Beth Morgan Multiple Myeloma Treatment Blog

Modern dentistry

Beth — Wed, 03 Feb 2010 19:09:49 +0000

I had an appointment with my dentist this morning and this is what greeted me outside the entrance. They must have had a difficult patient today.

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Latest electrophoresis, proteins and free light chains

Beth — Tue, 02 Feb 2010 20:43:21 +0000

Here are my latest results.

Specific Proteins

Test Name    Result       AB    Normal Range   Units
IGG          466          L     600-1700       MG/DL
IGM          31           L     35-290         MG/DL
IGA          408          H     40-400         MG/DL

Electrophoresis

The SPE pattern demonstrates two bands of restricted mobility in the gamma region.

Immunofix, Serum

Monoclonal component typed as IgA Lambda. Concentration of monoclonal protein determined by serum protein electrophoresis is 0.4 g/dL.
Monoclonal component typed as IgA Lambda. Concentration of monoclonal protein determined by serum protein electrophoresis is 0.3 g/dL.
*Suggestive of a monoclonal component typed as IgG Kappa. Concentration of monoclonal protein is too low to accurately quantify.

* This is new! Previously, I’ve only ever had just two m-spikes. That’s not enough? I vaguely remember seeing this on one other report, so maybe it’s something that comes and goes. In any case, it’s not enough to measure, so I’m not alarmed.

Serum Free Light Chain Assay

Test Name                  Result     AB  Normal Range    Units
Kappa Free, Serum          0.1380     L   0.33-1.94       mg/dL
Lambda Free, Serum         1.24           0.57-2.63       mg/dL
K/L FLC Ratio              0.1113     L   0.26-1.65       mg/dL

Still, no myeloma treatment for over two years.

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MRIs and Mutliple Myeloma and gadolinium, oh my!

Beth — Wed, 20 Jan 2010 13:19:51 +0000

Margaret’s blog has a few posts written about the use of gadolinium as a contrast agent. I think it’s important for MM patients to know about this. You can the read posts at her blog. These are all the posts containing the word, “gadolinium.”
»The gadolinium used in MRIs makes myeloma cells proliferate

In other news, there’s not much going on. Last week I got to participate in a local radio show with two of Moore County’s finest, Detective Sargent Donnie Shingleton and Sargent Tim Cameron, of the Moore County Sheriff’s Department. The topic was home security, which included discussions about fraud. My part was Internet fraud. My words didn’t really come out right!

I start a creative non-fiction class tomorrow, thanks to my sister, Rachel. She’s encouraged me to git me some more learnin’ so’s I kin write better.

Monica and I are taping for another radio program this morning. I’ll let you know how that one turns out.

How many of you bought Ed Gorman’s new book? If you haven’t gotten it yet, now’s a good time. » Ticket to Ride by Ed Gorman. He wrote something to me on the dedication page!

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Required reading

Beth — Tue, 15 Dec 2009 04:06:18 +0000

I received the latest Sam McCain Mystery from Ed Gorman in today’s mail! It’s called “Ticket to Ride.” There was a Post-it® Flag on one of the pages, so I quickly opened the book to see what Ed wanted to draw my attention to. It was a lovely message for me on the dedication page! I’m deeply touched by this, so I think every one of you should buy a copy of the book.
For your convenience, I’m including an easy way to purchase the book right here. Please buy two: One for yourself and one as a gift for a family member or friend! It’s also available for Kindle and in large print.

Ticket to Ride

1965: America’s favorite small-town detective must solve the murder of two old friends against the backdrop of America’s cultural revolution. For small-town Iowa lawyer Sam McCain the year 1965 is not a sweet one. His father is gravely ill. His elitist boss is just now coming out of rehab. The brilliant lawyer he’d hoped to start a relationship with has gone back to her husband in Chicago. And first young soldier from Black River Falls returns home from a strange place called Viet Nam. In a coffin.

Against this background McCain tries to enjoy himself during the long Labor Day weekend party the town sponsors every year, reuniting with several old friends who appeared throughout the first six novels. Now that they’re all in their late twenties some of the old grudges and rivalries seem silly—until two of them are murdered for what seems to be a motive buried in the past.

With the Beatles, Rolling Stones, and Bob Dylan irritating those over thirty—and the boys in long hair and girls wearing blouses without bras irritating people even more—Sam McCain is forced to realize that his old world, along with the entire country’s, is about to end forever.

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My two m-spikes

Beth — Thu, 03 Dec 2009 13:41:46 +0000

I wanted to post my results, and got a little behind! Here it is:

SERUM PROTEIN ELECTROPHORESIS: COMPARED TO 6/1/09, NO SIGNIFICANT CHANGE IN PREVIOUSLY CHARACTERIZED (2) IgA-LAMBDAS FROM 0.25 TO 0.26 G/dL AND FROM 0.19 TO 0.15 G/dL.

The two m-spikes have been staying this way for several months now. The complete bone survey report says, “No
aggressive lytic or sclerotic osseous lesions.”

Good, eh?

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Dr. Brian Durie to host a teleconference

Beth — Thu, 26 Nov 2009 00:55:21 +0000

Dr. Brian Durie, Chairman and Medical Director of the International Myeloma Foundation, will host a teleconference next week to highlight key myeloma presentations at the upcoming American Society of Hematology Annual Meeting. The teleconference will take place on Monday, November 30th at 11 a.m. ET.

Discussion topics will include:
§ Treating the full cycle of myeloma
§ Pipeline drugs – what’s next and why they’re needed
§ Genetic variations in survival and outcome

Here are the dial-in details for the teleconference:

800.860.2442 (U.S.) or 412.858.4600 (outside of the U.S.)
Pass code: IMF

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H1N1 flu that’s resistant to Tamiflu

Beth — Sat, 21 Nov 2009 04:52:45 +0000

I just read about a strain of H1N1 flu that’s resistant to Tamiflu. Four of these cases have been reported at Duke Medical Center in Durham, North Carolina. I wondered if it has possibly infected people in the transplant clinic? A friend had her SCT at Duke one year when the flu was rampant in the transplant clinic. She said that a few of the patients became quite ill. She had the flu herself. She recovered and had a second stem cell transplant.

“All four of the North Carolina patients were hospitalized and were very ill with underlying severely compromised immune systems and multiple other complex medical conditions, according to researchers from the Duke University Medical Center. Three of the four died. No details have been released about how the patients caught the resistant virus or whether there was any contact among them.”

Maugh II, T.H. (2009, November 20). Swine flu seems to be trailing off — for now, at least. Retrieved from http://latimesblogs.latimes.com/booster_shots/2009/11/swine-flu-seems-to-be-tailing-offfor-now-at-elast.html

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Three Harpsichords

Beth — Mon, 16 Nov 2009 00:38:06 +0000

We went to a concert Friday night in Chapel Hill that featured three harpsichords! The program included music by Bach and a local composer named Edwin McLean. I really enjoyed McLean’s music, and will be looking for a CD.

One of the performers, Elaine Funaro, played her new harpsichord (Opus 333). The instrument was built by Richard Kingston. The harpsichord was painted by Durham artist Lisa Creed.

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Advancing Rare Disease Research: The Intersection of Patient Registries, Biospecimen Repositories and Clinical Data

Beth — Thu, 12 Nov 2009 18:00:09 +0000

Subject: Advancing Rare Disease Research: The Intersection of Patient Registries, Biospecimen Repositories and Clinical Data

The Office of Rare Diseases Research, National Institute of Health, is sponsoring a workshop entitled “Advancing Rare Disease Research: The Intersection of Patient Registries, Biospecimen Repositories and Clinical Data,” which will be held in the DoubleTree Hotel in Bethesda, Maryland, on January 11-12, 2010.

The workshop objective is to discuss the development of an infrastructure for an internet-based platform with common data elements utilizing a federated rare disease registry able to incorporate:
1. Existing rare disease registries
2. Patient organizations with no registry looking to establish one
3. Patients with no affiliation with a support group looking to belong to
a registry

The expected outcome of the workshop is to gain acceptance of the concept of a federated rare disease patient registry and participation in creating this patient registry from as many curators of patient registries and other stakeholders as possible. Participating stakeholders will discuss harmonizing standardized common data elements, vocabulary, and open source software to enable the exchange of data and information to facilitate research collaborations. The purpose of this effort is to establish a rare disease registry to benefit the rare disease patient and research communities.

A link to the draft agenda is available at the bottom of the registration page http://www.rarediseases.info.nih.gov/patient_registries_workshop/addcontact.aspx

For additional information please contact: Yaffa Rubinstein (ORDR), 301-402-4338.

Sign Language Interpreters will be provided. Individuals with disabilities who need reasonable accommodation to participate in this event should contact Yaffa Rubinstein (ORDR), 301-402-4338 and/or the Federal Relay (1-800-877-8339).

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International Myeloma Foundation’s 3rd Annual Comedy Celebration for the Peter Boyle Memorial Fund

Beth — Wed, 11 Nov 2009 01:24:55 +0000

Ray Romano hosted the IMF’s third annual Comedy Celebration for the Peter Boyle Memorial Fund a few days ago. I’m so glad to see the IMF getting these big names to help raise money for research. Every life lost to myeloma is an important one, which is why these people are giving their time and lending their names to this cause. Read more at www.myeloma.org.

I really respect and admire the people at the IMF. I’ve been to three of the patient and family seminars and recommend them to anyone I meet who has myeloma or cares for someone with myeloma. I hope you’ll make a contribution so the IMF can find a cure and continue to educate patients and their families.

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