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).

MSK Radiation Oncology Visit

My apologies for being such a slacker of late.  Things have been going so smoothly and work has been so busy that by the time I get to thinking about posting a blog update, I'm already drifting off and ready for bed.  But enough's enough -- there actually is some relevant news to post, so let me get straight to that.

1:30PM Wednesday (8/28): Dr. Yoshiya Yamada -- Radiation Oncologist Extraordinaire

As mentioned in my previous post, I had a day-trip planned to meet with Dr. Yoshiya (Josh) Yamada (of Memorial Sloan Kettering) to be evaluated for radiation therapy.  Honestly, given what Dr. Fabbri had said in my previous visit, I was hesitant (to say the least) about signing up for something that might really hurt me.  From my perspective, why should I take on any risk at this time if the Yondelis is working?  Well actually, that sounds like a great question to throw at Dr. Yamada!  So my plan was to go in there with my questions and doubts, but still be willing and open to hear what he had to say.

My flight to LaGuardia left on time at 7:30AM Wednesday morning from ATL, putting me in NYC by 9:30AM and Manhattan by 10:30AM.  Given that I had plenty of time to kill, I handled the temporary boredom like any good Novak would: with food!  First some coffee at Starbucks; next an early lunch at P.J. Clarke's.  Thankfully, there would be no splitting this Fish & Chips basket with a hungry sister (love you Deborah).  No, this one was mine, all mine!

P.J. Clarke's Fish & Chips!

With my stomach now content, and still time to burn, I figured I would walk the mile or so to the main MSK building, referred to as the Rockefeller Research Laboratories:

Memorial Sloan Kettering: Rockefeller Research Laboratories

Dr. Yamada works out of the building diagonally across the street from here, known as the MSK Haupt Pavilion.  Just after taking the above picture, I turned around to take a picture of the Haupt Pavilion and was quickly met with a very upset security guard:

Guard: You can't take pictures here!  This is a private facility!
Me: Not even the outside of the building on this public street?!?
Guard: NO, not even the outside!  We have cancer patients coming and going from this building constantly and you do not have their permission to take their picture.
Me: Which is exactly why I was waiting for them to clear the frame, and then I would take my picture of just the building.
Guard: NO, you still cannot do that.  You might accidentally get a patient in your picture and that is strictly prohibited.
Me: Well I'm one of those patients, and I respect their rights too.  Which is why I was waiting.
Guard: I'm going to have to ask you to leave this area.
Me: Actually, I have an appointment scheduled for here in about 45 minutes.
Guard: Well then please put your phone up immediately.
Me: OK, OK!  I'm not looking for any trouble and I don't intentionally want to break any rules.  I'll just head to my appointment now.
Guard: Remember, no pictures!
Me: Yup, got it!

I can't say that I blame the guy; he was just doing his job.  I don't even disagree with the spirit of this rule: cancer patients should have implicit privacy.  But what I don't like is a "letter of the law" guy trying to enforce a policy on a person who was clearly trying to stay within the "spirit of the law".  Oh well, an outside picture of the Haupt Pavilion really wasn't going to be that exciting and certainly was not worth all of this trouble!

I ended up arriving 45 minutes early to my 1:30PM appointment on the 2nd floor of the MSK Haupt Pavilion.  I figured that I would be waiting there for a while, but at least it would be quiet and comfortable there in the waiting area.  I found a great chair and had just unpacked my iPad and headset when my name got called.  Surprise!  Time to head back to the exam room.

I was met almost immediately by one of Dr. Yamada's resident doctors (whose name I've forgotten).  After spending about 20 minutes with me, he went to get Dr. Yamada.  About 15 minutes later, Dr. Yamada and two resident doctors appeared in my exam room.  And this part is hard to describe, but Dr. Yamada has a certain confidence and "air" about him that makes him immediately trustworthy.  It is clear that he is extremely intelligent and a leader in his field.  I just somehow knew I was in the right place and was being seen by possibly the world's best radiation oncologist for my particular case.

Dr. Yamada explained that, for my case, Stereotactic Radiation was the best option.  One appealing aspect of this approach is that the entire treatment would take just 3 days.  "You could fly in on a Tuesday and fly back home on Thursday" he explained.  There would be an 80% chance that such a treatment would be beneficial without any long-term side effects.  That said, there's a 5% chance that you could have some permanent damage, in particular to your sciatic nerve.  If that were to happen, you would have to wear a brace on your ankle and possibly need a cane as well.  This is a condition referred to as "drop foot".  My response: "well better to have 'drop foot' than a dropped foot!".  Everyone in the room politely laughed.

But Dr. Yamada, why would I want to take any further risk at this time?  5% risk seems pretty low, but if I just stay with Yondelis and it continues to work, there's virtually 0% chance of further risk.  I'm walking and staying fairly active now, and I do not want to risk losing full mobility.

His response was perfect: "and that's why I'm recommending that you just stay the course with Yondelis, so long as it keeps working.  Think of radiation as your backup plan.  Should your tumor start to grow or show signs of further metastasis, I want you to get back here ASAP and get treated!"  And that was just about all there was to it.  He left me with his card and told me to send him my next set of scans (tentatively scheduled for 9/12/2019).

As I was leaving the building, I said a friendly "good bye" to the security guard I spoke with earlier and caught an Uber back to LaGuardia.  I ended up switching my flight to one three hours earlier than originally scheduled, which I really appreciated as it had been a very long day!

New Chemotherapy Schedule Starts Now

Round #9 of my Yondelis Chemotherapy began on Thursday, September 5.  Going forward, the plan is to have rounds scheduled for every 4 weeks.  This buys me a little more free time and fewer interruptions with my life and work.

New Round of Scans

I have a MRI of my Pelvis and Lower Back tentatively scheduled for this coming Thursday. Assuming that schedule holds, I likely won't get results from that for up to a week later. I promise though this time I'll do a better job of sharing the results in an expeditious fashion.