Month: August 2005

Ride to Raise Money for the Multiple Sclerosis Foundation

A friend is trying to raise some money to benefit the MSF. I hope you’ll consider sponsoring him! Here’s his info:

Since the beginning of April, I have been training to ride the MS150, which is a 150 mile bike ride in New Bern, NC on September 10th and 11th. Training has consisted of riding 3 days per week, for approx. 2 to 5 hours per ride. The ride takes place over two days, riding 75 miles each day. The purpose of the ride is to raise money for the Multiple Sclerosis Foundation. My team and I are asking for your support. In order to pledge, please follow these simple instructions:

1. Go to www.nationalmssociety.org/pledge
2. Under “Participant Info”, simply enter my name. You may also enter our team name, “Hill Raisers”, but this is not required.
3. You will then be prompted to choose whether to e-pledge, visit my personal page, or visit my team page. I recommend you visit my team page (it has a picture of us, and a story about our training).
4. From the team page, you click on the heart next to my name, and follow the instructions from there.
5. You and I will both recieve an e-mail confirmation of your tax-deductible gift.

Or, if you prefer, you may write a check made out to the National MS Society and I will give you a receipt. Please include my name and “MS 150” in the memo line.

Thank you so much for your consideration, and please don’t hesitate to ask me anything!

Kevin Gantt

Is it Steroid Withdrawal?

Since I stopped taking dex about 6 weeks ago, I’ve noticed an increase in aches and pains, including the neuropathy. My RLS is also worse, and my allergies are unbearable at times! I mentioned this to the lead doctor on the study team, and he thinks it’s steroid withdrawal. It’s a miserable condition, let me tell you! It’s making me want to take steroids again, so you know how bad it must be. I can’t do it though, because it would invalidate my trial results. I just have to bear it. Has this happened to anyone else?

Anemia

I had a bit of anemia last week but, according to the doctor, my counts have rebounded. I’m glad about that. In the entire time I’ve been dealing with this cancer, I’ve managed to keep normal CBCs. In fact, my doc says they’re better than his.

One thing though… My white count tended to be a bit on the high side. We always assumed it was the dex. Not so, in recent times. It turns out I had UTI. After I was treated with Cipro, my WBC went into the normal range.

Fear of Cancer

A friend died today. She had been fighting ovarian cancer for about 5 years, I think. She had been through every kind of treatment you can imagine, from chemo to surgery and radiation. Last week I sent her email, apologizing for my not having called her. I told her I was afraid to call, because I was terrified someone would answer the phone and tell me she wasn’t there anymore, that she had died. Now I feel terrible that I didn’t call more often.

I understand something I didn’t quite get before. The same kind of fear that prevented me from calling my friend, Zoe, is what made some of my other friends not want to call me anymore when they found out I had cancer. I didn’t see myself as being the same as they were, but I now know that I was behaving just as they were. We’re all afraid of being hurt by the news that someone has died, I think. I know I am. That stopped me from being a good friend when she really needed a good friend. I have made a promise to myself that I will do better from now on. Life’s too short.

Started the CNTO 328 Trial

I started my treatment with CNTO 328 yesterday. It’s a monoclonal antibody against interleuken-6 (IL-6), which is a major growth factor for MM. The idea is to starve the cells so they die off. Since I’m in a trial, I have tons of tests done. My first infusion was yesterday, and blood was drawn every few hours. I went back again today for more, and will go again on Thursday. I’ll have an infusion every other week and go for labs on the weeks in between. During the study, I’ll actually only receive 4 infusions. They did say that any patient whose disease responds to the drug can continue to receive treatment.

I’ve had no noticeable side effects, and the doctors and staff all told me none of the other ptaients in the trial here have either. I can’t wait to see if this stuff helps!

BMB

I had a bone marrow biopsy at UNC yesterday, and it was so much better than the first one I had! I was terrified, because my first one was such a terrible experience. It felt like brutal attack compared to the one I had yesterday. I’m glad to know they don’t always have to be pure torture. I’m not saying it was a pleasant experience though! I don’t know anyone who has enjoyed a bmb. I did get up a little too soon, and that resulted in some bleeding, but they redressed the wound and I stayed down for about 1/2 hour. Everything was ok.

I’m just a bit sore today, but nothing like I was back in 2003. I’d swear that I’m still hurting from that first BMB!

CNTO 328

Yesterday I signed the consent forms to be enrolled in a trial of a monoclonal antibody to IL-6, CNTO 328, made by Centocor. Since IL-6 is a growth factor for MM, the idea behind the antibody is that the MM cells will eventually die off. I’ll have to read up some more on it. I have to get ready to go for Zometa, and will write more when I get back.