Category: Myeloma

Myeloma

Aches

I had an infusion of Zometa today and, as always, my left hand and arm ache. I didn’t get to have the IV in my hand like I usually do. The nurse said there’s just too much scarring now and she couldn’t get it threaded. We used my left arm instead. I’ll give that good vein in my left hand a long rest. It’s no wonder. I must have been poked in that hand at least 50 times.

If you get the chance, see the film A Lion in the House, which may be on your local PBS station on Independent Lens.

Stem cell collection scheduled

I have my stem cell collection scheduled. If everything goes according to plan, I would be admitted to Wake Forest Baptist Medical Center on September 20th. I’d have a catheter installed and then be given Cytoxan over the course of a few days. Then I’ll be released and sent home with a growth stimulating factor to inject for a number of days. Maybe a week or 10 days. Then I’ll go back to the hospital for the collection. I asked them to be sure they get enough for 3 transplants.

The catheter might look something like this. It’s surgically implanted and gives them the easiest means of conducting the chemo and apheresis.

I’m hoping the Cytoxan kills off a bunch of the myeloma and can allow me to delay a stem cell transplant for a while. If so, as soon as I relapsed, I’d have the SCT. I’m so worn out from the constant treatment over the last 3+ years.

I’m starting a campaign to raise money for the International Myeloma Foundation. Over time, through this campaign, I want to raise a penny for every stem cell collected and frozen in preparation for a transplant. With your help, more treatments and even a cure can be found. You can donate online HERE.

Non-compliant

I haven’t been complying with treatment this month. Revlimid makes me feel pretty terrible, and I wanted to be able to help my mom through her surgeries and whatever other tx is needed. I do feel better in most ways, now that I’ve been off Revlimid for a month. I’m afraid to say that I didn’t tell anyone I was doing this. If I need to, I’ll go back on it in September. I don’t think it was doing much for me though. Just making me feel sick. I plan on having my stem cells collected soon, and they want the disease level as low as possible for that. I’m confused about whether the Cytoxan plays a role in that. I have an appointment with the “stem cell lady” next week, so I’ll find out. If I need to, I’ll do high dose dex again for a month or so. It seemed to work pretty well for me during January through April, but it was what I’d call a heinous treatment. I feel tired just thinking about it. Like I said before, I’m almost to a point where QOL on treatment is unpleasant enough to warrant a stem cell transplant.

IMF Patient & Family Seminar

We are in Philadelphia, PA, at the IMF Patient & Family Seminar. I haven’t gone down yet to any of the seminars, because they’re for newly diagnosed. This is an interesting city. We don’t have time to do much, since we’re leaving in the morning. Joyce is going to see the Lion King this evening though.

The IMF web site is at www.myeloma.org.

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