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.
There’s now a refrigerator with a built-in TV. For about $3,200.00, you can be the first in your neighborhood (if you hurry) to have one of these. I’m sure they’ll be rolling out the doors of your local appliance store in record numbers. I saw an ad for this on television, and the pitch was that this refrigerator brings together the two things you love most: food and TV. I’m glad this thing is beyond what most families can afford.
The refrigerator is a product of LG.
The last time my sister visited from Virginia, we did some searching on the web to find out if the University of Virginia has a BMT/SCT program. If they did, it would resolve one of my problems concerning the transplant process. Whether it’s done inpatient or outpatient, a caregiver is required. In my case, the fact that I don’t live very close to even the most nearby BMT centers (Duke or UNC), means that my caregivers would need to relocate too. Of course they would do whatever’s required, but, if that could be avoided, we would all feel better.
UVA does have a transplant program. I have an appointment for a consultation with Dr. Ross on August 2nd. I also have an appointment next week with with Dr. Comeau at UNC. I want to choose the place that’s best for me overall, so I’m looking at a few different places. I emailed Duke, but got no reply, so I will call them to see if they can make an appointment for me there too. I have to get a list of my questions together. I don’t know if other people “shop” like this too, but it’s a huge deal to me. I’m not in a dire medical situation, so I have the time.
I want to see the facility and meet the staff. I want to know what their high dose chemo regimen is and what other meds they prescribe. How do they handle emergencies? How long will I be hospitalized?
If you can think of other questions I need to ask, please let me know! I have a week before my first appointment.
I spent most of the day sitting. I was either driving or waiting for a doctor or an infusion. I had Zometa today at UNC, and I liked it there. I have been having the infusion every 4 weeks in Pinehurst. The facility in Pinehurst is very nice, but I need to save a few bucks, and the cost is higher there. Believe it or not, it’s over $2,000.00 for a 9 mg dose. At UNC I think it’s under $1,800.00. The nurses at UNC a very nice, and they have a great sense of humor. I went to have my infusion with J.W., and we spent most of the time talking to the nurses and to each other.
My IgA was up a bit – about 200 mg/dL. I know why. I cut my dex from 2 days a week back to one. Dex is a very hard drug to take, and it seems to get harder for me the longer I take it. The thought that I may have to take it for years sort of makes a stem cell transplant look appealing.
I refinanced my house. I started trying to do it back in March, when rates were really low. The mortgage company I chose seemed to bumble everything. I couldn’t believe it. By June 1st I decided they needed the boot. I want to recommend my new company for anyone who’s looking for a mortgage. It’s called Countrywide. It took them no time at all to get me refinanced.
For a while now I’ve had a sore left foot that seems to get worse when I walk. I had worked my way up to walking 2 miles a day, and I had to cut back to a mile a day due to the pain. When you have MM, you worry about anything that hurts, and the best thing you can do is have it checked out. I had it looked at over a year ago, and it was arthritis.
The dex seemed to take care of it pretty well. When dex no longer gave relief, I saw that as a sign that I needed to go back to the doctor. I saw a foot & ankle specialist in Pinehurst, and he x-rayed my left foot again. It’s still arthritis, but he’s also going to do an MRI to make sure there’s nothing the x-ray isn’t showing. He said the x-ray showed no lesions, for which I’m grateful! I just never understood that arthritis was so painful! Now I really do, and I sympathize with the folks who have it.
I haven’t been prescribed any treatment for it, and I don’t really know what that would be. Do they use Celebrex for that? Is it my imagination, or have I read that Celebrex is also used to treat MM in some cases?
I was up too late because of dex, and now I’m up too early. I really better try to sleep again. I can’t get by on little sleep like I could when I was younger. If I don’t get at least 8 hours of sleep a night, I just feel terrible. Remember when you were 20 and could get by on no sleep, or just a few hours? Those were the days!