Beth Morgan Multiple Myeloma Treatment Blog
My life as a myeloma patient for almost two decades
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.
Yes, I really have some Procrit batteries. They came with a tape and tape player Procrit provided for a time to cancer patients to help teach relaxation techniques. I’m not sure why they needed the branded batteries.
Feel free to use the image, but I must ask that you not link to it (it messes up my stats). Instead, save the image and upload it to your own server.
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.
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 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 http://susansjourneywithmyeloma.blogspot.com/. 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 can’t believe it. Another year is almost over.
I haven’t written much in the last several days. A lot’s been going on, but I haven’t had time to write. And, my typing finger is sore from work. :)
I had an appointment with Don Gabriel, a transplant doc at UNC. He’s a very nice guy, and I liked him instantly. I’ve been researching a potential problem he brought up, but have discovered that it’s not a problem at all. Some doctors believe that, to have a successful stem cell transplant, the cells must be harvested when the % of plasma cells in the bone marrow is below a certain number (like 20%). Mine were at 30% at the time of my harvest. I was very worried that I might have to go through the harvest process again, but I put in an SOS to the IMF and was assured that I’ll be ok to go ahead without a second stem cell collection by members of the scientific advisory board. Now my questions are: Do I have to have more treatment before the SCT? Can I use just melphalan alone, since cytoxan didn’t have any effect on my myeloma?
I’m scheduled to begin Velcade + Doxil and possibly dexamethasone on January 9th, 2007. Of course, I’d be happy to find out that I didn’t need additional treatment before the high dose chemo, but I’m guessing it’s not likely. It’s all getting closer, and I’m nervous and afraid.
In the mean time, I’m going to try to forget that I have cancer. I’m just going to enjoy this treatment-free time.
Oh! For those of you who wonder about this… when you stop dexamethasone, you do lose weight (if you gained it from the steroids). Without trying, in my case, which is cool. I still have the moon face. I wonder how long it takes for that to go away? Anyway, I lost just under 25 lbs so far. I’m guessing the chemo and the SCT will melt away the pounds as well, but I don’t recommend it!
Amneris Solano, thanks for the very nice article you wrote in the Fayetteville Observer. Thanks, Matt Moriarty, for the article you wrote for the Pilot. I hope we’re successful in raising the money we need for the IMF.
That’s what Peter Boyle’s character, Frank Barone, used to say on “Everybody Loves Raymond,” a CBS sitcom which had its last season last year. Peter Boyle, who suffered from myeloma, died on December 13th in New York City. His family has asked that donations be made in his memory to the International Myeloma Foundation.
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.