Category: General

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.

Trial

I don’t think I’m going to enroll in that trial. I wrote to Dr. Durie, and he suggested three treatment options for me.

  • Low dose Cytoxan with dex
  • Revlimid
  • Doxil and dex

You might know that Revlimid hasn’t been approved by the FDA for anyone to use yet, but I’ve been told there’s an extended access program that allows some patients to receive it. I’m going to call Celgene Monday to find out more. Also, I was told it should be commercially available in September/October.

Right now, I’m taking nothing. I dread seeing my next labs! Who knows though? Maybe not much will have happened.

Fundraising again

In an effort to raise funds for the IMF, one of the things I’m doing is selling products from a company called Country Bunny. I’ve used them myself, and like them enough that when I need lotion I only buy theirs. Any money I receive on any of the sales from the web site is going straight to the IMF. You can order right from the web with your credit card by clicking below. I’ll report back how much I’ve raised from time to time. Thanks in advance!

If you’d rather just send money right to the IMF, go to their web site and click on “Helping the IMF.” (www.myeloma.org)

My Labs

Sorry! I haven’t been very good about keeping up my labs. I’ll put relevant info into the main blog when I have it.



IgA Up Again

Seems like a broken record. My IgA is up again this month to 1705 mg/dL. The 40 mg of dex just doesn’t hold it back anymore. I suppose it’s helping some, but not enough. I’m thinking of doing the Velcade vs. Velcade + Doxil trial. I just can’t tolerate dex anymore. I thought I was going to give dex pulses one more shot, and I started last night. I simply feel rotten taking dex. I can’t do it again. I don’t care if I never have it again.

Tooth

Last night, I felt like I had something stuck between my lower front teeth. What it was, was pieces of broken tooth! I have an appointment on Thursday to have it examined and have the jagged edges filed down. The thought of having a tooth filed is reminiscent of nails on a chalkboard.