Thanks for the article

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I wanted to say thanks to Matt Moriarty at the Pilot for helping to raise awareness about MM by writing an article about my campaign to raise funds for the International Myeloma Foundation (IMF). If you’re local, and would like to make a tax deductible donation, you can click on the link to the left or drop your check made out to the International Myeloma Foundation at our office at 285 West New York Avenue in Southern Pines. The IMF is rated 4 stars by charitynavigator.org, so you know your donation will be put to good use.

I wanted to make a correction or two to the article content. I’m not sure how I came to have myeloma. One of the possible causes of MM is exposure to too much radiation, but (as far as I know), I’ve never had anything more than xrays. I did work in an industry for a short time in which a lot of toxic chemicals are used.

My stem cells are frozen at Wake Forest University Baptist Medical Center in Winston-Salem. The procedure to have them reinfused is non-invasive. The cells are thawed and then returned to the patient intravenously.

Advances in cancer research are being accomplished almost daily. There are some who believe a cure for MM is within the realm of possibility in the not to distant future! The good news about much of this research is that it can be applied to other diseases. Velcade, a proteasome inhibitor approved for MM, is now being tested for use against lymphomas, leukemias, lung cancers and others.

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Next appointment

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I have my next appointment to check up on things on Tuesday at UNC. I’m going back to see Dr. Orlowski. I originally switched to Wake Forest so I could get Revlimid before it was approved by the FDA. There are a variety of reasons why I decided to go back to UNC.

Anyway, I haven’t had any treatment since the chemo in October, and this is the longest I’ve gone without since 2003. It feels wonderful not to be taking drugs, and I’m trying not to think about what the myeloma might be doing. I’m just trying to enjoy the time off, especially from steroids (dexamethasone).

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Resist

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I’m urging all readers to resist the urge to watch OJ Simpson on television or to buy his book. I’m not even going to say what US network will be airing the interview or when. You, the readers of this blog, are a smart and decent bunch, so this isn’t really directed at you. I’m hoping others will stumble upon the message and take heed. Why not go out for a pizza instead? It won’t be as unhealthy for you as inviting OJ back into your lives!

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Health Hazards

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I just read this article and can identify.

How mounting medical costs are plunging more families into debilitating debt and why insurance doesn???t always keep them out of bankruptcy.

By: Karen Springen, Newsweek

August 22, 2006, Newsweek on MSNBC.com

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Recent Labs

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It’s been a while since I posted labs. For the most part, I haven’t gotten good lab reports since I was at UNC. The m-spike and IgA were measured 20 days after I had the cyclophsphamide. I was hoping for a good response to that, but maybe it was too early to test. I’ll have a repeat done in a few weeks to see if it’s gone down any.

Test Value Reference Range
WBC 6.6 x10^3/uL 4.5 – 10.5
LY 1.2 1.2 – 3.4
MO 0.3 0.1 – 0.6
GR 5.0 1.4 – 6.5
RBC 3.73 x10^6/uL 4.00 – 6.00
Hgb 10.7 g/dL 11.0 – 18.0
Hct 33.3 % 35.0 – 60.0
MCV 89.3 fL 80.0 – 99.9
MCH 28.8 pg 27.0 – 31.0
MCHC 32.2 g/dL 33.0 – 37.0
RDW 19.7 % 11.6 – 13.7
Plt 241 x10^3/uL 150 – 450
MPV 6.5 fL 7.8 – 11.0
GFR Estimated > 60 > or = 60
BUN/Creatinine ratio 15 6 – 25 (calc)
Sodium 148 135 – 146 mmol/L
Potassium 4.6 3.5 – 5.3 mmol/L
Chlorine 110 98 – 110 mmol/L
CO2 13 21 – 33 mmol/L
Calcium 10 8.5 – 10.4 mg/dL
Protein, Total 7.9 6.0 – 8.3 g/dL
Albumin 4.5 3.5 – 4.9 g/dL
Globulin 3.4 2.2 – 4.2 g/dL
Albumin/Globulin ratio 1.3 0.8 – 2.0 (calc)
Bilirubin, total 0.3 0.2 – 1.3 mg/dL
Alkaline phosphatase 115 20 – 125 U/L
AST 25 3 – 35 U/L
ALT 24 3 – 40 U/L
Creatinine 0.8 0.5 – 1.2 mg/dL
Free Kappa, serum < 0.1 3.3 – 19.4 mg/L
Free Lambda, serum 33.3 5.7 – 26.3 mg/L
IgA 1563 81 – 463 mg/dL
1st abnormal protein band 1.0 g/dL
2nd abnormal protein band 0.3 g/dL
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Nervous

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20 days after I had the Cytoxan, I had a quantitative serum IgA and SPEP done. I got the results back, finally. How can this be though? My IgA and m-spike are higher than they were before the chemo! I wrote to a well-known MM specialist, and here’s what he said:

One possibility is potential good news-that is that the Cytoxan actually destroyed and lysed myeloma cells, releasing IgA into your system and temporarily increasing the serum IgA level, which may now drop lower over the next few weeks.If that drop does not happen, then this does raise the question that transplant with high dose Melphalan may not work well. A modified protocol of some sort might be required.My suggestion is to follow closely off therapy for the time being.

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Iron Poor Blood?

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Remember those ads for Geritol? I have an iron deficiency and low hemoglobin and hematocrit, so I’m taking an iron supplement + vitamin C a few times a day and getting shots of EPO (Erythropoietin alpha) each week. This is from the chemo at the beginning of the month. Anyway, this condition can make one very tired. It’s not something a Geritol tablet’s going to fix.

I’m taking 325 mg of ferrous sulfate along with 250 mg of vitamin C, 3 times a day. Did you know that vitamin C helps with the absorption of iron? It’s true. If you’re taking iron, you should also take some vitamin C at the same time. Here’s some interesting stuff about iron.

I’ve been told that I should expect a response in about 4 weeks. Hopefully, the hemoglobin and iron will get back to normal and I can stop feeling so exhausted.

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