Ashwagandha

Mayo Clinic Visit Thursday, October 15, 2009, end of Cycle 21

Blood test results: M-Spike remained the same at 0.9 g/dL, IgG dropped slightly from 1070 to 1020 mg/dL, and Lambda light chains increased slightly from 2.54 to 2.68 mg/dL. These results don't really show a trend one way or another. "Stable" is the word.

Except: calcium is up from 9.9 to 10.3 mg/dL, above the reference range, and we don't know why. High calcium in the blood can indicate that bone damage is occurring. It went that high once before, though, and dropped right back down a month later. Hopefully next month's value will be back within range. I will skip my calcium supplements for a day or two before next month's tests, in case that makes a difference.

Of course I'm still concerned about the longer term, when the Phase II trial of pomalidomide with dexamethasone (DEX) eventually fails for me and a different, less-agreeable treatment will be required. Two months ago we reduced my DEX dosage from 8 to 4 mg once weekly - perhaps that was a mistake. Unfortunately, though, under the terms of the study, DEX can only be decreased and never increased, so if I want to continue taking pomalidomide I will continue taking 4 mg or less of DEX. Pomalidomide is good stuff - I DO want to continue on it for as long as possible.

Ashwagandha:

The study doesn't say much about supplements. Margaret has recently blogged about ashwagandha, also called "withania somnifera," a shrub from India and nearby countries. The root is widely used as a medication in that region, and in alternative medicine in other parts of the world. Margaret took ashwagandha herself, and saw her IgG drop 25% and M-Spike drop 10% over a period of several months. She has written several posts about ashwagandha, all worth reading. Because of her apparent success, I have begun taking ashwagandha in a modest dosage. I ordered the patented Sensoril brand, packaged in capsules by Jarrow. I take one 225-mg capsule daily, the amount suggested on the bottle, at bedtime because it also induces a restful sleep.

In addition, I have added 100 mg of ordinary vitamin B6 to my regimen as an additional treatment for the mild neuropathy that is induced by the pomalidomide, and doubled the supplements for thyroid. The entire daily supplement regimen is available from a link in the right-hand panel.

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 wiiide browser window. Very "technical."

Some recent test results:

Test		Jul 23		Aug 20		Sep 17		Oct 15		Remarks
M-spike g/dL		0.8		0.8		0.9		0.9		Best tumor measure
IgG mg/dL		1010		979		1070		1020		Variation is normal
L FLC mg/dL		1.95		2.07		2.54		2.68		L Free light chains
Calcium mg/dL		9.6		9.7		10.0		10.3		Below 10.2 is best
Creat mg/dL		1.0		1.1		1.0		1.0		Kidney, lower is better
HGB g/dL		14.0		14.8		14.5		15.0		Hemoglobin, normal
RBC M/uL		3.93		4.13		4.01		4.21		Red cell count, low
WBC K/uL		5.6		3.9		3.7		4.2		White cells, normal

Discussion with Dr. KDS:

Don:

• Peripheral neuropathy from the pomalidomide has not changed much in this cycle. Still some numbness in the bottoms of my feet and in my thumbs. There is also a little tingling but no pain. The "tickle" sensation in my feet, sensitivity to light touch, might actually have improved somewhat, but the sensitivity to pressure has definitely not improved.
• Many myelomiacs get shingles, because of compromised immune systems. I'd rather not, thank you. So I asked Dr. KDS about the shingles vaccine:
  • It is a live-virus vaccine, and not recommended for people who are immunocompromised; but
  • I don't get sick much - no empirical evidence that my immune system actually IS compromised, but
  • She pointed out that IgA, IgG, and IgM are important parts of the immune system, and in my case both IgA & IgM are at very low levels;
  • Further, if we subtract the monoclonal (worthless) M-Spike component of IgG from the total IgG, the remaining "good" IgG is also well below normal; so
  • I guess I really do have a compromised immune system. Not enough immunoglobulin goblins. **
  • Dr. KDS knows of a case where an immuno-compromised patient actually DID get shingles from the vaccine. Ouch.
  • I suggested using the killed-virus chicken-pox vaccine off-label as a shingles vaccine, but don't recall her response. It wasn't positive.

KDS on flu vaccines for myelomiacs, same advice as last month:

• Get the 2009 H1N1 vaccine as soon as it is available to me. I am not in one of the highest-priority groups.
• Get the seasonal flu vaccine when it is available to me.

Don's thoughts on flu vaccines for myelomiacs (Dr. KDS is not implicated in the following content :-)):

• Seasonal Vaccine:
  • So far, the CDC is not seeing much seasonal flu. In their latest report, almost all of the viruse samples submitted to them in the week Oct 4-10 were found to be 2009 H1N1.
  • Therefore, we need not rush to get the seasonal vaccine, because there isn't much risk of encountering the virus yet. However:
    • The seasonal flu is at least as deadly as 2009 H1N1;
    • Tens of thousands of people DIE from it every year in the USA alone; and
    • Those of us with compromised immune systems are especially at risk; so
    • We definitely should get it well before the seasonal flu peak arrives. The past three seasons saw minor peaks around Christmas with the major peak in February.
• 2009 H1N1 Vaccine:
  • Availability may be spotty because of the priority system, which is applied differently in different places.
  • Get it as soon as it is available, because the VIRUS IS AMONG US! Rampant in some schools.
  • In the meantime, we might be well advised to stay away from groups of people, especially young people.
  • Some doctors say that the vaccine might not do much good anyway, because compromised immune systems can't muster a proper response, but
  • To me that sounds like an excuse and not a reason. If it "might not" do much good then it also "might" do some good, and that's enough for me.
  • That same excuse could be used for skipping the seasonal flu vaccine, and no doctor suggests that.
  • I have not heard of any downside of the H1N1 vaccine, other than the rare problems that can occur with any flu vaccine. If you have heard otherwise, please comment.

We three have some airplane flights coming up, and have even talked about wearing medical masks in that wheezy, sneezy, huddled mass of humanity. We'll see!

** Halloween humor

---

Salad as dinner.

Mayo Clinic Visit Thursday, September 17, 2009, end of Cycle 20

Every treatment for myeloma seems to fail eventually. Somehow the cancer evolves, and the M-spike starts to climb again. On this Phase II trial of pomalidomide with dexamethasone (DEX), M-spike is checked every 28 days. It had been stable or dropping in recent months, but this time it went up, from 0.8 to 0.9 g/dL. Furthermore, this appears to be a real change, because IgG also went up 9%, from 979 to 1070 mg/dL, the highest level since February. Lambda light chains increased too.

But the news isn't quite as scary as it sounds. First, a small increase in M-spike doesn't necessarily mean that the bottom has been reached - we have seen M-spike go up before and then come back down again. It's happened twice already this year. Second, the increase in IgG could be due to an immune-system response to some sub-clinical invader in my body. In fact this seems fairly likely, because my white count and neutrophils are up slightly from last month and eosinophils are through the roof. Something may be going on besides myeloma at the moment.

Bottom lines:

• I'll have to wait another month to see if M-spike is really turning upward again. I sure hope not - it would be wonderful to get a nice, long ride from pomalidomide, because the drug regimen is relatively easy to take. When it fails, I will no doubt need to switch to something with more side effects.
• This uptick in M-spike coincides exactly with a reduction in the DEX dosage from 8 mg to 4 mg once weekly. So my hopes of going off DEX in the upcoming cycle are null and void. In another 28 days we'll see.

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."

Some recent test results:

Test		Jun 25		Jul 23		Aug 20		Sep 17		Remarks
M-spike g/dL		0.9		0.8		0.8		0.9		Best tumor measure
IgG mg/dL		1010		1010		979		1070		Variation is normal
L FLC mg/dL		2.63		1.95		2.07		2.54		L Free light chains
Calcium mg/dL		9.6		9.7		10.0		9.9		Below 10.2 is best
Creat mg/dL		1.0		1.1		1.0		1.1		Kidney, lower is better
HGB g/dL		14.0		14.8		14.5		14.7		Hemoglobin, normal
RBC M/uL		3.93		4.13		4.01		4.08		Red cell count, low
WBC K/uL		5.6		3.9		3.7		4.1		White cells, normal

Discussion with Dr. KDS:

Don:

• Peripheral neuropathy from the pomalidomide might be a little worse. It measures the same, but may have increased in areas that I don't measure, such as the backs of my hands. It does not interfere in my lifestyle in any way. There is no sensation from it unless I'm stepping on my feet.
• There are no red bruise marks on my arms this time. Did the reduction to 4 mg DEX make my skin less sensitive to bruising?
• I'm probably not getting slower (running) any more - maybe a little faster, though that may be psychological.

KDS:

• Wants me to stay on the current 4 mg dosage of DEX for at least 2 cycles before discontinuing it. So at least one more.
• DEX can cause steroid-induced myopathy, but my modest reduction in muscle capacity does not qualify.
• Muscle wasting is probably reversible if DEX can ever be discontinued.
• There is some risk of avascular necrosis of the hip with long-term DEX usage, but she can't quantify it. Balance that unknown risk against the other unknown risk of dying sooner from myeloma. Yikes.

KDS on Flu Vaccine:

• Get the 2009 H1N1 vaccine when it is available to people in my risk stratum. Immuno-compromised old people are at the top of the "second tier."
• According to the CDC (I looked this up): First tier is pregnant women, then health care workers, then all people age 6 months to 24 years, then people age 25-64 who have health conditions which put them at extra risk. Those first-tier groups comprise about half the population!
• Those of us who are over 64 probably have some immunity already, so we go later, even if we are immuno-compromised.
• Get the seasonal flu vaccine no later than November, but maybe sooner if the "regular" flu season (ignoring 2009 H1N1) seems to be peaking early.
• The two vaccines can be taken on the same day.
• Here is a link to the CDC 2009 H1N1 Flu Page.
• Here is a link to the CDC Weekly Update on Seasonal Flu.

My own flu shot advice: Keep in mind that I am an engineer and not a doctor, so feel free to IGNORE THIS ADVICE: Be sure to get the seasonal flu shot, because it may be at least as important as the 2009 H1N1 shot. Tens of thousands of people die every year from seasonal flu, especially immuno-compromised people.

MMRF Race for Research 5k Run/Walk

Sunday, September 27, 2009, start time 9:00 am, come early.

The Multiple Myeloma Research Foundation (MMRF) holds an annual 5k run/walk at Lake Phalen Park in St Paul, Minnesota. It is a fun event which helps raise money for myeloma research, $120 million and counting.

Click HERE and then click "Register as an Individual" or "Register as a Family" on the left-hand panel.

Enjoy!

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.