Scanxiety!!!

What I have not publicly reported until now is that, since my first visit to MSK, their radiologists and those from Northside Hospital (my local treatment center) disagree as to what my previous scans show.  Though some of this disagreement might come down to semantics, the label used by MSK is at least different enough to make me nervous.  Here's an example:

What Northside radiology refers to as a "stable nonspecific bone lesions of the left ilium and superior right acetabulum", MSK radiology calls out as "bilateral several enhancing osseous lesions in the pelvis, consistent with metastases".

In fact, it turns out that one of the reasons that MSK said "surgery would not eradicate the disease" was because they had already concluded that I had disease progression on both sides of my pelvis.  Though it is true there is but one soft tissue mass, MSK believes that there is metastases bilaterally in my pelvis bones.  Obviously that's not the news anyone wants to hear.  Wasn't I dealing with enough already?!?  I have since accepted that they are likely correct in their diagnosis, though it may have little bearing on my situation.  The paragraphs that follow explain why.

Upon my return from MSK, I shared this news with my local oncologist (Dr. Kamal Ummed), who preferred the Northside interpretation.  He asserted: "Why call it a met[astases] when we don't 100% know for sure it is a met?  I think the only thing that is really important is to know if it is stable and know that it is not spreading.  And in the 5 months that you've been scanned, those 'bone lesions' have been stable.  But just to be sure, here's what we are going to do: I'm ordering a full body bone scan just to make sure these lesions were not found elsewhere."

My full body bone scan was performed the day after I returned from seeing Dr. Yamada.  Actually, one of the questions I asked Dr. Yamada was "why would you want to radiate the tumor if you believe there are metastatic bone lesions elsewhere in my pelvis?"  His response was "We would want to target the main source of the tumor.  As necessary, we could even 'spot weld' those bone lesions, but I think that the Yondelis will help with those too."  In other words, more points scored for the systemic treatment provided by Yondelis!  It is capable not only of shrinking/slowing the soft tissue sarcoma, but also the bone lesions!

Of all the various scans I've had over the years, I never had one of these full body bone scans.  They inject you with some nuclear material, wait 3 hours, and then scan you.  Here's one of my images:

Good luck trying to interpret that image!  So grainy, so many dark spots, and they can't all be cancer, right?   Waiting days for the radiology report was difficult, and even then, the findings were inconclusive:

1. Focal increased radiotracer uptake posteriorly in the left ninth rib.
2. Nonspecific heterogeneous uptake in the calvarium.

In other words, they needed to take a closer look at my chest and skull.  Dr. Ummed ended up ordering X-Rays for those along with an MRI of my pelvis area as it had been nearly 3 months since my previous scan.  Based upon the uncertainty of the bone scan and some relatively new numbness and pain along my right lateral thigh, I ended up doing the MRI and X-Rays a few days earlier than planned, on Tuesday, September 10.  It wasn't until yesterday (Friday) that I got the results:

1. Normal chest.
2. No aggressive osseous lesions of the skull base or calvarium.
3. Interval decrease in size of soft tissue component.
4. No significant change in involvement or distribution of the right sacral bony involvement compared to prior.
5. No significant change involving the enhancing foci within the left iliac bone, left ischium, and right superior acetabulum compared to prior.

In summary, this means that my sarcoma has not spread to my chest or skull, that the soft tissue area shows shrinkage (of about 10%), and that the bony involvement (met or whatnot) is stable.  And that, my friends, is a huge relief and about the best news anyone can hope for!

In closing, I wanted to try to put together a series of images that show the shrinkage of my tumor since my first identifying scan back in January.  You can click any of these images to enlarge them:

Pretty incredible, right?!?  Things are definitely moving in the right direction.  Slow and steady wins the race!

Going forward, the chief concern Dr. Ummed has is with my kidney function and my sometimes spiking Creatine Phosphokinase (CPK) numbers.  He has ordered me to to cease all muscularly challenging work, especially chores such trimming the bushes with heavy cordless equipment (that previously pushed my CPK near 2500).  People can and do experience renal failure from this, even after just a single incident of high CPK.  And given my existing chronic kidney disease (believed to be the result of chemotherapy 11 years ago), it might not take much to completely kill them.

Do any of my neighbors have a recommendation for a reasonable landscaping company?  I can (and will) keep mowing my tiny yard, but bush trimming and heavy yard work will need to get farmed out (so to speak).