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.

Pomalidomide Is Still Working

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

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

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

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

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

Related links:

	My Myeloma		A discussion of my myeloma, not very technical.
	My Treatment History		Not technical.
	My Test Charts		Graphic displays of several key test results over time.
	My Test Result Table		Best with a wide browser window. Very "technical."

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

Here are a few of the latest test results:

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

Doctor:

Sunshine and I also discussed with Dr L:

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

Other Stuff:

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

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

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


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

Stable Is Good

Mayo Clinic Visit Thursday, June 25, 2009, end of Cycle 17:

According to Mayo, CC-4047 is now officially called pomalidomide, which is the generic name, like lenalidomide is for Revlimid. There is no trademark name yet, like "Revlimid," though "Actimid" was used for a while and then apparently discarded because of its similarity to Actifed. Don't want to mix THOSE up. I'll probably use pomalidomide and CC-4047 interchangeably here - we'll see.

I just got the results for Cycle 17 of the Mayo Clinic phase-II study of pomalidomide with dexamethasone. Bottom line: No change from 28 days ago. Dr KDS pronounced it "stable." M-Spike is 0.9 g/dL, unchanged, and IgG is 1010, virtually unchanged from 1030 mg/dL. Other results are mostly the same as well, except white blood count and neutrophils are up 40% and 60%, respectively, probably because I'm battling a cold.

Peripheral neuropathy (PN) is still the issue. Turns out that pomalidomide can cause PN just as Revlimid can. Mine is still mild, with some partially-dead spots and some tingling in the bottoms of my feet and one thumb. It doesn't seem to be getting worse very fast, but it is the fly in the chicken soup. I'm putting together another post on neuropathy (as if I know anything about it) and hope to publish it soon.

Related links:

	My Myeloma		A discussion of my myeloma, not very technical.
	My Treatment History		Not technical.
	My Test Charts		Graphic displays of several key test results over time.
	My Test Result Table		Best with a wide browser window. Very "technical."

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

Here are a few of the latest test results:

Test		Apr 02		Apr 30		May 28		Jun 25		Remarks
M-spike g/dL		0.9		0.8		0.9		0.9		Best tumor measure
IgG mg/dL		1060		1060		1030		1010		Variation is normal
L FLC mg/dL		3.04		2.55		2.60		2.63		Free light chains
Calcium mg/dL		9.5		9.6		10.0		9.6		Below 10.2 is best
Creat mg/dL		1.0		0.9		1.0		1.0		Kidney, lower is better
HGB g/dL		14.7		14.3		14.4		14.0		Hemoglobin, normal
RBC M/uL		4.26		4.01		4.06		3.93		Red cell count, low
WBC K/uL		4.2		3.6		4.0		5.6		White cells, normal

Doctor:

Sunshine and I also discussed with Dr KDS:

• PN from pomalidomide is probably not like the mostly-permanent PN from thalidomide. There is not a lot of experience with it yet, actually, but when a patient goes to a 21-day-on and 7-day-off regimen it often gets better during the seven days. Further, it may reach a mild level, as mine has, and then not progress further. Or it may continue to get worse.
• It may or may not reverse fully when the patient goes off pomalidomide altogether.
• Mayo uses the following classification system for PN (if I heard this right):
  • Grade 1 = Mild tingling or numbness or abnormal nerve-function tests (me).
  • Grade 2 = Some interference with function, but not disabling. E.g. little or no feeling in some fingers.
  • Grade 3 = Some disability, e.g. difficulty driving or operating other equipment.
  • Grade 4 = Major disability, e.g. wheelchair required.
• For most patients on pomalidomide who get PN, it remains at Grade 1. But the study is young.
• Running doesn't seem to make a difference for me. I ran three marathons during the 28-day cycle, and the neuropathy did not get worse after any of them. It may have gotten slightly better, though not much.
• I believe that warmth is a key to healing, and mentioned that I keep my feet warm as much as possible, using wool socks much of the time, even in bed. She agreed, and said that other patients have stated that their PN gets worse when their feet are cold. This may not cause irreversible PN, but perhaps it has a cumulative effect. No clogs for me.
• I asked if neuropathy can ever extend to the male sex organs. She replied, with some definiteness, that it can. On further discussion, however, it seems the effect is loss of function, and may not be from neuropathy per se but from the myeloma and its treatments. Perhaps I'll ask Dr L the same question next session. It's important.
• I asked about the most likely course of the myeloma with pomalidomide treatment. She responded that the study is only a year and a half old, so there isn't a lot of information yet, but it has begun to fail for some patients, just as thalidomide and Revlimid usually fail eventually. I joined the study in its first three months, so I'm fortunate that it's still stable for me.
• If Revlimid is a model for pomalidomide, a few patients may remain stable on it for years. Oh, I hope I'm one of the few. We shall see.
• I'm scheduled for a very warm marathon in a few weeks, so I asked if the myeloma or its treatments put me at any more risk than any other 68-year old. She thought not, but couldn't resist advising me to be careful. Heck, if I'm careful, I won't do it. And I might not.

Other Stuff:

Going off grapefruit for a month didn't seem to change the M-Spike, and the PN got a little worse even without it, so I'm going back to enjoying a grapefruit every day.

I have the longest-lasting cold I've had in years, almost three weeks now. Maybe I was just due for a major cold, or maybe my immune system is impaired by the DEX and three successive marathons. It's getting better though. Perhaps the grapefruit will help.

My regimen will not change in the next cycle. If the PN gets significantly worse, I will call the doctor.



At least four chicks hid in this robin's nest about five feet off the ground. Mama was yelling at me as I took this photo, threatening me with close fly-bys. The next day all of the chicks left the nest - I saw one of them go. Mama took them farther into the woods, yelling all the while.

Neuropathy is the Issue

Mayo Clinic Visit Thursday, May 28, 2009, end of Cycle 16:

Peripheral Neuropathy:

I posted about the possible beginnings of peripheral neuropathy (PN) eleven days ago. In those days I have taken most of the supplements listed on my Supplement Regimen page. The symptoms have not disappeared, however, though they have changed a little, and I am still not certain (beyond a reasonable doubt) that the feelings in my thumbs and feet are in fact PN from the CC-4047 medication.

There is normal sensation, or I should say no sensation, from the affected areas unless they touch something. One thumb always feels fine now, and the other, which was injured and its nerves cut many years ago, does tingle when touched, though the thumb pad is still sensitive to touch in the normal way as well. The soles of both feet also feel tingly when I walk on them, the same sort of tingle that one may feel when a limb is waking up after being "asleep" for lack of blood. Like the thumb, though, the skin of the soles of the feet is still normally sensitive to touch, and in fact the soles of the feet are still ticklish. None of this affects my running yet, nor is it really even very annoying. Yet.

Bottom line: if this is PN, it isn't very bad yet. I discussed all of this with Dr KDS at Mayo today. She advised me to keep them posted if the PN advances at all, because there are things that they can do. She talked about a few prescription medications, such as Neurontin, for managing the symptoms of PN. She did not, however, hold out any hope of a drug that would reverse the PN itself. She also mentioned that one patient had obtained good results from a machine of some sort, and will get me more information on that. When she does, if it's real, I'll post whatever I can about it.

Test Results:

I'm still on the trial of CC-4047 with dexamethasone (DEX), now taking CC-4047 2 mg every day and DEX 8 mg every Sunday night. In the past 28-day cycle IgG has gone from 1060 to 1030 mg/dL, Lambda free light chains from 2.55 to 2.60 mg/dL, and M-Spike from 0.8 to 0.9. Basically, this is no observable change, because each change is well within the measurement error of its test. Everything else is good too - calcium is up but well within range, ALT and AST are down, LDH is actually below its reference range at 130 U/L, WBC and ANC were down a bit last month but are now back up, it's all cool.

Related links:

	My Myeloma		A discussion of my myeloma, not very technical.
	My Treatment History		Not technical.
	My Test Charts		Graphic displays of several key test results over time.
	My Test Result Table		Best with a wide browser window. Very "technical."

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

Here are a few specific test results:

Test		Mar 04		Apr 02		Apr 30		May 28		Remarks
M-spike g/dL		0.9		0.9		0.8		0.9		Best tumor measure
IgG mg/dL		923		1060		1060		1030		Variation is normal
L FLC mg/dL		2.64		3.04		2.55		2.60		Free light chains
Calcium mg/dL		9.7		9.5		9.6		10.0		Below 10.2 is best
Creat mg/dL		1.0		1.0		0.9		1.0		Kidney, lower is better
HGB g/dL		13.7		14.7		14.3		14.4		Hemoglobin, normal
RBC M/uL		3.89		4.26		4.01		4.06		Red cell count, low
WBC K/uL		4.5		4.2		3.6		4.0		White cells, normal

Doctor:

Sunshine and I also discussed with Dr KDS:

• Mayo has seen some patients on CC-4047 develop peripheral neuropathy, as they might with thalidomide or Revlimid. There is not yet enough information to say how likely or how serious this side effect might be.
• Dr KDS is going to ask a dermatologist if there is anything to be done about thinning skin from the DEX.
• She confirmed that the DEX can cause wounds to heal more slowly. It seems to take a month now, instead of a week or two, for a little cut to heal.

Grapefruit:

Since about Christmas I've been eating a grapefruit every day. Grapefruit can increase the potency of some drugs by inhibiting a digestive process that would normally reduce the amount of drug that can go from the stomach into the blood. We have wondered if the grapefruit has played a part in the good M-Spike results in recent months by increasing the concentration of CC-4047 in my blood. Now, of course, we also wonder if it might not increase the severity of peripheral neuropathy symptoms if I'm getting more CC-4047 than expected. Therefore, for the next month, no grapefruit for me. Too bad - I've been looking forward to that daily refreshment.


Organic oatmeal, organic strawberries, organic grapes, mango, banana, organic walnuts, organic nonfat milk.

Stewart Asquith Died

Stewart Asquith was a professor at the University of Glasgow, Scotland, teaching and researching in the field of children's rights. And he was one of us, a myeloma survivor, until April 13, 2009, when he died in Edinburgh, from myeloma and its treatments. He blogged about those on Stewart, Myeloma, and Revlimid. An inspiring account of his life is posted on The Scotsman magazine. Quite a man.

In the last several years Stewart lived life to the max, taking vacations with his wife Elspeth, restoring classic bicycles and building his own recumbent, building a solar energy collector for his roof, renovating a bathroom, sailing on an ancient fishing vessel (pictured), on and on. All this time he went through a transplant, radiation treatments, surgeries, high-dose steroids, insulin, and more. He was an irrepressible soul who could be stopped in only one way.

I knew Stewart only from his blog and a short exchange of emails, but I have some Scot blood in me and feel an odd affinity toward this human dynamo. The world is a bit poorer at the loss of Stewart Asquith. We shall miss him and I do miss him.

Colloid Nodule of the Thyroid

The thyroid nodule (previous post) is a "colloid nodule," apparently quite benign. Doctor L says take another look with ultrasound in six months or a year, see if it's growing. Otherwise it's fine if it isn't causing problems breathing or swallowing.

It's not. This drama is over.

I did actually increase my iodine intake a couple of months ago, so maybe the treatment, if any is needed, is already underway.

Hearing Exam Leads to Thyroid Biopsy

My hearing isn't great. Down about 20 db in one ear, which is the bottom of "acceptable," and down much more in the other. So I visited an audiologist who recommended hearing aids, but who first scheduled me with an ear-nose-and-throat (ENT) specialist because she thought the big difference between the two ears could indicate a medical problem. I've had this difference for decades, but I went anyway.

Dr D, the specialist, did an examination of the ears and of course found nothing. Then, because he is an ENT, he looked in my nose and checked my throat. "Did you know about this nodule on your thyroid?," he asked. "News to me!," said I. He explained that he always does the cursory examination (he may not have used the word "cursory") without expecting to find anything, but this time he did. He said it was about a centimeter and a half in size, and recommended an ultrasound exam to check it further.

So today I expected an ultrasound examination of a nodule on the thyroid. But it turned out to be ultrasound imaging immediately followed by a fine-needle biopsy - both had been scheduled because the nodule was large. I believe that the biopsy is indicated for nodules exceeding 1 cm in size, and K, the technician, said this one was 2.6 cm in the largest dimension. As she pointed out, that's just over an inch. I'm a little surprised that I didn't know about it.

They removed my shirt so that it would not get Betadine on it, then swabbed the area abundantly with the Betadine, and finally applied a hypo of lidocaine. Almost immediately, Dr M, the radiologist, started taking samples of the nodule with very small gauge (#25) needles. I felt the first two needles, because the lidocaine hadn't quite taken effect, but the pain was really quite minor so I didn't complain. Anyway, complaining would mean talking, which is not a good thing with a needle in the neck. The nodule was close to the carotid artery, which they refer to as "Big Red" and avoid at all costs.

Dr M explained that the nodule was not homogeneous, and he was taking samples from different areas. I couldn't see the ultrasound screen, so I watched him. Once he had the needle in my neck his eyes never left the screen until he withdrew the needle again. Totally guided by the imaging. He took four samples, then stopped, explaining that they would send these to the pathologist who would tell him in a few minutes whether he had enough cells.

Meanwhile K asked about my myeloma and shared that she herself was a 2 1/2 year survivor of an allogenic umbilical-cord stem-cell transplant for leukemia, done at the University of Minnesota. Her doctors had said that her acute leukemia was not treatable with chemotherapy, but she had a 50/50 chance of survival with a stem cell transplant. She chose allogenic, despite the lifelong issue of graft-versus-host disease, because she believed that the result, if she survived the transplant, would more likely be a cure. So far so good! No trace of the leukemia. After two years they call it "remission," and she's there. She looks great. Perhaps 25 - 30 years old, I hope she has a long life ahead of her.

Back on the biopsy table, Dr M informed me that the pathologist was not satisfied with the sample. Thus more lidocaine, and this time a larger-bore biopsy needle, a #22. Apparently, needle sizes are like wire sizes, smaller numbers indicate larger needles. But I didn't feel any of these needles, and I think he used six more. He actually ran out and had to use one of the smaller ones.

We waited another 20 minutes and were told that they probably had enough. Dr M did mention that the pathologist had not seen cancer cells in his cursory examination of the samples, and that's a good sign. It can change, of course. In addition, there is always the chance that the pathologist will change his mind about the size of the sample, but if that happens we'll schedule another biopsy and this time they'll use a needle that can cut off a chunk. They don't like to do that on the neck, said Dr M, but he didn't explain why. Of course there's always the risk of hitting Big Red, and I suppose there's also a risk of hitting nerves or something. There's a lot of stuff crammed into the neck. Come to think of it, they made me sign something after the initial ultrasound and just before the biopsy. Perhaps it was the "informed consent" sheet, which of course I didn't read. Who reads a clipboard when they're already flat on the table?

It takes the pathologist 48 hours to crank out the final report, according to K. So I guess I won't know until Friday at best. In the meantime I'm not too worried. My thyroid function tests have been normal, and what the hell, I already have cancer.



Breakfast: Organic oatmeal with dried cranberries, blueberries, organic apple, organic pear, organic strawberries, orgnic walnuts, and organic nonfat milk. Not shown: Two organic eggs cooked in good organic oils.

Peripheral Neuropathy Treatment

It's here, perhaps. Maybe. I hope not. In the past few days I have felt a tingling sensation in the very tips of both thumbs, becoming much stronger when I touch the skin there. Nothing in the fingers yet. But in bed last night I noticed a numbness in the sole of my left foot; not so much the toes as the ball of the foot and nothing in the right foot yet.

That's all so far. Not enough to affirmatively declare that peripheral neuropathy (PN) is upon me, but enough to be a little scared. PN can be very painful and, when body parts go numb, rather disabling as well. It usually begins in the sensory nervous system, but can even progress to the motor nerves, resulting in partial paralysis. It is to be avoided if possible, and in my opinion it should be accepted as a necessary consequence of treatment only if all other avenues of treatment have been exhausted.

In Myeloma patients PN can be caused by at least three different things:

• Myeloma-specific chemo drugs such as thalidomide. I'm not taking thalidomide any more, but am taking CC-4047, a thalidomide derivative.
• Dexamethasone (DEX), which I am taking, and which (I believe) can cause symptoms of diabetes, one of which is PN.
• The myeloma itself, especially if protein or light-chain counts are high. Mine are not, as of two weeks ago.

I have another Mayo appointment in two weeks, when this subject will get some genuine medical attention. Furthermore, by that time, I will have a better idea whether or not I really do have PN.

In the meantime I'm trying to learn about it, and do whatever I can to mitigate the problem. Happily for me, the leaders of the Minneapolis Myeloma Support Group handed out a sheet of information on PN treatment at yesterday's monthly meeting.

Dana-Farber Cancer Institute:

That sheet, it turns out, was a printout of a web page which was transcribed from a paper handout at Dana-Farber. A myeloma survivor (Beth I think) has posted that handout HERE on the website MMSupport.net, which also has lots of other good information about myeloma and treatment. To summarize the sheet:

• Multi-B vitamins with B1, B6, B12, folic acid, and the other B-vitamins. Dosages: B6 100-200 mg, folic acid 1-2 mg.
• Vitamin E 400 IU daily.
• Fish oils with the omega-3 acids EPA and DHA.
• Evening primrose oil capsules.
• Flax seed oil.
• Amino acids. No further description.
• Alpha-lipoic acid (ALA) 200 mg twice daily, within 2 hours of a meal.
• Acetyl L-carnitime 500 mg twice daily, within 2 hours of a meal.

The same page gives advice for cramping, and also has a list of prescription drugs. I get the impression from members of our support group that the best of those drugs come with their own list of significant side effects. On the Dana-Farber.org website itself there is another Q & A page listing non-prescription alternative & nutritional self-treatment for PN. Summary:

• Vitamin B6, 50-100 mg/day.
• L-glutamine, 15 grams twice daily. Find a brand with no fillers.
• Alpha-lipoic acid 300 mg twice daily for up to four weeks, then consult a dietitian or doctor.
• Acupuncture.

MD Anderson Cancer Center:

MD Anderson is currently running a trial of oral alpha-lipoic acid versus a placebo for chemotherapy patients. Further, there is a PDF document on the MDAnderson.org website in which Dr Oh discusses diabetic PN. He suggests vitamin E, vitamin B, and L-acetyl-carnitine (same as acetyl-L-carnitine).

Mayo Clinic:

I didn't find much on the Mayo Clinic web site except for one reference to the use of vitamin B-12 to prevent PN. However, I know that Mayo did a study with intravenous ALA which showed marked improvement for patients with diabetic neuropathy. I just can't find that study right now.

Naturopathic Community:

This is a large community and I haven't done much of a search yet, even though naturopathy may be the best bet for controlling symptoms of PN. The first website I came across suggests B-12, ALA, and L-glutamine, with additional supplements if poor circulation is suspected.

International Myeloma Foundation (IMF):

I found one good video presentation from last December's Myeloma Workshop in Washington DC. Dr Paul Richardson, from Dana-Farber Cancer Institute described research on the cellular mechanisms that appear to cause neuropathy, and gave a quick list of possible complimentary treatments:

• Multi-B vitamin, folic acid, and vitamin E.
• Alpha-lipoic acid, L-carnitine, and L-glutamine.
• Magnesium and potassium.
• A daily multivitamin.
• Topical emollient creams containing cocoa butter with spearmint or menthol. He explained that the injured nerves are in a very thin layer just under the skin and these creams might be able to stimulate them.

Margaret's Corner:

In a recent post, Margaret's Corner, an important source of information regarding myeloma treatments, states that curcumin can help alleviate and possibly reverse peripheral neuropathy from chemotherapy.

Georgia Cancer Treatment Center:

Sunshine found this newsletter which suggests:

• Bromelain 200-400 mg three times daily
• L-glutamine 10 grams three times daily, and
• Vitamin B-complex. It also points out that bromelain is abundant in pineapple, and that it also treats other maladies such as bruising, arthritis, bunions, bursitis, tendonitis, carpal tunnel syndrome, gout, and sinusitis.

A Regimen:

It turns out that I am already taking many of the supplements that are recommended above, though some in lower quantity than recommended. I will modify my supplement regimen so that it includes:

• A daily multivitamin.
• A good multi-B (e.g. B-100), with added B6 if necessary to get 50 to 100 mg/day but not more than 100 mg.
• Vitamin B-12 sublingual 1000 mcg daily.
• Alpha-lipoic acid 300 mg twice daily.
• Acetyl-L-carnitine 500 mg twice daily.
• Vitamin E 400 to 800 IU daily, but not more than 800.
• L-glutamine 15 to 30 grams per day. Wow.
• Curcumin 500 mg daily.
• Flax seed oil 1000 mg per day. Maybe fish oil too, but I need a reliable source.
• Bromelain, amount undetermined just now.

If that doesn't solve the problem, then I'll consider:

• A visit to my naturopath for her advice. Might do that soon anyway.
• Altering the chemo to reduce symptoms, such as three weeks on and one week off instead of the current four-weeks-on regimen. Mayo Clinic will have something to say about this of course - I'm in a trial.
• Acupuncture.
• Evening primrose oil.
• Magnesium and potassium, more than I now get in food and the multivitamin.
• Topical creams with cocoa butter and spearmint or menthol.

Your Turn:

This is a huge subject, barely touched in this blog post. If you have suggestions or information, please do comment. Sometimes the comments are much more helpful than the post itself. Thanks,

Don

Even Better News, Probably

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

Results:

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

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

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

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

Related links:

	My Myeloma		A discussion of my myeloma, not very technical.
	My Treatment History		Not technical.
	My Test Charts		Graphic displays of several key test results over time.
	My Test Result Table		Best with a wide browser window. Very "technical."

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

Here are a few specific test results:

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

Doctor:

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

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

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

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

The end. For now.



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

Good News Again

Mayo Clinic Visit Wednesday, April 2, 2009, end of Cycle 14:

Results:

M-Spike is the same at 0.9 g/dL, IgG is up slightly from 923 to 1060 mg/dL, and Lambda light chains are also up a little from 2.64 to 3.04 mg/dL. I'm not concerned about IgG & light chains, because those numbers do seem to fluctuate a bit from one cycle to the next, as does the M-Spike for that matter. Taking the long view, these major markers have been level or down since June, 2008, and the trend is pretty much level. This is great, and Hooray for modern science!

CC-4047 is an experimental drug, an analog of Thalidomide and Revlimid but apparently more potent and with fewer side effects. In early March, a year ago, I started on the Mayo trial of CC-4047 with dexamethasone (DEX). By June, M-Spike dropped dramatically from 2.7 down to 1.1 g/dL. From there it dropped to 0.9, then up again to 1.1, and back down. Those variations may not have any meaning, and in fact they may be within the measurement error of the tests. Eventually the treatment will probably fail, as they tend to do, only time will tell. Meantime, there is life to be lived.

Related links:

	My Myeloma		A discussion of my myeloma, not very technical.
	My Treatment History		Not technical.
	My Test Charts		Graphic displays of several key test results over time.
	My Test Result Table		Best with a wide browser window. Very "technical."

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

Here are a few specific test results:

Test		Jan 08		Feb 05		Mar 04		Apr 02		Remarks
M-spike g/dL		1.1		1.0		0.9		0.9		Best tumor measure
IgG mg/dL		1350		1160		923		1060		Variation is normal
L FLC mg/dL		3.31		2.78		2.64		3.04		Free light chains
Calcium mg/dL		9.9		9.7		9.7		9.5		Below 10.2 is best
Creat mg/dL		1.1		1.0		1.0		1.0		Kidney, lower is better
HGB g/dL		15.3		14.9		13.7		14.7		Hemoglobin, normal
RBC M/uL		4.36		4.28		3.89		4.26		Red cell count, low
WBC K/uL		4.6		5.0		4.5		4.2		White cells, normal

Doctor:

I met again with the nurse-practitioner Dr KDS, but our discussions were short this time. She did give me a prescription for physical therapy designed to strenthen the bones that were known to be threatened by myeloma lesions a year ago. I have previously discussed this with a personal trainer and had one session with her, but will now make an appointment with a physical therapist. Perhaps I'll learn a set of exercises that I will actually do on a regular basis.



Hormone- and antibiotic-free lamb, organic broccoli with shredded parmesan cheese, onion, Rose's lime jelly.

Better Than Plateau

Mayo Clinic Visit Wednesday, March 4, 2009, end of Cycle 13:

Great News!

A month ago, at the end of Cycle 12, M-Spike went down from 1.1 g/dL to 1.0 This month it went down again, to 0.9 g/dL, for a total drop over two cycles of 18%. Further, in that two-month period, IgG dropped from 1350 to 923, a total drop of 32%and the lowest IgG ever, suggesting that the M-Spike drop is not only genuine but perhaps even understated. Celebration is in order.

CC-4047 is an experimental drug by Celgene, an analog of Thalidomide and Revlimid but hopefully more potent and with fewer side effects. Exactly a year ago I started on the Mayo trial of the drug combination CC-4047 with dexamethasone (DEX). M-Spike dropped dramatically from 2.7 g/dL down to a low of 0.9 g/dL last October, the best value in more than four years, then climbed back up to 1.1. Now in two 28-day cycles it has retreated again to 0.9.

So after it went up again, why did it go back down? What is different? Is it something that I did? If so, what can I do, with the help of Sunshine and Sweet Pea, to keep M-Spike going right on down? Here are a few possibilities:

• In Cycle 13 I had a perfect record of taking my supplements, twice a day. Never missed once. Maybe they actually do help? The only problem with this theory is that I wasn't nearly as consistent in the previous cycle, number 12, when M-Spike also went down.
• For this Cycle 13, I added three new items to the list of supplements:
  • Genistein, a soy isoflavone which is reputed to have some anti-myeloma benefits, see for example Margaret's Corner;
  • Spectra 303, a thyroid supplement; and
  • Thyroid Energy by Now, another thyroid supplement.
  • I'm thinking that if anything helped M-Spike it was the genistein, though the thyroid marker TSH did improve too and who knows if a healthier thyroid could benefit M-Spike. Neither would explain why Cycle 12 also showed improvement.
• During Cycle 13 I ate more grapefruit than I had been eating. Grapefruit is known to enhance the effect of some drugs by interfering with the normal action of digestive enzymes. Usually I ate the grapefruit in the evening, an hour or two before taking the CC-4047, and it's certainly possible that this resulted in more CC-4047 in the blood. But again, it doesn't explain why Cycle 12 also showed improvement.
• In the past two months Sunshine has been cooking with more coconut oil than she ever used before. Every morning I have two eggs cooked in a little pure, organic, non-hydrogenated coconut oil, for example. Popcorn, when we have it, is popped in coconut oil, and other foods are cooked in it as well. Coconut oil is well regarded as a traditional treatment for shingles and other forms of the herpes virus, but I haven't heard of it as a treatment for myeloma. Nevertheless it is a change in our lifestyle that occurred at about the beginning of Cycle 12.
• According to Dr L, the side effects of DEX tend to increase as time goes by, which is one reason why a doctor may reduce the dosage. My dosage started at 40 mg once weekly and was gradually reduced, ending up at 8 mg once weekly last November, for Cycle 10, where it has remained. Question: If the side effects of DEX increase with time, does the efficacy increase as well? Dr KDS didn't know, so I will ask Dr L when I next see her.
• For each of the Mayo visits, we travel from the Minneapolis / St Paul area to Rochester, MN. Usually we get up very early and drive about 90 minutes in the dark for a 6:30 am blood draw. I'm not supposed to have any food or drink, except a little water, for 12 hours before the blood draw. However, for the last two visits, and only those two, with the permission of Dr L, I have enjoyed a 16-ounce thermos of black coffee on that drive. Could it be that the coffee is somehow interfering with the tests, and the cancer markers haven't really changed? I don't think so, because M-Spike and IgG have dropped for two cycles in a row, but it's a thought. I'll enjoy my thermos again next month and see what happens.

Other Good News:

Two days before the Mayo appointment I injured my back slightly while doing pushups I think. Or pullups. That's not the good news. Dr KDS and Dr L agreed that I should have another x-ray bone survey, to include that area of the back but also all of the large bones in the body, because:

• A year ago, lesions were found in three bones including a vertebra;
• I'd had no x-rays or bone scans since;
• Myeloma always poses a risk for bone lesions and actual broken bones; and
• I had a symptom that could indicate a problem in a vertebra.

The good news is that the bone survey was negative. No lucent lesions. The injury is minor - I'm sure it will be gone soon.

Related links:

	My Myeloma		A discussion of my myeloma, not very technical.
	My Treatment History		Not technical.
	My Test Charts		Graphic displays of several key test results over time.
	My Test Result Table		Best with a wide browser window. Very "technical."

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

Here are a few specific test results:

Test		Dec 11		Jan 08		Feb 05		Mar 04		Remarks
M-spike g/dL		1.0		1.1		1.0		0.9		Best tumor measure
IgG mg/dL		1260		1350		1160		923		Variation is normal
L FLC mg/dL		4.03		3.31		2.78		2.64		Free light chains
Calcium mg/dL		10.1		9.9		9.7		9.7		Below 10.2 is best
Creat mg/dL		1.0		1.1		1.0		1.0		Kidney, lower is better
HGB g/dL		14.6		15.3		14.9		13.7		Hemoglobin, normal
RBC M/uL		4.20		4.36		4.28		3.89		Red cell count, low
WBC K/uL		5.3		4.6		5.0		4.5		White cells, normal

Doctor:

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

• My doctors have started ordering the test for LDH at every visit now. My understanding of Dr KDS' explanation is that LDH is a non-specific marker for cell damage and is used as a screen for a variety of problems that might not otherwise be picked up. Mine was normal.
• My M-Spike has declined on the test protocol from 2.7 g/dL to 0.9 g/dL. Tha's called a "partial response (PR)." To get to the next level, "very good partial response (VGPR)," it would have to get down to less than 10% of the initial value, or 0.2 g/dL. Well, I'm going to define my own level, called "good response (GR)," which is less than 40% of the initial value. I'm there.
• Last month my TSH, a thyroid marker, was 5.4, slightly above the reference range. Since then I have been taking some over-the-counter thyroid supplements, and this time TSH was 3.5, somewhat better. I'll keep taking them.
• Anakinra (Kineret) is an existing FDA-approved drug which has shown an ability to inhibit the growth of myeloma. It is currently in an ongoing Phase II trial for patients with smoldering myeloma.
• There are ongoing studies of three- and four-drug combinations which seem to have spectacular results, similar to the results from a stem cell transplant, sometimes even better. But the question is, what happens when the myeloma comes back, and we've already shot the whole quiver of arrows at it? Dr KDS says that there is no clear answer yet, and the issue is hotly debated, but she articulated three possibilities:
  • Do it again, the same combination of drugs or another combination. Maybe it will work; or
  • Try the individual drugs, one or two at a time, likely in greater doses than they were used when in combination; or
  • Perhaps by then a new drug or combination will be available. Time and research are our friends.
• IgG measures all immunoglobulin G, M-Spike measures the monoclonal (bad) part of that, and the difference is good immunoglobulins which can fight infection. For example, the most recent results show IgG = 923 mg/dL, M-Spike = 900 mg/dL (same as 0.9 g/dL), so the difference is 23 mg/dL good stuff. Before I went to Mayo, my tests were done at Minnesota Oncology Hematology PA (MOHPA).
  • For 15 sets of tests at MOHPA, the difference between IgG and M-Spike (good stuff) averaged 690 mg/dL.
  • For the next set of 14 tests, all at Mayo, the difference averaged 212 mg/dL.
  Why such a big discrepancy in "good stuff" between MOHPA and MAYO? I'm pretty sure that it is a discrepancy in laboratories and not an artifact of the CC-4047 treatment, because the "good stuff" at Mayo was only 260 at my very first Mayo visit, before any CC-4047. Mayo reads M-Spike higher than MOHPA does. Of course I have no idea which lab is correct. Dr KDS agreed that such a discrepancy could exist, though it seems like rather a large difference.
• I asked her if there might be a way to kill all memory B cells, or even all B cells, on the assumption that these contain the "stem cells" that cause myeloma to return. Sort of a plasma-cell reboot, but less than a complete stem cell transplant. A new experimental drug called belimumab is a possibility here, but she hadn't heard of it and the whole concept is well over my head.
• We re-discussed last month's ECG report of "ventricular escape beat with SVPC." On the internet it looks kind of scary. But she looked it up on a Mayo data base and found that it is not uncommon in people with otherwise low heart rates. That's me. I won't worry about it - there will be another ECG in a couple of months and I'll arrange to be less-well caffeinated for it.

Leftovers for dinner: Free-range no-hormone no-antibiotic bison, organic chicken, organic lettuce, organic squash with organic salsa, kiwi, avocado.