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.
|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|
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.
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.