Friday, January 14, 2011

Normal marrow and other thoughts, including BBs opinion on the Revlimid scare

First off, everything looks good. Marrow has 50 percent cellularity, 5 plasma cells, 2 percent core plasma cells and is negative for Myeloma. Also, my hip doesn't hurt all that much so the new bone marrower must have done a good job!

I got to the clinic early today. I had a 12:45 appointment with BB and, keeping in mind that last time I got to the clinic early and got seen pretty quickly, attempted the same. I got there at 10:30 or so. Sure enough, I met with the research nurse pretty quickly. Hard to believe I am heading into my 17th month of maintenance already.

Then things slowed down. Waited in the clinic for about an hour, then got put in a room. I read my labs...the MRI, unfortunately, did not indicate any shrinking of the four remaining focal lesions. They were stable, but did not resolve. My blood work came back negative for M protein under SPEP, but there was not yet a result from Immunofixation which is the more sensitive measure.

I observed on the MRI various characterizations -- hypointensive marrow, hyperintensive marrow, isointensive marrow, homogenous marrow, heterogenous marrow, etc. I tried to discern any differences between the previous scan and this one but I lacked the knowledge to figure it out.

I sat and waited, and waited, and waited. I had a flight to catch and wanted to leave by 3PM and it was starting to look dicey. At around 1:45 the clinician, a terrific physician's assistant named JA, arrived. He called and got the bone marrow results, which was a relief. He explained that what we are looking for is homogenous marrow, as opposed to heterogeneous marrow, as the latter implies patchiness. So in this context these descriptors do not refer to the cellular content of the marrow but rather the evenness of its distribution through the body.

The other vector -- hypo- hyper- or iso-intensivity -- is a little more complicated. MRIs (at least the ones done here) use two types of images: T1-weighted and STIR. I have no idea what these distinctions mean, but JA explained that T1-weighted images focus on the liquid in one's body which makes the readings of marrow hyper intensive. So the ones to look at are the STIR images, and the best reading is evidently isointensive (which means the same all over).

For what it's worth, I am mildly hyperintensive. Sadly I learned what all this meant after I turned the file over to JA but next time I will see what I used to be and how it has changed. All of this is subjective and up to the tech that interprets the MRI, so one's mileage may vary. I was told by JA that BB would not react to any of that data, although he reminded me that "sometimes BB sees things in the data that the rest of us do not see."

It was now 2:15 and I reiterated that I had to get on a plane at some point original appointment time with BB was 12:45. JA said that BB was almost back on schedule and I should be able to get out of there by 3PM, which would be perfect.

Then I sat down with the man himself.  He looked troubled (though not by me).  He got on the phone with the hospital, got some people on the line and was quite upset.  From what I gathered, one of the APN (uber nurses) in the Myeloma clinic had developed Waldenström's macroglobulinemia, which is itself a blood cancer.  BB had done rounds yesterday and noticed that this person's white cells were at zero.  He ordered a bone marrow and asked that stem cells be readied.  When BB saw the results of the bone marrow he ordered the stem cell transplant immediately.

Apparently the doctor at the hospital who had to sign off on this cited protocol that the two things (bone marrow biopsy and stem cell transplant) cannot be done on the same day because it can create a chaotic environment in which patients can be at risk.  BB's point of view is that this isn't done every day, and that if exceptions cannot be made when a person's life is at risk, there is something seriously wrong with the policy.

BB laid it on the line: if this young man dies because of this, he is gonna give it to everybody over there with both barrels and hold them responsible.

I mention this because BB becomes personally invested in the patients under his care.  I have written about this before.  Every patient lost to Myeloma is an affront to him.  He confided that this has been a "horrible year" so far and that half a dozen high risk patients have been lost.  "you follow these people and treat them for so long, and then to lose know..." I could see how it affected him.  He said that "it's as though there is nothing in common between the two branches" -- meaning he really does think that most low risk patients will be cured.

While waiting for him, I spoke at length with a gentleman who looked to be in his late 50s who was himself high risk but was still in remission three years after he began.  High risk patients achieve remission easily but the recurrence rates are frightfully high for the first three years.  After that, they flatten out and recurrence risk is very low -- in fact they are likely cured.  The gentleman with whom is spoke is three years out.  When he last saw BB, the doctor said "you are almost out of the woods...but not quite!" and winked at him. Hopefully this guy -- who looked great, it must be said -- is out of the woods now with this current visit.

That man and I spoke, as it happens, about BBs humanity.  He has an edgy sense of humor and is an iconoclast and is the same guy who jokingly pulled a clump of hair out of my head and pointed out how fat I was last time I saw him.  Yet his care for his patients is immense.  The high risk gentleman told me of how he thought his major courses of chemo were finished during his primary therapy (like me, he is on maintenance) and he was saddened to learn at the time that there had been one more course.  Evidently he had been misinformed, and BB was angry.  He got on the phone with whomever was responsible and said "dammit these patients go through hell, you cannot pull the rug out from under them with this."

Back to the present.  BB was happy with everything in my chart except for the presence of the focal lesions that we want to see resolve (I have four or five left...two in my spine, one in my right hip, and one in one of my shoulders, possibly one in my rib).  These are no longer FDG-avid -- meaning there is no cancer -- but as long as they are there, there is a chance that they can form a microenvironment for recurrence of the cancer (such is BB's theory, at least).  "Sometimes, these ghosts can could take years in some people before they go away.  But we want them gone."

I suggested Zometa and he agreed, so i will get one course every month for the next four months.  He said he was "considering doing a fine needle aspirate of the lesions" but that the last time that was done, they were negative for Myeloma so he was not yet ordering it, and i will not need a PET scan next time either.  I cannot say I am happy about the prospect of the FNA but I will cross that bridge when I come to it.

He offered me the ability to come back in six months rather than four, but i want to see these gone, and I want to hang out with BB, frankly, which we were not able to do this time.  He asked about my family and told me to email him directly next time so that we can arrange dinner.

Then he said "you know, I saw a newspaper article about my good friend RS, who used to work with us here and now operates out of Hackensack...and this pisses me off.". He showed me the article, which was about Dr. RS's enthusiastic support of Carfilzomib, the next generation protease inhibitor which works in many cases where Velcade no longer does.  The offending line in the article (which were not RS's words) referred to Myeloma being a disease which is "uniformly fatal.". BB said "why do they say that?"

I said that it upset me every time I read something similar, whether in an article like that or a fundraising letter from the MMRF (long-term readers know that I hold this organization in immense esteem, its refusal to acknowledge UAMS' results notwithstanding).  I said I felt it was a slap in the face to the work being done at UAMS and to patients who have undergone treatment and been cured.  We mused that it was in part a desire to maintain urgency behind fund raising and new drug development, but BB said "when you are curing childhood leukemia, you can raise money by pointing out the tremendous advances being made.". That is true, although I do think maintaining urgency behind a disease that cannot be definitively cured in virtually 100 percent of patients is pretty important.

I then asked BB about the Revlimid scare.  Unlike GD, when I asked this of BB he knew immediately what I was talking about and I didn't even need to finish the sentence.  His response, verbatim to reflect both his personality and his passion:  "that's total bullish*t.  Absolute bullish*t.  We have seen hundreds of patients for many years and it's never happened.  Somebody is selling something or has another agenda."

So there you have it.

Our time up, BB stood up and embraced me for a good 20 seconds and kissed me on the cheek, telling me again to give my family his best.

I cannot wait to see him again.  I love that man.

Notably, I am on a flight to Las Vegas and the makeup of the passengers looks like a church group. Not sure the point of a church group going to Vegas...