Late last month I received this e-mail comment from fellow patient Jack Searight, in response to my four part series of articles following my visit with multiple myeloma specialist Dr. James Berenson in Los Angeles. Jack apparently had trouble getting Blogger to accept his comment. From my experience, Jack’s difficulties are not unusual. I think this is one reason more readers don’t comment and participate regularly.
I told Jack I would post this for him soon for all to read. Sorry Jack! This got lost in my “to do” file. Better late than never, right? Here is Jack’s multiple myeloma story:
I was diagnosed in October 2001 by Dr. Berenson. My MM was very far advanced, since (in hindsight) I had had quite active MM for at least 2.5 years before that. Doctor after doctor had missed it entirely. Finally, in summer 2001, a new Doc (a sports medicine Doc) got together a partial diagnosis. He gave me a list of things he thought it might be (MM was one of the possibilities) and began testing for them. Methodically.
This was taking too long to suit me so I went on-line. I found the IMF and joined their ListServ. I asked the ListServ members to recommend the best MM specialists in the LA basin. They gave me Dr. Durie and Dr Berenson. At the time they both were at Cedars-Sinai. Dr. Durie was no longer accepting private patients but was doing consults. Dr. Berenson was accepting new patients and was the Director of the Cedars MM program. I checked my insurer’s PPO list. Dr. Berenson and Cedars-Sinai were on it.
Gee, that was an easy decision to make.
Dr. Berenson told me the bad news. My IgG was very high. My bones were mush. I had 12, count ’em 12, compression fractures of the spine and had shrunk 5 inches. However, my kidneys were in great shape. I dithered a bit about what to do. He must have realized that I wanted the unvarnished truth and that I needed to stop dithering. He told me that he had a Clinical Trial (PS 341, later Velcade) that would be perfect for me. Except my previous Doc had put me on Fosomax and the Trial rules said I must be off bone meds for at least 3 months. He then said: “And frankly, you don’t have 3 months to spare.”
That did it. I stopped dithering and started listening. He said that he was moving away from using Stem Cell Transplants as a first line therapy but that I needed radical treatment quickly and an SCT was all that was available. So I started induction therapy (VAD) for an SCT and had it in Feb-March 2002 at Cedars-Sinai.
I also had 2 vertebrae repaired at Cedars with Kyphoplasty in Dec 2001 in between VAD treatments. It worked extremely well and did not interfere with my MM treatments.
I went through the SCT very well. 14 days and no fevers. My wife (a nurse) stayed in the isolation room the whole time taking care of me. But the SCT did not work. When I was released my IgG was the same as when I went in. 2 weeks later my IgG spiked very high and I came down with a simultaneous life-threatening Hepatitis B infection.
It seems that I had a low-level asymptomatic Hep B infection which got kick-started when the SCT chemo knocked out my immune system. Dr. Berenson consulted Dr. Wolff, a Cedars Hepatologist, and they put me on Epivir HBV (an antiviral) and Dex. My numbers dropped like a shot for BOTH diseases Both Docs were amazed. By July my liver numbers were back to normal and by August I was in a Very Good Partial Remission (VGPR). That remission lasted 3 years with only a few tweaks.
Since my near disaster of an SCT Dr. Berenson has stopped recommending SCTs as a first line therapy. He favors using the novel agents (Velcade, Revlimid, Thalidomide, etc.) first and using SCTs if and when those fail. I agree with him generally but wonder if my remission in 2002 depended on the failed SCT rooting out the Hepatitis as well as the MM. I guess we’ll never know if that sequence of events was necessary.
Since then it has been up and down as usual with MM. I have ONJ but I still continue with Zometa evey month. The ONJ is a minor annoyance compared to mushy bones: now that my bones are hard again I don’t want to take any chances with them. I have done 5 Clinical Trials with Dr. Berenson; 3 were OK, 1 was bad, 1 was a near disaster. (It is not good to personally add a line to a drug’s list of dangerous side effects). But every time I have had a bad spell, Dr. Berenson has recommended a treatment that worked for me.
I am now on 50 mg of Thalidomide and 20 mg of Medrol every other day. The Medrol makes me diabetic but only on the days I take the Medrol. Oral diabetic meds control my blood sugar.. Dr. Berenson likes Thalidomide and so do I. Yes it has some nasty side effects but my blood work is wonderul. I have some bad PN but it is the numbing type not the painful kind. Fatigue is a problem but I’m working on that.
I notice that a lot of the people who are so strong on pushing SCTs are those who are linked to a facility with SCT capability. I’m not accusing them of a conflict of interest, but if you have a big hammer problems tend to look like ten penny nails. Dr. Berenson prefers using thumb tacks as much as possible.
Thanks for sharing, Jack! I will work on getting “caught-up” in preparation for a busy ASH conference in a few weeks.
Feel good and keep smiling! Pat