Welcome to my nightmare... (song title, not bad news)

Folks, it's been a little while since this blog has been amusing, so I thought I would post a minimal update here just because it struck me as funny.

In a post-Revlimid world, I have to be cautious about secondary malignancies.  Regular readers will recall I had to have my index finger carved up to remove a squamous carcinoma (skin tissue cancer).  Plus I had that nasty viral issue that manifested as hand / foot / mouth disease (not to be confused with hoof and mouth disease, which I might get one of these days).

The upshot is, I am pretty watchful as to my skin these days.

My wife noticed a freckle that seemed to be changing pigment, so I was finally, after some difficulty, able to get a dermatologist on my insurance plan who was recommended by my primary care physician.  I went to see her.  I won't even use initials here because what I'm going to say isn't the nicest thing in the world and I'm sure she's a very good doctor.

For starters, she was a dead ringer for Alice Cooper.

I mean this is almost an exact copy of her except Alice's eye makeup is a little less extreme than hers, and her hair was much more...uhh...vertical than this and quite a bit messier.

Now, I'm no prize myself most days so far be it from me to pick on somebody for their appearance, particularly when they're involved in my care.  But it was an amusing comparison.  I mean I feel like I'm looking at a picture from her medical school yearbook when I look at this photo here.

After giving her my illustrious medical history, including the skin cancer and the weird hand / foot / mouth thing, we went into an exam room.  The exam room smelled like...

Well, let's put it this way.  Ever know an extremely socially awkward, nerdy guy who was very booksmart in high school but whose parents never informed him about body odor?  When I was in business school in Boston, I took one class at MIT.  Every student there is, by some measure, a genius. But many, seemingly, fall into this category of brilliant kids unaware of basic anatomy when it comes to sweat glands and armpits.  I remember walking into a stairwell with about 100 of these kids and the concentrated BO was almost enough to make me black out.

The exam room smelled just like that.

Ugh.

I almost said something because I didn't want Dr. Cooper to think it was *me*, after all.  Then I though "my God, what if it's HER and I say something?"  So I kept my mouth shut.  She couldn't *possibly* think it was me, I thought to myself.  It smelled like an elephant had died in the place, had decomposed, and had only recently been removed.

I withstood a couple of biopsies of tissue on my back and will get the results in a week, after which I shall dutifully report them, dear reader.

The other thing I had Alice look at was my fingernails.  After falling out from the H / F / M virus, they have regrown fully (except for the mangled forefinger where only some of the nailbed is capable of growing tissue -- I'm growing that out as best I can so I have something there, but it ain't pretty).  There are some strange anomalies like a non-rounded nail on my left thumb (instead of just being one smooth arc from left to right across the face of the nail, it's ridged somewhat).  Dr. Cooper said this was nothing to worry about and was likely the result of the virus, which should resolve over time (months).

There you have it folks.  Next time you hear "Schools Out for Summer" or "No More Mr. Nice Guy," remind yourself to make an appointment with a dermatologist for a checkup.

Setting the record straight on my MRI

Okay...so this is one part public service announcement and one part making sure I've got my act together!

For some reason, I always want to think there are a "couple" of pits left in my spine.  I was looking through my last MRI, and there are five.  So in order for me to remember this important fact, I'm making a post on it.

The public service announcement is what I've learned about MRIs and how to read the report.  So I'm going to put mine up here and say what I think it means.  :)   The italics are my comments.

9/11/12

MR OF THE SPINE AND PELVIS  I got out of a full body one this time, saving me some time in the machine

MR TECHNIQUE: Sagittal T1 and STIR weighted studies of the entire spine and coronal T1 and STIR weighted studies of the pelvia.    Sagittal refers to the plane of the scan, as does coronal.  T1 and STIR are different types of scans.  My understanding is that the T1 has higher image quality, and STIR causes any lesions to stand out more prominently, so the two are used together.

COMPARISON STUDY: MRI of the spine and pelvis of 4/9/12  Obviously we're looking at how things change over time

FINDINGS:

STIR weighted studies of the spine and pelvis demonstrate a hypo to isointense marrow in relation to adjacent muscles.  On T1 weighted sequence, the marrow is hyperintense in relation to disc interspace.  Signal intensity is heterogenous on STIR weighted study and homogenous on T1-weighted studies.

Well this one is a mouthful.  There are three ways to describe the intensity of marrow relative to nearby muscles: hypointense (there is less of it), hyperintense (there is more of it) and isointense (it's the same signal strength as the muscles).  Because the T1 scan reacts more strongly to the presence of water in the body, it makes things look more hyperintense so the STIR study is the more important one to go by. According to this, I have hypo to isointense marrow, which means there ain't as much of it yet as a normal person would have, I think.  Probably not surprising since normal people haven't had their bone marrow totally destroyed twice by high dose chemotherapy, and then suppressed on a drug cocktail for three years.  :)

The other vector here is homogeneity (all the marrow is distributed the same) versus heterogeneity (it is more splotchy).  I'm homogenous on T1 but heterogenous on STIR; I'm not sure what that means although perhaps it means I'm not quite normal but getting there, in terms of distribution of the marrow.

In the cervical spine, heterogenous marrow is identified with no distinct focal lesion noted.  Degenerative disc changes at C5-6 and C6-7 is noted with disc protrusion as identified at C5-6 and C6-7 unchanged from the previous study.

These discs were on their way to being destroyed by the myeloma, but we got to them before they broke.  So they're a little tweaked but should be okay.  The marrow, again, is heterogenous -- MM attacks the spine in many cases and I was no exception -- it was active in a lot of places in the spine.  We'll eventually want the marrow to be homogenous here, I think.  C5-6 and C6-7 refer to the cervical vertebrae -- these are the 7 vertebrae beginning with C1 at the base of the skull and continuing down through the neck.

In the thoracic spine, small focal areas of hyperintensity involving the vertebral bodies of T2, T3 and T4 are again seen.  Fracture with vertebroplasty changes at T4 is again identified.  Vertebroplasty changes at T11 remain stable.  Focal areas of hyperintensity involving T10 and T12 are again identified.

These are the thoracic vertebrae and they run from the middle of the neck down through the back. Here, I have some patchy marrow (the hyperintense areas haven't recovered) and we see two of my repaired vertebrae and T4, and T11.  There are focal areas at T2, T3, T4, T10 and T12.  So five small spots that are still here.  They don't specify the size -- the time before they had been identified as 4mm or so.  

In the lumbar spine, no new focal lesions are identified.  Fractures of vertebroplasty changes at L3 and L4 are again seen.

The other two broken vertebrae are in my lumbar region, at the bottom of the back.  So that's a total of four repaired vertebrae.

In the pelvis, a slightly heterogenous marrow is noted without distinct focal lesions.  No evidence for avascular necrosis of the femoral heads are identified.

So again, the marrow is a little patchy here, but there are no remaining focal lesions.  This is good -- I had an 8cm lesion here at one point!  Avascular necrosis is bone death from a lack of blood flow that can be caused, it is believed, by chemotherapy.  So I'm glad they checked it, and I'm glad I don't have it!

IMPRESSION:

1.  Hypointense heterogenous bone marrow on STIR weighted studies.   I need more marrow, more evenly distributed, for this all to look normal.  How much is due to the Myeloma versus the treatment is unclear -- I suspect mostly the latter.

2.  Stable small focal lesions of T2, T3, T4, T10, T12 vertebral bodies.   This is the part I don't like.  Five of them, and they are stable -- meaning they didn't shrink from the last scan six months before.  This is what BB wants to go away.

3.  Stable vertebroplasty changes at T3 and T11 vertebral bodies.   They didn't sum up the lumbar ones...I wonder why?  I also wonder about the "fractures" reference -- is the vertebroplasty fracturing?  Or is this simply because those vertebrae had actually fractured before the vertebroplasty was done there, whereas in T3 and T11 they damage was caught before the bones actually broke.  Hmm....something to ask somebody about.

4.  No evidence for avascular necrosis of the femoral heads are identified.  Whoopee!!  :)


So there you have it, folks, the readout of an MRI.  And I have a reminder that I have FIVE lesions that I want to see fully resolve.

Thought on maintenance from a friend

Two posts in a week...been a while since there was that much newsworthy stuff to share!  :)

I'm pleased that among the many fellow travelers I've met on my journey is one terrific lady, CP.  I believe CP was diagnosed in 2011 and has been kind enough to tell me that she found this blog and her subsequent conversations with me useful in determining where and how to be treated.  She is being treated by Dr. GT, who worked with/for (depending on whom you ask, I suppose, haha) BB.

Like BB, GT believes the disease can be cured in a good portion of cases, though GT is more guarded about using that word, from what I can tell from the people I know that have seen him.  GT uses a similar program to BB.  Induction with VDT-PACE, two transplants, conslidation chemo (VDT-PACE again) and then maintenance.

A couple of interesting differences: during the second transplants, GT uses a different agent from Melphalan...I believe it's Bendamustine.  Another version of mustard gas, essentially.  I'm not sure if this is because he doesn't want as much Melphalan used, or if he wants to mix it up yet again.  Bendamustine is, I'm sure, part of the 9-drug cocktail SUPERBEAM that BB uses in "high risk" patients but he doesn't use it on low risk patients.

The other difference, which I learned from CP just yesterday, is that GT only does two years of maintenance.  And this is what I thought was notable enough to blog about.

The BB protocol is three years of VRD in maintenance (for those new to the blog or just reading this out of nowhere, I'm using a lot of acronyms in this entry -- please email me if you have questions.  In fact maybe I'll put a glossary entry up one of these days!).  After the three years, if all has gone well, you get a pat on the back, a hearty handshake*, you are told you're cured, and you go on about your business, with annual checkups to make sure everything is still good.

In my case, I had these stubborn pits in my spine, and at the time BB was very concerned (as was I) about the MYC gene that I had originally overexpressed in my baseline cytogenetics.  He took marrow from some former lesions and while we waited for the results, I contemplated the unusual position of having to undergo significant additional chemo (VDT-PACE, probably) despite being in complete remission.

Thankfully, the marrow came back negative and all looks good, including the MYC gene being normal.  And we settled on single agent Velcade as maintenance, because BB's theory (which he readily admits is just that: a theory) is that as long as those pits in the spine are there, some MM cells that haven't gotten with the program could be hiding under the proverbial rock, waiting to resume the party after the police leave.

So we stay on Velcade, as noted with some regularity.

At any rate, I had asked CP if she would ask GT for his thoughts on maintenance and she was able to do so, and he reported back a few things that are interesting both for their consistency and points of divergence with BB's protocol:

•  He doesn't believe in more than two years of maintenance, due to (1) diminishing returns, and (2) the likelihood of secondary malignancies.  It is worth noting that with respect to (1), the rest of my lesions other than the spine pits filled up with new bone during year two of maintenance, and the pits shrank during this time, and during the last year they have been stable.   With respect to (2), I'm typing this with nine fingers since my pointer finger had a chunk cut out of it from the squamous cell carcinoma I endured during the third year of maintenance, and this was also when pre-myelodysplastic cells (an early indicator of potential leukemia) showed up in my marrow.  So I would say that GT (whoops, almost typed his real name, although at this point I'm not sure why I bother with a thin veneer of anonymity) seems right on with regard to these points.  Sorry (and hello) to any UAMS folks reading this!

• He thinks that any lingering lesions are unlikely to have any MM in them.  

• He recommended doing a FNA (biopsy) of those pits, which is what BB wanted to do but they are too small or inaccessible to do that with.  So BB did the next best thing which is to needle several other spots that used to have active lesions.

• He said if they were still positive for MM, he would radiate them.  BB is not, to my knowledge, a big radiation guy.  And in any case I am negative for MM elsewhere, so hopefully these are negative as well.

The sum total of all this?  I'm sticking with the Velcade...but I might have gone to single agent Velcade a year ago and avoided getting my finger chopped up, and the scary pre-MDS cells...

All stuff for your consideration, fellow patients.





*n.b.,  Before editing the typo, I had originally typed "heart handshake."  Given the aggressive approach employed by BB and crew, I made sure to correct this lest people think that was an actual medical procedure!

Another reference to Myeloma being curable.

I'm involved in a number of online forums for the discussion of Myeloma (including some other blogs) and there is occasional a zesty debate about whether or not the disease is curable.

I have noticed, in the four plus years since my diagnosis, a growing number of doctors saying that the disease is being cured in some cases.  Of course BB's contention that the majority of newly-diagnosed cases can be cured is still an outlier, but it's increasingly less so (is that an oxymoron, or just poorly-written?) these days.

In one online exchange, a patient named Reed Whitener posted a reference to "his story" at the cancer center where he was treated.  Since his name is featured on the web page, I hope I can reproduce it here without offense.

At any rate, the website uses the "cure" word -- albeit in quotes.  Something to think about.  I've not hear of the Massey Cancer Center and I'm not even sure what their protocol is, although it looks like tandem transplants, which has been the centerpiece of BB's protocol for 20 years.

Here's "Reed's Story" at the VCU website. That's Virginia Commonwealth University, not Vet Care Unlimited! :)

More on Velcade allopecia

Hello folks.  I don't want to keep carping on this situation, particularly as I have consistently counseled people that hair loss in Myeloma treatment is a necessary evil that you shouldn't dwell on...but my primary therapy has been over for three years, damn it, and of all the crappy genetics that I've got, the one thing I've been fortunate enough to have is a good head of hair!

Anyhow, it's worth mentioning only because the guy who has been cutting my hair for the past ten years commented that the hair is definitely different than it was even two months ago -- more frail, brittle, etc.  There is definite thinning, and it's not happening in a normal "male pattern baldness" way.  It's happening on the crown or just behind it, but according to the hair dude I would have shown thinness there when I was 18-20 if it was going to happen, and since I didn't have that, this is not natural.  Hence, Velcade.

I will certainly deal with it and I'm not going to stop Velcade therapy just to keep the hair healthy, but I will not miss this drug any more than I miss Revlimid or Dex.

I document this mostly so those who search for "can Velcade cause hair loss" can find somebody to attest that yes, it can.

Onward and upward.  Hug your hair today.

Not much to report, other than ongoing Velcade inconvenience!

Happy New Year and good health to you all.

A brief update for you.

I was off Velcade for two weeks (meaning three weeks between infusions), though I did visit the doctor for bloodwork one week (the other week was Christmas).

I did get the stomach flu twice.  It had been going around, and I documented my first bout of it here.  The second bout came at the doctor's office, actually, on the day I was worried about extreme GI pain.  Turns out it was related to another bout...or at least I *think* it was given that I got sick in the parking lot after the appointment.  Eep.

The hair issue certainly feels Velcade-related as well.  It feels finer, dried out and more delicate when on Velcade than it was even with only two weeks off.  I notice it falls out when on Velcade as well.  The head itches, too.  I'm sure they are related.  It's not going to be enough to keep me off the drug as I want those damn pits in the spine to heal up.  But it's irksome.

The other GI ailments -- dysyntery, basically -- continue unabated.  They continued even while OFF Velcade, albeit not quite as badly.  So my poor intestines are going to need an undetermined amount of time off before I return to normal, even when off meds.

I confess to a bit of unease these days as I look around me and see friends who entered treatment around the time I did started to fail primary treatment and look for new methods of controlling their disease.  We're entering the phase where the "cured" start separating from the "controlled" and...well, I sure hope BB is right, is the point.  I have essentially reached the start of the plateau of the graph for low-risk patients that achieved compete remission.  In another three years I'm pretty sure I'm in the clear for good; in another two the life insurance vultures can start trying to sell me more product.

Meanwhile, it's watch, and wait, and hope I keep my hair!  :)

I do want to add that "chemo brain" is real.  I noticed a definite lack of focus and drive over the past 18 months.  I am still hoping to avoid Cymbalta (an anti-depressant), which BB has recommended from time to time.  However I'm starting to be more open-minded to it.  Still, I would rather get off all drugs for six months and see how I'm feeling before I decide I need something to keep the ol' serotonin in balance.

More to come as events merit...next visit to Arkansas in about 10 weeks.