Month: July 2006

IgA and m-spikes up again

I just got email from a nurse at Wake Forest:
Your IgA was >805, M-spike is back already and shows spike in beta gamma of .30, and gamma of 0.18.

I’m sure the “>” is a typo. The lab report gives a distinct value when the number is that much. The only time I’ve seen such a thing is when my IgM, for example, was too low to measure. The lab reported “< 6." Anyway, next month we'll schedule the stem cell collection. My doctor said I can take a little break after that. My IgA and m-spikes have been going up the last 2 months and were stable the 2 months before that. My lowest m-spike during this treatment was 0.3 g/dL and the lowest my IgA got was 489 mg/dL. So, in a few months' time, the m-spike has gone up to .48 and the IgA to 805.

The Rev/dex EAP

I started the Rev/dex extended access protocol in January, 2006. When I began, my IgA was about 2300 mg/dL and my m-spike was 1.5 g/dL. By the end of April, my m-spikes (I usually have two) totalled 0.3 g/dL and my IgA was in the 500s. Since then, those values have gone up a small amount.

The Rev/dex EAP called for 25 mg of Revlimid for 21 days, then a week off. For the first 4 months, the dex was high dose. 40 mg/day for 4 days, then 4 days off. I took the last week of the cycle off from dex as well, so I had one drug free week every cycle. The high dose dex was difficult for me, due to the crash I experienced. My doctor suggested tapering the dose, which worked well.

Day 1: 40 mg
Day 2: 40 mg
Day 3: 40 mg
Day 4: 24 mg
Day 5: 12 mg
Day 6: 6 mg
Day 7: 2 mg
Days 8-14 off
Day 15 – 21: same as days 1-7
Days 23-29 off

Starting in May, I began standard dose dex, which is 40 mg a day on days 1-4. Just 4 days a month. My schedule for Revlimid is still the same.

I chose Revlimid because I think taking pills at home is easier than driving someplace for some kind of systemic chemo. It’s not without side effects for me though.

During the first few weeks of treatment in January I suffered from terrible headaches. I think I adjusted to the Revlimid and no longer had headaches after the fisrt 2 weeks. Throughout this treatment, I’ve been plagued with diarrhea. Once the high dose dex was over, I began to experience nausea too. I believe the dex was keeping it under control before.

For the nausea, the doctor prescribed Compazine and Ativan. I think the Ativan works better than Compazine. I also think I feel less queasy if I don’t let myself get hungry. It seems as though I need to eat constantly, but not too much at a time.

Towards the end of May, I began to experience a sore throat and post nasal drip. The PND is thick and has been impossible to get rid of. To be on the safe side, my PCP has prescribed 2 different antibiotics, neither of which had an impact. This makes us certain it’s not a bacterial sinus infection. I’ve learned the most un-ladylike skill of “hacking” up gunk from my throat. I haven’t found anything that just gets rid of the condition though. I’ve tried decongestants and use a saline nasal spray regularly.

The Rev/dex EAP worked well for me. Although my markers have gone up a bit, a trend has not yet been established, so I’ll stay on it until I decide to do something else. I wonder though, how much of its effectiveness was due to the high dose dex since my numbers went up when I switched to standard dose?

Dex and blood sugar

This is a valuable bit of information about steroids and blood sugar sent to me by a list friend who is an MM sufferer and MD.

Transient elevations of the blood sugar do very little harm, diabetes is a long term disease. You have to have persistent elevations of your blood sugar over decades (yes decades) to see real end organ damage. An occasional spell of elevated BS is of very little concern. That said, I am in no way supporting a life style of not watching your blood sugar, good control of the BS is important. The scale is important too, in other words, a BS of 125 is more of a flag, a BS of 350 is out of control and needs action because of the related effects (vision, kidney, dehydration etc).

There is a test I would highly recommend, the HB A1C. This is a marker that does NOT respond to rapid changes in BS, but will drift upward if the BS is persistently elevated. If a patient comes in with a BS of 275 but is normal all other days, the A1C will be normal. We use it to monitor long term control. On the other side of the equation, if a patient has an elevated A1C, that means he/she must be out of control most of the time even if they are normal the day of the office visit. If you are having intermittent elevations of your blood sugar, a HB A1C is a good test to run. A normal value for the A1C would be very reassuring. It is a cheap test and widely available.

Ben

IMF Seminar in Philly

Who will be at the IMF seminar in Philly? A friend and I are going to drive up. I’m going to try to get the MMA list members who will be there together after dinner Saturday night. I know of a few that will be there. If you’re going to attend, please leave a message!

Where does your Senator stand?

Dear SavetheInternet.com blogger,Net neutrality supporters are gearing up against a Senate vote on Sen. Ted “The Internet is a Series of Tubes” Stevens’ telecommunications bill (S 2686). This bad bill fails to protect Net Neutrality. To preserve Internet freedom, we need to be sure that this bill gets overhauled or stopped in its tracks.

Today, we launched a Senate map that makes it ridiculously easy to a) figure out where your Senators stand, and b) urge them to take a public stance in support of Internet freedom. The goal is to get as many senators on the record as possible before any vote on the Senate floor. You (and your readers) can help the cause by checking out the map and flooding the Senate with calls.

July is a pivotal month. The Senate leadership won’t schedule a vote on Stevens’ bad bill unless 60 senators say they’ll vote for it. Now’s the time to call senators and tell them to support Net Neutrality instead — and to oppose last-ditch industry efforts to push through a bill that more and more Americans are turning against.

We’re not the only ones who’ve been busy; there’s lots of creative work being produced in support of Net Neutrality. Check out this techno remix of Sen. Stevens’ recent speech, a slew of new clips on the SavetheInternet.com videos page and other artistic output at the SavetheInternet.com blog.

We need more creativity like this to call attention to what the telcos are trying to get away with — but eventually it all boils down to what the Senate does. So don’t forget to check out the map, call your Senators, and encourage your friends/readers to do the same.

With your help, we can match the millions of dollars spent by AT&T, Verizon and BellSouth with millions of citizens speaking up for Internet freedom.

Tim Karr
SavetheInternet.com

IgA up

Since I stopped the high dose dex and went to standard dose, remaining on 25 mg of Revlimid per day (21 days a month), my IgA has gone up. So has my m-spike. Not so much at first glance, but it is a 20% increase. I emailed my doc to see about having the stem cell harvest done soon. Don’t get this confused with having a transplant too though. I still haven’t made up my mind about that!