Friday, December 23, 2016

Happy holidays -- a quick update

Hi folks.

I've not updated this page in what seems like ages, mostly because there hasn't been that much that is interesting. However, a couple of you have been kind enough to reach out -- which I very much appreciate -- so let me say that I'm doing fine and here's a very quick update.

* I'm now seeing BB at Mt. Sinai in NY, where there are hitches relative to the extremely well-oiled machine at UAMS but which is improving. There are very good people there.

* I had a checkup there about three months ago -- my second in NY -- and everything is clean as a whistle. They do not do MRD testing; they do a kind of "deep sequencing" analysis which shows no Myeloma but a gene that is switched on that could, if all the dominos fall in a certain direction, lead to a precursor to leukemia. This could be a result of all the nasty treatment I had, or it could be absolutely nothing as by the time we age, 20% of the population has this same propensity. For the moment, there's nothing we can act on even if it IS something bad, so we soldier on.

* There was some nastiness afoot this past year when an organization similar to NICE in the UK tried to prescribe a single path of cost-effective treatment for Myeloma. This effort was backed by Mayo, unfortunately, under the heading of making treatment available for more people (paging Dr. Sanders, Dr. Bernie Sanders) but thankfully the organization backed down in the face of opposition from patient rights groups and patients themselves. For the moment, they agreed there can be no single path for therapy.

* I had more tissue cut out of my right index finger, which turned out to be negative, over scares of a return of the squamous cell carcinoma that was a side effect of the VRD treatment I was on. As I said, after digging through my poor finger's nail bed not once but TWICE, it was determined that there was no cancer there. So now I'm without a nail, but once again it's a tiny issue relative to everything else that could happen.

* I return to NY next summer, date TBD, for regular follow-up, and continue to be monitored locally on a more regular basis.

* I remain active in helping others with the disease and am pleased to be contacted by people that find this blog. Please continue to reach out to me if you need help.

That's pretty much it -- onward with life! Happy holidays to you and yours!

Warm regards,


Thursday, February 4, 2016

Continued sCR...and the coolest thing Donald Trump ever said!

Well, I was wrong about the number of miscues here. It was a little chaotic, in part because I don't yet know the ropes myself in terms of who speaks to whom and how things work, but in general, things went well due to a combination of my usual lovable whining and Bonnie's hard work.

The port was accessed and all labs were done from it. I had to get them to leave it in -- normally they don't discharge people with the port accessed. But the first time, I was successful. I got my EKG and chest X-ray done. They tried to tell me I had a PET scheduled at 1PM...which was not possible because I had a meeting I had to attend, so no dice there.

I returned for my MRI at 6:15 in the evening...and this took a long while. I waited over an hour before I got put in the tube, and they did MRIs of my hips and spine which took nearly 90 minutes between them. These scans are MUCH quicker in Little Rock for whatever reason. But they had some headphones so I could at least listen to the radio for some of it. It was a little challenging because I had some discomfort in my lower back, but I managed.

I went back the next day for bone marrow, and they weren't able to use my port for the propofol for whatever reason (it was very professionally done, this whole thing, but it was much quicker than Little Rock -- I was surrounded by about five people from the moment I got my gown on and there was no dead time between walking out of the changing room until I was about to get knocked out. They started a regular IV, I got knocked out and woke up with a doctor saying I was right to get sedated because "you have the hardest bone I've ever encountered and I had to push incredibly hard to punch through." Sounds like the type of thing I'd like to not be awake for.

Yesterday was spent working, although they tried to get me in for a PET (by this I mean they called me and informed me I had missed an appointment...but nobody bothered to tell me I had one and I couldn't have made it anyway).

Today, I saw Barlogie. MRD results are not in yet, but I am immunofixation negative, light chains are good, bone marrow is clean, etc. Interesting, the MRI shows a lot of crummy stuff going on with my back (mostly a result of aging plus the crushed vertebrae, so I have compression fractures and stenosis, etc.) but the MRI did NOT show any former lesions. I suspect they simply missed them, so Bart asked the tech to review it again. If they are gone...then I am in what Bart would call "MRI complete remission." Which is the closest thing to definitely being cured that there is. Bart also used to call this "Arkansas Complete Remission" and I noted that he'll have to change that -- we decided on "Barlogie Complete Remission."

Speaking of Arkansas, I'll now probably send them the materials we've collected and if the MRI is clear, I will do a phone consult only. If the MRI is not clear, I will go there and get the PET and FNA, if possible.

And also speaking of Arkansas, how cool is this? Even if you can't stand The Donald, watch the first couple of minutes of this speech he just gave this week to 12,000 people in Little Rock.

Monday, February 1, 2016

Hello from NYC

Hello friends. I'm sorry it's been so long between updates -- things have been rather busy with my day job of late, as well as my hobby. That and general good health make for limited updates here.

In part, I didn't update anything on my decision about whether to continue to be seen by the folks at UAMS in Little Rock versus following my beloved Dr. BB to Mount Sinai here in Manhattan because I hadn't yet made a decision. And in a sense, although I'm currently sitting in a waiting room on the upper east side of NYC, I still haven't.

My primary concern with following Dr. Barlogie is that he is no longer the big fish. He is on the staff of his former colleague Dr. SJ, and things will roll along here in large part consistent with the existing culture. This means it's been very hard to schedule (though a change in my insurance carrier didn't help either). I'm trying to do something very simple and in sequence: access my port for blood and other dirty work, get a PET scan (using that port for the tracer), get by knocked out one time, have a bone marrow biopsy and a targeted fine needle aspiration guided by the PET to sample any unresolved lesions in the bone, and talk with the doctor.

The over-under on things that go wrong with that plan is four. I suspect I will leave here without the fine needle aspiration done, for one thing, and that I'll be stuck full of holes anew. Having established those odds...I'm still leaning towards taking the over.

For this reason -- and because after all Dr. BB is in the third act of his career, so to speak -- I'm reticent to pull up all stakes at UAMS. I want to keep a foot in both ponds, at least until I see how things tick up here in NYC. So I'm leaning towards getting my testing done here and then doing a phone consult with the folks at UAMS, versus having two sets of tests done.

We shall see if that is permitted.

Meanwhile, I'm waiting to be called but I already miss certain "homey" touches from Arkansas. I was counting on a tissue and a cup of coffee and they have neither, and the familiar faces from the infusion center at Little Rock are of course missing.

On the other hand, I have more food choices this week than was the case in Little Rock. And I have a fair amount of work I can get done in this great city. So onward we go, with a foot in both ponds for the time being.

Real-time update: a big hug from the irrepressible BJ has just made everything seem great here. :)