Tuesday, January 29, 2013

Good news & more watchful waiting

I had an appointment with Dr. R yesterday. All of my results are pretty stable. He isn’t too concerned about my rising IgG, just something that we will need to watch. He says my m-spike is fairly "stable" despite the fact that it increased just a tad over the last month. I am slightly anemic but nothing to get too jazzed up about.

He is very interested in the results of the periodic fever syndrome genetic testing and for the time being we are going to wait and see how everything plays out. Dr. M and he have been communicating which is great. I will go back to see Dr. R in April for blood work, 24 hour urine (GRRRRR), and an regular follow-up appointment. I believe this is standard protocol for smoldering myeloma - watch and wait. I'm not interested in jumping into any treatment right now anyway and he said that we would need to hold off on bisphosphonate infusions for now because.... 

The BEST, BEST, BEST, news, is that my BMB staining was negative for estrogen and progesterone which means; we can cautiously move ahead with our hopes of having a family. Which really is what started this whole shabang last July. Whether I have smoldering myeloma with recurrent fevers (he said this is rare but he has seen people with SMM or MM with recurrent fevers), smoldering myeloma and periodic fever syndrome, or a periodic fever syndrome is causing my smoldering myeloma – I can still hopefully become a mom! There are risks involved, obviously, but he is supportive of us moving forward and I will just be monitored super carefully if I do become pregnant. We'll see, lots more discussion on that issue.

During my physical exam when Dr. R looked an my hands he was a BIT concerned about the million scratches and that I could possibly get catch scratch fever due to my crappy immune system. He suggested clipping Hennessy's nails and trying to avoid scratches if I can. Not sure if that is going to be possible, but I'll try. :)

Seriously? I go to the bathroom for 2 seconds and this is what I return to.

This is me by the way...sporting my lucky Patriots sweatshirt... didn't do too much good!

    Blood work results of you care:

SODIUM 140 (135-145) mmol/L
POTASSIUM 3.7 (3.5-5.0) mmol/L
CHLORIDE 104 (98-108) mmol/L
CO2 28 (23-32) mmol/L
BUN 11 (9-25) mg/dL
CREATININE 0.60 L (0.7-1.3) mg/dL
GFR, ESTIMATED mL/min/1.73m2
Abnormal if < or = 60 mL/min/1.73m2
If patient is Black, multiply result by 1.21
GLUCOSE 71 (65-105) mg/dL
CALCIUM 9.5 (8.8-10.5) mg/dL
TOTAL PROTEIN 7.7 (6.0-8.0) g/dL
ALBUMIN 4.4 (3.7-5.4) g/dL
GLOBULIN 3.3 (2.3-4.2) G/DL
SGOT 19 (9-30) U/L
SGPT 15 (7-52) U/L
ALK P'TASE 54 (36-118) U/L
BILI, TOTAL 0.3 (0.2-1.2) mg/dL
LDH 111 (107-231) U/L
BETA 2 MICROGLOBIN 1.6 (0-2.7) mg/L
WBC COUNT 6.1 (3.8-9.2) K/UL
RBC COUNT 4.18 (3.8-5.0) M/UL
HEMOGLOBIN 11.8 L (11.9-15.0) GM/DL
HEMATOCRIT 35.4 (34.8-43.6) %
MCV 84.5 (81-97) FL
MCH 28.1 (27.6-33.9) PG
MCHC 33.2 L (33.3-35.4) %
RDW 14.3 (11.5-14.8) %
PLATELET 263 (155-410) K/UL
NEUTROPHILS 62 (49-79) %
EO 2 (0-6) %
BASO 0 (0-1) %
LYMPHS 31 (11-38) %
MONO 5 (5-12) %
ABS NEUTROPHILS 3.78 (2.0-6.4) K/UL
ABS EOS 0.12 (0.0-0.4) K/UL
ABS BASOS 0.00 (0.0-0.1) K/UL
ABS LYMPHS 1.89 (0.5-2.6) K/UL
ABS MONOS 0.31 (0.2-0.9) K/UL
Total Protein 7.3 g/dl 6.0 - 8.0 g/dL
Albumin 3.78 g/dl 3.20 - 5.30 g/dL
Alpha 1 0.29 g/dl 0.10 - 0.40 g/dL
Alpha 2 0.90 g/dl 0.50 - 1.00 g/dL
Beta 0.90 g/dl 0.60 - 1.20 g/dL
Gamma 1.42 g/dl 0.80 - 1.70 g/dL
Kappa 3.31 mg/L 3.3 - 19.4 mg/L
Lambda 5.65 mg/L (LO) 5.7 - 26.3 mg/L
Kappa/Lambda 0.586 0.26 - 1.65
IgG 1520 mg/dl 700 - 1600 mg/dL
IgA 170 mg/dl 70 - 400 mg/dL
IgM 116 mg/dl 40 - 230 mg/dL
Gamma M Spike 1 0.49 g/dl*


  1. Elizabeth that is great news about the results! Just wondering what the because was regarding holding off on the biophosphates/Zometa infusions? The good thing about the delay is you can have any needed dental work that is invasive finished up??? I had a Root canal and cap done in 2010 which was about a year ahead of my Zometa..... take care and Good luck!

    1. Hi Keith!

      I don't think I need any dental work done - I go to the dentist in April so I guess we'll see! My husband and I want to start a family and if that is possible Zometa is not safe during pregnancy. Question though, if you don't mind: will you have Zometa infusions every 3 months indefinitely? How does your doctor measure its effectiveness?

      Take care!

  2. My doctors tell me they will continue with Zometa indefinitely. My latest bone scans show that it is halting the bone depletion from MGUS/SMM but has not reversed it back to "normal'. They also tell me that frequency of infusions can increase to every 3 weeks with full blown MM.....that is rather scary but all this is scary stuff! I get periodic bone scans for bone density. Hope all is well , take care Keith

    1. Keith that is scary... I agree! I'm glad the zometa is stopping the bone depletion and I hope you are doing well!

  3. Hi Elizabeth, this is the first time I have even looked at a blog. I am 37yrs old and was diagnosed with MGUS after the birth of my second child. I have been monitored closely and have not felt well lately. I just recieved my bloodwork and my free kappa light chains are elvated and I am showing renal impairment. I go for my bone marrow testing next week.
    Nice to hear that you will be able to start your family.
    I guess I am just looking for a little bit of hope and to see it in someone else makes this a little bit more hopefull for me.
    Take care

    1. Hi Roxanne,

      Thank you for your message! I totally understand... I had never read a blog until last summer when I was tenitively reclassified as smoldering. Then I started reading lots of blogs... Good luck with your bone marrow biopsy and please keep in touch!

      Take care,