Sunday, May 22, 2011

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 and scroll down the right-hand panel.

Friday, May 6, 2011

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!

Monday, May 2, 2011

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: