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?
Author: Beth
I was diagnosed with MM in January of 2003. I underwent various treatments, including thalidomide/dex, revlimid/dex, dex alone, a clinical trial of CNTO 328, and Velcade, Doxil and dex until late August, 2007, when I had an autologous stem cell transplant after high dose melphalan. I experienced what's known as a very good partial response (VGPR). Since then, my myeloma has been stable.
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.
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!
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!
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.
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.
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)