Category: Durham

H1N1 flu that’s resistant to Tamiflu

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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

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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.

Harpsichord concert

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.

Richard Kingston

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Duke Lemur Center / Bone Marrow Transplant Clinic today

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Duke Lemur CenterMonica and I got to go to the Duke Lemur Center in Durham, NC today for business.  It was great!  I took some pictures through the fences with my iPhone camera, and this was the best of them. I’m afraid I can’t tell you what type of lemur this is, but I’ll find out.

Just before the meeting at the Lemur Center, I had a checkup at the Bone Marrow Transplant Clinic.  I’ll have the results of my tests on Wednesday.   It’s been almost two years since I had a skeletal survey, so I scheduled that for September.  The skeletal survey is a series of xrays of the long bones, skull and ribs and spine. I asked about a recent report I read that suggests that PET scans should be used for monitoring myeloma.  My doctor does those if there’s activity such as an increasing m-spike and nothing shows up on xrays.  The PET can show plasmacytomas and other activity.

I’ve been told that standard radiographs aren’t much good at detecting bone damage until there’s been a significant amount of destruction, so it’s not a good early warning indicator. I’d like to have a PET scan just to see what’s lurking.  I know they’re expensive.  A few years ago I called around to get the costs at various places  because I wanted one, but was told by my insurance company that they weren’t covered for myeloma. At the time, the cheapest PET scan I could find was about $3,000.

Did you know you can do that?  If you’re not insured, or your coverage isn’t very good, call around to see who has the best deals on tests or procedures.  The costs can vary quite significantly between institutions.  Another money-saving tactic is to find out what’s covered under what setting.  For example, my insurance has me pay 20% of services performed in hospitals.  That’s why I have most of my chemo and all of my Zometa infused at a nearby doctor’s office.  When I do that, it’s just a $30 copay. Investigate all of your options!

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Lyrica

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My doc gave me an rx for Lyrica a few weeks ago to help with the neuropathy.   I posted on the mailing list to get an idea of what kinds of side effects others had experienced when they used it. Mostly, I’d say they were not very positive responses.  Almost everyone quit taking Lyrica because of side effects such as edema. One patient’s experience was pretty severe. I won’t be taking it.  My PN isn’t present 100% of the time (although the numbness is).  I’ll just take tramadol or some other medication PRN.

The issue is that I plan on making a very long trip out of the country in the spring.  The PN is worse when I can’t either be moving or have my legs up, so I was concerned about taking an extremely long flight.  It might just be best for me to be prepared with some vicodin (someone recommended this).  Once I’m there, I’ll just need a good night’s sleep to recover and all will be well.

If you have any experience with chemo-induced PN, let me know how you handle it.

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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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Test results

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I got the results of the tests done last week at Duke. The report states, “Compared to 8/3/07, no significant change in previously characterized IgA lambda components from 0.28 to 0.19 and 0.12 to 0.18 g/dL.” The PA let me know that it’s possible for the m-spike(s) to drop more in the next few months. One good thing is that my IgG is normal for the first time in five years (probably a few more). It was 223 in February, 2003, for example.

Immunoglobulin Profile
IgG 709 mg/dL Reference: 588-1573
IgA 374 mg/dL Reference: 46-287
IgM 29 mg/dL Reference: 57-237
IgE 12 mg/dL Reference: 4-269

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One Month Check-up

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Tomorrow I’ll have my one month check-up.  It will have been a month since I was released from the Duke SCT Clinic.  I feel pretty well, with no major complaints. I’m filling a jug for them, and will have blood drawn when I get there.  Aside from CBCs, it will probably be at least a few days before I get any results.

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