Is it the season?

It seems like it must be SCT season. Lots of people on the list are going through them right now. Dan is home from his, after 17 days in the hospital. I wish I wasn’t so afraid of the process. In some ways, it would be good to get it over with. I guess I want to know how my disease responds to treatment and have some idea about relapse times. I know someone who had 2 years of remission from VAD. I would guess there are people who have had lengthy remissions from thalidomide and dex. If that’s possible, then I want to avoid the toxicity and complications that come along with SCT as it’s currently done.

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No rush

My doctor says there’s no rush to worry about stem cell transplant right now. He thinks my MM is stable, and the IgA is slowly going down as a result of 5 months of the thal/dex combination and Zometa.

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IgA

Doc says IgA was 781, so it has resumed its downward course somewhat. Lots better than where it started, at 4625 at the end of January!

I’m hoping it’s the dexamethasone that’s largely responsible, because I’m afraid I might have to stop the thalidomide before it causes too much damage. I think I have the start of PN in my hands & feet.

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Monthly appointment

I had my monthly appointment with Dr. Orlowski at UNC yesterday. I expect to hear that my IgA is down again, based on the fact that my total protein is down again (6.5 g/dL). Albumin is also down. I’ll post the whole report once I have all the numbers back.

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From the Cleveland Clinic Multiple Myeloma News Letter

Dear subscribers, one of the key issues that we are faced with at the
Cleveland Clinic is where do we stand from the issue of using vitamins.
Vitamins are critical for health and disease, however are tricky to use as
too much could be problematic and could result in significant side effects
that at some stage could be irreversible.
The following two links will address the role of vitamins and iron in
anemia, as well as a general view of vitamins in general.
Our group at the Cleveland Clinic hope that this information will be
helpful to you and your loved ones.

http://www.clevelandclinic.org/myeloma/anemiaANDvitamins.htm

http://www.clevelandclinic.org/myeloma/vitamins1.htm

Thanks again for your interest in The Cleveland Clinic Multiple Myeloma
Center.
Mohamad Hussein

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Web site

I’m trying to get more information to build a web site. Please have a look and contribute any information you have that you think could help others. http://www.mmsupport.net/

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Dan’s stem cell transplant

Dan B. is undergoing his SCT now in Utah. To read about his experiences, you can go to http://www.mustard.com/myeloma.html.

The stem cell transplant is a very scary thing, if you ask me. It can provide some years of event free survival. The average is about 18 months. Some people get more, some less. A few get no benefit at all. There’s no way to predict. However, the transplant doctor I met with at UNC said that my prognostic factors and good health (other than cancer) give me a good chance for a nice remission after SCT. No guarantees, of course.

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Catching up

Monthly dex pulse: On September 1st, I started monthly dex pulses. I used to take 40 mg once weekly. It wasn’t as bad as I remembered my initial dex pulses to be. When I first started taking it in April, it was 4 days on, then 4 days off (4 times). I saw my acupuncturist 3 of the 4 days, and I was able to sleep every night without drugs for at least 4-5 hours.

Big storm: Last Thursday there was a big storm that took out my wireless router, my TiVo/satellite receiver, broadband modem and garage door. I spent an hour on the phone with tech support. I don’t live inside my own DSL service area, so I have to get Internet service from someone else. I already knew that the ethernet interface on the modem was bad, but you have to jump through all kinds of hoops to convince them that you didn’t do something stupid that caused your service outage. DirecTV has a special deal on the TiVo/receiver replacement and installation, and someone will be here Wednesday to install. I’m so used to being able to fast forward through commercials!

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Healing prayers

According to a recent article in Alternative Medicine magazine (What’s behind the power of prayer?, Sept. 2003, pp.66-70, 106-108.), there’s scientific evidence to show that prayer has healing potential. The article offers 4 suggestions (p. 70):

     1. Don't let "I'm not religious" thoughts stop you.
        You don't have to be religious to pray or meditate.  Meditation is as simple as silently
        repeating a mantra - a word or sound like "om," "one," or a chant - and focusing on the
        in-and-out tide of breathing.  When your mind wanders, gently return to the mantra.
     2. Keep more formal prayers simple and loving.
        "Help!" counts as a prayer.  Or you might just ask God or a higher power to heal mind,
        body, and spirit.  When Catherine Karas, an energy healer based in New Jersey who
        volunteers in an NIH study, prays, or meditates, for patients, she invokes energies
        and calls in "guides." And then, she says, "I surrender to a higher power for the highest
        good."
     3. Consider joining a group or congregation that prays.
        Not only can it help make prayer a regular part of your life, it's got solid scientific
        backing: In several studies, membership in such a community has been linked with good
        health.
     4. Make prayer or meditation a habit.
        Aim for at least 10 minutes twice a day, and don't just pray when you're sick or in
        trouble.  A steady practice of prayer can reduce stress, help prevent stress-related
        illness, and make it easier and more natural for you to pray when times are hard.

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Pressure point for hiccups

There are lots of drugs that produce a side effect of hiccups, and dex is one of them. My acupuncturist recommended that I try applying pressure to an area of my wrist to see if that would stop the hiccups I get when I’m on dex pulses. I did try it, and it works for me! Here’s a picture of the area of my wrist that I apply pressure to with the thumb of my opposite hand. Apply the pressure until you feel a bit of an ache. Once I do this, my hiccups stop after just a few more. It’s like magic.

It’s the same place where the Seaband device applies its pressure to help prevent seasickness. He also said that Seaband is good for use with chemo induced nausea.

Basically, it’s the underside of your wrist, beneath the palm and toward the center of the wrist. Apply pressure with your thumb (do both wrists if the first one doesn’t provide relief). I get relief within 2 hiccups!

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