Category Archives: Life

Life

Darzalex as a single agent

Published / by Beth / Leave a Comment

I haven’t posted any updates lately. The reason is, after having had MM for so long, I just don’t think about it very much.  It’s not like it was in the beginning.  I used to wake up every day, and that was the first thing I’d think about. That was 2003.  It’s just a part of my life now.  I’ve been very fortunate to have had few problems.

RevlimidIn January I started on Darzalex, Revlimid and dex.  I’d taken Revlimid before, in 2006.  You can read all of my previous posts about Revlimid here:  https://www.myelomablog.com/?s=Revlimid. I have not tolerated it well, so I stopped taking it at the end of January.  In fact, I felt so miserable that when it came to taking that last pill in the bottle, I couldn’t make myself do it.  Revlimid causes me to have some really awful GI issues.  I think I can understand what people must go through when they have IBS or similar afflictions.  Revlimid causes me to have GI cramps, diarrhea, constipation, and some nausea. That was at a 25 mg per day dose.  I may be trying a 15 mg per day dose soon.

The reason I may be trying a lower dose is that Darzalex as a single agent (with 20 mg of dex) has not held my MM back.  Dara (Darzalex or daratumumab), Rev & dex did a great job up front, though.  But since I stopped Rev, the numbers have started climbing.

My doctor wants to try to get me on Pomalyst. In January, we were told that my insurance would not pay for Pom at the same time I’m getting dara. It’s considered an off label use of the combination. He says he thinks he can get it approved this time.  If it doesn’t happen, I’ll use 15 mg of Rev.

Sunny Fall Day

Published / by Beth

This is my cat, Peeps, taking a snooze on the back porch on a sunny October day. Peeps has been with me for a few years now.  She showed up at my house one winter.  I called her Peeps because she used to stand up at the door and peep into the house through the windows. She ran away from me whenever I tried to approach her at first.  Not anymore!  Now she comes running whenever she sees me or when I call for her. She’s an amazing and wonderful cat!

Peeps Asleep

Be your own expert!

Published / by Beth / 2 Comments on Be your own expert!

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.

My new project

Published / by Beth

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.

Test results from February blood draw

Published / by Beth

I got these results last week.  Pretty much the only difference between these results and the last ones is that the IgA is about 200 mg/dL higher.  Last time, it was 663.  The m-spikes are the same.  This time, the kappa/lambda free light chain ratio is just inside the normal range.  IgM and IgG are suppressed, and at about the same levels they were in October.  Why the increase in IgA? My doctor suggested that it may simply be a normal immune response to something.

Blood tests for myeloma Feb 2012

Latest Labs

Published / by Beth

The serum free light chains weren’t back yet when I got this. I don’t think about this stuff as much as I used to, so I probably won’t even call in to ask about it. I’ll wait for my next appointment in a couple of months to find out.

I had been seeing the doc every 4 months, but now it’s going to be every 3 months, due to a small increase in m-spike. The doc asked me if I want to start maintenance, but I said no. The m-spike was somewhere about 0.3 five years ago after I had my auto SCT.
Myeloma blood test results 2012 July