Saturday, March 6, 2010

March 4, 2010, end of Cycle 26:

Two years ago this week, I started on a trial of the new drug pomalidomide (then called CC-4047) with dexamethasone (DEX). Within a few months my M-spike was down from 2.7 to 1.0 g/dL, where it has remained since, going as low as 0.8 and as high as 1.1. Pomalidomide is good stuff. It seems to produce a response in most myelomiacs, including many for whom other treatments have failed to work. I do hope that Celgene and the FDA can get together quickly and get it approved.

I am currently taking only two prescribed drugs: (1) Pomalidomide, 2 mg per day; and (2) Aspirin, 325 mg per day. I would also take acyclovir to ward off shingles, but acyclovir is hard to get right now.

M-spike was unchanged at 1.0 g/dL at the end of this 28-day cycle. IgG was down 4% at 1130 mg/dL, which is probably good - IgI varies. Lambda free light chains (FLCs) are down a surprising 24%, yet Kappa FLCs are up, suggesting that the Lambda decrease is genuine. I'm not sure what the decrease in Lambda means, but it can't be bad. Total white cell count was 3.4 K/uL, down slightly to the lowest value I've ever had, just below the bottom of the reference range. But the white count bounces around, and neutrophils even went up a little, so we'll just watch it.

At worst, the tumor burden appears stable, despite discontinuing DEX three cycles ago, and at best it may have decreased just a little. Furthermore, neutrophils have stopped their downward slide. I'm a happy camper.

Dr L also ordered a bone-density (DEXA) scan this time. The result for the lumbar spine, vertabrae L1-L4, is a decrease in absolute density of 2% compared with another scan 2 1/2 years ago at a different facility. I'd rather it was an increase, but there could be that much variation between machines, and I'll take it. Results for the femur are less clear to me, because the previous facility reported only one value for femur, and Mayo reported two, called "femur neck" and "total hip." If the "femur neck" value is comparable to the femur value from the previous report, then density actually went up by about 5%. This is possible, because Vitamins D3 and K2 are known to strengthen bones, and I take them very regularly. In any case I still have osteopenia, but not osteoporosis, and I hope to discuss this more with Dr L.

Differences this cycle:
  • Dr L ordered 3 days of Biaxin at the beginning of the cycle. More about that below.
  • My 30-year chronic headache has started to return, now that I'm off DEX, and I took a capsule of naproxen sodium whenever the headache reminded me, once every day or two. Two years ago, not long after the trial started, the decline in M-spike gradually leveled off in the same months that I gradually stopped using naproxen. Was there a cause and effect? Since Celebrex (celecoxib), a similar NSAID, is thought to have a modest anti-myeloma benefit, it is possible that naproxen might also. In my amateurish and hopeful opinion, it is even possible that pomalidomide and naproxen might be synergistic. If so, we'll take advantage of it.
  • I started taking a new supplement, sodium copper chlorophyllin, one week before the blood draw. A recent article in Life Extension Magazine suggests that chlorophyllin may support neutrophil counts during chemotherapy. My neutrophil count did stop falling this time, actually going up slightly from 1.22 to 1.29 K/uL. Neutrophils bounce around a lot however, in response to bacterial threats in the body, so this is not very significant.
  • We ran another marathon eleven days ago. I've never noticed that a marathon affects the myeloma results, though.
Discussions with Dr L:
  • Biaxin (clarithromycin) is known to potentiate the combination of DEX and an IMID drug, such as Revlimid or thalidomide, and probably pomalidomide. Biaxin is no help by itself, and no one knows whether it would work with ONLY the IMID drug, without the DEX. Dr L prescribed a three-day course of Biaxin a month ago, to prevent a minor skin injury from becoming a major infection. Could those three days of Biaxin have helped the pomalidomide work on my tumor burden, even though I'm not taking DEX, and even though only three days?
  • She looked at the skin injury, now just a red spot, and thought it was healing rather slowly. In contrast, I thought it was healing fairly quickly compared with similar, prior experiences on DEX.
  • I asked if neutrophils are important to warding off shingles, since my neutrophils are slightly below the bottom of the reference range. She said no, that neutrophils attack bacterial infections, and lymphocytes are more important for shingles and other viruses. Happily, my lymphocytes are smack in the middle of the reference range.
  • Somehow the subject of Velcade came up, and she expressed the opinion that Velcade might not be in my short-term future, even if pomalidomide begins to fail, because the twice-weekly infusions and the attendant neuropathy would mess up my very-active lifestyle. I didn't mention that I would prefer once-weekly infusions, and by the way whose lifestyle is NOT messed up by Velcade infusions? I was happy with her patient-centered concern though. Anyway the discussion of the NEXT treatment after pomalidomide seems farther off now that it did a cycle ago.
  • I don't recall how this came up, but at one point Dr L said that in a given instance there may be a choice between any of several treatments, all of them good, none of them wrong. Anyway that's what I thought I heard - there may not be a BEST choice.
  • I had a bone-density (DEXA) scan this time. When the results of the scan were unknown, I mentioned to Dr L that if a bisphosphonate is indicated, I have a very strong preference for oral rather than IV. To my surprise she agreed wholeheartedly, saying that new information is coming out indicating that myeloma doctors may be over-treating with the IV meds (Aredia and Zometa). The half-life of those bisphosphonates in the bones is 10 years (or did she say 20 years). Too much bisphosphonate may stop the bones from losing density, but the bones may not regenerate themselves. Instead they become brittle and subject to fracture, especially the femur near the hip. Mayo will be coming out with a modification of their mSMART protocols, which may include oral bisphosphonates. At least three different oral bisphosphonates are available, and she wasn't yet sure which she might prefer for me. I think I'd also consult with my primary care physician, my other Dr L, who has a lot of experience with oral bisphosphonates.
What's Next:

I've been taking curcumin 8 g/day, sixteen capsules, and I'm tired of doing that. I might even say I hate it. Curcumin could be helping, but I have little evidence, so I'll stop it and see what happens. Quercetin too. I'll go back to one 500 mg capsule of curcumin per day, and no quercetin, reducing my daily consumption by 23 capsules. Yay!

The chlorophyllin supplement is new, and I will continue that, to support the neutrophils and because it is a good anti-mutagenic agent. I will also take one naproxen capsule per day. I use the liquid type, in the hope that it will be less likely to burn a hole in my innards as some NSAIDs can do.

Some current test results:

Test    Dec 10    Jan 07    Feb 04    Mar 04     Remarks
M-spike g/dL 0.9 1.0 1.0 1.0 Best tumor measure
IgG mg/dL 1090 1110 1180 1130 Variation is normal
L FLC mg/dL 2.36 2.18 2.78 2.10 L Free light chains
Calcium mg/dL 10.0 9.6 9.8 10.1 Below 10.2 is best
Creat mg/dL 1.1 1.1 1.1 1.0 Kidney, normal
HGB g/dL 14.3 14.4 14.2 14.7 Hemoglobin, normal
RBC M/uL 4.00 4.05 4.00 4.17 Red cell count, low
WBC K/uL 3.7 3.5 3.8 3.4 White cells, low
ANC K/uL 1.55 1.38 1.22 1.29 Neutrophils, low

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. Somewhat technical.
My Supplements With links to where I buy them.

Leftover organic chicken or turkey, baked organic sweet potato slices, organic broccoli, jalapena tomato sauce.


  1. I have to catch up on the other posts, but I saw your concern about shingles. Have you been having outbreaks? Have you ever tried Famvir? I've only (only!) had shingles 3 times since dx, but have had an rx for Famvir each time. The dose schedule seemed easier.

    I'm with you on the idea of using Velcade once a week, if that's possible, if you need it. That's what I'll try if the time comes for it. It did change my thal-induced PN to a more painful condition, so that's one good reason to not want so much of it.

    Your blog always makes me want to eat!

  2. Hi Beth,

    No shingles yet. The acyclovir was prophylactic, hoping to prevent shingles or reduce the severity. Dr L suggested Famvir and then thought maybe I don't need anything at all yet. I think perhaps acyclovir was part of the study protocol, but now that availability is spotty, she's doing what she would do for any patient off-study.

    Other studies are definitely showing that once-weekly Velcade causes far less neuropathy than twice-weekly, and gets you to the same response, just not quite as fast.

  3. I happen to like stable, quite a bit actually. I'm trailing several cycles behind at 19 with a few breaks on just Revlimid and warfarin. My oncologist pulls people off Dex ASAP under the unproven belief that immune suppression should only be used when needed, not regularly. Your normal antibody levels should improve when not on Dex (and just might attack a few MM cells!) if the MM is being controlled by the pomalidomide alone.

    You might consider presenting levels as a percentages instead of an absolute numbers. That way it is totally intuitive for even non MMers to follow. I pick a target value, for example the CR or VGPR level, to normalize against. If your level goes to 100% you have reached the target... some values go up, some down, but 100% is always the goal.

    Another suggestion would be to subtract your M-spike from your IgG level to give you an indication of your healthy IgG antibody level. Your IgG FLC and healthy IgG level should track each other. The M-spike usually doesn't have as many significant figures so it is a less than optimal methodology.

    I also love the wonderful pics! Mmm Mmm Good!

  4. Yay for eating fresh organic food! Never go back, there is so much crap in the modern diet. I'm a breast cancer survivor and your blog has always been a help for me. My worst side effect from chemo was heat, cold sweats, and insomnia. I work for ChiliTechnology so I started using one of these and it was a great help to me: ChiliPad (it's a mattress pad that lets you cool the bed down to any temperature you set - it has a range from 46 to 118 degrees). I also went on an all organic macrobiotic diet, which really helped with detoxing from the chemo (and I've never gone off the diet, because I feel better eating this way than I did before cancer). The other thing I did that was really important to my healing was watch tons of stand-up comedy. I really believe laughter is the best medicine.