Category: Myeloma

Until I just did some reading, I hadn’t realized that Velcade doesn’t work for about 2/3 of us. I have been told by my doctor, however, that it does seem to work especially well for IgA MM patients (I’m one of those).

“Bortezomib seems to work in about one-third of patients who use it, but we have not been able to predict which ones,” says the study’s lead author, Leif Bergsagel, M.D., a hematologist at Mayo Clinic Arizona. “We now have identified a group that will likely respond because these nine mutations seem to be present in at least 25 percent of newly diagnosed patients.” From http://www.mayoclinic.org/news2006-rst/3817.html

The combination of Velcade + Doxil does have better results in people who respond to it. Based on a study conducted at UNC and other places, Dr. Orlwoski reports, “the combination group’s median time to progression – the time interval between the response to treatment and the time the disease starts to show evidence of growing or recurring – was 9.3 months, while those on Velcade alone progressed after 6.5 months.”
From: http://www.unchealthcare.org/site/newsroom/news/2006/Dec/myeloma. One question I have to remember to ask about this is, is this TTP after the 8 21-day cycles of treatment?

I still haven’t decided whether or not I’m going to add IV dexamethasone to the Velcade/Doxil regimen. I have until Tuesday to decide.

I hate to admit this, but I’m envious of the people who have remissions from their first line of treatment. Any treatment, to be honest. I’m secretly hoping for such good results from Velcade that I’ll decide to wait for relapse to have an SCT. What? It could happen!

I had an appointment with an eye doctor (MD) Friday. It had been almost 4 years since I last had my eyes checked. It’s no real surprise that I have developed a cataract at the back of the lense of one of my eyes. Long term use of high doses of steroids can do that. In fact, she said that they can grow rather quickly. If I go back on steroids again I need to have my eyes checked more frequently. I’m really not concerned about it. So NOT concerned, that I can’t even remember which eye she said was affected. It’s just another one of those things that makes me feel about twice my age.

It was such a nice day today that I worked out in the yard in shorts and a short sleeved shirt. I hope the rest of the winter is this mild.

I meant to post this earlier. When I had the Cytoxan back in October, I was worried about the possibility of nausea and vomiting, so I asked for lots of meds to help prevent it. It was 100% effective. The worst side effect I felt was reflux that night.

Ondansetron (Zofran) – 8 mg tabs. I think I had 3 a day.
Dexamethasone – 2 mg tabs
Prochlorperazine (Compazine)- 5 mg tabs
Lorazepam (Ativan)- inj 0.5 ml

When I went home, I had Ativan and Compazine to take every 4-6 hours. That helped a lot, because I felt somewhat queasy for a few days after.

If you’re going to have chemo, and are worried about the nausea & vomiting that can be a side effect of many of these drugs, speak up ahead of time and let your doctor know that you want lots of drugs to try to prevent it. Why suffer? Oddly enough, some docs/nurses wait until you report feeling nauseated before they give anything. I think premedicating and staying on the anti-emetics for as long as needed is the way to go.

I have my next appointment to check up on things on Tuesday at UNC. I’m going back to see Dr. Orlowski. I originally switched to Wake Forest so I could get Revlimid before it was approved by the FDA. There are a variety of reasons why I decided to go back to UNC.

Anyway, I haven’t had any treatment since the chemo in October, and this is the longest I’ve gone without since 2003. It feels wonderful not to be taking drugs, and I’m trying not to think about what the myeloma might be doing. I’m just trying to enjoy the time off, especially from steroids (dexamethasone).