Author: Beth

I was diagnosed with MM in January of 2003. I underwent various treatments, including thalidomide/dex, revlimid/dex, dex alone, a clinical trial of CNTO 328, and Velcade, Doxil and dex until late August, 2007, when I had an autologous stem cell transplant after high dose melphalan. I experienced what's known as a very good partial response (VGPR). Since then, my myeloma has been stable.

2009 Myeloma update

15

I don’t have a lot to blog about here because my myeloma has been stable since last fall. There’s not much there at all.  If you don’t have myeloma, I have only a little bit more than you do.

These labs were done 12/08/2008


IFE SERUM
(2) MONOCLONAL IgA-LAMBDAS DETECTED BY IFE.
SPE M-SPIKE 1                      0.17        g/dL
SPE M-SPIKE 2                      0.12        g/dL

IG FREE LIGHT CHAINS SERUM
                                                         Reference
  IG FREE LIGHT CHAIN KAPPA         *0.16mg/dL       [0.33-1.94]
  IG FREE LIGHT CHAIN LAMBDA         1.85mg/dL       [0.57-2.63]
  IG FLC KAPPA/LAMBDA RATIO         *0.09            [0.26-1.65]

IMMUNOGLOBULIN PROFILE
IMMUNOGLOBULIN G                  *374mg/dL       [588-1573]
TEST REPEATED TO CONFIRM
IMMUNOGLOBULIN A                  *415mg/dL       [46-287]
TEST REPEATED TO CONFIRM
IMMUNOGLOBULIN M                  *31mg/dL       [57-237]
TEST REPEATED TO CONFIRM
IMMUNOGLOBULIN E                   13 IU/mL       [4-269]
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There’s a moon

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This is a view of the moon through the clouds. It was such a striking image that I had to take a pic with my phone.

The moon in my back yard
The moon as seen from my back yard

There’s a moon
It’s in the sky
It’s called the moon
And everybody is there
– The B-52’s

As M knows, I can tell you (because I learned this from a recent dream) if aliens ever arrive on earth and try to kidnap us using their blue light, all we have to do is sing!  They hate music, apparently.  It drives them right off.

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I love AFLAC

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Before I got cancer, I made sure I had an AFLAC cancer policy. They’ve been great, and I recommend that everyone who is planning on having cancer  enrolls in one of their plans before getting it.  The trouble is, you don’t know if/when you might get cancer, so you better just plan for it. Expect the worst and hope for the best, some say.

I filed my claim for 2008 a week or so ago and was really surprised when I received a check in the mail for $4600. Something wasn’t right.  It should have been $900. I’ve been filing these claims for years, so I knew a mistake had been made.  I picked up the phone and called AFLAC. They’re going to investigate it and will send a letter when they figure out what happened.  Wouldn’t it be nice if they said it was a reward for making it 6 years with myeloma?

What would you do?

View Results

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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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Exciting Multiple Myeloma Data at ASH

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This is from a reader.

Subject: Exciting Multiple Myeloma Data at ASH

Message: Hi Beth,
Here are some data highlights from The 50th Annual American Society
of Hematology (ASH) Meeting this week:

  • Updated results from the ECOG study evaluating Revlimid plus low-dose dexamethasone in newly diagnosed patients was presented by Dr. Rajkumar in a joint symposium of the American Society of Clinical Oncology and ASH.  The results are the highest 3 year overall survival rates ever reported in this patient group.
  • Data presented by Dr. San Miguel showed that relapsed/refractory patients who received continuous treatment with Revlimid and dexamethasone after achieving their best response lived longer and had increased time to disease progression compared to those who discontinued treatment after ten months or less.
  • Dr. Lacy presented data which showed that pomalidomide with dexamethasone has promising activity for patients with relapsed/refractory MM.   Results from this ongoing trial showed high remission rates.

Best,
Allison

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