Let's start with some good news: my peripheral neuropathy and neutropenia (low mature white blood count or ANC) counts haven't been much of a problem on POM, especially since my dose has been cut from 4 mg to 3 mg. That doesn't mean I won't have to deal with one or both of them in
Every October a group of myeloma survivors and caregivers get together in Boston to help celebrate our lives--and the lives of those we lost this year. Our reunion centers on the Leukemia and Lymphoma Society's (LLS) Light the Night fundraiser. The even was tonight. We've been lucky; good weather each of the past four years.
It is so sad to hear that Arnie has passed away. We met him briefly at your beach party, and I am sorry now that I didn't take the time to visit longer. I think back when I was first diagnosed, and I became somewhat familiar with the regulars who posted here almost five years
I'm flying back to Wisconsin today for a family wedding, and to visit my mother in Rockford, Illinois. Simple enough, except that I didn't know I was leaving until yesterday afternoon. Of course our pool contractor has chosen to kick things into high gear while I'm gone. I would like to be home for that.
Numbers don't lie--except when they do. I met with my medical oncologist, Dr. Mathew Luke yesterday. That went fine. Still too early to know if pomalidamide is working for me. But I was devastated by my CBC results. Such a simple thing. A complete blood count (CBC) measures the levels of red and white blood
A month ago I wrote a post explaining why my doctors and I had agreed to give Revlimid one more shot before moving on to a new therapy: RVD; do your magic one more time! It's now been almost six weeks, and I have the first SPEP results since my radiation oncologist discovered several
I get a dozen or more calls and emails a day asking, “How are you doing?” Thanks for asking! I know I should post more about me and my health. I joked with my new friends in the Philadelphia Multiple Myeloma Networking Group this weekend, "I already know how I'm doing! I'm more interested in
As I sat down to write this morning, I realized that I haven't done a follow-up post about my recent medical up-and-downs. Once again, my interest in all things myeloma has gotten in the way. Hope I haven't worried anyone! Here's what's been going on. The antibiotics (Levaquin) that worked like magic at first must
Three months ago I learned that my M-spike was gone. Since I had yet to undergo a bone marrow biopsy (BMB) to confirm that I had achieved a complete response (CR), my myeloma specialist at Moffitt Cancer Center, Dr. Melissa Alsina, proudly used the word "remission" to describe the achievement. Yet the next few months
I have received a number of supportive emails, following yesterday's post about what I can my "inelastic bone marrow." Let's face it. It is pretty pathetic that even following more than a week's rest and a neupogen shot, my absolute neutrophil count (ANC) wouldn't budge. I'm not big on repeating my past myeloma history, but
Who knew maintenance therapy could be so hard? My white blood count has a history of being suppressed by Revlimid. No surprise there. And my counts have always bounced-back following a week of rest. But since my stem cell transplant 15 months ago, that reliable resiliency has vanished. The absolute neutrophil count (ANC) is a
Last night I participated in an amazing event: Boston's Leukemia and Lymphoma Society (LLS) Light the Night fundraiser. I'm not in a position to download my pictures until I return home, but the colorful images of tens of thousands brightly illuminated balloons will stick with me for a long time. I would estimate at least
I can best describe my last month or so as typical for a lot of myeloma patients: Up and Down. As you probably already know, late last month my myeloma specialist confirmed what my medical oncologist had been telling me since June. Our consolidation therapy had worked and my M-spike was gone. That's great news!
First, let me start-out by thanking my readers and friends for their congratulatory phone calls, comments and emails this past week. THANK YOU! But I was reminded yesterday how tough it is for us with multiple myeloma to find--and then sustain--remission or a complete response. I have a standing 3 PM Wednesday appointment at my
Cue the “DALLAS!” TV show theme song. I have just arrived in Dallas to cover this year’s 13th annual IMF Support Group Leader’s Summit at the prestigious Four Season’s Resort and Spa. Pretty good work if you can get it! It’s been a rough week. My platelet and neutrophil (ANC) counts have both been steadily
How do I feel today? I'm dragging a bit, since my platelet counts continue to drop week by week under pressure from 8 months of Revlimid, Velcade and dexamethasone (RVD) therapy. Three weeks ago, my platelet count was 110. Last week it was down to 93. Yesterday I learned my platelet count had dropped all
I wanted to keep those of you who kindly follow my site updated on my medical journey. As you have probably guessed, I would rather write about myeloma news and medical advances, tips for newly diagnosed patients and the like then to write about me. But I can see by how
While my latest medical update may not live up to the sensationalized headline, I am facing some serious issues with low blood counts and questions about whether I can continue on my RVD consolidation therapy as planned. There is no question that staying on full dose RVD (Revlimid, Velcade, dex) six week cycles may not
Barring an unexpected complication over the next few days, I'm heading home Thursday afternoon. This is great news! I feel like I'm ready now. I am trying to learn how to manage my nausea. Some days are better than others. But I am up and walking a mile or more each day. I'm still not