Category: General

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I’m on a week off from all my meds now, except the warfarin. I forgot how exhausting the 4 days on/4 days off of dex was. I can only describe it as being tired at a cellular level. Seriously. Every cell in my body is exhausted. My hands shake and I can hardly write. My legs don’t want to move. All I want to do is sleep. I’m in awe of someone like my friend, Dan, who never even missed a day of work (except to have a blood clot) while he was on high dose dex and thal. I don’t know how anyone can function on this stuff. I can’t even drive sometimes! I really hope it’s kicking the heck out of the MM.

I started the Rev/dex EAP trial on the 11th of January. I’m just about to
finish my first cycle. I’m on my 3rd dex pulse and have I think 3 more days
of Revlimid to take before I have a week off everything. On February 8th,
I’ll have my first SPEP and quantitative Ig tests done to see how I’m doing.
I have had one CBC done, just Wednesday, to check how my counts were being
affected by the drugs. My CBCs, as usual, were all in the normal range. I
have only had a very few times in the last 3 years when I was mildly anemic.
It appears that the Revlimid isn’t having any impact on my WBC or platelets
(or anything). I’m hoping that will remain the same.

On dex, I have high blood sugar. It stays under 200, so the doc doesn’t
want to treat. I have been increasing my exercise quite a bit so I can keep
that blood sugar down. Of course I watch my starch intake and avoid sugar
while on dex. On non-dex days, my blood sugar is normal.

The Revlimid has been ok so far. Just a few problems. The first 3-4 days I
had a pretty bad headache. It was enough to keep me in bed, under the
influence of Excedrin, Darvocet, Ultracet and Xanax. Sounds a bit over the
top, I know, but when I have a headache it can turn into a monster if I
don’t use all the drugs at my disposal. :) On days 3-6 I had diarrhea and
stomach pain. After that, things settled down mostly. Now I’m having
constipation, which is nothing I’ve ever had before! I have to say, it’s no
fun. I’ve been downing the fiber and today picked up some herbal tea that’s
supposed to get things going. When I was on thal, I never had that problem,
but was told to expect it. So, this is a surprise for me. I even put fruit
back into my diet, which I had been avoiding because of the sugar.
Typically, I have a lot of vegetables.

That’s it for me for now. I’ll be sure to post my Ig’s and m-spike when I
get them. Going into the trial, my IgA was 2445 mg/dL and my m-spike was
1.2 g/dL. When I was first diagnosed in Jan 2003, my IgA was 4625 mg/dL and
I had 2 m-spikes of 2.8 g/dL and 0.6 g/dL. I think the lowest my IgA has
been 781 mg/dL in September, 2003. That was when I was on thal/dex. I’m
hoping for as good or better results from Rev/dex. :)

I was supposed to take my dex the morning of the 27th, and somehow I forgot! I ended up taking it about 7 pm that evening. I’m a morning dose dex person. I sleep better when I take it in the morning. When I take it in the evening, I’m up all night. I was up until about 6 am on the 28th and then slept about 4 hours. Here I am again, up late. I’m going to try to take something (Ambien) in a bit so I can get some sleep.

I just saw a report on CNN about how most insurance companies will not pay for drugs for fertility treatments. They talked to a few people who were selling their excess drug supplies to people who needed them, which saved them some money. They said the treatment can cost about $15k and may only be successful a small percentage of the time.

Today is the last of my 4 days off from dex. In the morning I’ll start my 4 days on, with 40 mg. I’ve taken dex in the morning and dex in the night. It doesn’t seem to matter so much to me when I take it. It doesn’t seem to have the impact on my sleep that it used to have in the beginning. Of course, I’ve been off of it for 6 months until now, so it may be a cumulative thing. I’ll have to see. The first 4 days (last week) I didn’t have any bad indigestion or sleep problems, so all I can say is yay!

The stomach problems I was experiencing seem to have come to and end. Thank goodness for that, too. All I can think is that if the Revlimid was making me feel so crummy, it had to be making the cancer feel icky too.

I’ve been making myself walk more every day. Dex makes my legs feel really weak, so it’s my job to keep them strong. By spring I’ll be swimming too!

When you’re taking new drugs, you assume that any weirdness you feel are side effects. I’m guessing that’s the case with me. The first 3-4 days I was on rev/dex, I had a pretty terrible headache. That has subsided. Was it the dex? Not sure. I’m off for 2 more days.

Today I feel queasy and things are kind of in slow motion. I had to take my dog to the vet, but didn’t feel like I should have driven.