Celebrating Four Years on Pomalidomide

This month is the fourth anniversary of my start in the pomalidomide study, and today is the end of the 52nd 28-day cycle. The news is pretty good.

Bones: Because calcium has been a little high lately, suggesting a possible bone issue, we did a skeletal survey and a bone density scan today. Quote from bone survey report: “Generalized spotty osteopenia without localized lytic lesions. No change since 3/4/09.” That works for me! Although x-ray doesn’t always show myeloma lesions, this report means that I probably do not have a bone on the verge of breaking. Furthermore, the bone density measurements were the same as two years ago, within the measurement accuracy of the DEXA system, so my overall bone health is good. That’s all good news. I do not take Fosamax, but I do take Vitamin D3 and Vitamin K2 (not Vitamin K).

Cancer markers: IgG dropped significantly, from 1280 to 1100 mg/dL, and M-spike obediently followed, dropping from 1.1 to 1.0 g/dL, where it hasn’t been since last September. That’s very nice. I doubt it’s a trend, but wouldn’t that be great? Lambda light chains are up, from 1.99 to 2.80 mg/dL, but kappa chains are up too and anyway I’m not sure that light chains are an important marker in my particular myeloma.

Other: Calcium is still high, at 10.3 mg/dL, but that could be a lingering effect from the marathon last Sunday. Some dehydration happens in a marathon, like it or not, and recovery takes a while. Liver markers are at the top of the reference range, too, but we might attribute that to the marathon as well. Neither is an issue right now. Both the red blood cell count and the white cell count are a bit lower than usual though, and I don’t know what to think of that. We’ll see what they do next month. Actual counts are shown below.

Doctor L:
I pointed to a rash on my leg, suggesting that it might be from the Bactrim DS antibiotic that I’ve been taking, or perhaps it could be from shingles. She said that it could be the Bactrim, which has a reputation for causing rashes, but that it wasn’t shingles. I was taking the Bactrim to deal with an infection in my jaw, a bad tooth, but the tooth is getting better after some dental work and I stopped the Bactrim a few days ago. The rash looks a little better already, but not enough yet to know for sure that Bactrim was the cause.
I asked again how long I can remain on the pomalidomide study, and she confirmed that I can probably take it until my myeloma no longer responds to it. She knows of one myemomiac who was in the first Revlimid study and is still on it after eight years.
We discussed my sports hernia (abdominal wall strain, athletic pubalgia) and she actually suggested acupuncture. Some of her patients have found great relief from neuropathy through acupuncture, when all else failed. This is about healing, not pain relief, but who knows? I’m actively seeking an acupuncturist – willing to try anything to avoid surgery.

Most-Recent Test Results:


Boring Mayo Clinic Visit

Never. Even though nothing changed this month, I never feel complacent. Forty cycles on the pomalidomide (CC-4047) study are complete, and nothing changed this month, so I could have felt complacent. But I dread the inevitable day that the myeloma figures out how sidestep the pomalidomide – life will change when that happens, maybe not for the worse, there are other treatments, but life will change. Also, I suppose I don’t want myeloma’s reemergence to be a shock when it happens, and it can’t be a shock if I’m always fully aware of the possibility.

Dr RH:

This visit was as routine as any we have. We don’t know Dr RH very well, so after the medical stuff was done we chatted a bit, learned a little about each other. We like him – he’ll do well for us, replacing Dr KDS, who really is gone now and whom we will miss. We also saw Dr L for a few minutes, a treat.

The Evolution of a Myeloma Recurrence:

With few exceptions, myeloma figures out how to defeat every medication. Maybe now, maybe later, even much later, but it does. I am definitely not a doctor or a biologist or anything of the sort, but I nevertheless have a simpleminded theory about that:
Some carcinogen alters the DNA of a plasma cell, or maybe a memory B cell, in such a way that the cell forgets how to die when it ought to, and perhaps with other DNA problems too, but without alerting the body’s normal defenses. There may actually be MANY alterations of the cells, but most are detected and squashed, or cause that cell to die, or fail for some other reason, until one suceeds. This is how cancer starts, including myeloma.
That cell also has the ability to replicate itself or to produce other myeloma cells. I think there is still some dispute about how this happens – is the original progenitor a stem-like cell or an actual plasma cell? Anyway it multiplies.
A medicine (Revlimid, Velcade, melphalan, whatever) is able to kill the myeloma cells or reduce their rate of replication. The tumor burden goes down – yay!
But additional carcinogens, or the same carcinogenic influences, continue to make random alterations to the DNA of the remaining myeloma cells, which mat not be very stable to begin with. Most of these changes don’t make any difference, or they may even cause the cell to die, but eventually one of those changes, by chance, makes a cell resistant to the current medications.
Now, that twice-altered cell is the strongest of the myeloma cells and is able to proliferate faster than the old ones in the face of the medication. It multiplies, replaces the old myeloma cells, and the drug is no good any more.
Anyway that’s my theory and I’m sticking to it. If it were true, what would be the implications? Most important, REMOVE AS MANY CARCINOGENIC INFLUENCES AS POSSIBLE! We should do exactly the same things that we should be doing to PREVENT cancer in the first place:
Eat the healthiest foods, organic where that is important, to reduce the intake of pesticides.
Maintain a healthy weight – studies show that overweight alone is a carcinogen.
Exercise several times per week, to keep the body’s immune system and other systems healthy.
Don’t smoke, duh.
Stay away or protect ourselves from other common carcinogens such as gasoline, solvents, formaldehide in new construction or furniture, herbicides, pesticides, plus food additives such as nitrites and BHA/BHT.
I wrote more about cancer prevention in a previous post. It’s how to live.

Gluten-free oatmeal with organic yogurt, organic strawberries, organic pear, pineapple, kiwi, walnuts. Might be some organic blueberries under there too.


IgG and M-spike both dropped 17% in the last 28 days, more than offsetting the increase of last month, and returning to levels that are typical of the stable plateau of the last two and a half years or so. Still on the pomalidomide (CC-4047) trial, I’m a happy camper. Please enjoy a beer for me.

Why did it go down? The better question is, why did it go up last month? Maybe because at that time I was recovering from two different virus infections and probably a related bacterial infection, and also had quite recently received my flu shot, the Magnum Jolt version for seniors.

Interesting: If it’s true that IgG went up last month because of challenges to the immune system, then M-spike must have gone up for the same reason. Indeed, it’s possible that the entire increase in IgG came from the M-spike component of IgG. Why would M-spike respond to challenges from intruding organisms? The answer is way above my pay grade.

Neutrophils: Again I had the CBC done at the local clinic on the afternoon before the visit to Mayo, because my neutrophil count seems to be much higher in the afternoon than in the morning. Also, just before the blood draw, I run up four flights of stairs and do some pushups, trying to squeeze out a little adrenaline, which is thought to tease the neutrophils out of their hiding places. Absolute neutrophil count was 2.5 K/uL, well into the normal range and WAY above the cutoff threshold of 1.0. Yay.

Discussed with Dr KDS:
We agreed that I’m still stable on pomalidomide as a single agent. I won’t change anything.

A recent study has (finally!) shown that Zometa, one of the bone-building bisphosphonates, actually has a modest anti-myeloma benefit in addition to its bone-strengthening ability, improving both the average time to disease progression and the overall survival of study participants. Doctors are still getting their heads around this, but one possibility for some patients is Zometa once every month! Zometa can have serious side effects, though, including unusual and disabling fractures, and osteonecrosis of the jaw, so it is not an automatic prescription.

Two more studies, evaluating the use of Revlimid as maintenance therapy after stem cell transplant, showed that patients in the Revlimid arm of the study developed more secondary cancers than those in the placebo arm. Numbers were small, however, with less than 3% in both arms together developing a secondary cancer. Both studies, by the way, also demonstrated that maintenance therapy improved time to disease progression, but neither showed a clear improvement in overall survival.

Recent evidence suggests that my immune system may not be as strong as I have though it was. Three different virus infections were defeated only very slowly. Dr KDS is concerned that I could contract an opportunistic fungal infection called pneumocystis pneumonia, common with AIDS patients who may also have compromised immune systems. She prescribed a sulfa-based antibiotic called trimethoprim-sulphamethoxazole, brand name Bactrim, to be taken every day as a prophylactic treatment to prevent that pneumonia and any number of other bacterial and fungal infections.

There is a slim possibility of myelosuppression, however, which means low red and white blood counts; HELLO I already have that from the pomalidomide. It can also, rarely, cause liver or kidney failure, a potentially fatal complication. I hadn’t heard of Bactrim prophylaxis before, but Dr KDS said that it has been used without incident by other patients in my situation. She knows that I will study this stuff and do my best to balance the risk of pneumonia against the risk of side effects, before making a decision. She also gave me an order for liver and kidney function tests which I can have done after trying the antibiotic for a week or two. Perhaps I’ll talk to Dr B, my new PCP, about this.

Some Current Test Results:


Pomalidomide Rocks

At least for me it does. I’ve been on a study of Celgene’s pomalidomide (CC-4047) for 34 complete cycles now, and it has kept my myeloma stable for all of that time. At first I took it with “low-dose” dexamethasone (DEX), and after two years graduated to pomalidomide alone (actually with aspirin and acyclovir). M-spike and IgG dropped quickly in the first three months, and for more than two years IgG has been about a third of the starting value with M-spike tracking appropriately.

“Pomalidomide” is the drug’s generic name, while CC-4047 is a code name for the same drug in drug trials. Someday it may have the brand name “Actimid,” when it is available for sale. I hope that happens soon, because it’s good stuff and people are dying right and left.

I think this is publishable news: Mayo Clinic will soon open a new arm of the CC-4047 study. Entrance criteria were not established when I was there on Oct 20, but one objective is to make it available to more people who need it, so I suspect the entrance criteria will be fairly wide.

Cycle 34 Test Results:

At the end of the previous cycle, my IgG was down a little and M-spike was up. This time, IgG is up a little and M-Spike is back down. I suppose that’s the definition of “stable” for us myelomiacs, because these tests do have some error tolerance and our blood varies too. Other markers, like lambda light chains, calcium, and some of the CBC blood counts are virtually unchanged. No problem – a boring visit -:) Let’s have lots more of those!

Neutrophils were a bit of a surprise, though. The study requires at least 1000 of those tiny critters per microliter of blood, or else the pomalidomide has to be stopped until neutrophils climb above that mark again. Sometimes mine have been below 1000, so we’ve chosen to switch to 1:00 pm blood draws, taken the day before the Mayo visit, because my neutrophil counts are reliably higher in the afternoon. This time, though, the afternoon count was 2100, actually well into the “normal” range, and another count the next morning at Mayo also showed 2100. Why? Maybe because I have a miserable cold, and those little buggers are an essential part of the battle that’s going on. They have been recruited and they are rallying!

Mayo, Dr KDS:
I have a pain in the index finger of the left hand – can’t quite localize it though. Could it be myeloma? Answer: Probably not – myeloma usually attacks larger targets with more marrow.
I changed my diet this month to reduce the amount of simple sugar. This means no cookies or other sweets, and less fruit. Since the myeloma didn’t change much, I believe this experiment was a failure and will go back to the higher-fruit diet.
I also had more constipation than usual this month. It’s a known side effect of pomalidomide, but we agreed that the increase was probably due to the reduction of fruit in the diet.
An afternoon blood draw produces a neutrophil count about 50% higher than does a morning draw, for me. Dr KDS tried that with another patient, though, and it didn’t work. We’re all different.

Some Current Test Results:


US 52 Was Under Water

We three drive down US 52 from the east side of St Paul to Rochester once every 28 days for my checkup at Mayo Clinic. It’s the shortest, fastest route. Usually we get up at 3:50 am, take an hour to shower and get ready, then 90 uneventful minutes later I’m in line for my 6:30 am blood draw. We knew that Thursday would be different, because of the heavy rain, but we didn’t know how different. A check of MNDOT’s Traffic Conditions Website showed that US 52 was closed, so we went another way – no fun driving in “driving” rain, but US 61 & 63 were open and it took us only about a half hour longer. Heading back, that MNDOT web site said that US 52 was open again, so we started out that way. Just a few miles south of Pine Island, though, we found water rushing across the four-lane highway. Some vehicles were crossing it, but some were not and we turned around. Police were conspicuously absent. At 5 pm the local news said that US 52 was closed right where we encountered the water.

We later discovered that the city of Pine Island had in fact become an island, though it normally is not.

IgG versus M-Spike:

IgG is a measure of ALL Immunoglobulin G proteins, good and bad, where M-Spike is a measure of just those Immunoglobulin G proteins that are monoclonal, the bad ones, all exactly the same. Medically, M-Spike can never be higher than IgG. Thursday my IgG was 1070 mg/dL, but M-Spike was 1200 mg/dL (1.2 g/dL). Not possible. I hate that! I was feeling pretty good about another “stable” result until that M-Spike came bombing in.

I asked Dr KDS about this impossibility – which number is most likely to be wrong? She wasn’t sure, but assured me (paraphrasing here) that she has seen this before, because both tests have an error tolerance, but that she was NOT worried. Further, I’m still stable and, as always, let’s see what next month brings.

Sigh. I fret about this stuff, and was hoping for a fret-free 28 days. I’ve been on the pomalidomide (CC-4047) study for 33 complete cycles now, and it has done a fine job of keeping me stable. Nevertheless, I know that the ride will end some day and I will need to take a different course of drugs that may have much worse side effects. So I’m always wondering if that time is near and hoping that it isn’t.

For now, though, I’m going to try to convince myself that the M-Spike number is wrong. There is nothing in the other cancer markers to suggest an increase in tumor burden. Calcium is fine, kidneys are fine, liver is fine, and light chains are not much changed. In fact, an IgG measurement of 1070 mg/dL is actually a decrease of 3% from August and 8% from July. We’ll go with that.


Mayo Clinic will soon start a trial of this brand-new drug. Carfilzomib is a proteasome inhibitor, like Velcade, at least as effective but much less likely to cause painful neuropathy. Furthermore, it can be effective in patients for whom Velcade has failed. I blogged about it here. I’m not sure what it will take to qualify for the trial, but if you go to Mayo you might ask about it.


I am not a medical doctor, so you shouldn’t believe anything that I say. Nevertheless: If you are offered twice-weekly Velcade as a treatment, just say NO. Twice-weekly infusion is still the official, approved regimen, even though several studies have shown that once-weekly infusion is much less likely to cause painful neuropathy in most patients. In addition, there can be a threshhold effect: if a patient on twice-weekly infusions does develop neuropathy, switching to once-weekly may not help the neuropathy much. Once you get the neuropathy it’s yours to keep, and any amount of Velcade will reactivate it. A patient who starts out with once-weekly infusions, however, is much less likely to develop serious neuropathy in the first place. If your doctor insists on starting out with the official twice-weekly protocol, change doctors. No kidding. Velcade is an excellent drug, but it’s useless if the neuropathy prevents you from taking it.

Some current test results: