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Myeloma is different in every patient–and every patient is different

Posted on June 27 2014 by Pat Killingsworth | 2,434 views

I haven’t been having much fun lately.  Its not that I’m down or depressed; just busy and a bit overwhelmed with our move and recent myeloma related hiccups.  Regular readers may have noticed.  Where are those fun, tongue-and-cheek posts that Pat used to run?

A recent email exchange reminded me not to take things too seriously.  I was reading an email from Danny Parker.  You remember Danny?  Our lifestyle columnist took a medical leave of absence to tend to the worse case of shingles I’ve ever seen late last year.

Danny pays attention to detail.  He’s an engineer and author.  Sometimes in his spare time he investigates clinical trial results and  reads detailed reports having to do with nutrition and exercise.  Danny emailed me, concerned about a few of his numbers; obscure tests and values I’ve never even seen before.  I’m sure susierose would understand what they’re measuring, but I don’t.  Another good friend and multiple myeloma survivor, Nick Van Dyke, pays a lot of attention to his numbers, too.

By any normal measure, both Danny and Nick are currently myeloma free.  Nick learned a recent scare was most likely a false alarm.  Danny’s test results may or may not show his myeloma is just beginning to become active again; his specialist in California says it’s too early to worry.

I can see following a few numbers in anticipation of a possible therapy change (me), but if I’m doing well I’ll admit it; I barely pay attention.  I worry about your numbers instead.

But it’s different for my two friends.  Nick is convinced he’s cured–and he may well be.  So far, so good!  God forbid if Nick’s myeloma were to return it wouldn’t be life threatening, but it would shatter his carefully constructed belief system.

Danny is a high risk patient.  I’m sure he’s concerned that once his myeloma returns, it may be difficult to control.

I found myself giving advice to Danny to lighten up and not worry so much.  Me, giving advice like that?  If you look up “hypocrite” in the dictionary, you might find that as definition number two!  I’m the one that needs to slow down and make time to have some fun and SMILE!

Danny returned my email, graciously thanking me for my advice.  He reminded me that he’s “a numbers guy” and that’s just the way he’s wired.  Conversely, I’m into the creativity and craft of it all.  Weaving one post into another.  How things look on the page.  Writing artfully, yet keeping things simple so newly diagnosed patients can follow along.  I could use an editor, but I work hard to try and make my writing seem like I have one!

We’re all different.  Our myeloma is different.  The way we live with our relentless, insidious cancer  is different.  Insidious is the perfect word for it.  The definition of this adjective:” proceeding in a gradual, subtle way, but with harmful effects.”  Sound familiar?

I’ve learned so much watching how dear friends like Danny, Nick and dozens of others deal with their myeloma.  I can best describe it as “grace under fire.”  Waiting, watching; never sure what the next test results will foretell.

820Is my new pomalidomide therapy working?  I won’t know for several weeks.  I have a choice.  I can sit around, fret and worry about it, or I can get out, have some fun and LIVE!  Maybe Pattie, Finnegan and I will run into you on the beach this weekend.

Feel good and keep smiling!  Pat

20 Comments For This Post

  1. Nancy K Says:

    Great post and advice Pat. I try to subscribe to that philosophy. When you a dealing with something you cannot change in the best way that you can, you try not to waste time fretting and worrying. Try to enjoy whatever you can. Myeloma is certainly an uphill climb.

  2. suzierose Says:

    Hi Pat,

    If you do a FLC assay, you will know within 10 days, how POM is working. 🙂

    Yes, I plan to keep repeating this!!


  3. Nancy Shamanna Says:

    Thanks Pat and Pattie, for all that you do for the myeloma community. I hope you have a nice time at the beach with Finnegan. I guess that your summer goes on sort of indefinitely, in Florida, but here it is quite fleeting so here everyone is trying to get outdoors and enjoy that as much as possible. Take good care of yourselves!

  4. Pat Killingsworth Says:

    suzierose, Danny and his doctors follow FLC asay numbers, too. I’m following up on it…

  5. kathym Says:

    So glad to hear you’re now able to explore your new playground at the beach. Have a wonderful weekend, y’all!

  6. Pat Killingsworth Says:


  7. Leigh McCulloch Says:

    Hi Pat, I am learning very quickly how different this disease is in every patient. Although my numbers are staying pretty much the same my immune system is collapsing very quickly. My doctor is still against starting full on treatment which I agree with, but he is starting me on a 4 month trial of IVIG to see if it can knock back the repeated infections. I also now have a very sore spot in my tibia which is due to be scanned by MRI shortly. Hopefully not related with the myeloma. Hope your new drug regime works and you enjoy your new home. We are deep in winter here with massive snow dumps in the mountains and 100kmh winds in our city for the last week. Good time for a bit of reading!!



  8. Pat Killingsworth Says:

    I have learned that a compromised immune system is more dangerous for us than myeloma itself. Its ironic that a therapy can be working, yet we need to pause–or stop treatment altogether–because our bodies aren’t strong enough to continue. Eat lots of good, healthy food and hopefully your body will adjust. It isn’t unusual for that to happen. Great to hear from you!

  9. Leigh McCulloch Says:

    Hi Pat, Will let you know how it pans out. My specialist thinks that as I am still young, the full on treatment/transplant regime should be kept as a weapon for later. Hopefully the IVIG can modulate my immune system. The issue is the removal of my thymus gland, which the infectious disease specialist considers to be a bad move as it does have a residual affect on the immune system even later in life. He thinks that with the double whammy of no thymus gland and myeloma I can expect lots of heavy infections. Fingers crossed the IVIG works but no guarantees from any of the doctors.

  10. kate farrell Says:

    This comment is for Leigh. Dr. David Siegal a Hackensack NJ MM specialist for sure, thought the CRAB protocol could be renamed CRABI, the I for infections. Not sure how you would determine the source of infections from an absent thymus gland vs active myeloma but would want to know that a myeloma specialist was making that determination. So IVIG is often very beneficial but not a substitute for controlling active myeloma disease. Good luck with the MRI.

  11. Leigh McCulloch Says:

    Hi Kate, probably my post was a little confusing. The infections are being caused by immune suppression from the myeloma. My myeloma specialist and infection control doctor are of the opinion that if my thymus was still there the infections would not be as bad or often. I am still considered at the SMM stage however if the IVIG does not work then treatment for the myeloma is the next step. We have discussed utilising both IVIG and prophylactic antibiotics but as I am also allergic to penicillin my doctors are trying to keep a few things up their sleeves for later. CRABI is a definition used by my specialists although it is rare for them to treat the (I) section with a full on treatment regime. Thanks for the input!

  12. Tanja Says:

    I’m glad to hear you guys got moved and hopefully are settling in. We’ve been a tad bit pre-occupied with some other things recently and I’ve neglected to keep in touch. I hope to see the POM working well for you my friend!

  13. Pat Killingsworth Says:

    Great to hear from you, Tanja! Hopefully storms have been missing you back in Arkansas.

    And so glad that Leigh and Kate could hook up and share ideas here. That’s what our site is all about!

  14. suzierose Says:

    This is a very interesting conversation. I am baffled about the recommendation to remove the thymus gland. That is where the T-cells mature. The T is for thymus. Whereas the B-cells mature in the bone.

    Removal of the thymus seems like it would have a huge impact on the immune system to develop T-cells which respond to infections and perhaps limit immunotherapy options in the future.

  15. Leigh McCulloch Says:

    Hi Suzirose, my thymus was removed due to a condition known as true thymic hyperplasia which is very rare. The thymus gland normally shrinks in children whereas mine started to re-develop and cause problems with my immune system. At that stage I only had MGUS and my haematologist and immunologist considered it a reasonably low risk way of fixing the problems. It seems that this may have been a bad move now that my myeloma is causing immune system suppression. It has got the doctors scratching their heads as to how to progress with treatment hence the IVIG trial for the next 4 months. Hopefully it works! I am getting infections weekly and can go from being healthy to feeling lousy overnight. I am sure they will sort it out eventually.

  16. Joe Lurvey Says:

    We’re all different. Our myeloma is different. The way we live with our relentless, insidious cancer is different. Insidious is the perfect word for it. The definition of this adjective:” proceeding in a gradual, subtle way, but with harmful effects.” Sound familiar?
    I’ve learned so much watching how dear friends like Danny, Nick and dozens of others deal with their myeloma. I can best describe it as “grace under fire.” Waiting, watching; never sure what the next test results will foretell.

    These two paragraphs comes off the page to me! Thanks, Pat!

  17. Pat Killingsworth Says:

    You bet, Joe! The myeloma patient community is amazing!

  18. Jess Says:

    Pat my fiance and I pray for you every night…you are an inspiration for the rest of us battling this and watching our loved ones suffer. I luv your posts 😀

  19. jenny hack Says:

    Where can I get your book? i am hoping it may help me understand the numbers better. My numbers have jumped so I am trying another clinical trial. Going for another bmb Thursday. I am anxious to see if it changed in 6 weeks. Had my first pet scan which I think looks ok. I really try to live as normal as possible just the waiting gets to me. Being negative takes to much energy. Hope you are enjoying Amelia Island.Take Care.

  20. Pat Killingsworth Says:

    You can order any of my books–and some about myeloma from other authors, too–at And you don’t have to know how to use PayPal. Continue to the end of the ordering process and it gives you the option to use a credit card. Or you can order through or directly through me by check and save a few bucks. Drop me an email and I’ll get you information you need. Glad to help anyway I can. Sorry about the relapse; I understand how you feel!

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