Celebrating Four Years on Pomalidomide

This month is the fourth anniversary of my start in the pomalidomide study, and today is the end of the 52nd 28-day cycle. The news is pretty good.

Bones: Because calcium has been a little high lately, suggesting a possible bone issue, we did a skeletal survey and a bone density scan today. Quote from bone survey report: "Generalized spotty osteopenia without localized lytic lesions. No change since 3/4/09." That works for me! Although x-ray doesn't always show myeloma lesions, this report means that I probably do not have a bone on the verge of breaking. Furthermore, the bone density measurements were the same as two years ago, within the measurement accuracy of the DEXA system, so my overall bone health is good. That's all good news. I do not take Fosamax, but I do take Vitamin D3 and Vitamin K2 (not Vitamin K).

Cancer markers: IgG dropped significantly, from 1280 to 1100 mg/dL, and M-spike obediently followed, dropping from 1.1 to 1.0 g/dL, where it hasn't been since last September. That's very nice. I doubt it's a trend, but wouldn't that be great? Lambda light chains are up, from 1.99 to 2.80 mg/dL, but kappa chains are up too and anyway I'm not sure that light chains are an important marker in my particular myeloma.

Other: Calcium is still high, at 10.3 mg/dL, but that could be a lingering effect from the marathon last Sunday. Some dehydration happens in a marathon, like it or not, and recovery takes a while. Liver markers are at the top of the reference range, too, but we might attribute that to the marathon as well. Neither is an issue right now. Both the red blood cell count and the white cell count are a bit lower than usual though, and I don't know what to think of that. We'll see what they do next month. Actual counts are shown below.

Doctor L:

• I pointed to a rash on my leg, suggesting that it might be from the Bactrim DS antibiotic that I've been taking, or perhaps it could be from shingles. She said that it could be the Bactrim, which has a reputation for causing rashes, but that it wasn't shingles. I was taking the Bactrim to deal with an infection in my jaw, a bad tooth, but the tooth is getting better after some dental work and I stopped the Bactrim a few days ago. The rash looks a little better already, but not enough yet to know for sure that Bactrim was the cause.
• I asked again how long I can remain on the pomalidomide study, and she confirmed that I can probably take it until my myeloma no longer responds to it. She knows of one myemomiac who was in the first Revlimid study and is still on it after eight years.
• We discussed my sports hernia (abdominal wall strain, athletic pubalgia) and she actually suggested acupuncture. Some of her patients have found great relief from neuropathy through acupuncture, when all else failed. This is about healing, not pain relief, but who knows? I'm actively seeking an acupuncturist - willing to try anything to avoid surgery.

Most-Recent Test Results:

Test		Dec 14		Jan 12		Feb 07		Mar 08		Remarks
M-spike g/dL		1.1		1.2		1.1		1.0		\ Tumor marker
IgG mg/dL		999		1190		1280		1100		/ Tumor marker
Lambda mg/dL		3.15		2.24		1.99		2.80		L Free light chains
Calcium mg/dL		10.3		10.0		10.2		10.3		High
Creatinine mg/dL		1.1		1.0		1.0		1.0		Kidney, OK
HGB g/dL		15.1		15.1		15.2		14.2		Hemoglobin, OK
RBC M/uL		4.17		4.36		4.18		3.86		Red cells, low
WBC K/uL		4.8		4.8		4.5		3.7		White cells, low-norm
ANC K/uL		1.90		2.40		1.70		1.50		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		Somewhat technical. Best with a wide browser window.
My Supplement Regimen		With links to where I buy them.

Two lovely volunteers with the three of us after the B&A Trail Marathon last Sunday:

Fighting Secondary Cancers

I'm cheerful today, after visiting Mayo Clinic for the end of the 38th 28-day cycle of pomalidomide. IgG is up a paltry 3%, from 1170 to 1200 mg/dL, but M-spike is down a whopping 17%, from 1.2 to 1.0 g/dL. I don't actually believe that my monoclonal proteins dropped that much, because last month's figure was a medical impossibility (higher than IgG), but it feels good anyway. See, it doesn't take a lot to make me happy. We celebrated with a couple of bowls of kettle-popped organic popcorn.

STABLE is the proper description:

The myeloma is stable. IgG has varied between 923 and 1350 mg/dL since July of 2008, two and a half years. I just want to stay on this regimen forever, running marathons and otherwise enjoying life. It doesn't work that way, but so far pomalidomide has given me nearly three years of normalcy.

When pomalidomide fails, what's next for me?

Every treatment fails eventually - that's a dependable feature of myeloma. Apparently, though, I will have plenty of options. I've had thalidomide, pomalidomide, dexamethasone, and low-dose naltrexone so far, no other doctor-prescribed treatments. There are Velcade studies at Mayo right now, and Carfilzomib, plus several new agents which work in magically new ways. Dr KDS mentioned Phase I, II, and III trials - lots going on, and I might be eligible for several of them. I'm feeling good about the future.

We even discussed bone marrow transplant, but I'm not sold on that, for me. I have a slow-moving variety of myeloma, and I'm hopeful that it can be managed by using the existing treatments in a serial fashion and, perhaps, by taking advantage of new ones as they come along. The cure for myeloma is to live long enough to die of something else, and that's my plan. Meantime, life is to be lived!

What About Secondary Cancers?

There is new evidence that long-term treatment with Revlimid, such as Revlimid maintenance after a transplant, may result in an increased risk of second primary cancers including lymphoma, leukemia, and solid tumors. The risk is still low, perhaps less than 5%, but studies seem to show that it is somewhat increased compared with people not on Revlimid maintenance. Doctors are trying to quantify this risk now, to determine whether it says anything for or against long-term maintenance. The Myeloma Beacon has a very current article on this issue.

So what about pomalidomide? Thalidomide, Revlimid (lenalidomide), and pomalidomide are all immunomodulatory drugs (IMiDs). They all "modulate" the immune system, suppressing it to some extent, in their multi-pronged campaign against monoclonal plasma cells.

THE FOLLOWING ARE THE SUPPOSINGS OF A NON-DOCTOR. READ AT YOUR OWN RISK: We know that an important role of the immune system is to kill cancers before they can get started. The DNA of a cell goes wacko (technical term) for whatever reason, say a coincidental zap from a gamma ray that left the star Alpha Centauri 4.2 years ago, or a treatment by an alkylating agent like melphalan, or a radiation treatment for something, or even a PET scan. The immune system detects the wacko cell and swats it down. Game over.

If the immune system is suppressed, however, maybe it wouldn't detect the wacko cell, or maybe not until that naughty cell has multiplied and the group has become too strong and adaptable for any immune system to swat it down. Thus the drug doesn't actually cause the cancer, it simply opens the door for it. Again, this is all supposition; I am not a doctor.

If something like that is happening, though, we might see secondary cancers in people taking other IMiDs like thalidomide, if we look, and eventually perhaps in those of us taking pomalidomide. Dr KDS says that there really is no information on that last point yet. Pomalidomide is too new. I don't know if anyone has yet looked at the information that does exist. But I do know that I've been on pomalidomide for nearly three years now, and that easily qualifies as long-term treatment. There was no transplant, but this is maintenance nonetheless.

How Do We Fight Secondary Cancers?

Job One, of course, is to discuss this with our doctors, and keep ourselves up to date.

Job Two, in my opinion, is to live a healthful lifestyle that fights cancer. That is a huge subject covering nutrition, exercise, sleep, addictions, and much more. It is, however, more or less in our own control. We can influence our own futures and make it more likely that we'll be here for our grandchildren. I've been thinking about writing a book about this (of course there are books out there already), and may blog about it, but here are some simple principles:

• Nutrition: We simply avoid eating anything that does not contribute to health. Does soda contribute to health, or a jelly doughnut, or french fries? Of course not! So we choose a healthful alternative, like charged water, a slice of organic whole-grain bread with a little organic raspberry jam, or a banana. Further, we go for the very best foods, especially fruits and vegetables, organic where suggested by the "dirty dozen" lists. Good nutrition contributes in two ways: (1) we avoid ingesting foods that cause cancer, foods full of pesticides, bad fats, and empty sugars; and (2) we do eat high-quality foods containing nutrients that our bodies need to build a competent immune system, including antioxidants and other micronutrients. We are what we eat.
• Exercise: Some is good, more is better. A good goal is a half hour, five days a week. We three try for an hour and usually make it. A balanced program, aimed at improving overall health, will include some resistance training (muscle building) and some aerobic exercise, with the prior advice of a doctor of course.
• Sleep: How can our health be at its best if we shortchange ourselves on sleep? Studies show that most people need eight hours, some more and some a little less. One test: if I need to use an alarm clock to wake up, then perhaps I'm not getting enough.
• Addictions:
  • Smoking: Oh, for God's sake, if you still smoke, do whatever it takes to stop. No excuses - it's killing you and everyone around you. Rehab if necessary. If you live with a smoker, move out.
  • Overweight: Overwhelming evidence points to overweight as a serious cancer risk. If you are obese (BMI 30+), or even overweight, please find a way back into your bathing suit, whatever it takes. This will require a serious lifestyle change - you will fail if you think it might not. Talk to people who have done it.

We three have followed these principles for years now. Does that mean we won't get additional cancers? No, it means that our risk is lower than it would be otherwise. That's all that any of us can do.

Some Current Test Results:

Test		Nov 18		Dec 16		Jan 13		Feb 07		Remarks
M-spike g/dL		1.2		1.0		1.2		1.0		Best tumor measure?
IgG mg/dL		1300		1080		1170		1200		Best tumor measure?
L FLC mg/dL		2.92		2.41		2.49		2.47		L Free light chains
Calcium mg/dL		10.3		9.8		10.3		10.1		OK
Creatinine mg/dL		0.9		1.0		1.4		1.0		Kidney, OK
HGB g/dL		15.0		14.6		15.3		16.0		Hemoglobin, good
RBC M/uL		4.26		4.23		4.48		4.44		Red cells, marginal
WBC K/uL		5.9		5.1		3.3		4.1		White cells, OK
ANC K/uL		2.30		2.50		1.19		1.40		Neutrophils, sufficient

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.

High-quality food is often quite colorful. Canned wild-catch salmon baked under yogurt and a little shredded cheese, organic lettuce, pineapple, pickled organic beets, onions, organic peas:

Innovative Treatment for Relapsed and Newly-Diagnosed Myeloma

Friday night I attended a satellite session hosted by Celgene, the makers of Revlimid and other drugs. Dr David H Vesole, of Hackensack University Medical Center, focused on the newest treatments for myeloma. He said that the two most important tools are Revlimid and Velcade (and he might as well have included dexamethasone (DEX) because it is almost always combined with Revlimid and Velcade).

The new kid on the block is all three, termed VRD. In one study it produced a response in 100% of patients, and a very good partial response (VGPR) or better in 75%. That's pretty amazing. Unfortunately, though, 15% of patients experienced severe neuropathy. Other studies suggest that low-dose DEX may work as well, and with once-weekly Velcade instead of twice-weekly, neuropathy may be reduced to a much smaller number of patients. Continued maintenance with Revlimid improves the result.

Potential newer kids on the block:

• Carfilzomib: This is a "proteazome inhibitor" (interferes with the cell's ability to dispose of waste) like Velcade. Carfilzomib seemed to be on a fast track, but is back in phase I trials to zero in on the maximum tolerable dosage. At lower dosages it appears as effective as Velcade but with only 1% of patients experiencing severe neuropathy. At the higher dosages it may be even more effective, but neuropathy may be increased. I spoke to one person in the sales booth who thought it was still a year and a half away from FDA approval.
• Pomalidomide: I have been on a Phase II study of pomalidomide for 30 cycles. It's an immunomodulatory drug (IMiD) with the capacity to suppress parts of the immune system, particularly myeloma cells, which are wayward plasma cells. Dr Lacy from Mayo Clinic will be presenting a talk which shows a 49% objective response rate even among patients for whom Revlimid and Velcade (both) are no longer effective. I don't know when this drug will be approved - it seems to be on a slow track, and I wonder (lacking specific knowledge) if Celgene has sufficient incentive to hurry this better drug to market as long as Revlimid is making them so much money.

Unanswered questions according to Dr Vesole:

• Should patients be pushed toward a complete response (CR) when a good response is already obtained? Studies do suggest that they do better.
• Is a four-drug combination better than three? The jury is still out, and one study says that they are only equal.
• What do we do when a patient on a three-drug combination relapses?

Actual sign on a Montana interstate:

IMF Patient & Family Seminar

Friday, August 28, and Saturday, August 29:

The International Myeloma Foundation (IMF) Patient & Family Seminar was interesting and information-packed, to say the least. We heard doctors from all around the country discuss topics like Ask the Expert, Managing Side Effects, Frontline Therapy, Role of Transplant, Bone Disease, and Approaches to Relapse. I think that about 100 of us myelomiacs attended, many with their caregivers. I've been dealing with myeloma for six years now, so a lot of the information was not new, but here are a few things that I learned, or perhaps re-learned:

Transplants:

• It appears to make little difference in overall time of survival whether the transplant is done early or late, as long as stem cells are collected early before the bone marrow gets all beat up. A current Dana-Farber trial may clarify this further.
• More transplants are done for myeloma than for any other disease.
• The mortality rate for a single autologous transplant is less than 1%.
• Revlimid can decrease the yield of a later stem-cell collection.
• Medicare wil pay for one transplant up to age 76.

New Treatments & Tests:

• Three- and four-drug combinations can produce very good initial responses, but it's not yet clear what happens if and when the combo fails. Will the individual drugs have any impact then?
• Carfilzomib, the new proteazome inhibitor, is much less apt to cause neuropathy than is Velcade. Currently available only in trials.
• Denosumab is a new monoclonal antibody with the potential to help treat osteoporosis and repair bone damage. It may replace Aredia and Zometa in some cases. Currently available only in trials.
• Pomalidomide, the new thalidomide analogue, is succeeding in its Phase II trial and is now scheduled for a Phase III trial in 2010. Only available in trials.
• A new "power needle" for bone marrow biopsies has been approved by the FDA. When manufacturing problems are overcome and it becomes available, it will make biopsies quicker and less bothersome.

Bone:

• Myeloma causes bone damage in about 80% of patients, but not in the other 20%. This is unrelated to the aggressiveness of the myeloma. As it happened, a survey of attendees showed that 80% of us had bone disease.
• Aredia and Zometa can eventually saturate the bones with bisphosphonate, and the half-life is 10 years, so therapy should be cut way back.
• There is a risk of necrosis of the hip joint, and perhaps other joints, with prolonged dexamethasone use, especially with concurrent bisphosphonates. This is a serious problem if it occurs. The risk of occurrence is low, but I'm thinking I've maybe had about enough DEX.

Other Stuff:

• Mayo Clinic in Arizona still uses high-dose dexamethasone with Revlimid or Velcade for the first two cycles, to get a rapid response. Often a rapid response is important for patients who have recurring disease.
• Neuropathy from Velcade may be painful, whereas neuropathy from thalidomide or Revlimid is more likely to present as numbness.
• Velcade neuropathy is likely to improve if treatment stops, though, whereas neuropathy from thalidomide usually does not.
• Ibuprofen can defeat some of the anti-clotting benefit of aspirin. Oops.
• "Hemonc" is short for hematologist/oncologist. Maybe I'll try that at Mayo, see if it flies.
• Diet is important. Dr Durie's advice: (1) Don't eat anything that your grandmother wouldn't recognize, and (2) Shop around the edges of the supermarket.
• There seemed to be a growing consensus that myeloma can be caused by benzene and various pasticides, even herbicides.
• Two attendees reported that they were diagnosed with myeloma shortly after a significant weight loss. Dr Durie pointed out that toxins are stored in body fat, and may flood the body when fat is lost.

Anything that I should add?


Sunday's breakfast. There is oatmeal under there somewhere.

Pomalidomide Is Still Working

Mayo Clinic Visit Thursday, July 23, 2009, end of Cycle 18:

I started on the Mayo Clinic phase-II trial of pomalidomide, then called CC-4047, almost a year and a half ago. My M-spike, a measurement of proteins from the malignant cells, dropped from 2.7 down to 1.1 g/dL within four 28-day "cycles." Since then it has slid a little more, mostly hovering between 1.0 and 0.9. Today it was 0.8 g/dL. Whoopee! Down is always good. It has been down to 0.8 once before. Dr L put a little smiley face on the results printout, next to M-spike.

So is this a real downward change in the M-spike or just a variation in the test itself? M-spike is a notoriously variable test. Well, Immunoglobulin G (IgG) is exactly the same as it was 28 days ago, 1010 mg/dL. Since IgG and M-spike tend to track each other, perhaps the decrease in M-spike is false. On the other hand, Lambda light chains dropped 26% to 1.95 mg/dL, by far the lowest I've seen in six years of living with myeloma. This is another erratic test, but it appears to be valid because Kappa light chains are unchanged. Most of the Lambda light chains come from the malignant cells, so perhaps the decrease in M-spike is real.

Whatever. One can analyze these things way too much. Better to celebrate a little, because for sure M-spike didn't go UP, and then wait 28 days for the next result.

Peripheral neuropathy (PN) is still an issue. Mine is still mild, with some partially-dead spots and some tingling in the bottoms of my feet and one thumb. Happily, it seems to be stable, not getting worse any more. I'm putting together another post on neuropathy and hope to publish it soon.

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. Very "technical."

Side effects of the two key drugs, CC-4047 and dexamethasone, are discussed in a previous post. Add peripheral neuropathy to the list.

Here are a few of the latest test results:

Test		Apr 30		May 28		Jun 25		Jul 23		Remarks
M-spike g/dL		0.8		0.9		0.9		0.8		Best tumor measure
IgG mg/dL		1060		1030		1010		1010		Variation is normal
L FLC mg/dL		2.55		2.60		2.63		1.95		L Free light chains
Calcium mg/dL		9.6		10.0		9.6		9.7		Below 10.2 is best
Creat mg/dL		0.9		1.0		1.0		1.1		Kidney, lower is better
HGB g/dL		14.3		14.4		14.0		14.8		Hemoglobin, normal
RBC M/uL		4.01		4.06		3.93		4.13		Red cell count, low
WBC K/uL		3.6		4.0		5.6		3.9		White cells, normal

Doctor:

Sunshine and I also discussed with Dr L:

• I told her that because of the muscle wasting and other side effects I wanted to reduce the DEX dosage, currently 8 mg, but because the trial doesn't allow the DEX to be increased again I would refrain from proposing that. Her response led me to believe that the DEX, now at only 8 mg once per week, may not be doing that much good anyway, and we should revisit the issue in another month. I'm up for that.
• I mentioned that I had gained a few pounds since the beginning of the trial, but that because of the muscle wasting from DEX my body had changed shape, with a layer of fat on my belly and chest. I told her that I had gone back on Weight Watchers to get the weight under control, and re-started a resistance training program to try to reverse the muscle wasting. She approved.
• I mentioned that I had recently done a difficult run with a heart rate monitor, which reported an average rate of 126 and a maximum of 142 beats/min. These numbers are perhaps ten beats/min lower than they should be. I mentioned that I had looked back at similar records while I was on thalidomide, in 2004 and 2007, and seen similar reductions in exercise heart rates. She acknowledged this and said that it happens with Revlimid as well.
• She asked if I felt tired, noting that I had apparently said I was tired in a checkup last December. I said no, I wasn't any more tired than a 68-year-old should be, and certainly not chronically tired. I can just see the doctor's writeup: "patient denies feeling tired." :-)
• We discussed peripheral neuropathy. I've accommodated to it somewhat, as it seems to have reached a stable level, with some tingling and partial loss of feeling in my feet, not getting any worse. I mentioned that I am taking the full regimen of supplements and also keeping my feet warm, as I believe that warmth aids healing. She said that she also believes that stimulation helps, and suggested massage as well.
• For 17 cycles I took the pomalidomide at bedtime and, on DEX days, took the DEX with dinner. For this past cycle I took the pomalidomide before breakfast and the DEX with breakfast. I mentioned that I preferred taking the DEX in the evening, and she didn't think it would make much difference. Indeed, the change to morning meds didn't seem to make much difference in this past cycle, though it certainly didn't hurt either.
• She said a few things about pomalidomide that I won't report because they are not yet published, but I think these are OK and I hope I got them right:
  • 82% of trial patients got at least a 25% reduction in M-spike.
  • About the same percentage of patients have responded to pomalidomide as respond to Revlimid, but many of these have previously failed Revlimid.
  • Patients with high-risk genetics are experiencing encouraging responses.
  • One patient in particular did not respond for six months, and then the M-spike dropped very dramatically.
  • Other patients have reached a plateau, level for several cycles, followed by a gradual drop to still-lower numbers.
  • Her theory as I understood it: Pomalidomide first reduces the tumor burden directly by interfering with NF-kB and possibly by other mechanisms as well. Then the body's own immune system is able to continue the good work and improve on it.
  • She said that malignant cells pop up within each of our bodies all of the time, but our immune systems normally spot those and kill them.
  • Some patients reach a plateau, as I have, and then just stay there, as patients sometimes do on Revlimid. I hope that's me - she hopes so too.
• I showed Dr L a chart of blood glucose versus time of day (below), with DEX taken at breakfast. She remarked that it didn't seem too bad, meaning that the glucose never went too high, even at meals. I mentioned that we do try to minimize carbohydrates on DEX day, and she said that was a good idea.

Other Stuff:

As part of the study I get an electrocardiogram (ECG) every three cycles. This time the cardiologist reported "marked sinus bradycardia with sinus arrhythmia." Bradycardia is simply a low heart rate - mine was 38 this time, the lowest ever. No surprise, though, I'm a runner with an endurance athlete's heart, and with the added effect of the pomalidomide I always get a comment about bradycardia. I don't recall getting a comment about "sinus arrhythmia" before, but as far as I can tell that just means that the interval between beats is not perfectly regular. Dr L didn't bother to comment on it.

For the upcoming cycle I plan to take the pomalidomide in the morning, usually before breakfast, and the DEX Sunday evening with dinner.

Also, one of the people who post on the MMA List recently noted that alcohol is a neurotoxin, and said that his neuropathy improved when he stopped having his evening glass of wine. It's worth a try, so I may also find an appropriate window of days and stop enjoying my one evening beer for at least a week, just to see if there is any improvement. Sigh.


Chart of blood glucose versus time, after 8 mg DEX taken with breakfast. You can see the spikes caused by lunch and dinner. Glucose was normal by the next morning, so that effect of the DEX seems to clear within about 24 hours.

Even Better News, Probably

Mayo Clinic Visit Wednesday, April 30, 2009, end of Cycle 15:

Results:

CC-4047 is an analog of thalidomide and Revlimid, presumably an advancement on both. One little-advertised feature of Revlimid is that a patient's M-spike may decline in two phases. The first phase may take the spike down to a plateau, and if there is a second phase it may produce another gradual decline to even lower numbers, possibly much lower. Dr L has a theory that the first phase may be the Revlimid actually killing the naughty plasma cells, as we might expect, and the second may happen because the Revlimid has helped the immune system itself to fight the myeloma.

The good news for me, perhaps, is that CC-4047 seems to show the same two-phase response for some patients, maybe including me. The CC-4047 study is less than a year and a half old, so information is still somewhat tentative. My own M-spike initially dropped rather quickly from 2.7 to 1.1 g/dL, then to 0.9 and back up to 1.1. In the past four cycles, though, it has gradually dropped again, from 1.1 down to 0.8 g/dL, the lowest level we have seen in the fifteen 28-day cycles that I have been on the study. I can only hope that this is the beginning of the second gradual downward movement.

IgG stayed the same, at 1060 mg/dL, suggesting that the drop in M-spike might be illusory. M-spike is known to be a relatively inaccurate measurement, and indeed the the printout says "no significant change since the last measurement," even though it dropped from 0.9 to 0.8 g/dL. However, since January the drop is from 1.1 to 0.8, enough to be significant. The trend is certainly down, not up.

The only iffy test results are the white blood cell and neutrophil counts, both of which took a bit of a dip this month. CC-4047 can cause those counts to tank, which is not good. But they bounce around a bit and have been low before, so we'll see next month. We live month to month, and I'll take this one!

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. Very "technical."

Side effects of the two key drugs, CC-4047 and dexamethasone, are discussed in a previous post.

Here are a few specific test results:

Test		Feb 05		Mar 04		Apr 02		Apr 30		Remarks
M-spike g/dL		1.0		0.9		0.9		0.8		Best tumor measure
IgG mg/dL		1160		923		1060		1060		Variation is normal
L FLC mg/dL		2.78		2.64		3.04		2.55		Free light chains
Calcium mg/dL		9.7		9.7		9.5		9.6		Below 10.2 is best
Creat mg/dL		1.0		1.0		1.0		0.9		Kidney, lower is better
HGB g/dL		14.9		13.7		14.7		14.3		Hemoglobin, normal
RBC M/uL		4.28		3.89		4.26		4.01		Red cell count, low
WBC K/uL		5.0		4.5		4.2		3.6		White cells, normal

Doctor:

Sunshine and I discussed a few other things with Dr L:

• It seems as if the dexamethasone (DEX) had aged me five or ten years in the last year, noting especially the thinning skin and wasting muscle. Dr L was not surprised.
• It also seems like there are two DEX days now, not just one. The DEX effect seems to last longer. Again she was not surprised.
• She had mentioned in an earlier visit that the body does become more sensitive to the DEX as time passes. This time she said that this unfortunately applies only to the side effects and not to the efficacy of the drug.
• When I asked about the effect of the drugs on the thyroid, she mentioned that the IMiD drugs (thalidomide, Revlimid, and probably CC-4047) can sometimes inflame the thyroid, and in the worst case can cause the thyroid to "burn out," eventually resulting in hypothyroidism. This is why the CC-4047 study protocol calls for a TSH test every three cycles, which is frequent enough to catch the problem. My TSH was 2.0 mIU/L, which is fine.
• We discussed a reduction in the DEX dosage, from 8 mg to 4 mg once weekly, but because of the good M-spike result we decided to change nothing. I love life more than I hate DEX.
• I have eaten one grapefruit every day since about January, which is roughly when this M-spike decline began. Coincidence? She was not certain whether grapefruit would have an effect on the strength or efficacy of either the DEX or the CC-4047. But I'm not inclined to change that either.
• Don's basic rule of life: "If it works, YOU CAN'T FIX IT." Corrolary: "So don't try."
• We had quite a discussion about the shingles vaccine. It is a "live" vaccine, so there is a theoretical possibility that it could actually cause a case of chicken pox in an adult with a compromised immune system. That could be horrible and maybe even fatal, so oncologists simply don't give that vaccine to people with myeloma and there is almost no clinical information on whether myeloma patients would actually develop chicken pox from the vaccine.
• My primary care physician, Dr PCP, had suggested the vaccine and he's a very smart man, so I'm still thinking about it. As far as I know, my immune system is as competent as it has ever been. If it's safe for normal adults, it should be safe for me. Shingles is pretty nasty too.
• In February the electrocardiogram (ECG) report said "Ventricular escape beat followed by SVPC." I'm not even sure what that means - I hope it was just because I have a runner's heart and I was on a lot of caffeine that day. Anyway it wasn't there this time.
• But this time the report says "minimal voltage criteria for LVH, may be normal variant." This same statement appeared once before too, about a year ago. I think it's the measure of the height of the major voltage spike on the ECG. Dr L said that the voltage can show higher on lean people (like runners), and I also think it has to be higher for a person with a very low heart rate, because the heart has to pump harder on each beat. A normal heart rate is 60 or so, but mine was 40 for that ECG - normal for me because I'm a runner. I'll ask Dr PCP about this.
• We talked briefly about new drugs. She mentioned a drug called Zevalin, a monoclonal antibody with the capacity to kill the progenitor cells ("stem cells"), perhaps to be used in combination with melphalan which kills the mature myeloma cells. Apparently someone at Mayo is doing work on this. If this were successful, we might actually be headed for a cure. Yikes.
• The CC-4047 study has been reopened more than once now for a modest number of additional patients. The last opening, now filled, was for people for whom Revlimid has failed. This time it is for people for whom both Revlimid and Velcade have failed. Apparently the FDA does not want to approve another new drug unless it shows a significant advantage over drugs already available. If CC-4047 works for those hard-to-treat patients, it will certainly show that.
• I asked if the muscle wasting caused by DEX would affect my heart as much as it affects leg muscle. She thought not, because the heart is "smooth" muscle, different from motor muscles.

Three days before the Mayo visit I saw Dr PCP with a lits of questions about DEX and a few other things:

• I asked if there was a way to minimize the muscle-wasting effect of DEX by timing my running and other exercise properly. Is it best to exercise on DEX day, or is it best on the day before or the day after? He didn't know, but will look into it. Good guy.
• He mentioned that immunizations, such as the flu shot, are rendered less effective by DEX, which suppresses the immune system and thereby its response to the vaccine. He thought perhaps the best timing for that would be two days after taking the DEX.
• The reason that DEX is used for us instead of prednisone is that there is less problem withdrawing from DEX, so it's better in applications where the corticosteroid should be pulsed instead of continuous.
• He knows of no way to toughen thin skin. Tsk.

The end. For now.



Dinner: Wild-caught Alaskan sockeye salmon (canned) with organic yogurt and a little cheese, toasted slivered almonds, organic green peas, organic strawberries. Life is good.

Plateau Continued

Mayo Clinic Visit Thursday, February 5, 2009, Cycle 12:

Good News!

M-Spike went down from 1.1 to 1.0 g/dL and IgG from 1350 to 1160 mg/dL. Together, these results seem to indicate an actual drop in tumor burden of perhaps 10% or so. Maybe not, because test results can vary, but most likely the cancer is down. We celebrated last night.

I do wonder WHY it's down, though. I'm still taking CC-4047 2 mg daily and dexamethasone (DEX) 8 mg once weekly. What else was different in this last month? Or was it the previous month that was different, when it seemed to go up? I dunno. Anyway we'll take it! Thanks to Celgene for CC-4047, Mayo Clinic for excellence in medicine, and specifically to Doctors L and KDS.

Other test results were mostly good too, and in fact mostly unchanged. Light chains are down a little, but the ratio is basically unchanged. White counts and hemoglobin are within the reference range for "normal" people. Red cell count is at the bottom edge of the range, where it always is. I do have three little things to whine about, but I'll put those last because they don't seem very important.

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. Very "technical."

Side effects of the two key drugs, CC-4047 and dexamethasone, are discussed in a previous post.

Here are a few specific test results:

Test		Nov 13		Dec 11		Jan 08		Feb 05		Remarks
M-spike g/dL		1.0		1.0		1.1		1.0		Best tumor measure
IgG mg/dL		1170		1260		1350		1160		Variation is normal
L FLC mg/dL		3.25		4.03		3.31		2.78		Free light chains
Calcium mg/dL		9.8		10.1		9.9		9.7		Below 10.2 is best
Creat mg/dL		0.9		1.0		1.1		1.0		Kidney, lower is better
HGB g/dL		14.6		14.6		15.3		14.9		Hemoglobin, normal
RBC M/uL		4.19		4.20		4.36		4.28		Red cell count, low
WBC K/uL		4.3		5.3		4.6		5.0		White cells, normal

Doctor:

I met again with the nurse-practitioner Dr KDS. Here is some of the discussion:

• In connection with my "plateau," Dr KDS mentioned the concept of managing myeloma as a chronic disease rather than a fatal one. But we both know that it's too soon to say that - people are still dying every day.
• I asked Dr KDS about the effect of DEX on the thyroid. She wasn't aware of any effect.
• In a recent visit, my naturopath raised the subject of chronotherapy, also called chrono-modulated therapy, in which the chemo is administered at the time of day that takes advantage of a person's biorhythms to maximize the benefit and minimize the side effects of the drug. Dr KDS thought that it doesn't much matter for the CC-4047. She said that the effect of the DEX peaks 8 to 14 hours after it is taken, so a person should determine for him/herself when s/he wants that to happen. Most people like to take it in the evening, so that the effect is maximized during the following day.
• Since both CC-4047 and DEX have a half-life in the body of eight hours or less, I think (based upon my extensive medical knowledge - Ha ha) that there IS likely a time of day when each of those would be most effective. I wonder when that is.
• We have no Phase II data on length of the plateau for CC-4047, so I asked about Revlimid, a similar drug, in comparison with thalidomide. She made a call and reported that the median "time to progression" for Revlimid is about 30 months, much more than thalidomide. Some people are at 50 cycles and still going on Revlimid. We can hope that CC-4047 gives a plateau of that quality.
• I asked about the targeted measles therapy project, and she said that it is currently in a second Phase I trial with real patients.
• Dr L had said that people get more sensitive to DEX as time goes by. I asked if that applied to the benefits of DEX, or only the side effects. Dr KDS wasn't sure.
• The next visit will be almost exactly one year from my first tests at Mayo. I asked if there is any set of tests that are done on an annual basis, such as skeletal survey, bone density measurement, or PET scan. She said not unless there is a symptom that suggests a need for the test.
• See, the problem is that people cruise along thinking they are on a plateau and suddenly a bone breaks. Yikes. That has happened to many of the people in my local support group. If it happened to me, almost any broken bone would stop my running, so my lifestyle would change instantly and dramatically. For anyone, including me, shouldn't we find a way to spot a weak bone and treat more aggressively before a break occurs?

Whining:

• As part of the study protocol, Mayo does an electrocardiogram every three cycles, and did one Thursday. The doctor always reports "bradycardia," a slow heart rate, which we know about. Runners have strong heart muscles and low heart rates. This time, though, we also got this report: "Ventricular escape beat and SVPC are now present." I don't know what that means, and it doesn't sound good, but Dr KDS wasn't worried about it. I suspect that it was due to being overcaffeinated for the ECG. Dr KDS didn't disagree. Coffee AFTER the ECG next time.
• My TSH (thyroid marker) was 5.4, just above the reference range of 0.3 to 5.0, suggesting that I may be hypothyroid. Hmmm. They do this test every three months too, and it has bounced around a bit in the past year. I will self-treat for this in the next three months, using supplements recommended by my naturopath, and we will see if it drops. I'd prefer it to be down around 2.0.
• After my run Thursday my right foot felt like it was waking from being "asleep," a bit prickly and cool. This lasted for several hours, and could be the beginning of peripheral neuropathy, which can be caused by drugs like CC-4047. I have felt this before when I was taking thalidomide, a similar drug. In all cases it was triggered by running and it disappeared in a few hours. We'll see - if it's peripheral neuropathy it will be back.

M-Spike Versus IgG (or IgA):

M-Spike (Spike) and IgG both measure immunoglobulin G, which is one of the proteins that our bodies make to fight off infection. Spike measures the useless, monoclonal immunoglobulin made by the malignant plasma cells, whereas IgG measures BOTH the useless monoclonal immunoglobulin and the GOOD useful immunoglobulins that fight infection, made by the normal plasma cells. In United States labs, Spike is usually expressed in grams per deciliter (g/dL), whereas IgG is expressed in milligrams per deciliter (mg/dL). We can put them in the same units, mg/dL, by multiplying Spike by 1000. Example from Thursday's results: Spike is 1.0 g/dL, which is the same as 1000 mg/dL. Subtracting that from the IgG of 1160 mg/dL, we see that the GOOD immunoglobulins (IgG - Spike) are 160 mg/dL. Note that IgG must always be greater than Spike, or something is wrong. It can be quite a lot greater if the body has recently fought an infection. The measurement of IgG is more accurate than Spike, but is harder to apply as a cancer marker because the amount of good IgG is unknown. The analysis is exactly the same for IgA myeloma.

For my own amusement I plotted IgG and Spike on the same scale (Spike converted to mg/dL) going back five and a half years. You can see that Spike is always lower than IgG, though the difference has shrunk a lot in the last year since the beginning of the CC-4047 trial. I'll have to ask Dr L why that is:

Stable, With Caution

December 11, 2008:

My myeloma is stable after Cycle 10 of the CC-4047/Dexamethasone trial. Cool. But watch out for elevated liver enzymes AST and ALT.

This particular 28-day cycle may have been affected by several unusual circumstances:

• First, I really did take the supplements almost every day;
• I got a flu shot in mid-November;
• We enjoyed two days of Thanksgiving partying;
• Three weeks ago I pulled a band-aid off the back of my hand and unknowingly lifted the skin right off with it, leaving a large open sore;
• That sore developed a large (ugly) scab;
• Which does not look infected, but is healing very slowly;
• I got a 24-hour flu or food poisoning nine days before the Mayo appointment, including stomach upset and a slight fever, with a complete recovery by the next morning; and
• Something, who knows what, has caused liver enzymes ALT and AST to be elevated. ALT was 87 U/L, with a reference range of 7-52, and AST was 69 U/L, with a reference range of 15-37.

The Mayo test results don't indicate much change in the cancer numbers. M-Spike, the most significant number, is 1.0 g/dL, same as last month. In fact it has not changed much since August, the first time it dropped as low as 1.0. IgG is up from 1170 mg/dL to 1260, but for good reason, see below. Free lambda light chains are up 24% to 4.03 mg/dL, but kappa chains are up even more and the ratio actually went up a bit, so free light chains are probably not really up. The only scowl in the group photo is the elevated liver enzymes. Other blood numbers like red cells, hemoglobin, and platelets are as expected, with white cells and neutrophils increased as one might hope in response to a flu threat.

I go to Mayo every 28 days. I meet with Dr L every other time, otherwise with nurse practitioner KDS. This time it was Dr L. Here are a few subjects that came up:

• The increase in IgG might easily be attributable to the flu episode, because the immunoglobulins produced to battle the flu could last weeks in the blood.
• Similarly, the increased free lambda light chains could be coming from those plasma cells that produced the extra IgG. I think that's what she said.
• Dr L did not suggest a possible reason for the elevated liver enzymes, except maybe the flu episode. Especially if that was actually food poisoning and not flu. There was a now-suspect cheese ball ...
• Happily, two other liver markers are NOT up. Bilirubin was one of those, and I don't remember the other. LDH can be a liver marker but she didn't do LDH this time.
• The only albumin measurement this time was the one that comes as a part of the electrophoresis tests (with M-spike), and she doesn't quite trust that albumin result.
• However, that albumin result was UP to 3.6 g/dL from 3.4 the month before. It's a liver marker too, and UP is the preferable direction for albumin, trustworthy or not.
• In any case I will have the liver enzymes checked again in two weeks, the day before Christmas. If they are still up, it will probably be a dry Christmas for me. No beer. Sigh.
• I asked Dr L if there is any therapy for skin - some way to toughen it. She didn't know of any.
• Perhaps this is more the domain of Dr HH, the naturopath. Time for another appointment with her?
• People (more than one) have actually suggested Mayo Clinic's "Vanicream" skin lotion to strengthen skin. So we bought a couple of jars of that before returning home. I'll try it, what the heck.
• For what it's worth, the first ingredient is purified water, the second is white petrolatum, and the third is cetearyl alcohol. That third item is described in Wikipedia as not an 'alcohol' like rubbing alcohol, but rather a moisturizer, emulsifier, and stabilizer.
• She did suggest the use of heat to help heal the injury on my hand. I had been doing that in the beginning, with a glove to keep the area warm, but it's a good idea and I will try to wear it more faithfully.
• Dr L produced a chart on the computer that showed how CC-4047 (pomalidomide) stimulates the immune system in far more ways than thalidomide does.
• In contrast, dexamethasone suppresses the immune system.
• Yet the two together are more effective than either one alone. "Go figure," said Dr L. I guess there is more to be learned.
• Also, she believes that CC-4047 is strongly antiangiogenic, which means that it suppresses the creation of tiny new blood vessels. I got the impression that it exceeds thalidomide in this characteristic. Maybe Revlimid too. (CC-4047, Revlimid, and thalidomide are analogous immunomodulatory drugs.)
• We think that dexamethasone and other steroids are a cause of thinning skin.
• We also know that skin is constantly replenishing itself, wearing off from the outermost surface and rebuilding from below.
• I wondered if the rebuilding of skin might require the creation of tiny blood vessels, and if so, CC-4047 might interfere with the creation of new skin. She said that she always thought of the dex as the culprit in thin skin, but didn't discount this possibility either.
• Perhaps this could also account for the very slow rate of healing of injuries.
• Now I wonder if any other bodily organs might suffer from lack of an ability to rebuild. Does the heart rebuild itself? Lungs? Liver?
• I didn't discuss this with Dr L, but I notice that ALT and AST have been elevated before, in 2003 and 2004. Back then I believe that we attributed the temporary increase to running. I did a 5-mile run Wednesday night, less than 12 hours before this most-recent blood test. Could that be the cause? I'm thinking maybe so.
• The drive to Mayo is 90 minutes, and she gave me permission to drink black coffee on the way from now on, even though the first business on arrival is a blood draw. I will appreciate that.
• Of the 60 people in the CC-4047 trial, most are responding, including several for whom Revlimid has failed.
• One patient in particular was refractory to everything including Revlimid and Velcade, yet had an excellent response to CC-4047.
• Only two of the 60 patients are now progressing again.
• The generic name for CC-4047 will be pomalidomide, but the trade name will NOT be Actimid. Don't know what it will be.

Here are some 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. Very "technical."

Other side effects of the two key drugs, CC-4047 and dexamethasone, are discussed in a previous post.

Here are a few specific test results:

Test		Sep 16		Oct 16		Nov 13		Dec 11		Remarks
M-spike g/dL		1.0		0.9		1.0		1.0		Best tumor measure
IgG mg/dL		1180		1130		1170		1260		Variation is normal
L FLC mg/dL		2.64		3.14		3.25		4.03		Free light chains
Calcium mg/dL		9.7		9.6		9.8		10.1		Below 10.2 is best
Creat mg/dL		1.0		1.1		0.9		1.0		Kidney, lower is better
HGB g/dL		13.6		13.8		14.6		14.6		Hemoglobin, normal
RBC M/uL		3.90		3.97		4.19		4.20		Red cell count, low
WBC K/uL		5.3		4.4		4.3		5.3		White cells, normal

I'm still running 20 miles per week, getting set to increase that gradually back up to 40. Life is good.


Oatmeal breakfast: Gluten-free oatmeal, blueberries, organic walnuts, organic plum, organic low-fat milk, Dove dark chocolate, and "kiwi berries." We had not seen kiwi berries before. They are smaller than a kiwi with a nice, edible skin, and taste just like kiwis. Not organic, but we tried 'em and liked 'em.

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!

Humpf!

Disappointing Test Results.

Last October my new "everything including the kitchen sink" self-treatment regimen seemed to be producing results, with a significant reduction in IgG from September to October, and a slight reduction in "spike."

Yesterday I received the results from the last nine weeks on the regimen, and those results are not as encouraging:

• IgG up 11.5% to 3000 mg/dL, near the high September level,
• SPEP monoclonal protein (SPEP) is up 11% to 2.05 g/dL, an all-time high, and
• For the first time ever, slight amounts of lambda light chains were found in my urine.

I hoped and almost expected those numbers to go down, not up, so this is a disappointment.

However, the news is not all bad. I have a beer here, but I'm not crying in it :-) Calcium remains low, as does creatinine, both of which are indicators that the myeloma is not yet hurting me. Red cell count is still slightly below the normal range, but up a little from October, and it has always been low. Hemoglobin is fine, as are all the rest of my CBC values. I have none of the C.R.A.B. symptoms. Graphic charts of key test results are here and a huge table with lots more test results is here.

When I look at the charts, it appears to me that even if the myeloma is still increasing despite the kitchen-sink regimen, the increase may have slowed. Two data points are not enough to make this trend clear, but it's a hopeful thought and we live in a world of hope.

My oncologist wants me to start a new regimen of Revlimid and dexamethasone (dex). He suggested a rather high dose to start, in fact, 40mg Rev for 21 days of 28 (if I recall correctly - possibly it was 25mg), and 40mg dex four days on and three off. We discussed the results of the ECOG study which showed that low-dose dex was better in every way than high-dose dex. I declined treatment for now, and told him that I will go to Mayo Clinic in Rochester for a consult. He accepted this very openly, and said that he will be glad to continue to work with me in any way that I find helpful. He's a good guy. I have made an appointment at Mayo for early March, with a doctor that I have met in the past. Happily for me, Mayo is just a 90-minute drive away. Until March I will continue the regimen that I have been on.

My oncologist again expressed some surprise that I still have the energy and ability to run, considering my test results. He has 60 myeloma patients now, and clearly believes that my proteins are going out of control. Nevertheless he has always been supportive of the running, for which I am grateful. Interestingly, when I called Mayo, I told the person making my appointment that I was a marathoner, and later at the end of the call she too said "keep on running!" Last night I was feeling a little mopey and didn't really want to do the 12-mile run that was on my schedule, but I did it anyway and felt quite a bit better afterward. Running is good, life is great!

We also discussed the connection between celiac disease (gluten intolerance) and myeloma. He agreed that there is a connection, and remarked that there is also a connection between celiac disease and Waldenstrom's macroglobulinemia, in which the characteristic monoclonal protein is IgM rather than IgG or IgA. We told him that we were now eating a gluten-free diet, and asked him whether I should get the antigliadin antibody test. He looked skeptical until I mentioned that I have a son with celiac disease, and then he said "we can do it today!" The blood is drawn and I hope to get the results within a week.

I can think of two changes in my habits between the five weeks of apparent success ending in October and the less-successful nine weeks ending after Christmas:

• I cut the amount of naproxen sodium (Aleve) that I use to manage headache in half, to one 220-mg capsule per day, because the low-dose naltrexone seemed to help the headaches too. There is some suggestion in the literature, though, that NSAIDs like Aleve might actually have a modest beneficial effect against the myeloma because of their influence on COX-2. I'm well beyond the extent of my knowledge here, but will go back to two Aleve per day for the next two-month period just in case it makes a difference.
• We changed our diet to eliminate nightshade vegetables, including peppers and tomatoes, in hopes of further reducing inflammation. However, tomatoes have some very beneficial nutritional value as well - in fact they were designed to be eaten and to support animal species, as a way of propagating their seeds. This benefit may not actually accrue to humans, but nevertheless I will go back to eating some tomato, and peppers too, especially in cooked form, particularly as organic salsa or pasta sauce but probably not as catsup. Besides, I like tomato and it is the only thing I have really missed in my recent diet. Sunshine, my beloved dietician and cook, seems to be OK with this.

In addition, Sunshine came across a 2004 University of California (Berkeley) study indicating that 500mg of vitamin C daily reduced the level of serum c-reative protein (inflammation marker) in volunteers by 24%. I have not been taking vitamin C, except in food and the modest amount in my daily multivitamin, but will take 500mg from now on.

My apology for posting this so late. My grandson was in town until yesterday afternoon, and when there is a time conflict between him and blogging, you know who wins! :-)



Friday's (today's) breakfast: Organic oatmeal, blackberries, banana, Don's fruit/berry/nut mix, Hershey dark chocolate, organic fat free milk.


Thursday's salad: Organic salad greens, cucumbers, avocado with lime, Maytag blue cheese, macadamia nuts, blueberries, raspberry vinegar.


Thursday's dinner: Wild-caught Alaskan salmon, organic green peas, organic pitted dates, Hershey dark chocolate. I went back for seconds. Not shown: an excellent oatmeal stout.

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.

Myeloma's Relentless March

We stopped thalidomide two months ago, and I have had no treatment since. Blood tests were a week ago, and today I saw my doc, an oncologist/hematologist.

IgG, M-spike, and free light chains were all up from a month ago, though none by a surprising amount. I didn’t get a copy of a B2M result; I don’t yet know if it was done. Actual values from key tests are displayed graphically in the charts and numerically in the test result table. In short, it appears that the cancer is still advancing slowly and relentlessly. That’s what it does.

I started a curcumin regimen on June 27. I also asked my doc to think about low-dose naltrexone (LDN) as another complementary treatment, and he agreed to check into it. We both understand that if the myeloma makes a sudden jump, we will probably go back to “conventional” treatment such as Revlimid.

Despite their inexorable climb, my cancer numbers are still so low that it is barely considered “smoldering” myeloma. This is good. Nevertheless, I have recently felt an occasional ache in my left upper arm which I cannot pinpoint by palpation. When I suggested to the doctor that my numbers were too low for that to be a bone problem, he pointed out that a plasmacytoma can occur anywhere. He has ordered an x-ray of that bone.

In one month we will check liver and kidney function, and in two months we will do another full set of tests. Meantime, I figure on living life to the fullest. Live one day at a time and make it a masterpiece!

Related links, also listed on the right sidebar:

• 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.
• My Lab Test Table Best with a wide browser window. Very “technical.”

Hormone- and nitrate-free ham, organic red grapes, Jarlsberg cheese, Roquefort mustard, Dove dark chocolate. Estimated Weight Watcher points = 8.

Rethinking Proactive Myeloma Treatment

My myeloma is still in a early stage, barely even smoldering. Thankfully, it has not grown rapidly; it seems to double about every 18 months. Nevertheless, I have asked my doctor to be very proactive in two ways: (1) Testing for potential problems, and (2) Treating the disease before symptoms develop. Although studies have shown that early treatment does not result in longer survival, my theory has been that early treatment should at least yield a higher quality of life by delaying symptoms like broken bones and failed kidneys.

Mayo clinic, on the other hand, has recently published a new consensus statement outlining a treatment algorithm for newly-diagnosed myeloma patients titled "Treatment of Newly Diagnosed Multiple Myeloma Based on Mayo Stratification of Myeloma and Risk-Adapted Therapy (mSMART". The abstract is here and the full text is here. It divides newly-diagnosed patients into two groups, high-risk and standard risk, and further divides both of those groups again into a class with active (symptomatic) myeloma and another with smoldering (non-symptomatic myeloma).

Lucky for me, I seem to be in the standard-risk group with smoldering myeloma. For this group, Mayo's algorithm suggests NO treatment. If I had started my doctoring at Mayo Clinic, I would very likely never have taken thalidomide, unless as a participant in a clinical trial. I don't know if that would have been good or bad; I took the thalidomide with my eyes wide open and was glad that my doctor was treating me aggressively. But now I'm thinking I'll ask him to be a little more conservative in treatment. Here are some reasons:

• All treatments have side effects. For example, with thalidomide I had rash, low heart rate, erectile dysfunction, slow bowel, weight gain, and possibly a minor deep-vein thrombosis and peripheral neuropathy. Happily, none of those were show-stoppers, and all but the rash are gone now. However, the next step for me is Revlimid with dexamethasone, which could easily cause more-serious side effects.
• To some extent, each treatment may be thought of as an arrow in the quiver. Once it's been shot, it's gone. Thalidomide seemed to work at first, but not any more, and it will most likely be unavailable later when I might need it more.
• Treatments can cause the myeloma to mutate and become more aggressive. I suppose this is why early treatment doesn't actually extend survival. Since my myeloma is progressing slowly now, maybe I'm better off not provoking it unnecessarily.
• Treatments can cause other cancers. I think that applies mostly to the older, standard chemotherapy treatments like melphalan, but those treatments may be all that remain for me if I use up the other arrows in the quiver too soon.
• Treatments can even cause the very symptoms that we are most trying to avoid from the myeloma. I know a man whose kidneys are failing because of treatments, not because of the myeloma.

I'm quite content to try curcumin next. It's an unconventional treatment, to be sure, but there is good reason to believe that it might work, more than speculation. Further, it does not seem to carry the risks inherent in most of the prescription treatments. I'm taking two months of NO treatment after discontinuing thalidomide, then getting tests done June 26, for the final report card on the thalidomide. I will start the curcumin later that same day.

I am very interested in opinions of anyone else who reads this. If you see an error in my facts or my thought process, or even if you agree, I would value your opinion. I'm thinking about my life here. Thanks!

Sunshine and Sweet Pea were out a few nights ago. Incompetent at cooking, I had to make do:
A banana, an orange, organic strawberries, blueberries, organic yogurt, pistachios, asiago cheese, organic red wine. Estimated Weight Watchers points = 11. The cheese alone is six points.