Category: Myeloma


Had my first dose of Velcade today

I went to Dr. Peterson’s office for my first dose of Velcade. Joyce took a picture on my phone, but I have NO idea how to get it off of there. Nothing I’ve tried has worked. I’m going to be one of those people who has to go into the phone store to ask for help.

Before I had the Velcade, I had some saline, 10 mg of IV dex and some Aloxi. If you know me, you know that I make them do everything they can to make sure I don’t vomit. I have emetophobia, and, for me, vomiting is almost as bad as dying. If I feel icky, I have compazine and ativan here at home to take. I do have a headache. I think that’s from the Aloxi. I kind of have an acidy feeling in my stomach. I had that with Cytoxan. I think I’m really prone to that. Even Zometa gives me indigestion. Anyway, so far, there’s nothing to report. I’ll go back Friday for more Velcade and some Doxil. I’ll keep going for up to 8 cycles if it works.

Effectiveness of bortezomib (Velcade)

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

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: 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!

The “eyes” have it

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.

A couple of things

I got the results of my labs from last week. My IgA is at 2116 mg/dL (approx 1300 in October and 1500 in November) and my m-spike is 1.9 g/dL. I had this fantasy that my MM would be stable and I could delay treatment further.

Susan is having her SCT now. She had high dose chemo on the 27th and 28th, and the stem cells were reinfused today. She’s blogging about her experience at Stop by and wish her well.

I noticed from my web stats that someone searched on the cost of neupogen. It’s expensive! My 10 day supply of neupogen and catheter care supplies was in the neighborhood of $10,000. This is why I take keeping my insurance very seriously. Even if you have insurance, cancer can be a huge financial burden. I can’t imagine what people go through when they don’t have coverage.

This is the regimen I’ll be starting on the 9th: Velcade 1.3 mg/m2 on days 1, 4, 8, 11. Doxil 30 mg/m2 on day 4 after Velcade that day. I had a bad dream about it a few nights ago. My nightmares are always about being in the hospital and/or having chemo. I usually find out that I was given the wrong dose or the wrong drug, or it was administered improperly (in these dreams).

In the days before cancer, I’d have plane crash dreams. I don’t think anything’s ever going to stop the “back in high school” dreams, where I’m at my current age and somehow I end up in high school again because I was mistakenly graduated. All I can do is protest that it doesn’t matter anymore because I have a university degree and, besides, I’m old enough to drop out anyway. I can’t just walk away, because I’m at boarding school in Wisconsin and I have no car or money. Oh, and I still have the “stuck in San Francisco without any money” dreams.


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.

Thanks for the article

I wanted to say thanks to Matt Moriarty at the Pilot for helping to raise awareness about MM by writing an article about my campaign to raise funds for the International Myeloma Foundation (IMF). If you’re local, and would like to make a tax deductible donation, you can click on the link to the left or drop your check made out to the International Myeloma Foundation at our office at 285 West New York Avenue in Southern Pines. The IMF is rated 4 stars by, so you know your donation will be put to good use.

I wanted to make a correction or two to the article content. I’m not sure how I came to have myeloma. One of the possible causes of MM is exposure to too much radiation, but (as far as I know), I’ve never had anything more than xrays. I did work in an industry for a short time in which a lot of toxic chemicals are used.

My stem cells are frozen at Wake Forest University Baptist Medical Center in Winston-Salem. The procedure to have them reinfused is non-invasive. The cells are thawed and then returned to the patient intravenously.

Advances in cancer research are being accomplished almost daily. There are some who believe a cure for MM is within the realm of possibility in the not to distant future! The good news about much of this research is that it can be applied to other diseases. Velcade, a proteasome inhibitor approved for MM, is now being tested for use against lymphomas, leukemias, lung cancers and others.

Next appointment

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).