Cold weather is upon us

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It’s been colder here lately.  This week, anyway.  Last week we had temperatures in the 80s!

The county is putting in water for us, and they’ve made quite a mess of the street. The upside is that we’ll have better water pressure and fire hydrants! I think it was as much as 8 years ago that they started making plans to do this. I’m relieved that it’s finally happening.  We won’t have to carry water up from the creek anymore. No, we don’t do that!  We have wells. The pumps are powered by electricity, even.

This site has some info about where I live.

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Sad News

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I got some sad news today.  My e-mail friend and frequent commenter on this blog, Judith Meuli (Jude), passed away yesterday. Like me she had IgA MM, although hers was kappa light chain. We shared stories about living with MM and other things. She had let me know that her doctor had told her this would be her last year. I plan on making a donation to the IMF and the IMBCR in her memory. Jude was mom’s age.

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Special Edition: Multiple Myeloma Series Upcoming Webcast

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Special Edition:  Multiple Myeloma Series
Upcoming Webcast:
This year’s American Society of Hematology meeting in Atlanta has brought many exciting new developments.  Join us this Friday for our discussion with two experts, Dr. Brian Durie, Founder, a Myeloma Specialist and Chairman of the Board for the International Myeloma Foundation and Dr. James Berenson, Founder, President & Chief Executive Officer of the Institute for Myeloma and Bone Cancer Research.  You’ll hear the latest groundbreaking news from the meeting and what these two renowned experts are excited about in Myeloma treatment and research.

“The Latest Myeloma News from the American Society of Hematology Meeting”
Friday, December 14, 2007, 2:00 pm Eastern (11:00 am Pacific)
Sponsored through an educational grant from Millennium Pharmaceuticals, Inc.
For a schedule of upcoming webcasts, to listen to recent myeloma program replays, and for further information, visit http://www.patientpower.info/specialeditionlymphoma.asp.

 

Featured Guests:

 

Brian G.M. Durie, M.D. is Chairman of the Board of the International Myeloma Foundation and a myeloma specialist at Cedars-Sinai Comprehensive Cancer Center in Los Angeles. He is also a member of the IMF Scientific Advisory Board. Dr. Durie is the recipient of the Leukemia Society of America Scholar award and the U.S. Hematologic Research Foundation Annual Award, among many others.

 

James Berenson, M.D. is the Founder, President and CEO of the non-profit Institute for Myeloma and Bone Cancer Research (www.imbcr.org) and Berenson Oncology (www.berensononcology.com) in Los Angeles, California. A leading physician-scientist, Dr. Berenson has specialized in cutting-edge research related to myeloma and metastatic bone disease both in the lab and with patients for 20+ years. He has been involved in many of the major breakthroughs that have brought new treatments for patients with these diseases resulting in both an improvement in the length and quality of their lives. His latest initiative, “The Cure Myeloma Project” enlists the work of a full-time research staff engaging in rigorous pre-clinical and clinical trials, using human myeloma cells.

Andrew Schorr: Host and eleven-year CLL survivor

HOW TO PARTICIPATE:
Listen live at http://www.patientpower.info/specialeditionmyeloma.asp
Call in live 877-711-5611 or Email questions to andrew@patientpower.info  
ABOUT PATIENT POWER:
Patient Power is a weekly show hosted by Andrew Schorr, ten-year leukemia survivor, patient educator and patient advocate.  The show features renowned medical experts on topics that include cancer, pain, diabetes, and heart specialists, as well as experts in clinical trials and top pharmacists.  The show serves to bring patients together in a radio and Internet community to provide information about available treatment options.  Patient Power takes questions from callers and Internet listeners on topics such as how to find the right doctor, how to advocate for effectively, when to get a second opinion from a specialist and how to evaluate one treatment option over another.

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“Six Months” features MM Patient

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I just ran across a program on the Biography Channel called "Six Months."

The program is about people living with deadly diseases, one being multiple myeloma. If you’re on the US west coast or central or mountain time, you can still catch tonight’s showing.

There are two more upcoming showings:

Thursday, December 6 3:00am
Saturday, December 15 1:00pm

From the Biography Channel web site:
Six Months: This emotional and heart-wrenching special features the stories of real people who are making the journey through the final months of their lives. After Eric and Janice both receive a terminal diagnosis, they quickly begin to see things from a unique perspective, and they challenge others to examine their own lives for the things that are truly important.

Janice has MM. Eric has a form of sarcoma.

I hope you can see this program. I haven’t found that it’s available on DVD, but if I do, I’ll post details.

This is Janice Chaffee’s web site: http://www.janicechaffee.com/.   MM took her life in early 2007. You may remember seeing the notice if you subscribe to Google Alerts.

Be prepared to cry.

Take care, everyone.
Beth

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This is a Neostar Triple Lumen Catheter

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Neostar Triple Lumen Catheter
Neostar Triple Lumen Catheter

This is the Neostar triple lumen catheter I had at Wake Forest last year (in 2006).  It was noticeably heavier than the hickman double lumen. I had this thing in a plastic bag for almost a year. It had never been taken out and cleaned since it was removed, so you can imagine how gunky it was.  I tried to flush it with bleach and water, which wouldn’t go through due to a clog.

The Hickman (Bard) catheter I had at Duke during the summer can be found here.

I think it’s time for a new blog theme.  I’ll be on the lookout.  Expect a change soon!

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Some lab values

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I got the results of the tests done Monday at Duke. The full report was faxed to my office, and I haven’t seen it yet, but here’s what I have so far.

M-Spikes (I have two m-spikes)

Last month: 0.19 and 0.12 g/dL (Total is 0.31 g/dL)
This month: 0.16 and 0.22 g/dL (Total is 0.38 g/dL)

Immunoglobulin Profile

Last month: IgA 374 mg/dL Reference: 46-287
This month: IgA 465 mg/dL Reference: 46-287 (up 91)
Last month: IgG 709 mg/dL Reference: 588-1573
This month: IgG 603 mg/dL Reference: 588-1573 (down 106)

I have July and August here. Needless to say, I was fervently hoping for a drop in the IgA and an increase in the IgG.  The one good thing is that the IgG is still in the normal range, where it has never been since I learned I had MM.  It was usually below 300 mg/dL.

Can someone give me a good explanation about why I have two m-spikes? I’ve asked doctors about a zillion times, and I have either forgotten what they told me or didn’t understand it well enough to even remember.

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Hair Update

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I thought I’d give a visual progress report of my hair growth.  Here’s a picture I took today.  You can compare it to one I took on October 13, 2007.

Hair growing back after stem cell transplant

Kind of weird, huh?  And, not too attractive. My hair started to fall out in September, after I had high dose chemo (melphalan) on August 28th. Some spots still look bald, even though there’s a covering of very fine, nearly invisible hair.

I had a follow up appointment at Duke today.  I won’t have any results until Wednesday afternoon.  Not anything important, anyway.  I didn’t even bother getting a copy of my CBCs. Dr. Long just told me they were completely normal. Throughout my entire MM experience, my CBC’s have hardly ever been anything but normal.

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