MRI

I called my doctor this morning and made an appointment to have him schedule an MRI for me. My right leg has been hurting for a few weeks, and I’m now having to take pain meds a few times a day. I had some xrays last week, which didn’t show any lesions. Hopefully, there’s nothing wrong, but an MRI has a better chance of showing anything else that could be causing the pain. Mostly, I worry about AVN. I also need to have him check my HGB A1C to make sure it’s not off the charts from all the dex.

In my 3 years since dx with MM, I have never had to take pain meds on regular basis. It’s just been on an as-needed basis, such as when I have a BMB.

Warm days

We’re having some warm days here in NC. It was about 80 today and will be in the low 80s tomorrow. We have a weather station at work. You can see it here. We’ve had a very mild winter so far. I can’t think of a time this winter when I could wear my winter coat and not be uncomfortably warm.

Last week , when I was driving to Winston-Salem, I heard a loud noise, like something hit my car. It wasn’t until a few minutes later that I noticed a crack on my windshield. It keeps getting bigger, so I need to do something about it. Seems like the problems never cease!

Big Report

I have a lot to report tonight. First, my IgA has gone down more from the Revlimid/dex trial. Today’s result was 584 mg/dL. It’s never been that low since my diagnosis. You can see all the results I have back so far by clicking on “My Labs” above.

Once my MM is at an acceptable low level, we will harvest my stem cells. The way it works there at Wake Forest, is like this: They are going to contact my insurance company to make sure they will pay for a harvest and store. Once I have that approval, they will have me in the hospital for 2 days while they administer a fairly powerful dose of Cytoxan. Then they will start me on Neupogen for 10 days, which I will inject at home. I’ll have blood tests here at home to make sure my counts reflect the administration of the Neupogen. It’s supposed to mobilize the stem cells by producing so many that they spill out of the bone marrow into the blood stream. It can cause bone pain when it starts to crowd the marrow. It can be managed with pain meds, which I already have. I’ll return to WFUBMC and have my stem cells harvested through a process called pheresis, where the blood will be drawn out through an IV in one arm, the stem cells removed and the blood returned through an IV in the other arm.

I had an xray to look for lytic lesions. The doc said that AVN is painful when active and at rest, so he didn’t believe it was that. No lesion was found. That was good news. It’s probably the sciatic nerve or some inflammation somewhere.

I lost 4 more lbs between my last appointment 2 weeks ago and today. Seems weird, being on so much dex! But I’m glad. I’m not even trying. I think it’s probably the GI problems I have. Also when I’m on the dex, I don’t have much of an appetite. I’m very thirsty though. It’s when I’m off the dex that I have a ravenous appetite. I just don’t let myself have anything that’s bad for me. During dex days, I stay off carbs as much as I can & sugar (always off sugar, for that matter).

I am going to a different dex schedule. Since I’m so miserable on my days off (exhausted!), I am going to do a tapered dose that goes like this:

Day 1: 40 mg
Day 2: 40 mg
Day 3: 40 mg
Day 4: 24 mg
Day 5: 12 mg
Day 6: 6 mg
Day 7: 2 mg
Days 8-14 off
Day 15 – 21: same as days 1-7
Days 23-29 off

News

Diana Krall leads charity event for VGH & UBC Hospital Foundation … Canada NewsWire (press release) – Canada … L/BMT) Program of British Columbia is world-renowned for its care for people from across BC with cancers of the blood such as leukemia and multiple myeloma. …

Celgene’s Revlimid Has Upside Long-Term Potential < http://www.forbes.com/markets/economy/2006/03/08/celgene-revlimid-0308markets15.html> Forbes – USA… of key events lie on the horizon for Celgene (nasdaq: CELG – news – people ), including the pending approval of Revlimid for multiple myeloma, expected by the …

Survivors

This evening I was calling cancer survivors to let them know about the annual Relay for Life. I made about 30 calls and got in touch with about 20 people, I think. Everyone I talked to was looking forward to attending. It was good talking to them. We all have something in common. I got to talk to a few people who were at or near their 5 year anniversary of being cancer-free. I had to call one man back to ask one of my required questions because I lost track of what I was supposed to be doing.

Tomorrow I see Dr. Hurd at Wake Forest. I have to make some notes about what I need to discuss with him. Right after I went of dex last week (for the week off), I had a lot of pain in my right leg. I worry about AVN, having been on steroids for so long, and so much. I just have to have it checked out, because I’d rather complain about something that turns out to be nothing than end up having to have hip replacement surgery.

There’s also been a lot of buzz about Zometa and ONJ lately. I don’t think I should be having it any more than every 3 months anymore. I’ve been having it every month for 3 years now. Some doctors stop it for their patients after 2 years.

Next appointment

My next visit with Dr. Hurd at Wake Forest will be on Wednesday, March 8th. I’m hoping for continued good results from the Rev/dex EAP. The dex is a wicked drug though, and I’m beginning to doubt my ability to stick it out at this high dose for 2 more months. I’m on my rest week now, and am recovering, so I may feel differently in a day or so. As soon as I can, I am going to see about having my stem cells harvested. If you’ve read my blog much, you know I’m not in favor of having a stem cell transplant at this time, but I DO want to have my stem cells frozen so I can have more treatment choices.

Medicare proposed changes

This was posted on the ACOR MM list. I hope we’ll all take some action!
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For those of you who do not live in the US, I apologize. I also apologize for adding this to everyone’s email. I haven’t don’t this before so …

Apparently someone in the Center for Medicare Services (CMS) has come up with the following idea to save money. They will limit the number of times that certain laboratory tests will be reimbursed. CMS calls these tests Medically Unbelievable Edits (MUE’s).

Here are some examples of what will happen:
If a patient has a culture and sensitivity that determines what bacteria might be causing an infection and which antimicrobials will/will not work, then you can only have two per day. So don’t have bacteria in three places on the same day. One culture will have to wait for the next day

We all know of people who get more than one unit of blood per day in out-patient settings. Well, under this regulation, you will only be able to get 1 crossmatch per day which effectively limits you to one unit per day. And that will dramatically affect the treatment of anemia in out patients.

In the case of serum protein immunoelectrophoresis, CMS proposes to pay for only one assay per day. Specifically, you can get an IgG level but not an IgA or IgM on the same day.

In the case of flow cytometry, they will pay for 2 probes on any given day. Would you prefer CD5 and Cd 19 or CD20 and CD38 because you need to space them out over time? Where you usually can get a panel of molecular diagnostic markers performed at the same time, they will only pay for 1 a day. So, if your cells need to be tested with 10 markers, you need to have 1 performed per day.

In addition to detracting significantly from patient care, laboratory personnel will probably not refuse to perform these tests. But they won’t be able to bill Medicare for them. That means that they will either try to eat the cost (although that breaks a 19th century federal law on fraud and abuse) or charge the patient – except in those states that have no balance billing laws. Small laboratories such as Physician Office Laboratories or clinic laboratories or community hospital laboratories may go bankrupt and close or severely limit their service.

My suggestion is to call/email your Senators and Representatives to have them put pressure on CMS to withdraw this idea. You can also write directly to
Mark McClellan, M.D., Ph.D.
Administrator
Centers for Medicare and Medicaid Services
Department of Health and Human Services
Attention: CMS-1502-FC
Room 445-G, HHH building
200 Independence Ave SW
Washington, DC 20201

The comment period ends on March 30 and unless turned back will go into effect on July 1, 2006.


Susan J. Leclair, Ph.D., CLS(NCA)
Chancellor Professor
Department of Medical Laboratory Science
University of Massachusetts Dartmouth
Dartmouth, Massachusetts 02747-2300

Buddy

What a cute doggieHere’s a picture of Buddy after a haircut. We’re about to go out for a walk, which is his favorite time of day. He always knows when it’s time, because I put on my shoes. I actually can’t stand wearing shoes since I got neuropathy from the thalidomide. No longer do I have the joy of buying comfy new shoes.

Buddy is half collie and half golden retriever. His head is definitely retriever. However, he has no interest in retrieving anything!