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

>60

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) %

BLAST 0 %

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 BLASTS 0.00 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

RBC MORPHOLOGY: SLIGHT HYPOCHROMIA, SLIGHT ANISOCYTOSIS, FEW OVALOCYTES

PLT MORPHOLOGY: WITHIN NORMAL LIMITS, LARGE PLTS PRESENT

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*

Blood work results & zebra update

I have an appointment with Dr. R next week, but I have already received all my blood work results. I also found out the bone marrow staining came back negative for estrogen and progesterone!

Almost all of my blood tests were within normal range except my hemoglobin, MCHC, and creatinine are just slightly below normal.

My M-spike is now .49 from .42 in December. Pretty much the same, not a huge jump, but I'd like to see it stay exactly the same or maybe GO DOWN. That would be great.

My IgG level is at 1520 (I'm IgG lambda). This is still within normal range (700-1600) but definitely the highest it has ever been. It's always hovered around 1000-1100 over the last 3 years since my MGUS diagnosis. IgG was 1200 in September, 1340 in December, now 1520 in January. My kappa and lambda levels are both below normal range but the ratio is normal.

I have lots of questions for Dr. R - mainly what next steps are going to be in terms of bisphosphonate infusions, monitoring, and family planning.

I have been corresponding via email with Dr. M, the infectious disease specialist Dr. R referred me to for my frequent fevers, who told me I am a zebra. Dr. M really wants me to go to the NIH to see Dr. DK regarding this possible periodic fever syndrome. We have sent the necessary information to see if I qualify to take part in their study. However, I really don't want to get involved with ANOTHER doctor (whoops, that sounds bad) unless the genetic testing comes back first and I do in fact have these genetic mutations that are indicative of a periodic fever syndrome. We are headed to the NIH next month for the Natural History Study of MGUS and SMM and it would be great if I was able to see Dr. DK while we are there but I doubt the turn around will be that quick.

Dr. M forwarded and CCed me some of the emails between him, Dr. DK, and the research nurse for the periodic fever study at the NIH. First of all, Dr. M described me as a, "lovely 29 year old teacher" which made me laugh.  Lovely. Delightful. Yup, that's me!

Importantly, Dr. M asked Dr. DK, "Have you seen MGUS as a manifestation of periodic fevers? What about the opposite-- a patient with multiple myeloma in which the monoclonal protein affects one of the pathways involved in periodic fevers?"

Dr. DK's response was, "I don't think I have ever seen MGUS as a manifestation of periodic fevers, but we certainly have seen patients with myeloma presenting with recurrent fevers."

I still really don't think I have a periodic fever syndrome but Dr. M isn't relinquishing this possibility. According to Dr. DK, this periodic fever syndrome (if that is in fact the case) most likely isn't causing my SMM and the fevers might just be from the SMM. That's kind of a bummer. We'll see.

Maybe I'm not a zebra after all?

Not Quite on Fire

When first released, this song always reminded me of Katniss Everdeen from The Hunger Games.  Remember, she was presented as the "Girl on Fire" ?

But now when I hear this song however, with my new (borderline) smoldering myeloma status, it is even more significant to me and makes me chuckle.

Definitely hot, but not quite on fire. :)

Smoldering Multiple Myeloma - Therapeutic Cancer Vaccines

Doctors at Dana-Farber are developing a therapeutic cancer vaccine, targeted to patients with smoldering myeloma.

Smoldering Multiple Myeloma - Multiple Myeloma - OncoPep


"The medical community has shown growing interest in treating patients in the early stage of MM, called smoldering multiple myeloma, which may have the potential to prevent the progression of this cancer."

"OncoPep is advancing PVX-410, a novel therapeutic cancer vaccine. PVX-410 contains four proprietary peptides designed to specifically target MM cells, with the goal of "training" the immune system to recognize and attack the cancer cells before the cancer advances."

This vaccine will, "stimulate the patient’s immune system to attack his or her cancer through an optimized combination of disease-specific peptides and adjuvants (substances that stimulate the immune system)."

"The initial clinical target is smoldering multiple myeloma, a precursor disease to MM for which there are no approved treatments. The Company plans to initiate a Phase 1 trial in the U.S. for PVX-410 in smoldering multiple myeloma in early 2013."



When I asked about this vaccine at an appointment a couple months ago my doctor asked me if I had ever seen the movie I Am Legend. Heh. Kinda scary! But, in all seriousness, hopefully this is promising. :)

Running out of blood

Okay, not really. It just feels like it! So, today I took the second of my three scheduled trips to Dana-Farber this month and I had my second blood draw in less than a week. I had blood work last Thursday after I saw the infectious disease specialist, Dr. M, when I received my possible "zebra" diagnosis. :) Today I had my regular blood work prior to my appointment with Dr. R which is coming up in a little over a week. I still haven't heard the results of the bone marrow staining - if the tissue is positive or responsive for estrogen or progesterone.



A few of my blood results are finalized from today and I can view them online:


Creatinine is low at .6 (Always is! Reference range: .7-1.3 mg/dL).

My hemoglobin is up from 11.3 last Thursday to 11.8  (reference range 11.9-15.0 GM/DL).

My MCHC (mean cell hemoglobin concentration) went up from 32.8 to 33.2 (reference range 33.3-35.4%).

These results are just BARELY below normal. I just don't like seeing the little (#) marks!

Hematocrit is up from 34.3 on Thursday to 35.4 today (reference range 34.8-43.6%) - so this is back to normal which is super. :)



January is shaping up to be a month full of medical appointments. Even Hennessy had his first trip to the vet yesterday.

My little buddy has been a complete maniac lately! But, at the vet he charmed everyone and was surprisingly well behaved during his distemper shot. He's a very curious boy! :)

ID Specialist says, "You're a zebra!"

I met with Dr. M, an infectious disease specialist, today per Dr. R's request to see if the frequent fevers/night sweats I experience are being caused by something other than my borderline SMM status. 

Dr. M thinks I “may” have what is called a “Periodic Fever Syndrome.” My head is literally about to explode with all the new jargon and acronyms. TRAPS, HIDS, TNF...  WTF! Ahhhh.

The results of the genetic testing (7 genes are tested for mutations) for this syndrome may take a couple of MONTHS. Ugh. More blood tests, more waiting. However, I’ve been reading a bit online about periodic fever syndromes and I don’t really think I match up with a lot of the symptoms. But I guess we’ll see.

Dr. M did some regular blood tests today too – some of which are still pending but some are already back - my hemoglobin is 11.3 (never been this low before!) and my hematocrit is 34.3 (low).  Ugh.

Anyway, Dr. M says that there are 3 possible scenarios:

1.       My fevers are due to the smoldering myeloma/MGUS

2.       I could have a periodic fever syndrome AND smoldering myeloma/MGUS – two separate entities

3.    The periodic fever syndrome is primary and is CAUSING the smoldering myeloma/MGUS. In his words it would no longer be "monoclonal gammopathy of UNCERTAIN signficance" but "monoclonal gammopthy of KNOWN significance."

I’m hoping for scenario 3 because if I get treatment for these fevers the SMM/MGUS COULD POSSIBLY GO AWAY. I almost fell off my chair when he said this. Treatment for this syndrome would be a “TNF Blocker” which might mean an injection once a week. YIKES.

This could possibly be a total game changer, folks.

When I was changing into the gown for the physical exam Dr. M was gone a really long time. After the physical exam he explained he was gone so long because he was emailing this doctor at the NIH because if I do have genetic mutations in the Periodic Fever Syndromes Panel he would want me to go there to see him. He seemed really excited I could get a “free trip to the NIH.” Hah. I'm already GOING there in February for the Natural History Study of MGUS and SMM! More trips, more doctors.
 

Dr. M said I’m a “zebra”… a term I’ve never heard before but google says its medical slang for “surprising diagnosis.” Apparently, "zebra" refers to an admonition med school professors often give their students: "When you hear hoof beats, think of horses, not zebras." It means, when presented with symptoms, first think of the common conditions that cause them, before looking for the rare ones. But...

I'm the really attractive one with the mouth open... :)

 

So we'll see. Honestly, I am still trying to figure out all this new jargon and wrap my head around everything - don't want to get my hopes up too high. Never a dull moment these days!

What's in a name?

In July I requested ALL my records from Dana-Farber. I had the records emailed to me and sent to my local PCP. I had always received copies of my lab results at appointments and I can access a lot online, but I wanted my whole record in it's entirety. From July on, I've just had the secretary send me the progress notes.

I have to say, reading through the doctor's notes from November 2009 to present day was interesting. It was kind of like taking a walk down memory lane because some of my life milestones were outlined in the notes during the three years I had been an MGUS patient.


Here are just a few snippets. Why? Well, because they amuse me.




Ms. Elizabeth **** is a delightful 26-year-old young woman. {Yes, I really was delightful!}

She is single. She does, however, have a boyfriend, and they have been in a stable relationship for some time. She lives with her roommate.. {This boyfriend is now my husband!}

Ms. Elizabeth **** is seen today in followup. Since last seen, Elizabeth has continued to do remarkably well. She is teaching full time. She is now engaged to be married, and is planning for her wedding next year. She reports that all is well at home. Systemic inquiry is noteworthy for excellent performance status and superb morale. {I'm engaged! With superb morale. No doubt.}

Elizabeth reports that all is well. She is due to be married later this year and is busy making arrangements accordingly. In herself, she is feeling quite well. {Um, more like stressed out of my mind with wedding planning!}

 

Elizabeth has been doing really quite well since last seen. Systemic inquiry is noteworthy for good performance status and excellent morale. {Excellent morale. Yep.}

 

Ms. Elizabeth **** is a delightful 28-year-old young woman with MGUS who is followed carefully as part of her strategy of observation. She is accompanied today by her very supportive husband. All is well at home. {2 years later... I was still delightful!}

 

Ms. Elizabeth **** is seen today in follow-up. Elizabeth is accompanied here today by her very supportive husband. All is well at home. Since last seen, she has continued to do remarkably well overall and has no new complaints. She is working full-time as a teacher. She is very happily married. Both she and her husband are looking to start a family fairly soon if at all possible, but she does have some concerns about the feasibility of doing this in the context of her monoclonal gammopathy of uncertain significance. For that reason, today, she is ready to undergo bone marrow aspirate and biopsy. {Okay, just to clarify, I actually WASN'T concerned. I just wanted to confirm it was okay.}

After July, I noticed the top of my progress notes changed. This has been a little disconcerting to see in black and white. My first three years it always said:


 

PROGRESS NOTE

DIAGNOSIS: Monoclonal gammopathy of uncertain signficance.

CURRENT THERAPY: Careful Observation.





Then, in September it said:

 

PROGRESS NOTE

 

DIAGNOSIS: Plasma cell dyscrasia (MGUS versus smoldering myeloma)

 

CURRENT THERAPY: Presently under evaluation before commencing further treatment.

Then, in December it said:

PROGRESS NOTE

DIAGNOSIS: Smoldering myeloma (versus MGUS).
 

CURRENT THERAPY: Presently under evaluation before commencing further treatment.







AND. In my most recent note it says that I will start, "periodic infusions of bisphosphonate." Not so sure about that... yikes. I'm glad my diagnosis still includes "versus MGUS". That makes me feel a little better.


But. 



What's in a name? :)

Myeloma 101

This great presentation by Dr. Joseph Mikhael from the Mayo Clinic explains monocolonal gammapothy of undetermined significance, smoldering myeloma, and multiple myeloma.

Click the link to view:

 

Dr. Joseph Mikhael: Myeloma 101


The doctor is pretty funny, I recommend watching.

2013.... A new year!

I am happy 2013 is here. A fresh new year! Kind of glad to see 2012 go. Not going to lie.

I anticipate a lot of changes this year. Goals for me include stress reduction and continued healthy eating to improve my overall health and protect me from all the germs I am exposed to on a daily basis.

Recently however, my valiant efforts could be considered an EPIC FAIL as I have been sick with a nasty cold and/or the flu the last week or so. Fevers over 102 are not fun. Blahh - I was doing so well!

 

I am also planning to keep up with regular exercise and the great classes at my gym.

 

Pretty soon I am going to look like this:

 

 

 Heh. Actually, let's hope not!

 

I saw this really cute "New Year's" idea on Pinterest. Here is what you do:

Start on January 1st with an empty jar. Throughout the year write the good things that happened to you on little pieces of paper. On December 31st, open the jar and read all the amazing memories.

I am hopeful we will fill the jar very quickly this year. :)