Category: General

Last week I had a phone consult with Dr. Durie. For those of you who haven’t heard of him, he is a world-class MM doctor. In fact, he developed the first staging system for MM, called The Durie-Salmon Staging System.

Dr. Durie said that my MM appears to be low grade, or slow moving. This made me feel better. It means I could have many years. :) He also believes that MM treatment shouldn’t be worse than the disease. For example. when someone has a low grade MM — one that doesn’t produce symptoms — harsh chemo may not be the ticket. For me, this is the case. I seem to be very sensitive to drugs, therefore my doctor has concerns about high dose chemo. There’s often talk about high dose chemo and stem cell transplant (autograft) on the mailing lists. For me, this isn’t the answer just yet. I told Dr. D. I feel a lot of pressure from my peers concerning SCT and even tandem SCT. He made me feel better about the choice I’ve made, which is not to have SCT at this time or in the foreseeable future. Wow. That word looks like it has too many Es. I have to mention that Dr. O. has never pushed me towards SCT either. He is respectful of my wishes.

We also talked about Zometa. He suggested that I switch to Aredia. Zometa has had some adverse publicity concerning osteonecrosis of the jaw. If you haven’t heard of this before, and you receive Zometa, please read this.

Dental Health and Osteonecrosis of the Jaw, by Novartis, the manufacturer of Zometa.

You may have seen an article in the news touting the benefits of tandem SCT. Well, the title says that, but it’s misleading. The title says, “Study Confirms Effectiveness of Double Autografts in Multiple Myeloma.” The article says, “There is evidence that this prolongs the time to disease recurrence, but there is little evidence that it improves survival, especially if a second transplant is carried out at the time of disease progression.” And, “the primary beneficiaries of a second transplant were those with less than a very good partial response to the first transplant. Patients who had a CR after the first transplant did not have an improved outcome.” Also, “This study confirms the results of the French trials showing that a second transplant benefits primarily those who are not in CR after the first transplant. This indicates that patients who achieve a CR with the first transplant can delay the second transplant. However, it may not be a good idea to delay the second transplant for poor responders, as both the French and Italian study suggest a compromise in overall survival.” Some people (including doctors) will not read these comments in the abstract, and they’ll push patients into tandem SCT, whether they’d benefit or not. Please do your own research and decide for yourself.

I’m only trying to say that SCT is not right for me at this time. If that’s your chosen path, and you’re committed to it, then it is right for you, and that’s what’s important to you!

I sold one of my guitars on ebay last night, and I really underestimated the shipping cost. The main reason this happened was because I was going to package it myself. Instead, I went to the UPS Store. I’m pretty sure I’m not going to do that again. The first time I was there, I just wanted to see if I could buy a box. They had one, but I was told it would cost me $47.00! Yikes! The clerk said that they could pack it for me for less. I believed that, and went back later with my guitar. After the deed was done, I ended up spending $77.65 to ship that thing, when I had only allowed $49.00. Ugh. The breakdown is: $24.95 for the box, $37.70 for the shipping and $15.00 for the guy to put it in the box. Yes, that’s right. $15.00. What it all means is that I got about $30.00 less for the guitar than I was supposed to. All because it was hard to find a box. :(

If you have HBO, I hope you didn’t miss the last Real Sports. One of the segments draws attention to the killing of greyhounds that aren’t fast enough to win craploads of money for their owners. Thousands are killed every year. If you’re reading this, I’m hoping you’ll follow some of the links I’ve provided and decide to boycott greyhound racing. Let’s get this disgusting industry shut down.

http://www.greyhounds.org/
http://www.adopt-a-greyhound.org/
http://www.greyhounds.org/gpl/contents/adoptlinks.html

Dog Fears

Despite the lack of a widespread fan base, and in the face of constant protests by animal rights groups, greyhound racing is a healthy industry in the U.S., with millions of dollars wagered each year at tracks in 15 states. Breeders in search of champion-caliber dogs produce thousands of greyhounds each year, a small percentage of which are deemed worthy of high-stakes races. When a dog is no longer profitable, there are few options for its future. Some find a home through adoption, but those who go unclaimed are destroyed. With the supply of dogs being bred far outweighing the demand, an alarming numbers of dogs are put down each year. Correspondent Bernard Goldberg, in collaboration with Sports Illustrated, takes a probing look at the world of greyhound racing.

Correspondent: Bernard Goldberg.
Source: http://www.hbo.com/realsports/

I took my 40 mg of dex last night, and then let myself stay up until 4:30 am before I took xanax to help me sleep.

Why don’t I take it midnight? I don’t know, except that dex can make you do weird things. I got involved in cleaning my stove, includeing the burners and the little pans underneath that trap all the gunk from cooking. My brother, a chef, is staying here for a bit, and he is one messy cook. Normally, I keep the pans all shiny! When they get bad, I buy new ones. :)

I also started to post some things for sale on ebay that I no longer want or need. If you’re in the market for a guitar, let me know! I have a few I want to sell. My fingers have such a weird feeling in them from taking the Thalomid, that it just feels very uncomfortable to press down on the strings. I can’t picture myself just playing slide guitar.

So, anyway, I didn’t sleep enough. I even took another xanax when I woke up too early, but it just didn’t do the trick. I’m not the napping kind of person, so I’m probably just up for the day.

I had my monthly appointment and labs about 2 weeks ago, and am still stable. I would love to see a complete remission, but being stable is good enough (considering the alternatives). My IgA is at 1183 mg/dL, and that’s exactly what it was last month.

I have a 2000 Chevy S10 for sale. See it here: http://home.pinehurst.net/chevy/

I signed on this thing for my brother, then he quit his job and left town! I have to get rid of it!

There’s a condition called peripheral neuropathy that I have as a result of one of the treatments I’ve had. For about 10 months, I took a drug called Thalomid, and it caused nerve damage in my feet and hands. Just recently, my doctor told me to cut out my B-6 supplementation. I have done that, and am hoping it will result in lessening the severity of the nerve damage. Keep your fingers crossed!

I stayed up too late last night (until at least 3:30 am), so I slept until noon. The day flew by after that. I did some grocery shopping, went to my office and got a monitor to replace one that was broken at mom’s house (family business, so I’m not stealing from my employer – I am my employer). I walked the dog a little over a mile, and then came home.

Since I took dexamethasone (dex) last night, I’m very tired now. It won’t be long before I go to sleep, but I’m probably going to need some help anyway. I take xanax to help me sleep and stop the jitters from the dex.

I’m about to do some time on the Nordic Track Ellipse. Since I have high blood sugar when I take dex, exercise is one of the things that helps keep it down. It works pretty fast too. I wonder if this would be the case with type II diabetes too? My endocrinologist doesn’t call my high blood sugar diabetes, he calls it a metabolic disorder.

I’m going to be switching my treatment facility with the hope of saving some money. I do have insurance, but I have to pay 20% of the cost of the treatment, Zometa, which costs over $2,000 every 4 weeks. If you don’t have insurance now, do whatever you can to get it. Cancel your cable and cut back on anything else you can. It’s more important than you could ever imagine until something like cancer happens to you. If I didn’t have insurance, I’d have had to sell my house and car by now. Don’t count on the government (or anyone else) to care what happens to you. I’m serious about that. I got cancer when I was 41 years old, and am 43 now. Multiple Myeloma is a chronic cancer. I’ll need treatment the rest of my life, and eventually will have a stem cell transplant, which can cost up to $150,000. Please take my word for it and get health coverage if you don’y already have it. An illness will be financially devastating.

Ok, I’m going to hit the Nordic Track!