Friday, February 5, 2010

Cycle 25 Results

February 4, 2010, end of Cycle 25:

This was another good visit. Not a GREAT visit, but a good one. A GREAT one would include a significant drop in M-Spike, and today's number was 1.0 g/dL, the same as the previous cycle. In fact M-Spike is only reported to the nearest tenth, because the test is not highly accurate, and the actual monoclonal proteins may have gone up a fraction of a tenth, because IgG increased 6% and Lambda light chains increased a little. But I'm still off DEX, and Dr. L pronounced the myeloma STABLE! When that changes there are lots of things to try, including going back to the DEX and possibly adding Biaxin. So far my only treatments have been thalidomide (years ago), pomalidomide, and DEX.

I'm still on a Phase II trial of pomalidomide, brand name Actimid, previously called CC-4047. It's a new IMID drug in the family which includes Revlimid and Thalomid (thalidomide). I get one 2-mg capsule of pomalidomide per day, every day, but no more DEX. I also take an aspirin every day to reduce the likelihood of a deep-vein thrombosis (DVT), which is one of the most-dangerous potential side effects of the pomalidomide. So far so good, no DVT. I go to Mayo Clinic every 28 days for blood tests and an exam. Pomalidomide is working for me, and the study so far shows that it has a lot of potential, even for patients whose myeloma is not controlled on other drugs. It's a drug we can live with.

Other pomalidomide side effects that I do experience:
  • Bradycardia: This is a reduction in heart rate below the normal rate. In my case the normal resting heart rate is already low, usually in the high 40's, because I'm a runner, and pomalidomide takes that down to the low 40's. It hasn't been a problem, though, unless it's slowing my running pace, and I can't really tell about that because any bradycardia effect would be masked by the effects of the DEX.
  • Peripheral Neuropathy: Pomalidomide can cause numbness or even pain in the hands and feet, sometimes other parts of the body. My neuropathy is very mild, just numbness in parts of the soles of both feet, and numbness with tingling in one previously-injured thumb. It's not a problem - days go by with no thought of it entering my head.
  • Depressed Neutrophil Count (neutropenia): The count dropped to 1.22 k/uL, where 1.70 is the bottom of the reference range. I'm a little concerned, but not too concerned, because for some reason the lab had to do a manual count, which is "not exactly comparable" to the usual automatic count. It's down 12% from last month. If it goes too low the risk is neutropenic fever, which happens when the body's defenses are down. Lethal sepsis can follow if treatment is not immediate. Hopefully before that, Dr. L will switch me from daily pomalidomide to 21 days on, 7 days off, but she did remark that the neutrophil count was still above 1.0 k/uL. According to one source, a value above 1.0 for a white male is only mild neutropenia, and a value below 0.5 is severe.
Other discussions with Dr. L:
  • Some patients (on the study?) are now taking Biaxin, drug name clarithromycin, an antibiotic, because it has been shown to potentiate the combination of an IMID drug with DEX. It seems, however, to increase the symptoms normally attributed to DEX, not necessarily those attributed to the IMID drugs, so perhaps it potentiates mostly the DEX and not so much the IMID. Since I am not taking DEX, it might not help treat the myeloma.
  • But I have recently scraped my wrist, removing a small bit of skin, and that area is showing some infection. Since I'm allergic to penicillin, Dr. L prescribed a three-day regimen of Biaxin to calm that small infection site, so I guess there's a tiny chance that it will help with the myeloma too. Only a tiny chance.
  • I'm a little surprised to discover that my local pharmacy doesn't carry Biaxin, so I can't get it until tomorrow. I wonder if that's because it's usually sold in blister packs of 7 or 14 days, as Zithromax is sold, and I only need three days worth. Anyway we'll start tomorrow noon.
  • Pomalidomide is toxic to neutrophils, thus depressing my count. According to Dr. L, though, DEX can promote the production of neutrophils, another reason to use DEX with pomalidomide. Since I'm now off DEX, I don't enjoy that benefit.
  • The next appointment, in March, will bring us to the two-year anniversary of the PET scan which showed lesions in three of my bones. Since then the pomalidomide and DEX have presumably given the bones time to rebuild in those areas, but I asked Dr. L how we can be sure that the myeloma has not continued or renewed its attack on my bones. I care a LOT about this, because my runner's lifestyle would be halted abruptly by almost any broken bone. She pondered a bit and wasn't adverse to a new PET scan, I thought, but then suggested a new bone density measurement instead. She said that it might be a good idea because long-term DEX treatment can reduce bone density, and a loss of bone density correlates well with myeloma bone injury. So we'll do that. Yet to be decided is whether we do the bone density measurement on the next Mayo visit or, instead, at my local hospital where I have a baseline of previous measurements.
  • For at least 10 years prior to my myeloma diagnosis, I took naproxen (Aleve) tablets or liquid gels, standard over-the-counter dosage of 220 mg naproxen sodium, twice a day as suggested on the label, every day, to manage headache pain. Neurologists tried everything to get at a cause of the pain, but eventually we all concluded that the naproxen wasn't such a bad way to deal with whatever it was. When the pomalidomide drug trial began, my M-Spike at first came down rather steeply. Then, for whatever reason, the headaches disappeared, possibly a beneficial effect of the DEX. So I stopped taking naproxen in midsummer 2008. At about that time, the decline of the M-Spike slowed, and it leveled off at about 1.0 g/dL. Coincidence? Dr. L said that there is some evidence that NSAID's may have some anti-myeloma effect. I wonder if that might be increased synergistically if the NSAID is used in concert with another agent, such as pomalidomide. Dr. L wasn't adverse to a naproxen experiment, if I want to do it. I think that she agreed that naproxen is relatively safe. It poses a slight risk to the kidneys, but I get kidney function checked every 28 days. I'm thinking about it. The headaches do seem to be coming back a little, now that I'm off DEX.
  • Mayo wanted to do a trial of Celebrex with MGUS or smoldering patients, to see if that NSAID has a significant anti-myeloma effect, but the study could not accrue enough patients to go forward. I recall having an exchange of emails with the doctor who was heading that trial, back when my myeloma was smoldering, but I was not eligible as a trial subject for several reasons, not least of which was my long-term use of naproxen.
  • Dr. L was not aware of any study using naproxen. If I try it, I probably shouldn't change anything else, no change to the supplements I'm taking, or I won't know what made the difference if there is one.
  • I mentioned to Dr. L that I tried to refill my prescription for acyclovir, which I take to ward off shingles, but the pharmacy said they couldn't get a supply of it. She was aware that there is currently a shortage, and suggested a couple of alternatives, but thought perhaps I could just get along without it, especially since I am off DEX right now. No more acyclovir, at least for a while.
Some current test results:

Test    Nov 12    Dec 10    Jan 07    Feb 04     Remarks
M-spike g/dL 0.9 0.9 1.0 1.0 Best tumor measure
IgG mg/dL 1100 1090 1110 1180 Variation is normal
L FLC mg/dL 2.61 2.36 2.18 2.78 L Free light chains
Calcium mg/dL 9.8 10.0 9.6 9.8 Below 10.2 is best
Creat mg/dL 1.0 1.1 1.1 1.1 Kidney, normal
HGB g/dL 14.4 14.3 14.4 14.2 Hemoglobin, normal
RBC M/uL 4.00 4.00 4.05 4.00 Red cell count, low
WBC K/uL 3.9 3.7 3.5 3.8 White cells, low
ANC K/uL 1.53 1.55 1.38 1.22 Neutrophils, low & falling

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. Quite technical.

We recently ate at the Lake Elmo Inn, in Lake Elmo, MN.  The Tuesday brunch buffet is scrumptious, with two entrees, lots of salads, vegetables, and fruit, and many irresistible deserts.  That chicken is not gluten-free, but I scraped off the sauce before eating it.  In the upper right is a homemade turtle with chocolate, caramel, and pecans.  You can go back for more, and I did.  We all did.


  1. Don;

    Thanks, as always, for the detailed information about your participation in this trial. It's likely that many of us will be using Actimid/pomalidomide in the future. The info about side effects is encouraging.

    I am reminded of Dr. James Berenson's comment when he spoke to our support group, "There is little difference between stable disease and a complete remission."

    You seem to prove that point, given your running history.

  2. Thanks John.

    There seems to be a tension right now between doctors who think it's important to drive the myeloma way down and those who are satisfied with a manageable, stable disease. While everyone agrees that lower is better, the doctors at Mayo in Minnesota seem willing to consider a patient's lifestyle and use less intensive treatments.

    Thanks for sharing that remark by Dr. Berenson.


  3. Happy New Year! I am working on improving my blogroll- Cancer Blogs - at Being Cancer Network where your own blog is presently listed. One of the things I want to do is to improve the 800 blog entries, making them more useful for readers.

    Check to see if information is correct. Please let me know your specific cancer diagnosis - the medical term. Also the year you were diagnosed and anything else you think is relevant for the listing such as a transplant. If you have written a book or memoir, I can feature it in a special Cancer Book List section. Please include the name of your blog in the email so I can put the information in the correct listing.

    Cancer Blogs I & II has been a very popular (over 8000 visits) and valuable resource for folks. It allows people to view what others with a similar diagnoses have gone through. And it brings additional attention and traffic to survivor’s blogs. It is helping to build a strong, vibrant community of survivors.

    Please consider adding Being Cancer Network to your blogroll if you have not already done so. I am now following you on Blogged.

    Please see my January 10 post - New Year’s New Face - for additional changes in the website. Wishing you a happy and healthy new year.

    Dennis Pyritz, RN
    leukemia & transplant survivor

  4. Thanks Don for your detailed information. I can't tell you how helpful and encouraging this is to me.

  5. A most interesting and informative post as all your writing is. I learn much from 'Myeloma Hope' and love your food photos. Always, reminding me to vary H's diet as much as possible. How great there is good news with all stable. Our very best wishes to you Don.

  6. Fascinating that thalidomide and its derivatives continue to be of medical utility. A medicine which was the stuff of horror stories in my childhood ends up saving lives today.

    I mentioned to Dr. L that I tried to refill my prescription for acyclovir, which I take to ward off shingles, but the pharmacy said they couldn't get a supply of it.

    Are you cleared to receive the new shingles vaccine? I am informed that it's good stuff. I haven't been in for it yet, but intend to. (I've had shingles once, and would be very very happy to never have a return visit. I have the scars to remind me.)

    I'm also curious about privately contacting, if that's possible and okay, your friend "Max" who was mentioned in several earlier posts of yours, who you reported is using low dose naltrexone for Waldenstrom's macroglobulinemia.

    I am familiar with LDN use in several other carcinomae, but Waldenstrom's is so rare to begin with that I haven't yet encountered anyone who has tried LDN with it. I did see a comment elsewhere by you, if I have that right, which indicated that as of January '09, Max was still on LDN for WM and doing all right with it. Hope that has continued.

    I assume that you're shielding Max's identity for what you or he consider good reason. I'm happy to correspond via a pseudonymous e-mail address for Max's comfort.

    The basis for my inquiry is that I have a family member with relapsed Waldenstrom's. I'm interested in knowing whether there are any variations or cautions on the standard LDN protocol (with which I am familiar) when employed by a Waldenstrom's patient.


  7. Hi Wrench,

    Actually Dr L and Dr KDS have NOT cleared me for the new shingles vaccine. It's a live virus, and they say that my immune system might not be strong enough to fight it off, thus CAUSING a case of shingles. I think this is standard advice for myelomiacs.

    I'm shielding Max's identity only because I haven't asked him if I can use his name. I'll give him a call and see if he's interested, at which time I will need your email address if he is.


  8. Hi Torquewrench,

    I got the go-ahead for you to have a conversation with Max, if you like. Leave me an email address and I'll convery it to him to contact you.


  9. Don, thanks for keeping such a detailed blog. I am post autologous Stem Cell transplant (Apr 21, 2009)& actively seeking ways to manage the disease .. or even cure it.

    Does anyone here have thoughts on POLY-MVA? Just went to a naturopath and that is one of his recommendations.

  10. Thanks for having inquired with Max, Don. Much appreciated.

    Let me see if I can render my contact e-mail address in a sufficiently obfuscated way as to keep the plague of spambots from harvesting it, but still be clear enough for you to parse it and forward it to Max's attention.

    My address is at "fmail", except with the "f" replaced by the letter "g".

    My username there is three words, separated by periods. Those three words are, in order,

    (a) marque

    (b) and

    (c) reprisal

    Is that okay? If not, do please post a comment indicating that further disambiguation is required.

    Please also feel at liberty to send me a test ping at that address before handing it on to Max, to be sure everything is in good stead.

    Thanks again for lining up communications. My gratitude goes out to you.

  11. Dear Don,

    I'm glad to read that your myeloma has stabilized!

    At The Myeloma Beacon, we are writing an article that we hope will help myeloma patients understand clinical trials and why they might or might not want to participate in one.

    We would like to find a couple of myeloma patients who have participated in clinical trials and who are willing to answer a few questions by email. (i.e., Why did you decide to participate in a clinical trial?)

    Would you be interested? If so, you can email us at admin at myelomabeacon dot com