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.
Well, I got my lab results back, and I’m not going to skip dex this week. My IgA is up from 1087 last month to 1417. Normal range is 40-390. So I don’t want to skip again.
My mom is in the hospital tonight. She had some chest pain and went to the ER this afternoon. They admitted her. I hate that she has to be there, but it’s the best place for her tonight. She’s on a heart monitor and has a nursing staff looking out for her.
I’m skipping my dex dose again this week. The doc suggested that I not take steroids while I have shingles. It’s pretty much cleared up now. It’s nice not to have to take the dex, but I think my labs will show that my IgA has gone up. My total proteins are up, and I’ll know what my IgA is later today. I wish I could take a couple of months off.
I signed up for Verizon wireless back in Februaury. There was a 15 day return period, during which the cancellation fee would be waived. It turned out there was no service in my area, so I had to return the phone and cancel the service. I did everything according to the book.
A few weeks later, I got a bill for over $200! I called Verizon, and was told the phone I returned hadn’t been marked as received in the system. I check online with FedEx, and saw that it had been signed for. I assumed it would only be a matter of days before their system was up to date.
I was wrong! Even though the phone was recieved on March 4th, they still had not updated my account in their system. I called again, and was told the same story. Basically, since the phone had not been verified as being received, I owe the money. I got some serious resistance from the customer service agent. I said that I had the signature from FedEx, and she said, “That’s FedEx. not us.” That’s when I lost my temper. I wouldn’t say I was irate, but after I told the person that it’s not my job to make sure Verizon people are doing their jobs, she hung up on me!
I called back and talked to someone with a brain. It’s all straightened out now, but I can’t help but wonder if making the process so difficult is part of Verizon’s plan to get people to just pay bills they don’t owe. I don’t think I’ve ever heard any good cell phone stories. Have you?
I’ll be having a change in treatment soon, after having received advice from Dr. Durie. As soon as I can, I’ll start back on thalidomide — just 50 mg, twice a week. I’ll cut back on my dex dose, which is currently at 60 mg a week. I’m hoping to be able to go to 20 mg a week. I need to hold off on this for a short while though. I have a case of shingles that needs to clear up before I can take any more steroids.
I’m taking Famvir 3 times a day for the shingles. You can read more about it here.
I’m really hoping the thalidomide doesn’t cause any further progression of my neuropathy. Dr. D. believes the small dose will be safe. I know enough to stop if I feel anything getting worse at all!
A lot of people have mentioned that their teeth have become very sensitive after dx, but not one of us is sure what causes it. What we all have in common is tx with dexamethasone, thalidomide and Zometa. Mine seem to be getting worse, so I don’t think thalidomide is the culprit (I quit taking that almost a year ago). I can only have room temperature water, and today that was even too much. I’ll have to mention this to the docs at the IMF seminar. I’ll be sure to publish the answers to my questions here for anyone who’s interested. I’m going to call my dentist tomorrow to see what she can do about it, if anything.
I added this on 3/6/2010 after hearing from a patient whose husband is a dentist.
…the resident dentist wants me to add that he also recommends MI-Paste for sensitive teeth. Use a fluoridated toothpaste (regular or Sensodyne) twice day. After brushing, rub MI-Paste on the teeth and let it sit for 3 minutes. http://www.mi-paste.com
Is anyone going to be at the Atlanta IMF Patient & Family Seminar in March? I’ll be there. I hope to see some of the people I’ve written to on the lists, and to see some of the people I met at the January, 2004 event. Unfortunately, I got sick in January, so I missed the last day! I so hate when that happens. I’m sure I picked up something from the flight to Ft Lauderdale. I ended up being sick for weeks. A bad cold, a GI bug and then another cold. Antibiotics finally got me back on my feet. This time, I’m driving. ATL is only a 6 hour drive, thank goodness. My brother lives in Atlanta, so it will be nice to see him. He’ll have dinner with us one night.