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.

More Great News

Mayo Clinic Visit Thursday, August 20, 2009, end of Cycle 19

Pomalidomide works! At the end of the 19th 28-day cycle on the Pomalidomide / Dexamethasone Phase II trial my M-Spike is 0.8 g/dL, as low as it has ever been, IgG is 979 mg/dL, below 1000 for the first time ever, and neuropathy caused by the pomalidomide (CC-4047) is easily tolerated and has not increased in two months. No big breakthrough this month, just more evidence of a continuously stable or declining tumor burden. I'll take it!

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."

Here are a few of the latest test results:

Test		May 28		Jun 25		Jul 23		Aug 20		Remarks
M-spike g/dL		0.9		0.9		0.8		0.8		Best tumor measure
IgG mg/dL		1030		1010		1010		979		Variation is normal
L FLC mg/dL		2.60		2.63		1.95		2.07		L Free light chains
Calcium mg/dL		10.0		9.6		9.7		10.0		Below 10.2 is best
Creat mg/dL		1.0		1.0		1.1		1.0		Kidney, lower is better
HGB g/dL		14.4		14.0		14.8		14.5		Hemoglobin, normal
RBC M/uL		4.06		3.93		4.13		4.01		Red cell count, low
WBC K/uL		4.0		5.6		3.9		3.7		White cells, normal

Doctor:

Discussion with Dr KDS:

• My neuropathy has not become worse in the last two or three months. It reached a level where the balls and heels of both feet are partially numb, along with one thumb, and then it stopped advancing. It's quite livable, barely noticeable most of the time.
• I've lost four pounds in the past two months. Maybe. If so, it would be a very good thing.
• I have the usual litany of dexamethasone (DEX) complaints:
  • Thin, aged-looking skin, easily bruised,
  • Slow healing of wounds,
  • Slow running - muscles wasted, and
  • A new complaint: Sleep is hard to come by the night after "DEX day."
• I have been taking 8 mg of DEX once per week, and that will be reduced to 4 mg from now forward, by agreement of Dr L, Dr KDS, and myself.
• The next lower level of DEX on this Phase II Pomalidomide trial, after 4 mg, is NONE. I like the sound of that. Say it again: NO DEX!
• I've been on DEX for 18 months now. If I were NOT on a trial, Dr L and Dr KDS would probably have taken me off DEX by now, she said, because of its many negative side effects. The trial does not allow a participant to go back on DEX, however, so they haven't moved me off quite as fast.
• Soon, though, I hope. Life is wonderful, considering the alternative, and I've had far fewer symptoms than most from myeloma and its treatments, but assuming that the numbers will remain stable I'd love to get some running speed back. What a treat that would be.
• I asked what additional long-term DEX effects I should watch for. Her response was "myopathy," which basically means weakening of muscles. In this case I think we're talking about skeletal muscles, and it's certainly happening already, as demonstrated by the loss of running speed.
• My blood pressure was excellent this morning, 123/66, but pulse rate was only 39, even though I had just walked in to the exam room and sat down. She seemed unconcerned - I have a history of heart rates in the 40's because of the running.
• How low is too low? I suspect that my heart rate goes considerably lower when I'm dropping off to sleep. Seems like it does.
• We both believe the low HR to be an effect of the pomalidomide, not the DEX. It seems to reduce my HR at the high end, too, limiting my top running speed in shorter, high-energy races. Going off DEX wouldn't help that.
• Most people who have been on the trial for this long have had their pomalidomide regimen reduced to 21 out of each 28 days, rather than every day. In most cases this is done because the person's neutrophil count or white-blood-cell count (WBC) has dropped below acceptable threshholds. I still take it every day.
• My neutrophils are 1.45 K/uL, about as low as we have seen them, but still well above the threshhold. Ditto my WBC. They may be a little lower than usual simply because I haven't recently been exposed to a threat.
• Or maybe not. Platelets are low too, at 167 K/uL, though they also have been as low in the past. All three of these numbers could be depressed somewhat by the pomalidomide. That does happen to other people, and time will tell.

For this last cycle I took the pomalidomide in the morning, as often as I remembered to do it then, before eating anything at all. I thought that it might have the most impact if taken on an empty stomach. If so, it didn't seem to make a very big difference. Nevertheless, I liked that and will continue doing it that way for the next cycle. DEX will be taken with Sunday dinner, as it was during this cycle.


Breakfast after a 5-mile run. Oatmeal below, most things are organic including the globs of yogurt.