoughts About Marching

Margaret and Ana, Thank you both for your comments on the previous post. My heros, two kind and clever women in Italy! I do feel better.

The decline of 3% in M-spike is probably well within the margin of repeatability of that test, but at least it suggests that monoclonal proteins did not go UP. I do not know of any reason why the normal IgG should have gone up - I was not dealing with any kind of infection that I know of on blood-draw day - but of course it could be due to a transient subclinical infection of some kind. Perhaps the myeloma is not marching; we shall see in five weeks or beyond.

Meantime I will:

• Continue with the curcumin,
• Add low-dose naltrexone,
• Add resveratrol and perhaps more,
• Get the bone survey (I had a skull MRI done in April),
• Look into the new Life Extension Curcumin and perhaps use that for part of my daily dose,
• Examine the Mayo mSMART concensus protocol more carefully (I believe that this will indicate that I should not treat conventionally until CRAB symptoms appear), and
• Think long and hard about treatment philosophy when and if conventional treatment really is necessary.

That last item includes the decision whether to treat it with the minimum required to keep it under control, or clobber it (thereby also clobbering my body) in the hope of getting a remission which will allow some months or years treatment-free.

In answer to other very good questions:

• The doctor said that some calcium is bound in the IgG, so the calcium measurement in the normal Chem-20 panel would naturally rise with the IgG and might not be a separate indicator. In five weeks he will order another test for what I believe he called "free calcium," which will be more definitive.
• I did not ask about vitamin D but I do take 1000 IU daily, or is it 2000?
• I have had a thyroid test (T4 and another) which were normal. However, my primary physician thinks I neverhteless have the beginning of a goiter (!), so that is a concern and I have started taking a thyroid supplement which includes bovine tissue.
• I will ask my doctor about another cranial or spinal MRI.
• My onc just didn't order the B2M test, for some reason. Since it was also trending up I think he should have, and he said that will be included in five weeks, along with the extra calcium test.
• I've had three BMB's so far, with the most-recent showing only 6.8% plasma cells. However, all three biopsies are from the same hip; next time I will switch hips!
• I'll check into PET as well.

Thank you both for your thoughtful comments. I encourage you to keep on saving my life :-)

Marching, Marching ...

Myeloma doesn't give up easily.

I started a curcumin regimen on June 27. Today I got the results. They were not terrible, but sadly, they do not show much benefit from nine weeks of curcumin treatment. Here are some numbers:

• Free lambda light chains are down 12%, and
• “Spike” (SPEP) is down 3% to 1.90 g/dL, but
• IgG is UP 12% to 3110 mg/dL, and
• Serum calcium has edged up to 10.4 mg/dL, which is above the normal range for the first time ever.

Actual values from key tests are displayed graphically in the charts and numerically in the test result table. At bottom, it appears that the cancer is still advancing slowly and relentlessly. That’s what it does, and in my case the curcumin seems to have little effect.

Doc and I had quite a discussion today. He really wants to put me on Revlimid right away. I have lots of questions about that, such as:

• Should we hit it easy, shoot for a partial remission and stability, or
• Should we hit it hard, with more drugs, and shoot for a longer-term remission?
• Why Revlimid and not Velcade, when we know that Thalomid (thalidomide), another “IMID” drug, has already failed?
• Why not wait until there are symptoms, as Mayo would do?
• Is the above-normal calcium already a symptom?

We didn’t decide these issues; I put off the decision for another month at least. Meantime he reluctantly consented to prescribe low-dose naltrexone (LDN) for that period, five weeks actually. I will take that prescription drug, along with the curcumin and perhaps another supplement, for those five weeks and then we will see. In addition, he ordered another x-ray skeletal survey, which I will schedule ASAP.

The doctor believes that time is getting short, looking at the high IgG of 3110. But if that is a problem, it should also show up in other tests, which so far look pretty normal. Or it will show up as lesions in the bones, which we will soon determine. I’m trying to get the right balance here, of risk from the myeloma versus risk from the drugs that treat myeloma.

Meantime, I figure on living life to the fullest. Live one day at a time and make it a masterpiece!

Related links:

• My Myeloma: A discussion of my myeloma, not very technical.
• My Treatment History: Not technical.
• My Lab Test Charts: Graphic displays of several key test results over time, like the one below showing IgG from 2003 to date.
• My Lab Test Table: Best with a wide browser window. Very technical.

Pee in a Bottle

Tomorrow I take the test! Blood test, that is, and I'll contribute my other little donation to the lab. Usually I get these tests:

• Complete blood counts (CBC), which includes counts of red cells, white cells, platelets, hemoglobin, and the like. Lots more, most of which the doctor doesn't even look at unless they go out of range.
• Chemistry, which includes calcium, sodium, potassium, and other mineral counts plus several other very important indicators such as creatinine (kidneys) and albumin (liver).
• Serum Protein Electrophoresis (SPEP) which shows how much of the protein in the blood is in the form of "monoclonal" proteins that are cast off by the malignant plasma cells of myeloma. This is a crude but important indicator of the actual tumor burden. Myeloma patients call this the "spike," because it actually does show up as a peak on a graph. Bad Spike!
• Light Chains, a particular component of the monoclonal proteins which can clog up internal organs and make things a lot worse, in fact they can make you dead. The doctor tests for light chains in the blood and also in the urine.
• Other stuff. Sometimes they do x-rays, bone density measurements, bone marrow biopsies, and other tests. None scheduled this time, but maybe if the blood tests indicate an issue.

The big jug shown above is for a 24-hour urine collection. Little more than a nuisance for a man, it's a bit more troublesome for a woman (so I hear). That urine is tested for light chains, and perhaps for other naughty proteins. The jug holds a gallon, and I never fill it, but I'm told that some people need two or even more.

I'll see the doctor in another week to review the test results. If the numbers are stable or down, then the curcumin regimen is doing some good and we will no doubt stay the course. If they are up, then I know that the doctor will recommend Revlimid, a fairly new treatment which I am reluctant to start for several reasons. I will most certainly post.

Good X-Ray Report

At my last doctor visit I mentioned a slight ache in my left upper arm, and the oncologist ordered an x-ray just to rule out a plasmacytoma, which can surprise any myeloma patient at any time. The results are in: NO PROBLEM. That's a relief, and it helps with another decision.

I have a tooth that's rather iffy - hemi-section and root canal years ago, and now starting to get weak at the root. My dentist has suggested it's time to take it out. No pain, though, and no relation to myeloma.

EXCEPT: myeloma attacks bones, and that usually requires treatment by bisphosphonate drugs such as Aredia (pamidronate) or Zometa (zoledronic acid). These are the heavy-duty cousins of Fosamax (alendronate) and similar drugs used to treat osteoporosis. Aredia and Zometa can help rebuild the myeloma-weakened bones, but they can also cause a serious side effect called osteonecrosis of the jaw (ONJ), a very unpleasant and somewhat dangerous condition. ONJ often starts when a person taking Zometa or Aredia has dental surgery.

I've been holding off the removal of that bad tooth while waiting for these x-ray results. If the x-ray had disclosed a problem in the bone, I would have been headed for heavy-duty bisphosphonate treatment and would not want an open hole in my jaw. But with this all-clear signal, I'm going to get that sucker out and get the jaw healed right away.


Supper:

Free-range bison, no-hormone no-antibiotic beef, organic sweet potato, organic carrots, onion, organic catsup. Estimated Weight Watcher points = 6.

Next-day's lunch:

"Take and Bake" organic honey whole grain bread, cold roast free-range bison and anti-biotic-free hormone-free beef, organic bread and butter pickles, organic nectarine, organic cashews. Estimated Weight Watcher points = 7.

Busy bee on the Garden Tour.