Friday, September 26, 2008

Stable

September 16, 2008:

Seven four-week cycles of the phase-II trial of the new Celgene drug CC-4047 are now complete, and overall results are great. M-spike is unchanged this month at 1.0, but down from a high of 2.7 at the start of the trial. IgG is up a little but I have a cold which can make it go up, and Lambda free-light chains (FLC) are at the lowest level in five years of measuring them. Doctor L used the word "stable" to describe my myeloma. Stable is good.

White cell and red cell counts are mostly unchanged, also good. Blood pressure, which was about 150/80 last month, was down this month, probably because Dr. L reduced my dosage of dexamethasone (dex) from 20 mg once weekly to 12 mg. That 12-mg dosage continues for the ongoing eighth cycle. This is the entire protocol as prescribed by Dr. L:
  • 2 mg CC-4047 every day, no days off. I take it at bedtime.
  • 12 mg dexamethasone once weekly. I take it with Sunday supper, so Monday is "dex day" for me.
  • 325 mg generic aspirin daily, to prevent deep-vein thrombosis (DVT). I take half in the morning and half with the CC-4047.
  • 75 mg generic ranitidine (Zantac) twice on Sunday and once Monday morning, to mitigate stomach problems from the dex.
  • 400 mg generic acyclovir daily, to stave off shingles.
Here are some 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.

Other subjects that came up:
  • The side effects of dex are mostly reversible, except for cataracts. So far I haven't had that problem.
  • Would lutein be of value in fending off cataracts? Curious minds want to know. Eat your Brussels sprouts.
  • Every myeloma treatment works better with dex than without. Darn.
  • The half-life of the IgG protein, whether monoclonal or normal, is four to six weeks (!).
  • IgG is a measurement of all immunoglobulin G proteins, while M-spike measures only the monoclonal part of IgG.
  • The half-life of light chains is two or three hours.
  • Hence the light chains can be a more-current snapshot of what's going on, compared with IgG or M-spike.
  • Events in the body can make light chains go up and down, but kappa and lambda normally go up and down together.
  • The exception is myeloma, which makes one go up independently. This is why the ratio of kappa to lambda is useful.
  • Celgene seems to be calling CC-4047 "pomalidomide" now. But it still says CC-4047 on the bottle of capsules that I get.
  • Revlimid can cause thyroiditis, causing the thyroid to first become overactive and later become underactive (hypothyroid).
  • Since CC-4047 could have a similar side effect, Dr. L checks my thyroid every three cycles. So far so good.
  • CC-4047 appears to have much less effect on white and red cell counts than Revlimid, which can depress counts substantially.
Here are a few specific test results:

Test Jun 26    Jul 24    Aug 22    Sep 16    Remarks
M-spike g/dL 1.1 1.1 1.0 1.0Best tumor measure
IgG mg/dL 1450 1330 1040 1180Variation is normal
L FLC mg/dL 4.03 3.30 3.57 2.64Free light chains
Calcium mg/dL 10.1 9.7 9.3 9.7Below 10.2 is best
Creat mg/dL 1.0 1.0 1.3 1.0Kidney, lower is better
HGB g/dL 14.8 14.3 13.8 13.6Hemoglobin, a bit low
RBC M/uL 4.28 4.17 3.99 3.90Red cell count, low
WBC K/uL 5.5 4.7 4.4 5.3White cells, normal

Red cell count and hemoglobin are on the low edge. I will continue to try to treat those with sublingual B-12 for another month.

Meanwhile I'm still running and life is good.


Breakfast
Breakfast: Don't you love berry season? Still possible to get some good ones. There's oatmeal under there somewhere.

9 comments:

  1. I'm very non-scientific .... can you explain what you mean by "half-life" of IgG?

    ReplyDelete
  2. Yup - if the half-life of IgG were 5 weeks, that means in 5 weeks half of the proteins would be gone. Then in another 5 weeks half of the remaining half would be gone (one fourth remaining), etc. Every 5 weeks, half of whatever remained would be gone.

    Don

    ReplyDelete
  3. Some helpful details there Don,thanks for those. We dont get such detailed reports here in the UK unless we really push for them. I am trying everything to lift Hamada's platelet levels but what helps, eg Kale, is not good for the kidneys - bit of a balancing act going on daily. I am so glad to see your stats in mostly all, improving - keep up the good work and all best wishes from us.

    ReplyDelete
  4. Don-
    Good news and thanks for the undate on CC-4047 or pomalidomide.

    Dex makes all conventional therapies work better- yes, but recommended doses continue to be lowered. 12mg per week is tiny compared to 5-10 yrs ago. This is important to point out. I would think that side effects like cataracts will be far fewer at these doses.
    I will cut and past your summary for http://beating-myeloma.org/
    Thanks
    David Emerson

    ReplyDelete
  5. Hi Don,

    Oh boy, I am sooooo happy to read about your stability...such brilliant news!

    A quick question: have you stopped taking supplements etc. because of the trial? Just curious.

    Take care,
    Margaret
    Florence, Italy

    ReplyDelete
  6. Great Don! I'm very happy to read this... and thanks for the useful info :-D
    Sherlock

    ReplyDelete
  7. Hi Don,

    My name is Justin Guild and I’m a graduate research assistant currently working
    with Dr. Jeong-Nam Kim
    (http://www.cla.purdue.edu/communication/people/jnkim.shtml) at Purdue
    University on a health communication study.

    Specifically, our research explores how information sharing behavior through
    online communities influences coping strategies among people with chronic
    conditions including cancer, diabetes, depression, etc.

    I’m contacting you to seek permission to place a link to our online web survey
    on your blog to invite readers and other visitors to participate. The survey is
    purely academic in nature and takes no longer than 5-7 minutes to complete.

    The web survey can be found by clicking on this link:
    http://www.createsurvey.com/c/70237-Os3LDl/

    In the survey, we use the term “blog” to refer to any online activity where you
    might read or share information in communities such as personal web logs,
    internet forums, and discussion boards.

    The findings of this study could lead to better management capacities of
    chronic diseases as well as an increase in funding for research related to
    online communities.

    If you have any questions, or would like additional information, please don’t
    hesitate to contact me at jguild@purdue.edu.

    Thank you for your time and consideration.

    Sincerely,

    Justin Guild

    ReplyDelete
  8. Hi,
    I think your blog is terrific, and I would like to feature you on Wellsphere (http://www.wellsphere.com). Would you drop me an email?
    Good health!
    Geoff
    --
    Geoffrey W. Rutledge, MD, PhD
    http://medblog.wellsphere.com

    ReplyDelete
  9. Hi Don-
    How about a new post "slacker!" You have the best Myeloma blog on the web... Your fans are asking for more! Nice to see you at the support group meeting Wednesday. Glad that you are doing so well- Pat

    ReplyDelete