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.

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

Beth Blood Test from June 2013

Blood Test Results from June 2013

 

This is the latest report I have.  I had blood drawn at the beginning of June. You can click on the small image of the report to see it full size.

It indicates that I’m still stable.  From quarter to quarter, there are small changes, but nothing significant.  Sometimes the values go up and sometimes down.  There’s nothing exciting to report this time.

I’m still taking 8 grams of curcumin each day, along with cinnamon, coconut oil, flax oil and krill oil.

I see the oncologist every three months, and have Zometa every three months, too. My bone density is normal.

There’s really not much to talk about, where the myeloma is concerned.  It continues to lurk, without doing anything (that I’m aware of).  It behaves like SMM.

I’ve not had any maintenance therapy since the SCT, which took place at the end of August in 2007.

I wish everyone could have such boring reports!

Here’s the PDF version > PDF Version

It’s been a while since this was written, but I just became aware of this NPR story about Minnesota Don.  Don’s an amazing person, in every way.

Targeted Cancer Drugs Keep Myeloma Patients Up And Running

Don Wright got diagnosed with multiple myeloma at what turned out to be the right time. It was 10 years ago, when he was 62.

That was at the beginning of a revolution in treating this once-fearsome , which strikes around every year. The malignancy can literally eat holes in victims’ bones, which can snap from the simple act of bending over to pick up a package.

Read More Here

I have never met Don in person, but I have spoken to him on the phone, and he even  did me a super big favor once.  A couple of times.  He’s been great about sharing his experiences with the myeloma treatments he’s undergone.  He’s been on pomalyst lately, which is a new-ish drug for mm patients.

You can listen to the story at the article’s home > http://www.npr.org/blogs/health/2013/02/18/172098789/targeted-cancer-drugs-keep-myeloma-patients-up-and-running

You can read Don’s blog here > http://myelomahope.blogspot.com/

I wanted to share this link with my readers, because it’s an important discussion about cure vs control and other aspects of myeloma treatment or management.

http://margaret.healthblogs.org/2011/08/02/the-cure-versus-control-debate-a-new-blood-study/

Please read it and let me know what you think.  I’ve long thought I probably should have held off on treatment for as long as possible, and my post-SCT strategy is to stay treatment free for as long as possible. I expect to withhold treatment until symptoms affect QOL.