Author: Beth

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.

First day of tests, etc.

I had my first day of tests at the Mayo Clinic. First, let me say that I’m awe struck by the facility itself. Everywhere I’ve been has been clean and well-run. There’s some real architectural beauty there as well. It’s like the Disneyland of healthcare. I mean it. It’s really nice! I don’t want to name any names, but I’ve been in other places in which all I could think about was how icky and gross they are. You know what I mean. Those places where you’re scared to sit in the chairs in the waiting rooms because of those dark stains on the upholstery. Not to mention the big stains of questionable origin on the carpet. I usually feel contaminated when I’m there. This wasn’t the case at the Mayo Clinic. I still took my usual precautions — trying not to touch anything and washing my hands often.

I know I said the accommodations here are nice, too, but I’m retracting that statement. It’s clean and quiet here, but the room a/c has been broken, and I feel like I have a room in Hades. The maintenance guys have been here 4 times now, and I think the situation merits a move to a new room. That’s what’s going to happen later today (it’s 2 AM local time).

Back to the day at the clinic. I got there too early, but that was ok. I had to fill out the usual questionnaires, and that took time. I saw the doctor first, and was impressed. Everything everyone has told me about Dr. Hayman is true. She’s very good at her job. I look forward to seeing her again on Friday to discuss test results. After meeting the doctor, the tests were ordered and off I went. I had blood drawn and deposited a urine sample in one of the stations. It sounds weird, but there are specimen sample stations around the place. when you have the opportunity, you leave yours (inside a sealed container and plastic envelope, of course) in a container. You can find the locations of the containers on the maps which are visible at various points around the buildings. Oh! There are either employees or volunteers who seem to appear out of nowhere just at the moment you need them. If you’re standing there, looking confused, someone will ask you if you need help. If confusion is your normal state, you might find that annoying, but I think it’s quite helpful.

After I had the blood and urine taken care of, I went to pick up my jug. You all know what that is. We’re subjected to a 24 hour urine collection process, which is my least favorite activity, after bone marrow biopsies. I also had x-rays and an EKG and the bone marrow biopsy, which was unremarkable. Nothing like my very first one (“hold on and try not to move.”) at Duke. It was over pretty quickly and I was on my way. Today I have some other imaging study of some kind.

I’ll report on my meeting with Dr. Hayman on Friday.

Rochester, MN

I’m here in Rochester, MN, at the home of the Mayo Clinic. I arrived today in preparation for my appointments starting tomorrow morning at 8:05. I’m staying at the Marriott Springhill Suite, which is pretty nice. It’s nice being in the midwest. People are friendly and the drivers are extremely sane here.

I’ll post more about my experiences as they happen. I’m not really sure what’s going to happen over the next few days. Probably tests and x-rays. I’m sure there’s a bone marrow biopsy in my immediate future.

NC get together this summer for Myeloma patients/caregivers/families

We’re trying to organize a get together this summer for members of the lists (and others) who live in or near NC, or who will be in NC this summer. The subject is wide open in terms of what, when and where. Anyone who would like to get together for a picnic or some other informal gathering can use my contact form to let me know. Once we have a list of potential attendees, we’ll be better able to select a date and location that won’t be too difficult for most of us to work with. We hope this will be the first of many to come!

Please fill out my contact form if you’d like to be in on this. Let’s have some fun!

Living With Cancer on Discovery Channel

As part of “Koppel on Discovery,” an original Discovery Channel series, Living With Cancer premieres on Sunday, May 6th at 8PM ET/PT, simultaneously on Discovery Channel and Discovery Health. The two-hour documentary will be followed by a live town hall meeting led by Ted Koppel and a panel that includes Leroy Sievers, Elizabeth Edwards, Lance Armstrong.

MM (Multiple Myeloma) & MDS (Myelodysplastic Syndrome) Patients & Caregivers

MM (Multiple Myeloma)
MDS (Myelodysplastic Syndrome)

Patients & Caregivers

Clinical research study on a newly launched medical product. The purpose is to gain insight and gather opinions from patients and their caregivers that are diagnosed with MM or MDS. It is not necessary to be taking medications to participate. All information is completely confidential and used for research purposes only.

In person 45-50 minute interview

Locations & Dates -Philadelphia, PA – 5/10,5/11,5/12

Fort Lauderdale, FL ??? 5/14,5/15

Phoenix, AZ ??? 5/16, 5/17, 5/18

Participants receive $150 cash.

Please contact to schedule or ask questions.

Jan Mallery-Groom RN
Project Manager
212-217-0407 / 201-284-8201

IgA Turns Around

I had blood drawn on April 26th and saw th report today. The last one was discouraging, but I was reminded not to panic until we saw a trend. This time, it’s down. The m-spike(s) are a tiny bit lower, too.
IgG: 350 mg/dL (range: 694-1618) Low — 375 on April 8
IgA: 876 mg/dL (range: 68-378) High — 1080 on April 8
IgM: 35 mg/dL (range: 60-263) Low — 23 on April 8
M-spikes: 0.35 g/dL and 0.10 g/dL (no m-spike is normal) — 0.44 and 0.13 last time

I wonder if there’s any way the April 8th test was elevated because of the virus that caused my shingles?

B vitamins to improve neuropathy?

I had a visit to the podiatrist Friday to have a foot problem checked out. I also let him know about my grade 1 neuropathy. He suggested something called Metanx, and gave me two 5 day sample packs. It’s a Rx only supplement. It actually says, “Medical food” on the box. That means it won’t be covered by insurance, unfortunately. I’ll give it a try though, and let you know how it works. He said it’s not for the painful kind of neuropathy. For that, he prescribes Lyrica or Cymbalta, which he says are well-tolerated.
Here’s the Metanx web site if you’re interested.

Beer

Tom posted this on the list today.

A Reunion of Friends
Eighteen years ago, Pete Slosberg, of Pete’s Wicked Ale fame, brought Alan Shapiro and Virginia MacLean into his company. While these long-time friends later pursued different professional paths, the news that MacLean had been diagnosed with multiple myeloma, a form of bone cancer, brought them back together. They have reunited to create a beer inspired by Pete’s early recipes, and dedicated to raising awareness and support for the Institute for Myeloma & Bone Cancer Research in Los Angeles.

Reunion-A Beer for Hope is an organic imperial brown ale brewed by Slosberg and Dan Del Grande at Bison Brewing Company’s organic brewery in Berkeley, CA. It is brewed with six different organic malts, three different hops and dryhopped. It is 7.5% alcohol by volume. Reunion will be sold in 22 ounce screen-printed bottles via Shapiro’s SBS-Imports distributor network in California, Oregon, Washington, Arizona, Colorado, and Illinois. It has a suggested price of $4.99 per bottle.
All profits generated by SBS from the sale of REUNION will benefit IMBCR.

The web site is http://www.reunionbeer.com/

Visit the IMBCR web site to see a video of Debbie Reynolds talking about MM!