Dexamethasone and Cushing's Syndrome

In a recent episode of the TV program House, the young patient was eventually diagnosed with Cushing's Syndrome, and I noticed a similarity between some of her symptoms and some of mine. Wikipedia describes these symptoms which I do have in one degree or another:

• Excess upper-body fat, but with normal arms and legs.
• Thin skin with easy bruising.
• Weakened muscles.
• Some unmentionable symptoms.

Happily, there are many other classic symptoms that I do NOT have, though I have noticed some in other myeloma survivors:

• Round, red, full face (moon face).
• Skin infections.
• Purple marks (striae) on the abdomen and elsewhere.
• Backache.
• Bone pain.
• Fatty back deposits (buffalo hump).
• Thinning of the bones.
• Psychological disorders. Hmmm, well, I do keep running marathons ....

Cushing's Syndrome can be caused by various disorders within the body, or by glucocorticoid drugs, such as dexamethasone (DEX). I have known for a long time that the DEX caused each of those symptoms, but never knew there was a name for the collection of them. Self-diagnosis is iffy, and maybe the doctors don't actually call it Cushing's syndrome with so few of the classic symptoms, but I like having a name for what DEX did to me.

Fortunately, my doctors understood the risk and administered only the lowest doses of DEX, decreasing, and finally took me off DEX entirely, so the symptoms are quite tolerable. "Everything works better with DEX," and the combination of pomalidomide and DEX did the job, so eight years after diagnosis I'm still quite alive and the myeloma is stable on just pomalidomide. I have no complaints and no regrets.

I'm greedy about my health, though, and with the DEX gone I would like to get back into shape. I watched my marathon finish times climb by more than an hour in the 21 months of DEX treatment, and I believe that is due to muscle loss and to the accumulation of upper-body fat. Now, 17 months after the completion of that treatment, I have yet to see any real improvement in race times. Something has to be done:

• First, get serious about weight loss. I won't know whether the upper-body fat can be removed unless I actually do lose some significant weight, say 10 - 15 pounds. Weight Watchers works - I'll start journaling again;
• Next, see a physical therapist and maybe a trainer about the little injuries like runners' knee that have been keeping me from some of the more-serious runner training necessary to build speed. The first therapist appointment is already made; and
• Finally, visit my naturopathic doctor Helen Healy to discuss this and perhaps review the supplements I'm taking.

Leftovers with personality:

Myeloma Support Group, Rochester Minnesota

Minnesota has three monthly myeloma support group meetings, one on each side of the Twin Cities and one in Rochester. We three attend regularly in the Twin Cities, but had never been to a Rochester meeting. However, we heard that the guest speaker would be a renowned and respected Mayo Clinic myeloma doctor fresh from the International Myeloma Workshop in Paris, so we went. I'm protecting the doctor's identity because I may not have understood perfectly and wouldn't want the doctor to be thought responsible for errors that are actually mine.

High spots of the Workshop:

Aggressive versus conservative initial treatment:

Some doctors believe that myeloma should be treated aggressively in the beginning, with a three-drug regimen, for example, while others prefer a more conservative approach, perhaps using just one drug in the beginning and reserving the others. This doctor believes that the issue is not settled yet, despite some studies, and I got the impression that Mayo doctors in Rochester would likely treat a new patient conservatively unless the patient's myeloma was "high-risk," about one fourth of cases.

Maintenance with Revlimid:

After an autologous stem cell transplant, a patient has the choice of maintenance, probably with Revlimid, or no treatment at all. In either case the myeloma almost always returns, but recent studies have shown that maintenance delays that return. After the return the myeloma is treated again, of course, and until now there was no clear survival advantage to maintenance, but one ongoing study has now shown some advantage.

What's new?:

• Proteasome Inhibitors:
  
  Velcade is a proteasome inhibitor. Recently it has been shown less likely to cause neuropathy if given subcutaneously (under the skin) than when given the usual way as an IV infusion. Carfilzomib, a new drug, is less likely to cause neuropathy than IV Velcade and may be close to FDA approval. Other proteazome inhibitors are in trials.
  
  
• Monoclonal Antibodies:
  
  Our bodies manufacture antibodies to attack invading bacteria and viruses, one type of antibody for each different invader. Researchers are developing synthetic antibodies which attack myeloma cells. In conjunction with chemotherapy, synthetic antibodies have become an important therapy in treating leukemia, and now they are showing promise in treating myeloma.
  
  
• Immunomodulatory Drugs:
  
  Like Revlimid, pomalidomide appears to be a very successful treatment. Right now, the only trial available at Mayo is for people for whom Revlimid no longer works, but I got the impression that Celgene, the drug's developer, may go for FDA approval soon. It's good stuff - I wish I could help!

For much more information about the 2011 International Myeloma Workshop, visit this International Myeloma Foundation web page.

The Rochester meetings are held in a cozy room in the Gift of Life Transplant House. Some of the attendees are from out of state, staying in Rochester as they recover from a transplant or other medical issues, and some live near Rochester and commute in to the meetings. We enjoyed the meeting and the warm, welcoming atmosphere. There is always a knowledgable representative from Mayo Clinic. For meeting dates, go to minnesotamyeloma.blogspot.com and scroll down the right-hand panel.

Still Stable

Pomalidomide Study:

After 41 cycles on the pomalidomide (CC-4047) study, my M-Spike is still 1.0 g/dL, and IgG is up only slightly. Lambda light chains are up significantly, but they were down a lot last month.

News from the International Myeloma Workship in Paris:

New data from the CALGB study showed that patients who were given Revlimid maintenance after a transplant achieved an overall survival rate of 90% after two years or more, compared with 83% for patients receiving a placebo. Some doctors believe that maintenance therapy of some kind will become the new standard of care. Here is the IMF article. The IMF is the International Myeloma Foundation.

That information and other myeloma facts were presented at a Journalists Workshop, a video press conference by the IMF, which is available for viewing on the web. It lasts about an hour, and is a summary of the high points of the Myeloma Workshop. At about 45 minutes there is a one-minute clip showing me running in a marathon in Providence, Rhode island last Sunday. The clip was included in the press conference as a demonstration of the effectiveness of the new study drug pomalidomide. You could fast forward through the running part, but the rest of the video is actually interesting and I recommend it.

Some Current Test Results:

Test		Feb 07		Mar 09		Apr 07		May 05		Remarks
M-spike g/dL		1.0		1.0		1.0		1.0		Best tumor measure?
IgG mg/dL		1200		1050		1080		1130		Best tumor measure?
L FLC mg/dL		2.47		2.50		2.08		3.07		L Free light chains
Calcium mg/dL		10.1		9.6		9.9		9.4		Dandy
Creatinine mg/dL		1.0		1.0		1.2		1.1		Kidney, OK
HGB g/dL		16.0		15.2		15.5		14.7		Hemoglobin, good
RBC M/uL		4.44		4.40		4.27		4.11		Red cells, marginal
WBC K/uL		4.1		5.3		4.9		4.6		White cells, OK
ANC K/uL		1.40		1.61		1.90		1.90		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.

Today's lunch: Leftover roast organic chicken (I love cold chicken), hot organic broccoli with a little hot sauce, organic heritage plum tomatoes, and organic USA strawberries. Everything there is normal size except the strawberries, which are enormous. It's strawberry season!

Fifty One Marathons

Two weeks ago I finished my 50th marathon, on the Jersey Shores boardwalks. Yesterday was the 51st, running through beautiful Providence Rhode Island. All 51 of those have happened since my myeloma diagnosis. The International Myeloma Foundation sent a photojournalist to interview me yesterday and film some running.

At a medical meeting just now beginning in Paris, journalists are putting together videos which will include a little of my running. It should go live at 11:30 Eastern Thursday, May 5, at this web address.

More later.


With Sunshine after the race:

Boring Mayo Clinic Visit

Never. Even though nothing changed this month, I never feel complacent. Forty cycles on the pomalidomide (CC-4047) study are complete, and nothing changed this month, so I could have felt complacent. But I dread the inevitable day that the myeloma figures out how sidestep the pomalidomide - life will change when that happens, maybe not for the worse, there are other treatments, but life will change. Also, I suppose I don't want myeloma's reemergence to be a shock when it happens, and it can't be a shock if I'm always fully aware of the possibility.

Dr RH:

This visit was as routine as any we have. We don't know Dr RH very well, so after the medical stuff was done we chatted a bit, learned a little about each other. We like him - he'll do well for us, replacing Dr KDS, who really is gone now and whom we will miss. We also saw Dr L for a few minutes, a treat.

The Evolution of a Myeloma Recurrence:

With few exceptions, myeloma figures out how to defeat every medication. Maybe now, maybe later, even much later, but it does. I am definitely not a doctor or a biologist or anything of the sort, but I nevertheless have a simpleminded theory about that:

• Some carcinogen alters the DNA of a plasma cell, or maybe a memory B cell, in such a way that the cell forgets how to die when it ought to, and perhaps with other DNA problems too, but without alerting the body's normal defenses. There may actually be MANY alterations of the cells, but most are detected and squashed, or cause that cell to die, or fail for some other reason, until one suceeds. This is how cancer starts, including myeloma.
• That cell also has the ability to replicate itself or to produce other myeloma cells. I think there is still some dispute about how this happens - is the original progenitor a stem-like cell or an actual plasma cell? Anyway it multiplies.
• A medicine (Revlimid, Velcade, melphalan, whatever) is able to kill the myeloma cells or reduce their rate of replication. The tumor burden goes down - yay!
• But additional carcinogens, or the same carcinogenic influences, continue to make random alterations to the DNA of the remaining myeloma cells, which mat not be very stable to begin with. Most of these changes don't make any difference, or they may even cause the cell to die, but eventually one of those changes, by chance, makes a cell resistant to the current medications.
• Now, that twice-altered cell is the strongest of the myeloma cells and is able to proliferate faster than the old ones in the face of the medication. It multiplies, replaces the old myeloma cells, and the drug is no good any more.

Anyway that's my theory and I'm sticking to it. If it were true, what would be the implications? Most important, REMOVE AS MANY CARCINOGENIC INFLUENCES AS POSSIBLE! We should do exactly the same things that we should be doing to PREVENT cancer in the first place:

• Eat the healthiest foods, organic where that is important, to reduce the intake of pesticides.
• Maintain a healthy weight - studies show that overweight alone is a carcinogen.
• Exercise several times per week, to keep the body's immune system and other systems healthy.
• Don't smoke, duh.
• Stay away or protect ourselves from other common carcinogens such as gasoline, solvents, formaldehide in new construction or furniture, herbicides, pesticides, plus food additives such as nitrites and BHA/BHT.

I wrote more about cancer prevention in a previous post. It's how to live.


Gluten-free oatmeal with organic yogurt, organic strawberries, organic pear, pineapple, kiwi, walnuts. Might be some organic blueberries under there too.

Calcium In Heart and Arteries

Recently I posted about remarks in two different PET scans. A PET scan uses two different imagining technologies, combining the results to show where cancer cells might be congregating. One of those is a CT scan, which shows clear images of bones and any other calcium in the body. Three years ago, in 2008, the radiologist who read the CT images said "There are scattered mild vascular calcifications in the aorta and coronary arteries." Calcification is an indicator of heart disease, but this didn't sound too bad. This year, though, the radiologist wrote "Coronary and vascular calcification. Bilateral renal calculi." Sounds worse, more definite, right? For sure, the kidney stones (renal calculi) were not mentioned three years ago, and no qualifiers like "scattered mild" appeared this year.

The scans were viewed by different radiologists, so was there really a difference, or was the apparent difference simply due to different personalities or reporting styles? I actually called the radiologist who did the recent report, and didn't get much help. He sounded very busy and, without looking up my actual report, said (1) he sees calcifications on many (most?) scans, (2) for sure all of the scanned images that he uses to make his report would be there for me to see on the DVD, and (3) I should trust the opinion of my oncologist rather than his, as he was "just" a radiologist.

PET Images:

I asked Mayo Clinic to send me a DVD containing both scans, so that I could provide them to local doctors but also so that I could peek at them myself. The DVD contains thousands of images and also the software necessary to view them. I believe I have identified several calcified spots in the heart, and I see no difference between last year's scans and those of 2008. Same spots in the same places. Similarly, I see very evident kidney stones, but not much difference since 2008. I've already reduced my calcium supplements to deal with those.

Doctor NB:

My new primary care provider (PCP) is just out of residency, but seems pretty sharp. He assured me that "almost all" of the CT scans he sees show vascular calcification. That is scant comfort, of course, when we know that heart disease is the leading cause of death among mature adults. But he also said that I am already doing everything that he would recommend. We eat a very heart-healthy diet, I run 20-30 miles per week, and get enough sleep. My blood pressure is fine, cholesterol is good except for HDL, which is chronically too low, always has been. We talked about ways to improve HDL, but I've tried niacin without success and he was reluctant to prescribe statins because the potential side effects might outweigh the benefit.

We've read that HDL can be related (inversely) to belly fat, and I have an extra 10 or 15 pounds of that. When I told Dr NB that I intended to take some of that off, to help increase HDL, he seemed a bit skeptical but certainly didn't discourage it.

Bottom Line: I'm done worrying about "calcification" for now. I'll do the Weight Watchers' thing, take the weight off, and then we'll see.


This is a CT "fusion" Image, from the PET/CT scan, looking at a slice of my body from the viewpoint of the feet. I'm laying on my back, so the spine is at the bottom of the image, the sternum at the top, upper arms outside right and left. The two large, dark areas are the lungs, with the heart appearing as a gray area between the lungs, slightly off-center to the left (our right). There is one bright spot in the heart - a calcification. There are a few others in other parts of the heart. Anyway, that's my very amateurish interpretation:

Not So Fast, Buster

In the last post I celebrated three years' stable disease in the pomalidomide drug study, and especially the disappearance of the bone lesions revealed by a PET scan three years ago. Yay!

But oops. The very last sentences of the very last-received test result (the new PET scan) say: "Significant incidental findings on the low-dose unehnanced CT fusion images. Coronary and vascular calcification. Bilateral renal calculi."

What does this mean? I'm definitely not a radiologist, but I see two issues, neither related to myeloma:

• Calcification (hardening) of blood vessels in the heart and elsewhere; and
• Kidney stones.

Kidney Stones:

Dealing with the kidneys first, I took a good look at my calcium intake and found that I was getting about twice the recommend 1200 mg of calcium daily. I took 1200 in supplements, and most days got another 1200 or so from food, mostly dairy products. Kidney stones can cause infection, and of course the severe knife-in-the-gut pain that strikes if a stone enters the urinary tract, so they are a concern.

I stopped the calcium supplements, at least for now, except for one 300-mg tablet in the evening if the day's intake from food is below 1200 mg. That should help the kidneys, though I can only hope that it doesn't impact bone strength. Even more important is water intake, and I don't drink much - getting water mostly from coffee and fruit. I need to find a way to make increased water intake a normal part of my day. I'll start with one 16-oz glass of ice water at the desk every morning and afternoon, see how that goes. If I can make it work, that will be a big improvement.

Coronary and Vascular Calcification:

That's athersclerosis. Yikes! What an awful-sounding word, even in print. How can this happen to a dedicated, competitive runner who eats as well as I do? A PET scan three years ago noted "scattered mild calcifications," but the qualifiers "scattered" and "mild" are not found in this month's scan, hence the concern. The images were interpreted by different radiologists, so it's hard to know the amount of change, but the second radiologist was looking at the notes from the previous scan when he made his new notes. We've heard that the cure for myeloma is to live long enough to die of something else, but heart disease is a quick way to get there and I'm not in that much of a hurry. I'd prefer they would come out even.

Perhaps the reduction in calcium intake will help - the literature I've found seems to be mixed. One article suggested that calcium supplements may increase the risk of athersclerosis while normal amounts of calcium from food may not. But more can be done.

I now have at least four independent risk factors for serious heart disease:

• Age of 70;
• Family history - my paternal grandfather died of heart disease, and my father has heart disease;
• Chronically low HDL; and
• Now, diagnosed "coronary and vascular calcification." Is that a risk, or actual disease?

I can't fix the first two, but I may be able to do something about HDL, and thereby calcification as well. Since 1992 my HDL has wobbled between 26 and 42, most recently 36, where a desirable HDL is 60 or more g/dL. Total cholesterol is fine, at 154 g/dL, but HDL proteins are the blood-vessel scavengers capable of undoing damage done by LDL. Three years ago my HDL was 42, but since then dexamethasone (DEX) has destroyed some of my muscle tissue, which hasn't returned since discontinuing DEX. In its place, or rather in a different place, my body has accumulated an equal weight of excess fat, especially around my belly. According to a Mayo Clinic article, this belly fat may significantly degrade HDL.

In past years I've tried and given up on statins, garlic, green tea, and niacin, none of which raised HDL and all of which were either unpleasant or had unwanted side effects. I do know how to lose weight, though, and the side effects are quite positive: Better body image, better overall health, faster as a runner, and hopefully, improved HDL. I'm not clinically overweight by any means, with a BMI of 22.1, but my body is now out of proportion, with a waist of 35 inches (89 cm) compared with a height of 70 inches (178 cm). I'm definitely not "trim" any more. Therefore, I've started back on the Weight Watchers program, keeping a journal of what I eat and making the best choices. It's not easy but it works; the weight will come off, slowly and sensibly. 154.5 pounds (70.1 Kg) this morning, heading down.

Further, I have requested copies of both PET scans from Mayo, and will make copies and then give them to my new PCP, Dr NB. Depending on his recommendations, a visit to a cardiologist could be in my future as well. I'll probabaly see my naturopathic doctor too, once we know more about the risk.

This has little or nothing to do with myeloma, I know. So if it becomes a big thing, I may start another blog, about heart disease. Uff-da.

Breakfast:

Best Possible News

Well, the BEST possible news would be if the cancer magically disappeared, but I haven't seen anyone walking on water lately except the locals who fish through the ice. Otherwise the news is all good:

• IgG is down from 1200 to 1050 mg/dL;
• M-spike is unchanged at 1.0 g/dL, but this month it actually makes sense;
• Free light chains are stable, similar to other recent values;
• A bone-density (DEXA) scan shows a slight INCREASE in bone density. The differences in results are within the measurement error of the machine, but at least the bone density has not gone down since one year ago; and
• A PET scan three years ago, at the beginning of this study, showed myeloma lesions in three bones. Today's scan shows no lesions. Combine this with good blood-test results for calcium, kidney (creatinine), and hemoglobin, the C.R.A.B. symptoms are all negative, so the myeloma is not symptomatic any more. Cool.

This was the 39th cycle of the pomalidomide drug study at Mayo Clinic in Rochester. Pomalidomide and dexamethasone brought my M-spike down from 2.7 to 1.0 g/dL in just a few months, and has kept it stable since. According to one famous doctor (I can't remember who), stable disease is almost the same as a complete remission. I'll remain on the study, of course, because no one believes that the myeloma will sit still without the pomalidomide.

Happily, the dexamethasone was gradually reduced, and finally stopped over a year ago, and the pomalidomide has been on its own since then. I have mild side effects: Slight neuropathy in fingers and feet, and a reduced heart rate which affects running but nothing else. There is also a risk of deep-vein blood clots, for which I take an aspirin daily. I am happy to accept those risks and side effects in exchange for symptom-free myeloma.

Kudos to Mayo Clinic:

All of the tests, including all of the blood tests, an electrocardiogram, the DEXA scan, and the PET scan, were done in one day, with all results available by the end of the day. What a place. It sounds like bragging, I guess, and perhaps it is, but really I wish everyone could live close to a medical center like Mayo Clinic. I feel blessed.

Actually, I did have the CBC with differential done on the previous day, not because Mayo would have any problem with it but because my neutrophil count is always higher in the afternoon, and my other blood tests are done in the morning. It worked again - the neutrophil count has to be at least 1000 lil' soldiers per microliter, or I have to stop the study for a while, and they were 1610.

Doctor RH:

Dr KDS is gradually going away, which we lament, but alas, it will really happen. She stopped by today, but for most of the appointment we saw Dr RH, who did an excellent job in her stead, of course. We discussed:

• Recent pain in the left hip. Is this myeloma? Answer: Wait for PET scan results. Later in the day, the PET scan was negative for lesions anywhere, including the hip.
• Recent pain in the right femur: Myeloma? Same as above.
• Second primary cancers in stem cell transplant patients on Revlimid maintenance: Dr RH was totally up to speed on this issue, and also confirmed that the "information isn't there" to tell us whether people on pomalidomide maintenance could experience the same thing. Anyway, I think the whole issue may end up being a tempest in a teapot. I hope. There are a LOT of good doctors looking into it though.

Some Current Test Results:

Test		Dec 16		Jan 13		Feb 07		Mar 09		Remarks
M-spike g/dL		1.0		1.2		1.0		1.0		Best tumor measure?
IgG mg/dL		1080		1170		1200		1050		Best tumor measure?
L FLC mg/dL		2.41		2.49		2.47		2.50		L Free light chains
Calcium mg/dL		9.8		10.3		10.1		9.6		Dandy
Creatinine mg/dL		1.0		1.4		1.0		1.0		Kidney, OK
HGB g/dL		14.6		15.3		16.0		15.2		Hemoglobin, good
RBC M/uL		4.23		4.48		4.44		4.40		Red cells, marginal
WBC K/uL		5.1		3.3		4.1		5.3		White cells, OK
ANC K/uL		2.50		1.19		1.40		1.61		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.

Roast bison, quinoa with organic spinach and raisins, organic variety tomatos:

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:

Itty Bitty Snowstorm

We three headed off to Rochester for my every-28-day early-morning blood draw at Mayo Clinic, part of the Phase II pomalidomide study. Highway 52 was dry and clear of ice, until suddenly we found ourselves in a snow squall at 65 mph. Traffic slowed, the road was wet, the flying snow swirled in our headlights. Then, in less than a minute, the snow disappeared again, giving way to a clear, starry sky. Why? During that little storm we passed by a refinery, and apparently the zero-degree air was turning the refinery's abundant water vapor exhausts into a local micro-mess for travelers. I've never seen that before. I don't mind if I never see it again.

Cancer Markers:

The Mayo visit went OK, the end of the 37th 28-day cycle. After a 6:30 am blood draw I was scheduled for a 3:15 pm visit with Dr L, but got in to see Dr KDS (yes, she's still here!) instead at about 10:15, which got us home hours ahead of the original schedule.

Test results, however, were no better than so-so. IgG went up about 8%, from 1080 to 1170 mg/dL, and M-spike skyrocketed 20% from 1.0 to 1.2 g/dL. Converting units, this puts M-spike at 1200 mg/dL, which is a physical impossibility because M-spike is the monoclonal (bad) part of IgG and therefore must always be lower than IgG. So which measurement is wrong? I'm of the opinion that IgG, measured by immunofixation, is more accurate than M-spike, measured by electrophoresis, so I'll take that IgG value. In fact, I think that Mayo's M-spike measurements have always been high. When I changed from Minnesota Oncology to Mayo three years ago, my M-spike jumped up 32% even though IgG sat still. I don't know which is wrong, MOHPA or Mayo, but there is certainly something fishy today. Anyway the cancer markers are up a little, but they do bounce around, and I don't need to get my shorts in a twist about it.

Calcium and Creatinine:

Dr KDS is just a little concerned about calcium at 10.3 mg/dL and creatinine at 1.4 mg/dL, both slightly above the reference range. Calcium has been that high before, but creatinine, which is a measure of kidney function (malfunction?), has never been quite so high. She gave me an order to have those tested again in a week, at the local clinic. She couldn't think of a medical reason why BOTH calcium and creatinine would go high at the same time. Vitamin K2 helps calcium to deposit in the bones instead of circulating in the blood, and I had been out of it for a couple of weeks, so I'll take that for the calcium and lots of water for the creatinine and see if those numbers go down.

Neutrophils:

Pomalidomide drives neutrophils down, including mine. If they go below 1000 cells per microliter, I have to go off the study, at least until they come back up. As in recent months, I had neutrophils checked (CBC with Diff) the day before the Mayo visit, in the afternoon at the local clinic, instead of in the morning at Mayo when all of the other blood tests are done. At 1:00 pm on Wednesday, neutrophils measured 1800, well above the threshhold and actually into the "normal" range. Unknown to me, though, Mayo had accidentally scheduled another CBC, to be done with the other tests at 6:30 am Thursday. Since it was the more recent test, it would override the previous test if it were under 1000. Happily, it was 1190. Note, though, that the afternoon neutrophil count was 51% higher than the morning count. I also do some vigorous exercises just before the blood draw, because adrenaline helps too. These are not tricks - the neutrophils are real - they just hide in the morning. It doesn't work for everyone, I'm told, but it's working for me.

Some Current Test Results:

Test		Oct 20		Nov 18		Dec 16		Jan 13		Remarks
M-spike g/dL		1.1		1.2		1.0		1.2		Best tumor measure?
IgG mg/dL		1130		1300		1080		1170		Best tumor measure?
L FLC mg/dL		2.78		2.92		2.41		2.49		L Free light chains
Calcium mg/dL		10.0		10.3		9.8		10.3		Slightly high
Creatinine mg/dL		1.0		0.9		1.0		1.4		Kidney, high
HGB g/dL		14.9		15.0		14.6		15.3		Hemoglobin, OK
RBC M/uL		4.31		4.26		4.23		4.48		Red cells, marginal
WBC K/uL		4.3		5.9		5.1		3.3		White cells, OK
ANC K/uL		2.14		2.30		2.50		1.19		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.

Recent breakfast, oatmeal on top. Frozen organic blueberries and strawberries, fresh kiwi, organic walnuts, organic kefir (tastes better than yogurt):

Whoopee!

IgG and M-spike both dropped 17% in the last 28 days, more than offsetting the increase of last month, and returning to levels that are typical of the stable plateau of the last two and a half years or so. Still on the pomalidomide (CC-4047) trial, I'm a happy camper. Please enjoy a beer for me.

Why did it go down? The better question is, why did it go up last month? Maybe because at that time I was recovering from two different virus infections and probably a related bacterial infection, and also had quite recently received my flu shot, the Magnum Jolt version for seniors.

Interesting: If it's true that IgG went up last month because of challenges to the immune system, then M-spike must have gone up for the same reason. Indeed, it's possible that the entire increase in IgG came from the M-spike component of IgG. Why would M-spike respond to challenges from intruding organisms? The answer is way above my pay grade.

Neutrophils: Again I had the CBC done at the local clinic on the afternoon before the visit to Mayo, because my neutrophil count seems to be much higher in the afternoon than in the morning. Also, just before the blood draw, I run up four flights of stairs and do some pushups, trying to squeeze out a little adrenaline, which is thought to tease the neutrophils out of their hiding places. Absolute neutrophil count was 2.5 K/uL, well into the normal range and WAY above the cutoff threshold of 1.0. Yay.

Discussed with Dr KDS:

• We agreed that I'm still stable on pomalidomide as a single agent. I won't change anything.
  
  
• A recent study has (finally!) shown that Zometa, one of the bone-building bisphosphonates, actually has a modest anti-myeloma benefit in addition to its bone-strengthening ability, improving both the average time to disease progression and the overall survival of study participants. Doctors are still getting their heads around this, but one possibility for some patients is Zometa once every month! Zometa can have serious side effects, though, including unusual and disabling fractures, and osteonecrosis of the jaw, so it is not an automatic prescription.
  
  
• Two more studies, evaluating the use of Revlimid as maintenance therapy after stem cell transplant, showed that patients in the Revlimid arm of the study developed more secondary cancers than those in the placebo arm. Numbers were small, however, with less than 3% in both arms together developing a secondary cancer. Both studies, by the way, also demonstrated that maintenance therapy improved time to disease progression, but neither showed a clear improvement in overall survival.
  
  
• Recent evidence suggests that my immune system may not be as strong as I have though it was. Three different virus infections were defeated only very slowly. Dr KDS is concerned that I could contract an opportunistic fungal infection called pneumocystis pneumonia, common with AIDS patients who may also have compromised immune systems. She prescribed a sulfa-based antibiotic called trimethoprim-sulphamethoxazole, brand name Bactrim, to be taken every day as a prophylactic treatment to prevent that pneumonia and any number of other bacterial and fungal infections.
  
  There is a slim possibility of myelosuppression, however, which means low red and white blood counts; HELLO I already have that from the pomalidomide. It can also, rarely, cause liver or kidney failure, a potentially fatal complication. I hadn't heard of Bactrim prophylaxis before, but Dr KDS said that it has been used without incident by other patients in my situation. She knows that I will study this stuff and do my best to balance the risk of pneumonia against the risk of side effects, before making a decision. She also gave me an order for liver and kidney function tests which I can have done after trying the antibiotic for a week or two. Perhaps I'll talk to Dr B, my new PCP, about this.

Some Current Test Results:

Test		Sep 23		Oct 20		Nov 18		Dec 16		Remarks
M-spike g/dL		1.2		1.1		1.2		1.0		Best tumor measure?
IgG mg/dL		1070		1130		1300		1080		Best tumor measure?
L FLC mg/dL		2.58		2.78		2.92		2.41		L Free light chains
Calcium mg/dL		10.0		10.0		10.3		9.8		Below 10.2 is OK
Creat mg/dL		0.9		1.0		0.9		1.0		Kidney, OK
HGB g/dL		15.8		14.9		15.0		14.6		Hemoglobin, OK
RBC M/uL		4.43		4.31		4.26		4.23		Red cells, marginal
WBC K/uL		4.2		4.3		5.9		5.1		White cells, OK
ANC K/uL		1.60		2.14		2.30		2.50		Neutrophils, normal!

Related Links:

My Myeloma		A discussion of my myeloma, not very technical.
My Treatment History		Not technical.
My Test Charts		Graphic displays of several key test results over time.
My Test Result Table		Somewhat technical. Best with a wide browser window.
My Supplement Regimen		With links to where I buy them.

Uncertain Result

At the end of the 35th cycle of pomalidomide, IgG is up 15% to 1300 mg/dL, and M-spike is up 9% to 1.3 g/dL from the end of the previous cycle. Further, lambda light chains are up a little with kappa chains down. The markers are consistent, all pointing to an increase in actual tumor burden.

But maybe not. I had a bad cold with fever for most of the four weeks preceding this blood draw, and then also got my "high dose" flu shot. Either of those insults could have caused IgG to go up, the "good" immunoglobulins responding to the threats. Also, M-spike had been at 1.3 two months before, so it's just back to where it had been. As always, I'll be wondering what next month's tests will bring.

Neutrophils were up this time, well into the normal range, probably in response to those same two threats. We get the CBC at the local Stillwater clinic the afternoon before the Mayo Clinic visit, because my neutrophils are much higher in the afternoon, but I suspect they would also have been well above the threshhold of 1.0 K/uL in the morning at Mayo on this occasion.

Calcium is up because I took my usual supplements. Often I skip calcium tablets for a day or two before the Mayo blood draw, to avoid this slightly-high reading. It will be down next month, if I remember to skip calcium.

Flu Shot:

I got mine at the local clinic, and learned afterward that there are two dosages: (1) Normal dose for adults, and (2) "High dose" for seniors 65 and older, four times the strength, which is the shot I received. In discussing this later at Mayo Clinic, it appears that the CDC has given very little guidance about the use of this high-dose shot. Should a senior be given that shot even if he/she has a compromised immune system? If so, what about an adult under 65 with a compromised immune system? Apparently, doctors are left to make this decision themselves with no help from the CDC.

Some Current Test Results:

Test		Aug 24		Sep 23		Oct 20		Nov 18		Remarks
M-spike g/dL		1.1		1.2		1.1		1.2		Best tumor measure?
IgG mg/dL		1100		1070		1130		1300		Best tumor measure?
L FLC mg/dL		2.79		2.58		2.78		2.92		L Free light chains
Calcium mg/dL		10.1		10.0		10.0		10.3		Below 10.2 is OK
Creat mg/dL		1.3		0.9		1.0		0.9		Kidney, OK
HGB g/dL		15.7		15.8		14.9		15.0		Hemoglobin, OK
RBC M/uL		4.39		4.43		4.31		4.26		Red cells, marginal
WBC K/uL		4.4		4.2		4.3		5.9		White cells, OK
ANC K/uL		1.41		1.60		2.14		2.30		Neutrophils, normal!

Related Links:

My Myeloma		A discussion of my myeloma, not very technical.
My Treatment History		Not technical.
My Test Charts		Graphic displays of several key test results over time.
My Test Result Table		Somewhat technical. Best with a wide browser window.
My Supplement Regimen		With links to where I buy them.

Banana Man and Minnesota Don (right) near the finish of the Route 66 Tulsa Marathon. Banana Man is a Team In Training (TNT) runner, raising money for the Leukemia and Lymphoma Society, which supports myeloma research too. Banana Man had run another marathon the DAY BEFORE, or else I would never have seen him after the start.