My feet are pretty much numb up to my ankles from thalidomide. I feel (or don’t feel it?) it most in my toes and the soles of my feet. I was on the supplements suggested to me by Dr. Richardson at Dana-Farber for the entire time I was on thal, and continued it beyond stopping thal. It didn’t do much for me. I had acupuncture the entire time I was on thal, and that didn’t help either. Does anyone know of anything that does help? Is the damage permanent? I’m very glad I stopped thal when I did. I wish I had stopped sooner! I do want to add that the PN did progress after I stopped. It did get worse.
Category: General
I have a problem with my blood sugar when I take dex, and only for a period of 24-32 hours. Overall, my blood glucose is fine. I suppose I should be grateful! Today, I haven’t even eaten anything yet, and my BG is 150 mg/dL. I’ve had no food for well over 14 hours. I’m hungry though! So I’m going to have to have something.
I saw my endo, and my HGB A1C for the last 6 months was 5.4%, which is better than it was last time, even though I’ve gained weight and he expected it to be higher. 6 months ago it was 6.1%. My average BG over a period of 3 months, based on a test he did is 100 mg/dL. 6 months ago it was 120. When I have the random BG test done each month, it’s almost always under 100. Usually in the 80s. So I don’t have diabetes. It’s just the dex. I worry that it could cause me to become diabetic though. Has that ever happened to anyone?
At this point in my life, the very most valuable thing I have is my medical coverage. One of of my business associates allowed a relative to be covered under our group plan, which caused an extra expense for our company. Eventually, after much foot dragging, the individual finally agreed to actually pay for her own insurance. This is after a tremendous amount of other charity was also given to the person. Tens of thousands of dollars, actually. Well, I found out a few months ago that having someone on your group plan when they don’t actually work for you is not allowed, and that, if our insurance company did an audit, we could lose our group plan. I IMMEDIATELY told my business associate, who supposedly told the parasite relative to find her own insurance.
It’s been 3 months now, and the stress has been killing me. I notified the person myself that the ride was over. In return, I received threats. I am still in jeopardy, and apparently, if I do go ahead and cancel her insurance, she’ll make sure we ALL lose our coverage. Nice, huh? I have contacted my attorney and am hoping he can get something done about this. This leach relative happens to be an attorney also, so I am looking to have the state bar notified about her fraudulent use of our group plan and her threats. Yes, this person is related to me too. Apparently she doesn’t give a crap that I am afflicted with cancer and can’t get covered by anyone else if I ever lose my insurance.
This is a bad, bad person.
I’ve been on antibiotics the last 5 days, with 2 more to go. The doctor believed it best for me to do this, since I had a cold that was lasting too long, and there were signs of a sinus infection and possibly bronchitis. The antibiotic is called Levaquin. I finally feel a bit better, but am still congested in the head. How can one person’s head manufacture so much mucous!
I thought this cold thing had caused my IgA to go up. I didn’t know if a cold would cause an increase in serum IgA or not, so I emailed my doctor to find out, and here was his reply:
“I saw your elevated IgA, and I am afraid to say that I don’t think it is
too likely that this is from a cold. I don’t think we need to do
anything differently right now until we see the next one, however, when
you come back next time.”
Hi Beth,
Very nice blog and website. Very informative. I’ll be visiting often to keep up-to-date.
I was diagnosed in October with IgG Kappa – stage 1. Currently taking 200 mg of Thal, and 400 Mg of Dex. Still trying to adjust to the side effects: sleepiness, fatigue, bone pain, confusion, etc. Does any of that sound familiar?
Dennis
My IgA is up a bit. It was exactly the same for 2 months, but it went up into the 1300s, which is the highest it’s been since my diagnosis. I’ve had a cold and I did use Zicam for a few days. I’ve heard a rumor that a natural immune response to something like a cold can cause the numbers to rise. My IgG went up a few, but my IgM went down a few. I have also heard that using a product that stimulates the immune system (like Zicam) can have this effect. I haven’t asked my doctor about it yet, so I don’t know it it’s true or not. I’ll let you know what I find out. You can see my latest labs by clicking on “my labs.” Everything else looks normal, except the ALT. Lately, it’s been mildly elevated.
Last week I had an infusion of Zometa. The next day, I felt a bit flu-ish, or like I was coming down with a bad cold. You know that feeling? Aches and general malaise. I started to think about how I always felt kind of icky after having spent the day at the hospital for my infusion and monthly appointment. I assumed I had been hanging out in a germy environment and was fighing some kind of virus. Argh. Well, I finally figured it out after almost 2 years. It’s the Zometa. I had a pretty harsh reaction to it the very first time I had it, so what I’ve been feeling since then seemed like nothing. I just knew I didn’t feel well, but oddly enough never attributed it to the Zometa.
Added on January 23, 2005: I wanted to add that the local docs I talk to have also downplayed the risk of ONJ & Zometa. I was told by Dr. Durie that this is a real threat. He suggested I switch to Aredia – a 2 hr infusion. Possibly every other month. I will see him in March in Atlanta, and will ask about this again.
I have my December cold. I’ve been using Zicam, although I’m not sure if I should or not. I’ll be seeing Dr. Orlowski tomorrow, so I can ask about that. There’s always been this rumor that MM patients shouldn’t use anything that’s going to stimulate the immune system, since the wayward clone is part of the immune system. This isn’t the first time I’ve used Zicam though, and I haven’t experienced any problems in the past.