Remember all those baby diseases, like measles, mumps, etc.? Well, it seems whatever immunities I had have been wiped out by the high dose chemo and transplant. I have no immunities to mumps, measles, polio, rubella, hepatitus A, B, or C, tetanus, and probably a few others. The debate among my doctors is whether to vaccinate me now or wait until I've finished with my chemo and/or next transplant. I guess I'll stay away from infants and unvaccinated small children.
I've found some relief from the dizziness and headache--sleep. I've been tryng to get through the days without my afternoon naps but have realized that depriving myself of the 2 hour nap in the afternoon was leading to the headaches. So I've resumed my napping and my head has settled down.
The revlimid is also causing more neuropathies. But, I've found a temporary solution for that as well. A heating pad beneath my feet at night seems to help with the pain, keep my feet warm and reduce the muscle cramping in my lower legs. I can't believe I've wrestled with cold feet for the past 3 years when such a simple solution lay at my feet, so to speak.
In addition to the blood counts, we're also watching the measures of my kidney and liver function, creatinine being the main one. My creatinine was slightly elevated when I returned from Little Rock. 1.0 being perfect and I was at 1.2. It has now risen to 1.6, which is too high. So far no remedy other than being told to drink more water. We have to be vigilant as the chemo and the myeloma are known to adversely affect kidney function. I've also got much more iron in me than I need. This is due to the multiple transfusions and is also a trait of the myeloma--it holds onto iron apparently. So that requires another drug in the morning before I eat. That drug has some awful side effects, but we're muddling our way through.
As the years go by with this nastiness it does feel that the complications and side effects become more complex. I still bounce back but it does seem the bounce isn't as high as in the early years. I'm sure my age is a contributing factor. We're not getting any younger, as they say. Which reminds me; I watched the Rock & Roll Hall of Fame concert the other night on HBO. OMG, does Mick Jagger look tired!! That Rolling Stone has rolled a little too long. And with that, I'll close for now. ROCK & ROLL.
Dan
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6 comments:
Dan -
On reimmunization, did they actually do tests for antibodies on these diseases? I did a fair amount of research on this and -- surprise, surprise -- there isn't a consensus on reimmunization. Generally speaking, most of those I spoke with do not reimmunize, but there are dissenting views. One of my doctors (Steve Forman at City of Hope) generally does not, but he will test the antibodies (I have not had this done yet) occasionally. Did you have this done, or is it Rifkin's opinion that you just don't have the immunity any longer?
Hang in there!!
Hi Dan,
ok neuropathies, and diabetes go all along, side by side, and indeed, as complicated as my Diab is, thanks to the fact, that for 29 years I check it 10 or more times a day, until now, I have none.
Susan might remember how often I said: amputations, blindness and dialyses are the diabetes complications which I want to avoid.
I got the first congrats for this even from those of my docs who always were against my many tests at the 20th anniversary, so you might imagine how much it means every year going by.
BUT, please pay attention:
yes the heating pad might be a wonderful idea against those cold feet.
But, those heating pads for the feet for example are forbidden for us diabetics.
Why?
Because if the neuropathy starts, and I promise you it starts slowly, then you loose sensibility.
Losing sensibility the heating pad gives you an unreal sensibility.
Therefore, talk with Rifkin, whether you can continue to use the heating pad, or not.
I'm sure you want to keep your feet as long as you can, don't you?
Sure I hope and wish you to keep the heating pad, but I want you to be save.
I know quite a few diabetics that got amputations after only 8 years of diabetes, of course they never checked it out.
Good luck and love,
I
Nick,
They did a complete battery of tests of all my titers for these diseases. No antibodies. This is consistent with my last transplant. They waited a year after transpllant, tested all the titers, and found no antibodies. The docs at MD Andersen told me to get tested,as their experience is the antibodies are wiped out by the transplant.
This study might interest you as you prepare for an mini allo transplant.
http://bloodjournal.hematologylibrary.org/cgi/content/abstract/blood-2009-08-240358v1
Dan:
Thanks for looking at my blog...
I'm just starting out on this road... Not sure where I'm going but having people with me on this trip helps...a lot!!!
Steven
be sure and stay on top of the creatinine and your kidneys, drink that water! I am on dialysis, the MM attacked my kidneys, its how I was diagnosed, not chemo-caused, but either way, you do not want dialysis. DUH, right?
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