Month: May 2007

Velcade & Doxil Update

I’ve been on Velcade & Doxil since January now, so it’s time for another update. There have been a few cycles during which I missed a dose because of a rash, shingles and a trip to Mayo.

I’ve tolerated Velcade & Doxil quite well, with the exception of the skin problems. I also have a problem with the skin on my hands, which we think comes from the Doxil (HFS). Last Friday when I had treatment, I tried a suggestion from on of my doctors. During the infusion, I held an ice pack in each hand. They call this regional cooling, and more information can be found here:

What happens to me is that the skin on my hands splits open and the result is soreness and ever-present bandaids.

During my treatment, I receive some IV dex and benadryl to help lessen the hives (rash) that appeared after my second cycle. Since I started having the premeds, the hives have been practically non-existent.

I also have Anzemet, an anti-nausea drug. I’m not really sure that I need it, but I don’t want to find out. I think the Anzemet may be responsible for a headache I get the night of treatment. When there are so many things being pumped into your vein, there’s no way to be sure.

So far, the drug combo has worked for me. My IgA and m-spikes are still not in the normal range, but my bone marrow biopsy indicates that the % of plasma cells is down to 6.2%, and it was 30% last fall after Rev/dex (20% BEFORE Rev/dex).

I plan on staying with this regimen while I think about SCT and other things, and hope that it continues to work (even slowly) while I ponder.

New York City

I posted a message on the mailing lists, looking for list members who live in the New York City area recently. The purpose of my inquiry was to pass on some information about a Focus Group that’s being arranged by Advanced Focus Research.
They are looking for MM patients and caregivers to attend. There are a few pre-qualifying questions they need to ask, so I am including some contact information below.

There are 2 compelling reasons to participate: 1) If you qualify, and you participate, they will pay you $150. 2) They will donate $100 to the IMF for every person who participates.

It takes place on Tuesday, June 5th at 11:45am, 5:45pm, or 7:45pm.

Please contact Melissa Goldstein, and please make sure to tell her you heard about it here from Beth so the IMF will get their donation.
212-696-4455 ext. 111

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