Joyce Wells appeared on “Tarheel Talk” this morning with Dr. Robert Orlowski (UNC)! They talked about MM.
Way to go, Joyce! You did a great job. How many mg of xanax did you take before the show? :)
Category: Myeloma
Myeloma
I received a note from one of Chris’s friends in New Zealand today that Chris has passed on. It appears Chris had a heart attack, and that’s all I know at this time. Please consider making a donation to the IMF so we can find a cure for MM and they can continue to provide excellent services for patients and caregivers. He would be happy for that, for all of us who are still here. There’s a link to make a donation to the left.
Unfortunately, treatments for MM can cause damage to vital organs, including the heart. MM itself can cause damage to organs and systems. Please make sure to get regular checkups, and include visits to the cardiologist. In fact, a recent study showed that patients treated with a specific drug called doxorubicin can experience a decline in heart health over the years. Please keep yourselves healthy in preparation for a cure!
I had an infusion of Zometa today and, as always, my left hand and arm ache. I didn’t get to have the IV in my hand like I usually do. The nurse said there’s just too much scarring now and she couldn’t get it threaded. We used my left arm instead. I’ll give that good vein in my left hand a long rest. It’s no wonder. I must have been poked in that hand at least 50 times.
If you get the chance, see the film A Lion in the House, which may be on your local PBS station on Independent Lens.
I have my stem cell collection scheduled. If everything goes according to plan, I would be admitted to Wake Forest Baptist Medical Center on September 20th. I’d have a catheter installed and then be given Cytoxan over the course of a few days. Then I’ll be released and sent home with a growth stimulating factor to inject for a number of days. Maybe a week or 10 days. Then I’ll go back to the hospital for the collection. I asked them to be sure they get enough for 3 transplants.
The catheter might look something like this. It’s surgically implanted and gives them the easiest means of conducting the chemo and apheresis.
I’m hoping the Cytoxan kills off a bunch of the myeloma and can allow me to delay a stem cell transplant for a while. If so, as soon as I relapsed, I’d have the SCT. I’m so worn out from the constant treatment over the last 3+ years.
I’m starting a campaign to raise money for the International Myeloma Foundation. Over time, through this campaign, I want to raise a penny for every stem cell collected and frozen in preparation for a transplant. With your help, more treatments and even a cure can be found. You can donate online HERE.
I haven’t been complying with treatment this month. Revlimid makes me feel pretty terrible, and I wanted to be able to help my mom through her surgeries and whatever other tx is needed. I do feel better in most ways, now that I’ve been off Revlimid for a month. I’m afraid to say that I didn’t tell anyone I was doing this. If I need to, I’ll go back on it in September. I don’t think it was doing much for me though. Just making me feel sick. I plan on having my stem cells collected soon, and they want the disease level as low as possible for that. I’m confused about whether the Cytoxan plays a role in that. I have an appointment with the “stem cell lady” next week, so I’ll find out. If I need to, I’ll do high dose dex again for a month or so. It seemed to work pretty well for me during January through April, but it was what I’d call a heinous treatment. I feel tired just thinking about it. Like I said before, I’m almost to a point where QOL on treatment is unpleasant enough to warrant a stem cell transplant.
Making a difference against multiple myeloma
Time is something Kathy Giusti has not wasted. She’s set out to find a cure for multiple myeloma; not just by raising money, but helping to solve one of the biggest obstacles in medical research. NBC’s Ann Curry reports.
http://www.msnbc.msn.com/id/14307508/from/ET/ (Video and transcript)
We are in Philadelphia, PA, at the IMF Patient & Family Seminar. I haven’t gone down yet to any of the seminars, because they’re for newly diagnosed. This is an interesting city. We don’t have time to do much, since we’re leaving in the morning. Joyce is going to see the Lion King this evening though.
The IMF web site is at www.myeloma.org.
I just got email from a nurse at Wake Forest:
Your IgA was >805, M-spike is back already and shows spike in beta gamma of .30, and gamma of 0.18.
I’m sure the “>” is a typo. The lab report gives a distinct value when the number is that much. The only time I’ve seen such a thing is when my IgM, for example, was too low to measure. The lab reported “< 6." Anyway, next month we'll schedule the stem cell collection. My doctor said I can take a little break after that. My IgA and m-spikes have been going up the last 2 months and were stable the 2 months before that. My lowest m-spike during this treatment was 0.3 g/dL and the lowest my IgA got was 489 mg/dL. So, in a few months' time, the m-spike has gone up to .48 and the IgA to 805.