I was going through papers a few nights ago, when I discovered the handwritten notes that Dr. Richardson (Dana-Farber) had written while I sat in an exam room, there in Boston, in March of 2003.  That was 11 years ago.  I remember him telling me, “We hope to get you to your 50th birthday — and beyond.”  At the time, I was 41 years old.  9 years seemed like a long time.  Well, that 9 years has come and gone.  I’ve known about my myeloma for more than 11 years now, and have been treatment free since 2007.  With the exception of quarterly Zometa.

Notes on my myeloma by Dr. RichardsonWhat have I learned in the last 11 years?  Lots of things. Most important among them is that no two people will have identical experiences with their myeloma disease process or treatment in the aggregate.

If someone asks me what a stem cell transplant is like, I can only tell them about MY experience.  Even if you have IgA lambda MM, and start off with the same lab values I had, and then use the exact same treatments I did, I doubt that you’d have the same experiences or outcomes.  We’re just all different.   When people ask me what I did to last so long, all I can say is, “I have no idea.”  Is it because I waited, and had the SCT later? I don’t know!

The second most important thing I’ve learned is that no other patient or caregiver is the expert, where I’m concerned.  Nobody can tell me anything I already don’t know about how to live with my myeloma. At first, I was scared of treatment side effects and procedures.  I wanted to know what other people thought and did.  I frequently asked, over and over again, things such as, “What do you do for your peripheral neuropathy?” And, “Do you have a sedative before your bone marrow biopsies?”  The answers to these questions did help me at first.  I had to find my own way, though.  I’ve been lucky enough to live long enough to keep trying different things.

At this point, I’m annoyed by people who push their opinions about the “best way” to do this or that.  It’s good to know about all of your options.  Just remember that no other person has your best interest in mind the way you do, or the way your loved ones would.  And, sometimes, you’re going to disagree with even them. Heck, yeah!

I guess I’m just trying to say that there’s no easy answer to the questions you have about what to do when you find out you have myeloma.

Here’s a short list of some things that I’ve found helpful over the years.

  • When you’re on chemo, take the anti-emetics your doctor prescribes.  If they’re not working for you, ask for something different.  Don’t stop bugging your treatment team until you get something that helps.
  • Likewise, if you have pain, keep agitating for relief.
  • For covering a Hickman or Neostar central venous catheter for showering, Glad Press-n-Seal is the best!
  • Get plenty of rest and drink plenty of fluids. Make sure your doctor recommends proper fluid intake for you, especially if you have impaired kidney function.
  • Have fun as much as is possible for you.  Just don’t hurt yourself.
  • Try to laugh.

Hang in there, everyone.

The article is called “Analysis of the immune system of multiple myeloma patients achieving long-term disease control by multidimensional flow cytometry.” It makes me think they mean long-term disease control was achieved by flow cytometry. That would be pretty awesome. They really mean that the analysis was done using MFC.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3533663/

Highlights (determined by me)

Multiple myeloma remains largely incurable. However, a few patients experience more than 10 years of relapse-free survival and can be considered as operationally cured. Interestingly, long-term disease control in multiple myeloma is not restricted to patients with a complete response, since some patients revert to having a profile of monoclonal gammopathy of undetermined significance.

My comments: How can the monoclonal gammopathy be characterized as being of undetermined significance, when the pt has had MM? Obviously, there is a significance. I’m just picking. I know what they mean. It’s good to see that they’re asserting that complete response is not required. I have never had that. I think people put too much emphasis on it.

In summary, our results indicate that multiple myeloma patients with long-term disease control have a constellation of unique immune changes favoring both immune cytotoxicity and recovery of B-cell production and homing, suggesting improved immune surveillance.

My Comments: None, really. I just like the word constellation. :) Dr. Peterson used to use that word a lot.

Despite the fact that until recently MM was considered incurable, the introduction of high dose therapy/autologous stem cell transplantation and novel drugs has made it possible for a small fraction of patients to attain long-term (≥5 years) disease control even in the absence of a complete response, after reverting to having an MGUS-like profile. The underlying mechanisms leading to disease suppression in these patients are largely unknown, although immune surveillance has been hypothesized to play a critical role.

My Comments: This is me, in a nutshell. The small fraction.

These are the latest test results.

IgM
25 mg/dL (60-263)
IgG
411 mg/dL (768-1632)
IgA
891 mg/dL (68-378)

FLC with ratio
Kappa: 0.15 mg/dL (0.33-1.94)
Lambda: 2.60 mg/dL (0.57-2.63)
K/L free ratio: 0.06 (0.26-1.65)

CBC w/differential

WBC 6.6 4.5-11.0 x(10)3/microL
Lymphocytes % 31.3 20.5-51.1 %
Monocytes % 6.0 1.7-9.3 %
Granulocytes % 62.7 42.2-75.2 %
Lymphocytes # 2.1 1.5-5.0 x(10)3/microL
Monocytes # 0.4 1.7-9.3 x(10)3/microL
Granulocytes # 4.1 1.4-6.5 x(10)3/microL
RBC 4.37 4.00-5.20 x(10)6/microL
Hemoglobin 13.3 12.0-16.0 mg/dL
Hematocrit 40.9 36.0-46.0 %
MCV 93.4 80.0-100.0 fL
MCH 30.3 26.0-34.0 pg
MCHC 32.5 31.0-37.0 mg/dL
RDW 13.4 11.6-13.7 %
Platelets 162 150-440 x(10)3/microL
MPV 7.2 7.0-10.0 fL

Other stuff

Beta-2 microglobulin
1.6 mg/L  (Normal range is 1.1-2.4)

 

Serum Protein Electrophoresis

Total protein 6.7 6.0-8.5 gm/dL
Albumin 4.0 3.2-5.6 gm/dL
Alpha-1-globulin 0.2 0.1-0.4 gm/dL
Alpha-2-globulin 0.5 0.4-1.2 gm/dL
Beta globulin 1.1 0.6-1.3 gm/dL
Gamma globulin 1.0 0.5-1.6 gm/dL
M-spike 0.3 gm/dL
Globulin, total 2.7 2.0-4.5 gm/dL
A/G ratio 1.5 0.7-2.0

 

Comprehensive Metabolic Panel

Sodium 139 136-144 mmol/L
Potassium 4.0 3.6-5.1 mmol/L
Chloride 107 101-111 mmol/L
CO2 23 22-32 mmol/L
Random glucose 106 65-140 mg/dL
BUN 12 8-26 mg/dL
Creatinine 0.72 0.4-1.0 mg/dL
eGFR >60 2
Calcium 9.0 8.9-10.3 mg/dL
Albumin 3.9 3.5-5.0 gm/dL
Protein, total 7.2 6.5-8.1 gm/dL
Alkaline Phosphatase 95 50-86 Units/L
ALT (SGPT) 51 14-54 Units/L
AST (SGOT) 34 10-41 Units/L
Bilirubin, total 0.7 0.4-2.0 mg/dL
Anion gap 8.5

 

 

 

 

I’m curious if anyone’s ever seen anything like this.  I know it’s not related to myeloma.  It’s more likely related to an injury I had when I was a teenager.  I just can’t remember anything happening to this finger recently.

What happens is, it’s a little bit sore at the knuckle.  There’s a bump there, on top, which you can’t really see from this view.

These are the distal and middle phalanxes of the left hand’s middle finger.  There should be space between the two bones.  Yes, I asked my doctor about this, and have completely forgotten what she said, except that there’s nothing to be done about it.

Anyway, it’s sort of fun just to see kind of what we look like on the inside.  Except for when blood is involved, I say.

Finger X-Ray

Here’s the report from my latest complete blood counts.

This report is very much like all the others.  Unless I’ve been in treatment, I’ve rarely had poor blood counts.  The only difference between pre and post-SCT, is that my platelets are about half what they used to be.  Still normal, though.

CBC 2013 Sept 11

I had to have my car inspected for the registration renewal last week.  As is my usual practice, I put it off until the last minute.  I hoped to get to the DMV before 5:00pm on Friday.  I got everything done that I needed to do, and the car is good to go.

But, when I got into the car after leaving the inspection station, I noticed that the brake light was illuminated.  I didn’t leave myself any time to bother with it.  At first, I thought maybe the emergency brake just wasn’t fully disengaged.  It was, though.  I’m impatient, and I was in a huge hurry, so I drove to the DMV to get the registration taken care of.  I figured I’d deal with the brake light later on.

I checked the manual, and here’s what it said:   CAUTION: The arrow on the reservoir cap must be pointin (meant to be “pointing”) forward after the cap is installed. Make sure the brake warning switch wiring doesn’t get caught between the cap and top edge of the brake fluid reservoir.

 

1989 Honda Accord brake light on ArrowAtFront
1. Brake light on after inspection. 2. RTFM.
ArrowNotFront BrakeLightOFF
3. Point arrow in right direction,
making sure wires aren’t pinched.
4. Brake light not on.

Six years ago on this date, I had a stem cell transplant at Duke Medical Center.

You can read what I wrote that day by clicking on the picture of my stem cells.  I didn’t document it very well.  I remember feeling just terrible when the stem cells were being injected into my line.  I felt so bad that they gave me something that pretty much knocked me out.  It felt like someone punched me in the chest.  I felt sick, too.  I can’t even remember if I took this picture, or if someone else did.  Ativan. :)

Stem Cells

My friends gave me their not-so-new 1989 Honda Accord SEi a few months back.  It appeared to be in great condition for its age, and even compared to a car 10 years newer.  I decided to invest time, effort and money into getting it into tip top condition.

I started with the engine.  I think I’m pretty much done with that now, with a few exceptions.  The air conditioning simply doesn’t run cold after the conversion from R12.  I think there’s a leak.

I had the steering rack replaced, and I’m sure the mechanic messed it up.  The steering’s really “loose” now, and there’s a vibration when a turn is attempted at just about anything more than a dead stop. A friend looked at it for me, and says that a bushing is missing.  He said he can replace that fairly easily.

Once those things are fixed, I believe the car, with proper maintenance, will be good for a few more hundred thousand miles.

1989 Honda Accord

What’s new

  • Radiator
  • Exhaust
  • Distributor
  • Starter
  • Fuel injectors (all 4)
  • Tires (4)
  • Steering rack
  • Brakes

We started to work on the exterior.  It’s in very good condition.  There are no major dings, and no paint peeling or oxidation. The exception is the side view mirrors, which Matt repainted.  He showed me how to do everything, so I can work on the other plastic parts when I have time.

The interior is in good condition, aside from the leather upholstery, which is quite worn and has several tears.  I’ve found a local person who can either patch or replace the upholstery.  I’m considering just having the tears patched.  I tried a DIY kit, but they were just too large to cover.  As a temporary measure, I applied Liquid Stitch to the tears to keep them from further ripping.  That stuff gets brittle and eventually gives way, so it’s not a permanent solution.

I’ll post my progress.