Friday, July 25, 2008

Glass Half Full

In early March I joined a phase-2 trial (study) of Celgene's new IMiD drug CC-4047, with once-weekly dexamethasone. The first three one-month cycles brought very good results, each with approximately a 25% reduction in markers, but the fourth and fifth cycles have been less spectacular. My two primary markers are IgG and M-spike:
  • IgG actually went up 15% in the fourth cycle, then down half of that difference in the fifth to a value of 1360 mg/dL. IgG does bounce around, though, as it responds to internal bacterial and viral infections, so the meaning is not clear.
  • M-spike went down from 1.2 to 1.1 g/dL in the fourth cycle, then stayed at 1.1 in the fifth. It is the best measure of monoclonal protein, which in turn is the best measure of total tumor burden other than a bone marrow biopsy (ouch), but it may only be repeatable to 5% or 10%. Zero is the ideal value. Lambda free light chains are down 22% over the two months, which must be a good thing. They can be another measure of tumor burden for some people, though we haven't been focusing on them in my case.
So the bad news is that there is no change, at least none for sure. The good news is that there is no indication at all that the tumor burden is climbing again, as it had at every test for the previous five years. More important, IgG is in a "normal" range and M-Spike is at a value last seen three years ago. I hope for more improvement, but if none comes I'm still far better off than before I started on the drug trial. Life is great!

We will continue with 2 mg of CC-4047 daily and 20 mg DEX once weekly for the sixth cycle. 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 drugs, CC-4047 and dexamethasone (DEX), are described in a previous post.

Other things that came up:
  • Much of the appointment this time was handled by KD, a certified nurse practitioner, who asked most of the questions and actually performed the hands-on part of the checkup. Evidently this will be the new normal, with KD or Dr L checking me out on alternate months. This time Dr L did come in for a while, to answer my little list of questions, and I don't know if that is part of the new normal.
  • I asked if there was any resource to get advice about mitigating the effects of dexamethasone, and Dr L wasn't aware of any. Just exercise and a high-protein diet. Guess it's up to me to find or create the resource.
  • HHV-8 was discussed at length in some blog comments (see earlier post). Dr L said that there was a time when some doctors were quite excited about a perceived link between myeloma and HHV-8, but since that time no one has been able to reproduce their results.
  • Lipids - we checked mine for the first time in many years: Total cholesterol 168, HDL 42, LDL 109, triglycerides 83. I'd like the HDL to be a tad higher and LDL a bit lower, but I'll take it.
Here are a few specific test results:

Test   May 29     Jun 26     Jul 24     Remarks
IgG mg/dL 1260 1450 1330 Some variation is normal
M-spike g/dL 1.2 1.1 1.1 Best tumor measure
L FLC mg/dL 4.25 4.03 3.30 Down is good
Calcium mg/dL 9.7 10.1 9.7 Below 1.2 is best
Creat mg/dL 1.1 1.0 1.0 Liver function, low is better

Breakfast Post-run breakfast: Gluten-free oatmeal with organic flame raisins and dried cranberries, blueberries, organic apricot, organic walnuts, mango, papaya, dark chocolate, organic pomegranate juice, organic nonfat milk.
Dex lunch, low carbs and high protein: Organic pork chop, organic broccoli with shredded parmesan cheese, organic cherries.Lunch
DinnerDinner: Organic chicken with onions and brown rice, organic nectarine, organic mixed vegetables with shredded parmesan cheese.


  1. Hi Don,
    it's nice to read good news from you. In my opinion your MM is not moving at all. It is as stable as rock. An this is very good. I know we all would like to see that rock to fall in thousands of pieces, but if that is not possible, to be a stable rock is a very good option.
    Just a question. Re. calcium, why do you say that below 1.2 is better? I didn't know it.
    Have a nice summer,

  2. Hi Sherlock,

    Just because the calcium reference range for this lab is 8.9 to 1.1 mg/dL. If it goes to 1.2 then it may be time to wonder if I'm losing bone somewhere. CRAB - C is for calcium out of range.

    I called the IMF once to ask how FAR out of range might cause concern, and they called Dr Durie who said that any reading above the reference range might be of concern to a myelomiac.

    You have a great summer too. Find some great new treatments, you sleuth :-)


  3. Excellent news, Don. I agree with Sherlock (how could I not!? ;-)) that stable is good. Very good!

    Keep up the good work!

    Florence, Italy

  4. hi Don,
    I don't know if it is too late for you to read this comment but I have been learning lots from you. I am so impressed with your determination. I have copied and will follow your diet. I have another kind of cancer that resists treatment. But there is so much in your blog that is helpful to me. I wonder if you could tell me where you get your organic pomegranate juice. Thank you,

  5. p.s. I wish the very best to you....and wow! I hope you will turn your blog into a book one day! A success story that will inspire!

  6. Hi Anonymous,

    Thanks for your comments. We have found two sources for organic pomegranate juice: Trader Joe's and Fresh & Natural. That latter is a chain that is local to the Twin Cities, Minnesota.

    For a while we could find it at Cub Foods, but they have stopped carrying the organic version.

    May your cancer stay in the background. I wish you well too.


  7. Thank you Don,
    I think we have a trader joe's just about to open nearby. I will check. I almost bought the pure concentrate at Whole Foods but it was not organic. BTW.....again I must thank you and this time it's for listing exactly what you take. I just ordered the very two cucurmins that you take and for the reasons you wrote about. Will decide how to take that ...orally but.....

    I am interested in seeing how fine the powder is. Has anyone ever thought about snorting it like a druggie would snort cocaine? I have not read all of the comments on all of the blogs yet. My husband who thinks outside the box...wonders if it might possibly get it into the bloodstream. I have made sprays out of herbs and salt water nasal solutions for sinus issues and have had great I am thinking olive oil..and cucurmin as a spray......hmmmmm but not for sinus but hopefully to emulate flu vaccines, etc.

    Aside from the spray for my sinuses
    I am living proof that what you spray in your nose can go once I used a nasal steroid spray and had terrible (and lasting) systemic issues...side effects.. that never went away...and without getting into details these effects involved my legs and hips. So that stuff made its way from my nose to my body. Speaking of systemic (not that we should put cucurmin "drops" in our eyes...but just to demonstrate how what might be meant to remain localized does not always remain localized) friend's grandmother was hospitalized for a systemic illness....very very sick in all ways. They took away all of her pills to see if her meds were the issue and did a million lab tests on her. Nothing showed up in the lab reports yet she was getting sicker and sicker. Finally a nurse caught her (sneaky gal) putting in her eyedrops for glaucoma which she had kept hidden from everyone so she could keep on using the drops and when THAT was removed all of her ailments went away...and then she went home healthy (got new glaucoma drops that did not affect her adversely). But it took about two weeks to catch her using the drops...and all of that while she was systemically ill.

    Thanks also for your good wishes for me..

  8. I did get a chuckle out of the idea of snorting curcumin. I can assure you that 8 grams is a lot to snort! But I suppose if it worked you wouldn't need so much.

    You've probably been to Margaret's Corner. She has been very resourceful in finding ways to take curcumin, e.g. in chocolate. I just gulp it down 4 grams at a time with a gram of flax seed oil.

    Be well, Don