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14 Jan |
Time marches on Edie, My MCL
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OK, as some of you may have noted, I’ve reverted back to the old theme. I guess I wasn’t really happy with the new theme either, so…………….
In the interim, while I work on a new and improved design, I thought I’d give everyone an update on what has transpired, over the course of the past month, with Edie and me.
I’m pretty much still the same, although my lymphocyte count did take a big jump, from 86 thou/cum in November to 106 thou/cum in December. I have been as high as 95 thou/cumm in previous months, so that’s not as big a jump as it might appear at first glance.
The good news is my hemoglobin and platelets were stable, even improved some, from November, so my bone marrow still appears to be functioning, at least partially well, leading me to believe the test may have been a fluke. It is known that when the numbers get that high, the variations also increase. I’ll know more next week, when I have my next blood test.
As for Edie, she is currently getting ready for an autologous peripheral blood stem cell transplant (PBSCT).
Today she goes for a tread mill test and tomorrow an echo cardiagram to make sure her heart is up to it. If everything looks good, she’ll receive her first cytoxan infusion on Friday, to kill off what ever myeloma may be left after the Velcade treatments. Then the following week she’ll be receiving growth stimulating drugs, stimulating the production of stem cells.
If all goes well, she’ll have are stem cells collected at the end of the month, and the transplant sometime either the end of this month, or the beginning of February.
After that’s it’s simply a waiting game, hopefully learning how successful the transplant was about 30 days afterwards.
I’ll keep everyone posted as time goes on.
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12 Dec |
My concerns reaffirmed today Edie, My MCL, Treatments
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When I was first diagnosed with MCL, I pretty much read just about everything I could get my hands on, I attended various conferences, and I talked to anyone who would listen.
One of the most important lessons I learned, and which I’ve mentioned numerous times before was
No one cares more about you than you.
But in addition to that, I learned to fear the drug Doxorubicin, AKA Adriamycin, Doxil, Hydroxydoxorubicin, or more affectionately the Red Devil.
Besides being a deadly chemical, as is the case with most chemotherapy drugs, it is one of the few chemotherapy drugs known to cause permanent heart damage.
I even heard Dr. Sandra Horning, a noted Stanford lymphoma specialist, state at the first lymphoma conference I attended in LA, there was no evidence Doxorubicin provided any added benefit to chemotherapy protocols.
This was music to my ears, since Doxorubicin is very common in most lymphoma treatment protocols.
And even though Dr. Horning has since changed her tune [which my skepticism of the US health care system makes me believe she was pressured to do so], and I have seen one favorable study using Doxorubicin, I remain skeptical, and refuse to even consider its use for me, should the need for treatment present itself.
So it was with great trepidation when I heard Edie’s protocol also included Doxorubicin or Doxil (the liposomal version). I expressed my concerns to her, but in the end it was her decision. She has since received 5 (30 mg/m2) doses to date.
But now, after this phase II study, conducted in France on 482 patients, I believe I have been vindicated in my belief, as has Dr. Horning, that Doxorubicin is not a necessary addition to any chemotherapy protocol.
This study clearly shows Velcade + Dexamethasone results in twice the complete remission (CR) and very good partial remission (VGPR) rates of the same protocol + Doxorubicin prior to transplant, and a better than 30% improvement after a transplant.
Hopefully now, Edie will also stop taking this particular drug. Who knows, it might even improve the neuropathy!
Tags: Edie, My MCL, Treatments
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30 Nov |
Getting older General Health, My MCL
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After completing the 109 miles of El Tour de Tucson, 2 weeks ago, you might recall my post about unbelievably managing to down 4 pints of Guiness.
Well, while I was downing those 4 beers, I was having a discussion about lymphoma, with the coach and 2 of the participants, when I was asked what I thought the reason I had been fortunate enough not to have needed treatment for the past 5+ years.
My immediate response was, I just felt it was the luck of the draw, and that there really isn’t anything one can do to prolong the inevitable.
Now whether that is true or not would certainly spark a wild debate, were that to be the intention for this post, which it isn’t. After all I’m not even sure I believe it totally. Else why would I continue to ride my bike as much as I do, and have not had a hair cut since my diagnosis. (We certainly can’t forget the story of Sampson?)
In fact, I do believe those are two contributing factors, along with a little bit of luck and avoiding any medications, vitamins, supplements etc., that has enabled me to escape the need for treatment to this date, and which is what brings me to the point of this post and cartoon, courtesy of Walt Handelsman, which I thought worthy of sharing.
It just seems rather apropos at the moment.
Tags: General Health, life, My MCL