Sunday, June 28, 2009

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


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.

Life goes on
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.


  1. I hope you will be "one of the few," too, Don! :-) And I also hope your PN diminishes in time.
    As usual, I am happy to read that you are doing well and maintaining your...stability!

    Florence, Italy

  2. Don,
    I agree on warmth is the key to healing. With mild PN in my feet from Thalidomide I wear socks 24/7 except for a special occasion. In winter at night if the temperature is below 10C (50F) I wear 2 pairs.
    No PN in male organ only ED and low testosterone from transplants.
    Still scratch if it's itchy.
    Another informative posting.

  3. Don- this recent info from ASCO talks about a therapy showing no sign of PN-
    Perspectives on myeloma therapy from ASCO

    The link below is to an article/video titled
    ASCO 2009: Expert Video Perspective on Multiple Myeloma

    The three most important issues mentioned in the article are:

    1) The success of combinations of novel therapies such as velcade, revlimid, thalidomide and dexamethasone.

    2) A new agent "carfilzomib; this was previously known as PR-171." Primarlily because this therapy shows little evidence of peripheral neuropathy-

    "Carfilzomib is a second-generation proteasome inhibitor that hits the same site within the proteasome that bortezomib appears to hit but seems to do it in an irreversible manner. And what is interesting about this drug is not just the response rates, because there certainly are responses or, at least, stability of disease in patients who appear to have bortezomib resistance, but what's most intriguing about this is the duration of therapy. Many patients on this trial have been receiving this proteasome inhibitor for between 6 and 12 months and, in fact, a number have been treated for longer than 12 months without the development of significant peripheral neuropathy."

    3) Most importantly, Dr. Sagar Lonial questions the role of high-does chemotherapy due to the success of 3 and 4 drug combinations- "whether those new regimens will obviate the need for high-dose therapy"

    Certainly a myeloma "expert" is not going to completely write off the use of peripheral blood stem cell transplants in the treatment of multiple myeloma. However, it is significant that this doctor even questions the need for high-dose therapy in light of the success of novel therapy combinations.

    Further, considering the amount of evidence showing the benefit of lower and lower doses of chemotherapies as well as the benefits of supplementation, before, during and after chemotherapy, it is clear that the days of high-dose chemotherapy are numbered.

    David Emerson

  4. David,

    I agree that stem cell transplants (high-dose therapy) may be on their way out. Personally, I'm reserving that option as a last resort.

    What scares me about them is the use of alkylating agents like melphalan, which tends to produce secondary cancers a few years down the road.

  5. My Doctor perscribed the following vitamin regimen for PN and it makes a significant and very noticeable difference:

    L-Carnitine: 500 mgs twice per day
    Alpha Lipoic Acid 600 mgs 1 per day
    B-Complex: one per day

    He subsequently added:
    Vitamin D-3: 1,000 IU
    Vitamin B-12: 500 mgs
    Calcium, 500 mgs

    Please note My MD is Dr Sundar Jagannath a prominent researcher and practioner in MM...I was surprised that he recommended vitamin therapy but it worked.

    Note: I have MGUS, not MM, and got the PN from Thalomid.

    The above vitamins may not be appropriate for you ... Please ask your own doctor.

    FYI... I found best pricing for these vitamins from Swanson Health Products.

    Best to all

  6. Hi Don-
    Marilyn Smith from Edina wrote in and asked if I was using curcumin. I mentioned your history with it and said I would contact you for some detailed info. Would you go to my new myeloma site, and read her comments and my response? Then if you could respond that would be great! Sorry I have missed the last two meetings... I will see you at the August meeting and possibly Saturday in St Louis Park (I plan to drive over) Your help would be appreciated- Pat