Category: General

I got my last infusion of CNTO 320 a week ago Tuesday. The drug was free of any noticeable side effects. About the only thing I noticed was an increase in cholesterol and triglycerides. It’s not certain what effect the treatment is having on my MM though. This was a phase I trial, so we’re the first humans to get the drug. The doctors think that it may take a while for it to work, so it could be a wait and see situation. I’m not sure how long we’ll wait though. I have a bone marrow biopsy, labs and xrays next week so we’ll see how that goes. I’ve been disappointed in my labs so far though. Before the first infusion, my IgA was in the 1600s. Last week, it was in the 2100s. If the next reports show an improvement or stable disease, I can qualify for more. If not, it’s time to try something else.

Here’s where the difficult choice needs to be made. I can do another trial at UNC. There’s one that I talked about before: Velcade vs Velcade + Doxil. That’s a harsher treatment than I’ve ever had before. It could worsen my PN. Maybe not though. I won’t know until I try it.

BOSTON — A Food and Drug Administration advisory panel has voted to recommend that the agency approve Celgene Corp.’s oncology drug Revlimid, the company said Wednesday.

By Val Brickates Kennedy, MarketWatch
Last Update: 1:19 PM ET Sept. 14, 2005

Trading in shares of Summit, N.J.-based Celgene was halted at $52.91
Wednesday morning, ahead of the meeting. Celgene is seeking to have the drug Revlimid approved for the treatment of transfusion-dependent anemia due to certain blood cancers known as myelodysplastic syndromes.

Although the panel’s vote is not a final decision, the FDA traditionally
abides by the recommendation of its expert panels.

Celgene said that the FDA is scheduled to formally rule on whether to
approve Revlimid by Oct. 7. The company already markets a version of thalidomide called Thalomid, for the treatment of leprosy, and Alkeran, a treatment for the cancer multiple myeloma.

I’m on the CNTO 328 trial, as you know. So far, I’m not sure what to make of the results. My IgA was in the 1600s at the start, then went to the 1800s. Last week it was 2411. Yesterday it was 2052. I suppose we won’t really know whether it’s helped or not until the trial is complete. I have infusion #4 on Tuesday. A few weeks later, there’ll be another bone marrow biopsy and some bloodwoork. I hope it does end up working. I’ve been told it could work very slowly, so my IgA could go down.

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

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?

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.

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.