Stacy Needs Your Stem Cells

Stacy is a young Minnesota mother who needs an allogeneic transplant, and the doctors have not yet found a match for her.

For more information, please visit Minnesota Myeloma

L-Arginine

July 28, 2011

Cycle 44 of the pomalidomide trial is complete and my myeloma is still stable. IgG is down a few percent, M-spike is unchanged, and Lambda free light chains are up, but only to where they usually sit. NOT ho-hum, though - I'm always a bit nervous, because we know that the lovely ride on pomalidomide will come to an end someday. Not today though. Yay!

L-Arginine:

I mentioned to Dr RH that L-Arginine made a significant improvement in a uniquely-male problem for me. He seemed pleased, but did caution that there is some anecdotal evidence that L-Arginine can increase the frequency of cold sores (herpes simplex). Perhaps it helps the herpes virus to replicate. In the same vein, a blog reader has commented that he developed shingles (herpes zoster) while taking 2000 mg L-Arginine daily. Ouch.

Consequently, an increased risk of cold sores and shingles outbreaks may be the price of improved erectile function through L-Arginine. Cold sores might not be such a high cost, but shingles can be very painful and, in rare cases, can even result in permanent injury. Further, we myelomiacs have an unusually high risk of shingles, because our immune systems are impaired.

Nevertheless, I'm not stopping the L-Arginine, at least not until I learn the lesson the hard way. I take a daily capsule containing 500 mg L-Arginine and 250 mg L-Ornithine. However, I also take a daily tablet of L-Lysine 500 mg, which is reputed to help suppress those viruses.

Some Current Test Results:

Test		May 05		Jun 02		Jun 30		Jul 28		Remarks
M-spike g/dL		1.0		1.1		1.0		1.0		Best tumor measure?
IgG mg/dL		1130		1110		1070		1030		Best tumor measure?
Lambda mg/dL		3.07		2.52		1.74		2.21		L Free light chains
Calcium mg/dL		9.4		10.4		10.0		9.8		Normal
Creatinine mg/dL		1.1		1.2		1.3		1.3		Kidney, High
HGB g/dL		14.7		15.2		14.8		15.1		Hemoglobin, good
RBC M/uL		4.11		4.13		4.28		4.17		Red cells, low
WBC K/uL		4.6		4.9		3.6		5.1		White cells, OK
ANC K/uL		1.90		2.40		1.17		1.90		Neutrophils, OK

Creatinine is a measure of the kidneys' ability to clear waste from the blood, and has been a little high (wrong direction) for several cycles now. I don't quite know what to think about that. Drink more water I guess ...

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.

Leftovers atop greens, with sweet potatoes and beans. Mostly organic, especially the sweet spuds, greens, and beans. The red lines on the sweet potato slices are a tasty pepper sauce:

Excellent IMF Seminar in Minneapolis

Dr. Parameswaran Hari, MD, MS, and Teresa Miceli, RN, BSN, OCN spoke to a large group at the Minneapolis Sheraton. Dr. Hari is Section Head and Clinical Director, Bone Marrow Transplantation, University of Wisconsin in Milwaukee. Teresa Miceli is a bone marrow transplant coordinator and preseneter at Mayo Clinic in Rochester, MN.

Dr. Hari:

You would be well served with Dr. Hari as your myeloma doctor. He certainly seems as knowledgable as any doctor I've met. He cruised through a lot of information, on a lot of slides, in a fairly short time:

• My Favorite: During a coffee break, a patient asked Dr. Hari, "What can we patients do besides just following our doctor's orders?" Back on the podium, Dr. Hari departed from his prepared presentataion with with brief, unscripted lifestyle suggestions:
  
  
  1. Fitness: He recommended both weight training and aerobic exercise for people whose bones can take the stress.
  2. Nutrition: In addition, he recommended more vegetables and less red meat. Further, he mentioned that curcumin is a helpful myeloma treatment for some people and harmless otherwise, but green tea (or EGCG) should not be taken with Velcade because the green tea can rescue the myeloma cells that Velcade tries to kill.
  
  I've never heard such an enthusiastic endorsement of lifestyle changes from any doctor before. Every one of my doctors has wholeheartedly supported the choices that I have made, training for and running marathons, and eating the best diet we can find, but Dr. Hari proposed a similar lifestyle out of the blue.
  
  
• He also gave a quick review of what myeloma is;
• Some statistics about cases, including length of survival as treatments have improved;
• Some discussion of "high risk" versus normal risk myeloma;
• Spine repair;
• Current therapies, including the "novel" therapies: thalidomide, Revlimid, Velcade, and others in various ombinations;
• Transplants, including auto, allo, mini-allo, and combinations;
• Post-transplant consolidation and maintenance;
• Treatments which are in clinical trials including pomalidomide, catfilzomib, elotuzumab, and more;

More than once, Dr. Hari mentioned that the cure for myeloma is to hold it off long enough to die of something else, and he believes that should be the treating physician's first goal.

Nurse Miceli:

Teresa Miceli's presentation was titled "Managing Side Effects of Myeloma and Novel Agents:

• She discussed how myeloma itself impacts quality of life;
• Gastrointestinal side effects;
• Myelosuppression (low blood counts);
• DVT and other blood clots;
• Peripheral neuropathy;
• Renal function (drink, drink, drink);
• Bone health; and
• Sexual function and dysfunction.

What can we do in our battle with myeloma? Drink lots of water!

Thanks to the International Myeloma Foundation for hosting this seminar, free of charge to all.

Life is Great

June 30, 2011

Some runners don't like to run the same route over and over again, because repetition is boring. I agree, except when the route is incredibly beautiful, like a mountain trail, because genuine beauty doesn't get boring.

Test Results:

That's how I feel about the pomalidomide drug study at Mayo Clinic - I'm not bored. After the 43rd 28-day cycle, my myeloma is still stable, and that's beautiful, life is good. IgG is down a little, M-spike down a tenth, and Lambda light chains are down significantly. They go up, then they go down. I'm learning to go with the flow, which is especially easy when the flow is down, like today.

Actually, Lambda Light Chains dropped by 31%, while Kappa Chains went up a little, both going in the right direction. These are important cancer markers for some myelomiacs, and this sort of change would be good news for them. Light chains are not the best markers for my myeloma, though, so I don't know how much it means. Anyway it's certainly not bad news.

Creatinine is not a cancer marker, but is the primary kidney marker and is checked every month because myeloma can cause kidney failure. Creatinine was near the high end of the range for the second successive month. However, Dr RH explained that creatinine is a byproduct of muscle breakdown, which is happening to everyone all of the time but may be higher than normal in my case because of the running - I ran two marathons in the last 28 days, one just 12 days ago. So I won't worry unless it goes quite a bit out of range. Meanwhile, more water would probably be good. Kidneys like water. Alas, Dr RH didn't think that beer would do quite as well.

Supplements:

For this cycle I dropped two supplements: (1) Marrow Plus, Chinese herbs for bone marrow; and (2) Genistein, a supplement which may have an anti-tumor benefit but also some side effects. I also added a supplement containing L-Arginine 500mg and L-Ornithine 250 mg. Results:

• Marrow Plus: The neutrophil count shown below was unintentionally ordered and was performed this morning at 6:00 am, reading 1.17 K/uL. It's always low in the morning. The "real" (intended) count was done yesterday afternoon, reading 1.90 K/ul. Both of those numbers are above the cutoff for the study, and my conclusion is that I don't need the rather expensive supplement.
• Genistein: Since the tumor markers all went down, I assume that this supplement can also be dropped from the regimen. If it ever did any good, it probably isn't helping now.
• L-Arginine & L-Ornithine: These are closely-related amino acids with a reputation for improving blood flow. Listen up men: It works! "Blood flow" is objectively and subjectively improved. Maybe it helped to drop the Genistein, but I think it's the added L-Arginine. I might create another post about that if I get up enough nerve.

Some Current Test Results:

Test		Apr 07		May 05		Jun 02		Jun 30		Remarks
M-spike g/dL		1.0		1.0		1.1		1.0		Best tumor measure?
IgG mg/dL		1080		1130		1110		1070		Best tumor measure?
L FLC mg/dL		2.08		3.07		2.52		1.74		L Free light chains
Calcium mg/dL		9.9		9.4		10.4		10.0		High
Creatinine mg/dL		1.2		1.1		1.2		1.3		Kidney, OK
HGB g/dL		15.5		14.7		15.2		14.8		Hemoglobin, good
RBC M/uL		4.27		4.11		4.13		4.28		Red cells, low
WBC K/uL		4.9		4.6		4.9		3.6		White cells, low
ANC K/uL		1.90		1.90		2.40		1.17		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.

Hot and humid today, 98 at our house. This photo from April reminds us of cooler days:

IMF Regional Workshop July 23

International Myeloma Foundation (IMF)
Regional Community Workshop

Saturday, July 23, 2011
8:30 am - 3:00 pm

Sheraton Minneapolis
12201 Ridgedale Drive, Minnetonka, MN 55305

Brochure:

The Twin Cities Multiple Myeloma Support Group invites survivors (patients), families, caregivers, and friends to attend. It is free of charge, but please register with the IMF: Call 800/452-CURE (2873), or email theIMF@myeloma.org or Register on-line HERE.

From the IMF web site: "Regional Community Workshops are half-day meetings and are designed to provide much of the same information as that of a Patient & Family Seminar but in a condensed form. These meetings are held in smaller cities and allow the IMF to expand the reach of its programs to a wider audience. The faculty consists of local myeloma specialists, a nurse, and a speaker on supportive care issues. The IMF works closely with the local support groups to promote these meetings and attendance generally ranges from 50-75 attendees."

Faculty: The primary speaker will be Dr. Parameswaran Hari, MD, MRCP, MS, Clinical Director of the Adult Bone Marrow Transplant Program and Associate Professor of Medicine in the Division of Hematology and Oncology, Wisconsin College of Medicine. Also confirmed is Teresa Miceli, RN, BSN, from Mayo Clinic in Rochester, very knowledgable about myeloma and a blessing to her patients.

If the travel isn't too daunting, I can't recommend this event highly enough. You will undoubtedly:

• Meet other survivors;
• Meet Teresa Miceli and the doctors;
• Learn about myeloma and its treatment; and especially
• Learn about recent advances.

Personally, I would skip an important marathon to attend this workshop.

Don

Stable Again

June 2, 2011

I'm still on the pomalidomide drug study at Mayo Clinic, and the cancer markers seem stable after the 42nd 28-day cycle. IgG is down a little, M-spike up a little, and Lambda light chains are down. Par for the course. I take just 2 mg of that miracle molecule every night, along with some aspirin and an anti-viral to ward off shingles. I've enjoyed well over three years of a high-quality lifestyle, including 25 marathons, since starting pomalidomide.

Other test results are not quite as comforting though. For some reason calcium is a little high, and two different kidney markers are at the top edge of the reference range. I probably haven't been drinking enough water. Those tests are done every month, and we'll see how they look next month. Dr. RH didn't even mention them, so he probably wasn't concerned.

TSH is a thyroid marker which goes high when thyroid output goes low, and TSH was a little high, for the first time in years. It does bounce around some, and I'll get another reading in three months. I take a couple of supplements for thyroid, but haven't changed that.

Some Current Test Results:

Test		Mar 09		Apr 07		May 05		Jun 02		Remarks
M-spike g/dL		1.0		1.0		1.0		1.1		Best tumor measure?
IgG mg/dL		1050		1080		1130		1110		Best tumor measure?
L FLC mg/dL		2.50		2.08		3.07		2.52		L Free light chains
Calcium mg/dL		9.6		9.9		9.4		10.4		High
Creatinine mg/dL		1.0		1.2		1.1		1.2		Kidney, OK
HGB g/dL		15.2		15.5		14.7		15.2		Hemoglobin, good
RBC M/uL		4.40		4.27		4.11		4.13		Red cells, low
WBC K/uL		5.3		4.9		4.6		4.9		White cells, OK
ANC K/uL		1.61		1.90		1.90		2.40		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.

Pot roast with lots of onions, olives, potatoes, sweet potatoes, and interesting cheese.

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: