Monday, June 3, 2019

Hello there! A long-overdue update.

Hello friends and other interested parties. I apologize for the long absence, but I'm happy to report that continued good health means a full return to life with all of its attendant responsibilities and time-sucks. :)

So as not to bury the lede, I remain in good health -- although I'm undergoing follow-up tests this week so I'm hoping that remains the case as this is the longest I've gone (six months) without detailed testing.

The other big news is that my beloved Dr. BB -- Bart Barlogie -- has retired. So I'm about to undergo my first serious round of follow-up with a new "quarterback".  Thus, I find myself back in Little Rock, with some familiar faces amongst the administration but a new doctor, Frits Van Rhee.  I'll call him FVR to save time rather than anonymity. :)

The decision of whom to see was not an easy one; there are many specialists closer to home (and after a travel snafu that had me driving five hours from Dallas to Little Rock yesterday, some of them seem more appealing) but I'm sorry so say that Total Therapy is not the standard of care for this disease, as science looks to new drugs to provide an easier path to long-term remission. Never mind that I'm sitting here more than 10 years from diagnosis with an expectation that the disease isn't coming back...

At any rate, it was important to me that I be seen be a doctor who has treated people with Total Therapy and has experience following up patients that have undergone the treatment. As an example, at some point (possibly even now) I need to be more concerned about the possibility of leukemia from the chemotherapy than I need to be about my myeloma returning.  So this narrowed it down to a handful of doctors across the country.

I know that BB holds FVR in high regard, and I'd been on a panel several years ago with FVR. He's probably treated more patients with Total Therapy than any doctor currently practicing, now what BB has retired. Plus returning to UAMS also allows me to track my progress along with the hundreds of total therapy patients (and more specifically the dozens (?) that were in my specific cohort). The value in this is that I can see if anybody has relapsed rather down the curve than me.  If, as I hope is the case, 95% or more of people once they reach the 10-year mark remain in remission several years later, it looks better and better for my own long-term outcome.

They're calling me soon, as I have to re-enroll here so it's like I'm a new patient. Maybe not the most efficient administrative approach but as long as they kept my stem cells, I'm happy with these nice folks.

I will say that I forgot how sleepy this town can be. Going to New York for follow-up the past three years has been a bit different. I got into town at 7:30 and could barely find a restaurant that was open. God wants people to eat on Sundays, too!!  :)

Today I have blood work plus a bunch of tests. Bone marrow is tomorrow. PET and other tests are Wednesday, and the doctor is Thursday. More to come.

I am profoundly thankful for my good health and for BB. For those following along who were also patients of his, I should say that I have been in touch and he seems to be doing well. Selfishly, I wish he was practicing but he's 78 now, I think, and has earned a rest.

14 comments:

  1. Nick, thanks for your update. You mentioned your concern about the possibility of leukemia and other side effects from the chemotherapy. Assuming someone was a TT4 light arm alumni about 8-10 years from starting treatment, and a recent bone marrow exam showed a possibility or concern of evolving myelodysplasia which could lead to MDS ("erythroid predominance with megaloblastoid changes") what current action steps should be taken?
    Would a second opinion at a major teaching hospital with MDS experts be useful even if they have no Total Therapy experience? Again, MDS has not been confirmed, rather the recent bone marrow tests only show some "concern".
    Further, note that Dr. Usmani wrote a detailed summary of such risks several years ago. "Risk factors for MDS and acute leukemia following total therapy 2 and 3 for multiple myeloma" in the journal "blood" showing an eye popping percentage of patients at least getting cytogenetic abnormalities.
    http://www.bloodjournal.org/content/121/23/4753?sso-checked=true

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  2. Sounds like great news overall!

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  3. Nick thank you for this update. I have been debating about switching to Little Rock as Dr. T's departure was a difficult shift for me. I would be interested if some things have changed for the better at Little Rock; especially BMB procedure. Also do you get your test results quickly and before seeing the doctor? I do not have your email address to send more detailed information. Thanks for this post. Cp in Ventura

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  5. As a sign of gratitude for how my wife was saved from myeloma, i decided to reach out to those still suffering from this.
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  6. Great to see your post. You helped me decide to go to UAMS. So far so good. Just passed my first year on maintenance and all tests are good so far. Van Rhee is my doc, as well.

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  7. My mother received treatment from Bart starting in early 2018. She was in a really bad place and is now in followup care. Her hair is coming back and there is no indication of the mutated cells in her body. Bart had her undergo tandem chemo treatments with stem cell replacements and 3-5 years of followup treatments. She is doing wonderful! We had a special relationship with Bart and he always kissed us when we came in! Heartbreaking to here he retired..(which, one of our nurses said was not the case. She said he got into a battle with the hospital and left! This leads me to believe that he is going to reestablish somewhere else.) I am hoping someone has some news they can share on this?

    The last session we had with Bart was in November of 2018 and he said that mom was in stringent remission! I really hope/wish that he is not retiring and someone has some news as to where he is.

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    Replies
    1. I am a Bart patient and yes his "retirement" was abrupt...we have stayed in touch and even met in NYC on the street...looks like he is retired.

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