Tuesday, November 17, 2009

Good news from today's doctor visit, returning to work, and other stories

Hello folks!

First of all, thank you for the emails, comments and other communiques about my return to work. Day two is over now, and it's been great so far. Of course, frankly, if I wasn't basking in abundant good will from my other "cast members" (as we call them) on my first day back after being out sick for eight months, it would be a pretty bad harbinger. So I expected yesterday to be a really good day -- and it was. :) But I am very excited to be intellectually engaged in something other than hematology, and it feels great to be plugged back in. I got a nice note from our CEO, and everybody else has been warm and fantastic.

I had my infusion appointment and visit with Dr. GD today. I like GD a lot, and I appreciate that he is following BB's instructions to the letter, essentially, minus a little push back on lab frequency. But he is short, not to say taciturn. I feel rushed with him, and there is little effort to answer questions or provide labs, etc. Arkansas is much better about this. Fortunately, I know what to look for. He would have just said "everything looks good, you're doing great" and sped out of the room. But thankfully I was able to briefly flip through and see the all important note:


This, obviously, is


And just how awesome? Well, as the kids are saying, let me "drop some knowledge on you".

Here's the latest published data from Arkansas. The "tag line" at the top of the page speaks for itself.

Consider that nobody else believes it's even curable...and yet cure is now anticipated for the majority of low-risk patients!!!

Look at that red line. Over 90% of patients that achieve complete remission remain in complete remission more than four years out. I told this to to GD today and he shook his head and muttered "that's amazing" under his breath. Before he basically ran out of the room to see another patient, that is. :)

I am in complete remission. Not all low-risk patients achieve it, as you may recall. But about 60% do, and I'm in that group, which means I now have the highest degree of likelihood of long-term remission. And as we know, long-term remission equals cure in the Arkansas protocol.

I am sitting pretty on that red line, and I'm gonna stick with Velcade, Revlimid and Dex for as long as I need to. One thing I'll consider is that Revlimid is used out here by Dr. RV, one of the folks with whom I would have consulted early on but for the fact that I had already decided what to do, for as long as the patient can tolerate it. I might ask BB what he currently thinks is best for people. He uses more Velcade now than he used to do...and the results in that chart reflect less Velcade than what I will be on. So if anything, I hope to do even better. I am also mindful that I have the nasty subtype of the disease, which gives me a little less confidence than would otherwise be the case. I will ask BB if he wants to increase the Velcade by 30%, as he once mentioned, with this in mind. We want to see those bones heal up, too.

But basically, I'm optimistic that I'm cured. And I'm so thankful, again, for the early diagnosis, and the time to do research, which led me to BB and the belief that for the newly diagnosed, low-risk patient, there is simply no better alternative.

Now, as to the less important data from the doctor's meeting. It looks like platelets bounce around between 110 and 150 depending on where I am in the Revlimid cycle. White count bounces around between 4.0 and 6.0, which is a little low but that's okay. Red blood count bounces around between 13.5 and 14.5, which is again slightly on the low side but still good. All my blood chemistry is normal, except for phosphorus, which is a hair low. I asked the nurse if I should eat a road flare. She said probably not.

Every time I speak of how well I'm doing, I think about my friends with the disease -- both those I've met in Arkansas and elsewhere, and those I've met from around the world through this blog -- that have not fared as well. For these people, I once again offer my prayers and profound respect, and also the hope that regardless of where we all are in our treatment, there has never been more hope for Myeloma patients than there now is. Carfilzomib, Pomalidomide, and new trials offer exciting new therapies that have been shown to be effective where other treatments have failed, and which have fewer side effects than current therapy. Do not lose hope, people. Do not give in to this disease. I know it is easier said than done. But I also know that steeling yourself to be relentlessly positive in the face of this disease is the best ingredient you can bring to your treatment.

Love to you all,



  1. Best. News. Ever.

    Congrats on all of it!

  2. Hum... Ok, so if two comments show up, ignore one because I thought my comment went through before. OK, take 2:

    I agree with Scott: that is the best news ever! What an awesome week for you. I bet it was great seeing everyone at work again. I am certain they missed you! Just remember to take it easy and rest when you can. Your job can be intense so don't let it wear you out. Take care of you first.


  3. Nick,
    This is wonderful!!! Your strength and ability to stare life in the face is an inspiration. I am blessed to have an influence like you in my life and more blessed that you share your life with me. Never be broken!!!
    All the best,

  4. Huzzah, Nick! Great report on all fronts! Full steam ahead.

    Quick question: is your 13.5 - 14.5 count listed for RBC or hemoglobin?

    BTW- Had my second (of 156,as you well know!)maintenance treatments and all looks great. Like you, I have a couple of little munchkins to see grow up.

    I have a feeling that you 'wear the ears' as well as anybody out there. Congrats on getting back to work. You posted earlier about the MC deal. Please remember that not all of the superheroes are the guys in the tights. Keep hitting it out of the park, Myeloma Man!


  5. Beyond awesome, Nick. From diagnosis, to treatment, to complete remission and back to work in a year flat... I'm floored.

  6. Sean, always good to see a note from you! Hope you and yours are doing well!

    In answer to your question, I track my red counts in Hemoglobin. Probably because that's the number that tells them if you need a unit of blood! For those following along at home, if it goes below 9, BB likes to give you a bit more. I dipped to 8.8 at my lowest. At around 14 now, I'm feeling pretty good!

  7. Amen for us both being low risk. I keep hearing incurable cancer, but that doesn't jive with the data that I am looking at. Thanks for shedding light on other opinions. Let's keep a little hope in the room; based on facts.

  8. Hey Nick!
    This is my first comment to you but I just wanted to say congratulations on your "normal profile" that is tremendous!!!!!

    I happened across your blog from the "Michigan Man" and I happened across his blog while doing lots of research for my aunt. She was diagnosed with MM just 3 months ago but she's doing well under the care of Dr. RV

    *side note* my husband is a "cast member" too! =)