I wanted to keep those of you who kindly follow my site updated on my medical journey.
As you have probably guessed, I would rather write about myeloma news and medical advances, tips for newly diagnosed patients and the like then to write about me.
But I can see by how many page-clicks my personal stories get that at least half of you stop-by to see how I’m doing.
This is truly humbling–and I thank you!
I also want to note–a bit tongue and cheek–that I have noticed my readership has leveled-off since my health has stabilized and I’m doing better.
WHAT! NOT ENOUGH DRAMA LATELY? That’s OK! I’ll take it!
And speaking of drama, I don’t know if you have noticed that our dear friend, Danny Parker, hasn’t written a column for several weeks. Apparently while he was working in Europe (he is still actively working as a solar engineer) he contracted a bad infection which progressed to the point he needed to be hospitalized upon his return.
Danny is doing much better now, and reassures me he will be sending me a draft of his next column about herbs soon. Thanks Danny! No rush. You take care of yourself…
OK. How am I doing? I spoke with both nurses and their supervisor about the sub-q/IV mix-up I wrote about several times last week.
Everyone showed sincere interest and remorse. They have even called a meeting to try and “tighten things up.”
Just as importantly, I wanted to make the point that studies prove sub-q administration reduces PN significantly in most patients. It certainly does for me! I had the correct sub-q injection Wednesday. I never feel very good the night I get dosed using either method. But as far as I can tell, no more PN than I had prior to my Velcade IV mishap.
That’s ood news!
And speaking of good news, my blood counts and M-spike continue to improve. I did receive results of an unofficial SPEP test my medical oncologist ran three weeks ago without telling me… NO M-SPIKE!
Now, before you (or me!) get too excited, the lab in question has a history of being a tenth of a point or two lower than the in-house lab at Moffitt Cancer Center. I drive south one hour to get my “official” blood draw on Monday the 23rd.
But assuming all is good–no, let’s say GREAT–then you are all going to be reading a lot about the battle between my myeloma expert, Dr. Alsina at Moffitt, my medical oncologist and me. We all have different suggestions for a maintenance protocol.
The issue is that there isn’t an approved maintenance schedule using Velcade for post SCT maintenance. Just Revlimid. Isn’t that silly? That means if I’m at least partially refractory to Revlimid, I have no other official, FDA approved option.
CRAZY! Once again, the docs are still only guessing. What else is new!
But lots more about that later. For now, I just need to get over my latest cold, get my ANC (neutophil white counts) up from 1.3 or so above 2.0, my platelet counts back-up above 100 and I should be good to go!
I’m on my rest week for Revlimid (Down to 15 mg from 25 mg). I took my last capsule Tuesday night. Even so, I am up early with cramps in my right–always in my right leg. It doesn’t help that I took my 40 mg dexemethasone late Tuesday night. Sometimes I have trouble sleeping the second night after taking dex.
SEE! There’s still some minor side-effect drama going on!
So stay tuned, have a great weekend and don’t forget to feel good and keep smiling! Pat