Sunday, November 21, 2021

Access Denied!

For many cancer patients, an "access" is an essential part of the treatment plan.  Some chemo types, including Yondelis (the one I'm on), are classified as "vesicants" and, therefore, require some type of vascular access device.  This is necessary so that the chemo is released very close to the heart and quickly mixed into the bloodstream.  A regular IV will not suffice for such medications.  These devices are both necessary and lifesaving.

They can also be very problematic.  In the past 3 months, I've had to deal with the following challenges:

Port Infection 

This led to an ER visit in late August, followed by some strong antibiotics (which did not work), followed by a "stat" port removal on August 31 (due to the aggressive spread of the infection).  Here's a picture just minutes before the removal:

Aug 31: Infection on day of port removal

As I had discovered last July, there's something about Yondelis that tends to lead to more frequent port-a-cath infections.  But this infection was far worse than what I had 13 months prior and nothing I would want to repeat.

Chest Abscess

Removing the port should have been the end of the infection.  Things did improve initially, but within a week, a chest abscess had formed. This led to another ER visit, subsequent hospitalization, and lots of antibiotics:

Sept 5: Chest Abscess


PICC Line Placement (and ongoing maintenance)

With the port-a-cath removed and my infection finally cleared up, it was time to get a new access device.  Having been burned twice now with port infections, I figured I would try something new this time.  The choices were:

  1. Chest mounted central venous catheter
  2. Arm mounted PICC line
Both types are a royal pain to maintain!  First off, each "lumen" (my line has 3) needs to be flushed daily with a saline syringe and re-capped with a new green cap.  Oh, and good luck getting those caps since you can't get them from any pharmacy!  Secondly, that covering over the access is a very special dressing that needs to be changed weekly by a Registered Nurse.  So, if you're not able to get home healthcare, this means at least weekly trips to your infusion center to get that changed.  And, whatever you do, don't get it wet or sweaty, because that will require an immediate dressing change.

Sept 15: PICC Line (right arm)

Though the doctor encouraged the chest access, I opted for the one in the arm because it made showering easier and had the distinct advantage of not getting sweaty when I walked.  After all, how was I ever going to go on sweaty weekend walks if a chest access?
Though this reasoning seemed sound at the time, I found out later that there are some distinct disadvantages to having a PICC Line.

The Trouble with PICC Lines

I should have listened to my doctor and gone with the chest access.  And, frankly, he should have known better than to let me get a PICC Line.  I'm pretty sure he knows now, but I'd really prefer not to be the patient who, together, learns this important lesson.

Let me count problems with PICC lines:

  1. Nobody "owns" it -- At Northside, if there are any issues with a port-a-cath or chest catheter, there's a doctor over in radiology that "owns" that device.  In contrast, the PICC line is installed by a team of experienced nurses and then handed over to the referring physician (my oncologist) for anything going forward.  Whatever issues or concerns that arise must largely be driven by the patient and their oncologist.  Neither I nor my oncologist was aware of this little fact.
  2. PICC Lines can pull out -- When originally placed, the tip of the line was (purposely) very close to the heart.  With normal movement of the body and weekly dressing changes, however, the line can start pulling out, causing the tip to move.  The nurse told me that if it comes out by 2 cm or more, I would need to get a chest X-ray to verify the location of the tip.  Within 2 months, mine had already come out 2 cm!  Contrast this with the chest catheter, which is sewn into your skin to ensure it will not move.
  3. PICC Lines can move within your body -- Since my line had visibly come out by 2 cm, I asked my oncologist to order an X-ray and have the tip placement verified.  The X-Ray showed that the tip was now about 4 cm from where it had been placed originally.  This means that, in addition to the visible 2 cm of movement outside of my body, the line had also moved 2 cm within my body!  Though a radiologist confirmed that the tip was still in a good place for chemo, it's horrifying to think that the tip can move without me having any indication of this outside of my body. This is something that really doesn't happen with either port-a-caths or chest catheters, likely because the line inside the body is much shorter and your chest does not move like your arm and shoulder do.  Why is this tip location so important?  The short answer is because vesicants can do some serious damage to your body if not quickly mixed into the bloodstream.
  4. PICC Lines can cause blood clots -- This one is arguably the worst of them all as it can lead to life-threatening pulmonary embolism, stroke, even death.  Just between us, it would really suck to successfully fight cancer for years only to be taken by an unexpected complication, such as a blood clot or serious infection.

Blood Clot!

Things were were all "normal" with my PICC line, though on Friday, November 19, I noticed some unusual numbness and tingling from the top of my right shoulder to my hand.  I ignored this for much of the day, but as the afternoon wore on, I starting getting concerned.  At around 4:00 that afternoon, I made the decision to head to the ER.

Though many tests were performed, it was ultimately the ultrasound of my right arm that showed a clot on the PICC line itself.  I was never given any details as to the exact size or location of the clot; hopefully such details will be forthcoming.

I was given a dose of Lovenox (blood thinner) prior to my discharge that evening.

Lovenox Injection
I'm now self-injecting these "cute" little shots twice a day.

What comes next?

What does come next?  Is the PICC line going to be taken out?  If so, when?  How long will I need to be on blood thinners?  For how long will I need to worry about the life-threatening aspects of clots?  (Actually, I'm trying not to ask those "dark" questions, but they do cross my mind.)  What impact is this going to have on the trip to Key West that Holly and I have planned in less than 2 weeks from now?

So many questions.  Hopefully this week I will have answers to all of those questions.


Things are not all 'doom and gloom'

Now I normally am not one to complain, and that's honestly not my intention here.  Once again, I'm just trying to keep it all real here and share the unvarnished truth about life as a Stage IV cancer patient.  I had a new set of scans done back on October 4 and I'm happy to report that things are still "stable" with my tumor.  That is indeed great news.  Now if only I could get an access that works and won't kill me!

Isn't surviving the cancer supposed to be the "hard" part?  I still find it surprising that, months after a port infection, I'm still having all sorts of issues with my access.  Frankly,  I'm just sick and tired of having unexpected medical issues, having to run to the ER, and seeing what little free time I have consumed by medical "maintenance" for my access.

I remain optimistic though that, after I get over this one last hurdle and get a better access, things will turn around for me.  During this Thanksgiving season, I am so thankful for a successful cancer treatment plan and hope/pray that treatment will become easier with a better access.

Happy Thanksgiving to all!

Sunday, August 1, 2021

First Cancer, then Chemo, now Covid

Round #33

Having just completed Round #33 of my chemo this previous Friday (July 23), I knew that the weekend was going to be hard.  All weekends post chemo are hard, especially on Sunday, but this one somehow felt even worse than normal.  One of the possible contributors was the new drug Zometa, which I receive now every 3 rounds (those evenly divisible by 3) to help treat bone problems caused by my cancer.  The nurse at the infusion center did warn me that the Zometa may cause "flu-like symptoms" and to not immediately freak out if I was experiencing a slight fever, chills, or muscle and joint aches.  Affirmative on that, I was definitely feeling crappier than normal.  But Monday was right around the corner and I always start feeling better on Monday.

Case of the Mondays

I woke up Monday feeling very little improved from the previous day.  No matter, I made the "commute" to my work desk in the Living Room and put in a full day.  It wasn't until later that afternoon that I took my temperature for the first time: 100.1.  So slight fever, but probably still the Zometa.  I remarked at dinner that evening how food, and even water, wasn't tasting right anymore: it all had a metallic taste.  My fever later increased to 101 and then 102.  I eventually popped some Tylenol to knock it down so that I could sleep that night.

"Go to the ER"

With Tuesday feeling like a continuation of the previous days' symptoms, and still running a slight fever, Holly urged me to reach out to my Oncologist.  The nurse there quickly called me back and told me to "Go to the ER".  Holly drove and stayed with me the entire time in the ER.  I figured they would give me some much needed fluids, run some tests to identify the source of the infection, and send me back home in short order.  One of the first things they noticed, however, was my oxygen saturation was in the lower 90's and eventually fell as low as 89, at which point they put me on supplemental oxygen.  Chest x-ray was clear, breathing sounded clear, blood work was fairly normal, though cultures were pending.  A respiratory panel was ordered and, much to our surprise and that of the ER Doctor, came back positive for the SARS-CoV-2 virus.  Though breakthrough cases had been rare with "normal" Covid, they are becoming more common with this new Delta variant.  And for the immuno-compromised such as myself, they are even more common yet.  The best it seemed I could hope for was that the vaccine would help "prevent serious illness and death".  I was about to test that theory.

High Risk, High Reward

Though my symptoms were not yet serious, an Internist explained to us that the first several days of Covid often present with mere "flu-like" symptoms.  The concern, however, was that it can then transition into something far more consequential that can invade the lungs, heart, and even brain.  Given my recent chemotherapy and general inability to mount a sufficient immune response, the doctor did not hesitate to admit me to the hospital and begin treating me with the antiviral drug Remdesivir.  I was to receive 5 daily doses of this IV drug in all.  The goal of this drug is simple: prevent Covid from transitioning to its serious phase and possibly even reduce my overall recovery time.

"Say Your Goodbyes"

The real sobering moment came when they were ready to transfer me from the ER to my isolated hospital room.  The orderly casually said "Say your Goodbyes", so Holly and I said a quick and trivial "Goodbye".  It wasn't until seconds later, after my ER bed had rounded the corner and Holly was out of sight, that it hit me: could that have really been my last "goodbye"?  Oh my God!  What if it is?!?  Little did I know that these same fears were racing through Holly's head right then too.  Covid is a bitch and so many lives and relationships have been lost without ever having the chance to say a heartfelt goodbye.  My advice is to say "I love you" today as you might not have that opportunity tomorrow.

Covid Tracker, Magnetism, and 5G Signals

My insider look at Covid treatment and vaccines has led to some startling surprises.  While laying in my hospital bed, I felt a barely perceivable bump on my chest that didn't feel like part of my body.  After digging around a bit, I found this:
Magnetism and 5G Signal
Covid tracker, magnetic sensors, 5G signal

Could I indeed have found the much talked about (but never seen) "tracker" that gets imbedded with your vaccination?  I was skeptical at first, but kept an open mind as I investigated further.  I noticed that the tracker had certain wires coming out if it that were attached to sensor-like objects elsewhere on my chest.  But how in the world did these "sensors" possibly stick to my chest in a vertical position?  They must be magnetically attracted to the tracker implanted during my vaccination!  And if that's not convincing, just look at the monitor as it is clearly showing a 5G broadcast signal.
The investigation continued to the backside of the tracker where my preliminary observations were confirmed:
"COVID" tracker
Right there, in plain English, I found the manufacturer name starting with "COVID", a tag labeled "Biomedical Engineering", and a hand-written date coinciding with my vaccination date!  Even the most ardent skeptic has to take pause here as the conclusion is obvious and inescapable: COVID TRACKERS ARE REAL!

Not Out of the Woods Yet

My fever broke during my first night at the hospital and I was able to come off of supplemental oxygen later that morning.  I was eventually discharged on Saturday (7/31) and sent home, where I must remain quarantined for 14 days from the onset of symptoms.  Holly and the boys have all tested negative for Covid and the boys are definitely keeping their distance (i.e., camping out with their gaming PCs in the basement).  I'm still somewhat weak and not completely out of the woods quite yet, though some sense of "normalcy" has returned.  I have also had to promise to not drink out of the milk and cream containers directly and to not steal sips of Holly's wine when her back is turned.  Such are the sacrifices one must make while quarantined.

Beware: Delta Variant Lurking

In closing, I just wanted to sound the alarm about the new Delta variant.  It spreads more easily than Ebola as well as viruses that cause MERS, SARS, smallpox, seasonal flu and the common cold.  Folks, this is real stuff and it is truly dangerous!  Having said that, I do not wish to live in isolation forever and I'm not particularly fond of wearing masks.  During Covid, we have still gone out to restaurants and all, but we've tried to always be careful.  We've gotten our entire family vaccinated, eat outdoors at restaurants whenever possible, and try to apply some common sense reasoning to every situation.  
In fact, the weekend prior to getting ill, Holly and I took a trip to Jacksonville where we ate outside at several restaurants.  My mistake though was ignoring how the Delta variant is surging down there currently and not realizing how vulnerable I actually am, even during non-treatment weeks.  We went down there primarily to look at houses and neighborhoods that we could move and retire to in a few years.  Little did I know that I nearly "bought the farm" in Georgia instead.
So love on your friends and family while you can, enjoy life at every moment, but be more vigilant now than ever before!  We are all not out of the woods yet!

Saturday, June 26, 2021

Chemo Round #32 Complete and All is STILL Well!

I'm very happy to report that, after having been diagnosed with metastatic (Stage 4) high-grade Myxoid Liposarcoma nearly 2 1/2 years ago, things are still going well for me and I remain "stable". But these past 4 months have not been without a few scares. Worded differently, this post could have just as easily been titled: "The Rumors of My Impending Death have been Greatly Exaggerated!".  Truth be told, these "rumors" all originated from me, despite the fact that they were based upon real physical symptoms in the area of my tumor as well as blood test results.  Below is the gauntlet of tests I've been through in the past 4 months.

Second Scan Opinion from Memorial Sloan Kettering (MSK)

Given that Northside Radiologies have described my scans as "stable" now for the past 2 years, I wanted to verify this analysis by sending my scans up to MSK for a second opinion.  I was especially motivated to do this because of the occasional pain I would sense coming from my right pelvis area and right lower back.  Honestly it's a little scary because it's a constant reminder that the tumor is telling me "I'm still here and I'm still fighting!"  Be that as it may, I'm still here and I'm still fighting too!  Furthermore, I'm taking every precaution possible to ensure that this tumor doesn't make any sneaky advances either elsewhere in my body or at the main source.
It took about a month to get those films to be sent up there, arrange to have them read, and then schedule a visit with Dr. Yoshiya Yamada.  Remember him from August 2019?  Thankfully this time I did not have to fly up to NYC as MSK now does telehealth visits!  (Something good had to come out the pandemic, right?)  I ended up speaking with Dr. Yamada during the afternoon of June 2nd.  Well I'll cut right to the chase and say that they (MSK) agree with Northside's reading and think that I'm "stable" too!  He went on to say that they think I'm doing "exceedingly well" and there is "strong evidence that the Yondelis is working for me".  He even threw in the word "miraculous".
So, test #1 complete -- passed with flying colors.  But what about this other thing that's threatening to kill me???  Keep reading . . . .

Blood Test Results Indicate "Much Worse Than Normal" Kidney Numbers

For those of you with high reading comprehension (and a very good memory), I was long ago diagnosed with Stage II Chronic Kidney Disease.  The origins of this in my system have been traced back to the original chemotherapy I had 13 years ago.  Key indicators of trouble are high readings for Creatinine and low readings for GFR.  My Creatinine "normally" sits around 1.6-1.7 and my GFR around 44-47, but on April 22, I was at 2.0 and 36, respectively.  One week later these numbers were at 2.1 and 34, the worst I had ever seen.  Even my oncologist was concerned and suggested seeing my nephrologist, who was booked up through June 3rd.
I'll be honest and say this led to a great deal of worry on my part.  I essentially had two diseases, each threatening to kill me in their own special way.  If my kidney numbers continued to get worse, especially at the rate they were going, it could force me to have to start dialysis.  And why would this be deadly?  Other than the fact that dialysis would be a permanent disability, it would mean stopping my chemotherapy treatments, thereby allowing the cancer to go unchecked in my system.  Quite frankly, I hope this is something I'll never have to deal with as giving up would be a real option, and I do not want to leave that way.
In any case, knowing that Creatinine and GFR are often tightly linked to the consumption of water (where bad numbers could mean you're not getting enough water), I rededicated myself to regular water consumption.  To keep myself honest with my goals, I purchased a 1 gallon reusable water bottle from Amazon with time marks on the side of it to pace my drinking all day long.  Sometimes I drink more than this gallon, but never less.
The result?  My last three sets of bloodwork show me back in my "normal" range!  And the nephrologist's take on the bad numbers?  Simply put, he called it an "anomaly" and likely related to inadequate hydration near those test days.  Bottom line: he's not worried . . . so why should I?!?

New CT-Scan: Chest, Abdomen, Pelvis on June 17

So given the title of my post, you must already know that my results were again reported as "stable".  There are certainly several things they are keeping an eye on in various places (and have been for quite some time), but these other areas have remained stable too.
As the saying goes: "All's well that ends well!"  And who could ask for a better ending than this?!?

Keeping on, 
 --Dave

Thursday, February 25, 2021

MRI Results Indicate “Stable” Tumor

The news from my previous post (that my tumor "may be slightly increased in size") apparently bothered me more than I let on.  Originally I was going to get my follow-up MRI in "another 3-4 weeks".  The more I thought about it though, the more concerned I became.  I mean, why wouldn't anyone jump on this ASAP?  So I did.  I got my MRI on the February 20th and my results today:

Stable right sacral mass . . . .

So with that great news, I was told I was ready for Round #28 of Yondelis!  Man, I think I'm ready for a HAPPY DANCE!  How 'bout an encore performance of my favorite cancer fighting song, Love Pack:


This song is all thanks to my friend and, fellow Liposarcoma Survivor, and all-around talented guy Robbie Long.  Apparently my friend has some cool connections too.  The keyboard arrangement in this song I'm told was done by the keyboardist from the 80's band Cameo.  Remember Word UP!?  Pretty cool right!

A warning though: if you're as bad as I am with dancing, do it in private!  :)

Keep on!!

--Dave

Friday, February 12, 2021

Bigger is NOT Better!!!

 At least that’s true if you’re talking about tumor size.  So I had a CT-Scan of Chest, Abdomen, and Pelvis (CAP) this past Wednesday morning and just got the results from my doctor today:

Persistent right pelvis mass which may have slightly increased in size since prior examination.

I emphasize the word may.  I’m no Radiologist but I do get a copy of and examine my scans every time.  The software that comes with the scan DVD even allows you to take measurements, which I also do every time.  This being a widespread scan of CAP, rather than a higher resolution MRI of just the pelvis, makes it harder to take accurate measurements.  Honestly, you get different measurements depending upon the angle/orientation you are viewing.  This time in particular I had a harder time getting the exact view I had measured in previous scans.  I will also add that this was a different Radiologist and interpretations can and do vary slightly.

All that to say: neither I nor my Oncologist are in “freak out” mode quite yet.  The plan is to do a follow-up MRI, but that won’t be for another 3-4 weeks.  That scan should provide something more definitive than may.  Hopefully I’ll get another “stable” report, but if it’s anything worse, I’ll deal with it at that time.

Just keeping it real and honest.  

Thanks for reading and have a great weekend!

—Dave

Friday, January 15, 2021

Happy Anniversary!

Like a typical man, I forgot that today was my cancer diagnosis anniversary.  Not kidding, Holly had to remind me!  Yes, we all know that she is my “better half”!

It’s almost hard to believe that it was 2 years ago today that scans the morning of 01/15/2019 revealed a metastatic recurrence of liposarcoma in my right pelvis.  Things were going so well for so long being cancer free  (10 years) that I just couldn’t believe what I was hearing.  In the subsequent days and weeks, the news was devastating. Just a month earlier, Holly and I had visited Nocatee, Florida and were planning to move there after the boys were out of college (if not even earlier).  But with that news, all of those plans/dreams were put on indefinite hold.

The good news though is I’m still around and things have been “stable” for nearly 1 1/2 years.  I choose to think of this date not so much as a cancer anniversary but more of a survivorship anniversary.  Hopefully things will remain stable for years to come.  

More scans coming on 1/25, so please keep me in your thoughts.

Final thought: always out your spouse first, especially on an anniversary!

Friday, December 11, 2020

A New Wrinkle: Anemia

 In the last couple of weeks I've noticed myself feeling much more tired and colder than normal.  At first I figured it was me just being tired of 2020, Covid-19, and the shorter/colder days, as I'm sure many of you can relate.  But in my last round of chemo (on December 1), labs taken prior to the chemo showed my Hemoglobin hit an all new low of 9.5 gm/dL.  A normal reading for men starts at 14.0 gm/dL (according to Cleveland Clinic).  Previously my results sometimes ran slightly low (as in the high 12 - 13 range), but this represents a significant drop.

And of course for every symptom there are new tests that can and must be run.  In this case, it's an Upper Endoscopy combined with Colonoscopy.  Oh yeah!  I was overdue for that anyways (really)!  I am so looking forward to spending an evening in the bathroom followed by an outpatient procedure (yes, pun always intended).  I do have a bit of a reprieve though before this happens.  Apparently everyone wants to spend their flex dollars on doing this at the end of year.  So, this means they are booked well into January.  My appointment is scheduled for Friday, January 22, 2021, in the morning.

Finally, I wanted to mention that I went back and forth in my mind as to whether or not I should even do this post.  As you probably know, I don't often whine and complain (though wine and celebrate, yes).  But given that how I feel is apparently tied to a physical/medical issue, I opted to share.  My mission from the beginning of this blog (which is now well over 12 years old!) has been to show what really happens to people when they go through cancer treatment.  No sugar coating here, just the raw, unvarnished truth.  For the last 15 months, I've had nothing whatsoever to report other than things were remaining "stable".  This latest issue is hopefully temporary and not the result of something more serious.

Also pending for January is a new set of scans, but that date and type of scan has yet to be selected.

In case you don't hear from me prior to the January "festivities", I wanted to wish you all a Merry Christmas, Happy Hanukkah, and a blessed New Year!

Sunday, October 25, 2020

Quarterly Update: Scans Remain Stable

Over the past month I've had two sets of scans: a CT scan of chest, abdomen, and pelvis and an MRI of my pelvis.  Both showed that the tumor has remained "stable".  That marks over year now that my tumor has remained stable, which is really quite amazing!

Next update will be after my next scan, which is TBD.

Take care, stay safe, and stay positive!

Friday, July 24, 2020

All is well!

It took a little longer than expected with my surgery today because they are required to first do a COVID-19 test prior to any surgery requiring anesthesia.  With all I've been through, I've gotten fairly used dealing with pain, especially pain that is temporary.  But I must admit that the Covid test is really not any fun at all.  They stick that thing all the way up and down your nose until you can feel it coming out in your throat!  It tickles in a weird/bad way and is very uncomfortable as it goes all the way down.  And just when you think it's over, it's time to repeat the process on your other nostril!

Thankfully they have the new rapid test there at Northside and can get results in just a little more than an hour.  At about the 1 hour 20 minute mark, the surgeon (Dr. Levy of Northside Radiology) came into the room to describe what was going to happen during the port replacement.  But given that I still had not heard the results of my test, I asked him.  His immediate response was "Oh you're positive".  "What!?!" I responded.  He went on to explain, with a wink and a smile, "you're positively going to get this surgery because your covid test came back negative!".  Yup, I'm a victim of my own sense of humor as this is exactly the sort of thing I would say if I were in his shoes.  But all kidding aside, he was great and his supporting team of nurses and techs were among the best I've ever seen!

New port in green, old port area in red, painful area in yellow
I stayed mostly awake during the surgery but felt no pain other than the initial incision.  Post Op was a breeze too; I scarfed down a turkey sandwich, drank a ginger ale, and took home a couple of packs of Oreos and other snacks.  Six hours later as I'm writing this post, I'm feeling the pain set in (especially in the area show in yellow), but it's not all that bad . . . I've had much worse.  It is important though to try to stay ahead of the pain, so I'll be taking another pain pill soon and head to bed.

Thank you everyone who said a prayer for me or sent positive vibes my way during this procedure.  I felt it all!  Between your support/caring and the awesome medical team at Northside, this was a big success and I can put it all behind me.

Have a great weekend everyone!

Thursday, July 23, 2020

Port replacement surgery scheduled for Friday morning

So I ended up being sent to Dr. Ronald Trible of Georgia Infectious Diseases.  To him it was not conclusive as to whether I had a port infection, skin infection, or just a subdermal hematoma.  But, given the issues I've been having of late with my port not wanting to show a blood return (something not previously reported here), and given that I am just 2 weeks away from my next scheduled round of chemo, he said that probably the best thing we could do would be to replace the port.  Considering that I had already gone longer than most patients getting Yondelis, this feels like the right answer to me.  I especially like the fact that my chemo schedule won't slip!

I was also given a prescription to a more powerful antibiotic: Linezolid.  This will be of great benefit if what I have is either a port infection or a skin infection.

Surgery is Friday morning at 11:00am.  I'm not expecting this to be a big deal, though I am expecting to be sore for several weeks.  The best part though is that now I will have matching scars on both sides of my chest!

Sunday, July 19, 2020

Florida Vacation, Infected Ports

Hello from sunny, hot, and humid Florida!
Siesta Key Sunset
That's right, Holly and I went on a quick vacation over the July 4th weekend to Siesta Key (just south of Tampa).  The beach was beautiful and the weather was nice, but nothing is really going to feel the same until the darn coronavirus thing is over.  With bars closed and us not daring to eat inside at any restaurants, pretty much the best we could do was takeout . . . and the occasional patio breakfast.  We did our best though to social distance and wear masks when appropriate.  Given that coronavirus cases were/are spiraling out of control there in FL, I'm just happy to have gotten back home safely and, two weeks later, still be virus free!

To be clear, we might be virus free, but apparently not infection free.  It turns out that my chemotherapy port (surgically implanted in my right chest) appears to be brewing an infection.  I noticed several days ago that something was wrong because the skin was reddish in color and very sensitive above the port. 

My oncologist (Dr. Ummed) took a look at this last Thursday and confirmed that this was the early stages of a port infection.  He also pointed out that he has seen a number of port infections specifically with those getting Yondelis.  In fact, he added, I've gone longer (1.5 years) than most of his Yondelis patients with avoiding a port infection.  He then sent me to the infusion room for IV antibiotics and home with a prescription of oral antibiotics. 

As I write this post (three days later), I'm unfortunately not seeing any improvement.  In fact, it seems to have gotten slightly worse.  So I'll definitely be following up with Dr. Ummed tomorrow.

Barring some sort of miracle, I think that ultimately the port is going to have to be removed and replaced with a new port, this time in my left chest.  Normally I wouldn't be all that concerned about this sort of thing, especially since it is "common" with Yondelis patients.  But given this coronavirus thing that's going on, I really would prefer avoiding the hospital and surgery at this particular point in time.  Oh well, it's out of my control, and I'll just have to do whatever I have to do to rid the infection and stay on a chemotherapy treatment schedule.

Oh and one more fun fact worth mentioning: it is not possible to Yondelis administered by direct IV; you must have a port!  Why?  Because apparently Yondelis is very dangerous if it enters your body outside of the bloodstream.  The port guarantees that the Yondelis goes straight to the bloodstream whereas the needle with an IV could possible move outside of your vein during the 24-hour infusion process.  Think about it, you have to take your chemo backpack to bed with you at night.  Can you be sure you don't roll over strangely or do something to cause that needle to penetrate outside your vein and have Yondelis go directly into your body?  The port ensures that you don't have to take that risk . . . though it can get infected.  Always complications!

That's all for now.  I'll be sure to keep you posted with the outcome of this port issue.

Tuesday, May 26, 2020

Scan Results Remain "Stable"

I know it's been a while since my last update, but quite honestly, there's been nothing new to report.  I'm still receiving Yondelis treatments every 4 weeks and Yondelis and I are still getting along.

I did, however, have 2 new scans done at the end of last week:
  1. A "head to toe" PET/CT scan, the first I've ever had
  2. An MRI of my pelvis/sacrum
The results came in just today for those and both indicate:
  1. No significant growth or evidence of disease progression of dominant lesion.
  2. No evidence of further metastatic disease elsewhere in the body.
So things remain as they have since September 2019: stable.  I couldn't be happier with the results!

I also wanted to add a few more details about the PET/CT scan since this is such a unique scan.  Actually it's two different scans: a PET scan combined with a CT scan.  These scans are taken separately (minutes apart from each other), both from the same machine and with the patient unmoved the entire time.  Through some fancy software, these two scans can be viewed independently or together as a composite image.

About an hour before the scan starts, you get an injection of radiative sugar known as FDG.  Since cancer cells take up this FDG sugar, the PET scanning machine is able to measure the radiation signal and identify "hot" spots.  The more FDG the cancer cell takes up, the "hotter" it is on the scan.  The "hotness" of an area is measured as a Standardized Uptake Value (SUV), ranging from 0 to 16.  Anything with an SUV greater than 2.0 is suggestive of malignancy.

So if I haven't put you to sleep yet, you must be wondering: what is the SUV of your tumor?  It reported in at a relatively mild SUV of 2.5, which is not so hot (in all the good ways).  According to Dr. Ummed, this indicates that the tumor is not very active, further emphasizing the stable characteristics we have observed for the past 8 months.  Again, very good news!

In other news, Round #19 starts on June 11.  But no worries; all is good here!

Tuesday, February 25, 2020

"Stable" MRI Results; Round #15 Started Today!

Hello!  Long time, no post!  Yes, I am still alive and continue doing well with the treatment, working full time, and loving life!  Here's a recent picture of us while vacationing in Florida:
At JBs Fish Camp

Returning now to my treatment status . . . .

Back in December, I mentioned that I was due for a follow-up MRI here in February.  I had that scan back on February 16 and the results indicate that my tumor is "stable".  It was actually noted as "stable" back in December too, which is really just a nice way of saying that it hasn't shrunk (or grown or metastasized) since my September 2019 scans (5 full months).  I'd prefer to see shrinkage!

After having a long talk with my Oncologist (Dr. Ummed), he has convinced me that "stable" is actually a good thing and that tumors will stop shrinking at some point.  And given that I've been tolerating the Yondelis quite well now over the past 10+ rounds, he felt there was no need to either increase my dosage or frequency of chemo.  It's just not worth the increased risk of toxicity when we are already seeing stable/controlled results with the current dosage schedule.  I'm all good with that doctorly wisdom and all, so let's just hope that it remains stable . . . for years to come!

Also, in my previous post I mentioned that they had found a "new soft tissue edema enhancement".  This blip still shows up in my latest scans, though apparently "stable" as well.  So I'm just not going to worry about it.  Not now at least!

That's all I have for you!  Expect another update after my next scan, which is probably 2 - 3 months away (TBD).

Wednesday, January 1, 2020

Happy New Year!

2019: The Year in Review

What a whirlwind of emotions 2019 was after getting re-diagnosed with a disease I thought I had beaten 10 years earlier.  Shock, surprise, denial and disbelief: those words certainly all apply.  But as the year drew to a close, it has become clear that 2019 was not so bad after all!  Consider the following:
  • Though diagnosed with Stage 4 metastatic cancer, there is currently no evidence that the disease has spread beyond my pelvic region.  Obviously that is a far better scenario than having it spread throughout my body.
  • We have seen slow yet steady shrinkage of the tumor since I started on Yondelis back in February.
  • The current treatment plan has been confirmed by Memorial Sloan Kettering (MSK), an NCI-designated facility and leader in sarcoma research and treatment.
  • I currently have the best health insurance I've ever had in my life.  Few providers would cover out-of-state second opinions and/or treatment, but the plan I'm on now does!
  • My mobility has thus far been unaffected by the tumor.  Furthermore, given how smoothly the treatments have been going these past 9 months, I have been able to keep working full time without the need to go on disability.
  • Our family was able to go on a "trip of a lifetime" cruise to Spain, Italy, and France in the early part of summer.  Though expensive, I have no regrets whatsoever about going on this very special family trip.  Those memories will last a lifetime!
  • My younger boy (Kyle) graduated from Brookwood High School and has completed his first semester in Art and Digital Animation at Kennesaw State University.  Both he and his older brother (Bryce) are doing very well in college.
  • Had a wonderful time with friends, family, and neighbors over my birthday.  And just two months later, we had a fantastic Thanksgiving reunion with the Holbrook family here in Atlanta.  These relationships are priceless!
So yeah, not so bad of a year after all!

Recent Scan Results Raise New Concerns

I had a Pelvis MRI this past weekend (on 12/28/2019) and just got the results back for that on Monday (12/30/2019).  Unlike all previous scans, which showed at least some shrinkage every time, this scan shows virtually no difference from my previous scan of 3 1/2 months ago.  Furthermore, the radiology report indicates some sort of "new soft tissue edema enhancement noted along the right lateral ischial tuberosity [i.e., bottom right butt cheek bone] of uncertain etiology.  A new focus of disease cannot be excluded."  This is definitely not the news we were wanting to hear.  So what changed?

One thing that has changed is that my chemo schedule has gone from every 3 1/2 weeks to every 4 weeks.  Originally I was getting chemo every 3 weeks, but that was just too hard on my body and my schedule, so Dr. Ummed (my Oncologist at Georgia Cancer Specialists) agreed it should be fine to stretch this from 3 to 3 1/2 weeks.  And with the results from my September scan still showing promise, the chemo schedule was extended once more to every 4 weeks.  Therefore, it is possible that perhaps I need to either up my dosage of Yondelis, or increase the frequency of my treatments (neither of which is easy).  For the time being, however, Dr. Ummed wants to stick with the current dosage and schedule and then rescan a bit earlier, such as in the February or March timeframe.  Based upon those results, we'll consider our options at that time.

Also a possibility is perhaps the tumor is building up resistance to Yondelis.  That would actually be the worst case scenario, so let's not go there quite yet.

And let's not forget that radiation at MSK is always an option for me to consider.  It's also an option I do not wish to rush, given the potential for life-changing complications.  I also need to stop over-analyzing the situation now and just sit tight until I get my next scan results, which will provide a clearer indication as to where things are headed.  Like many things in life though, this is easier said than done!

2020: "The Power of Hope"

Yes, "The Power of Hope"!  That was the theme for the 2020 Rose Parade . . . and it's a good theme for me in this coming year too.  With health concerns still abounding, I need a little hope this year to keep me going.  Don't we all?!?

But what is "hope"?  For me, I prefer to think of it as an action, something positive that a person does that makes somebody's day a little brighter:
  • It's the friend that makes you laugh.  
  • It's neighbors who smile and wave whenever you're around
  • It's family who is always there when you need them most
  • It's the beaming smile on your spouse's face
  • It's people showing compassion to strangers and those in need because it's the right thing to do
  • It's people who "pay it forward"
Perhaps most importantly, hope is not all about just receiving.  Hope can be found in the giving and the doing as well.  It's very contagious that way.

As we approach the year ahead, may we all find (and give) hope in large doses!

Sunday, November 3, 2019

Same Ol' Same Ol' . . . Life is Good!

Having not heard from me in over 6 weeks, quite a few people have reached out just to check in and see how I was doing.  It's certainly fair to ask that question and it reminds me how much people really do care, but I'm happy to report that all is well with me!  I'm feeling fine, still on the "Yondelis for Life" program (Round #11 starts tomorrow), still putting off radiation (as the Yondelis is working), and still working full time (because I'm just too young and poor to retire right now).  I know that this might sound a little boring, but for a guy with Stage 4 metastatic cancer, it sounds like a dream!

I will add that these past 6 weeks have not been entirely uneventful.  I celebrated my 58th birthday back in late September at my favorite Mexican restaurant.  And though I knew that other people were coming to join us for dinner, I had no idea who was on the guest list.  Holly ended up surprising me with 30+ friends and neighbors who showed up to celebrate with us.  Some in fact drove (or flew) from great distances in order to be there.  Many of these friends also failed to follow the clear "no gifts" instructions . . . for which I am also grateful.  Best of all, some anonymous good soul even picked up the total tab, which I had planned take care of.  By my accounting, everyone seemed to be having a great time . . . I sure did!  It's events like this, with close friends and neighbors, that makes life so special and creates memories that last a lifetime.

Also going on, Holly and I celebrated our 32nd wedding anniversary earlier in October.  We ended up heading to our favorite new beach area: Ponte Vedra Beach, Florida!


I'll make no secret about it: one day I hope to retire and live in this community.  With 2 kids in college though, now is clearly not the right time.  I just hope and pray that things keep staying "normal" and "boring" for me over the next 4 years though because that's how long it's going to take before the kids are done with school.  Perhaps then we can head down to Florida.  Holly (who was born in Florida) keeps reminding me (almost daily) that she's "ready to move down anytime".  You'll get there eventually, Sweetie, and not alone, I promise!

TTFN!

Saturday, September 14, 2019

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).

Sunday, September 8, 2019

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.

Saturday, August 3, 2019

NYC Trip; MSK Advice

I've been back now 4 days from NYC and Memorial Sloan Kettering Cancer Center (MSK), and many people have wondering how the trip went and what I found out.  All I can say is, "What a busy week!"  I got home Tuesday evening and was back to work Wednesday - Friday for 3 very intense days.  Today I'm just breathing a sigh of relief that I don't have that much going on!  So, no better time than now to post a blog update.

Dave & Deb Hit NYC!

Given that I have not been to NYC in over 30 years (and I didn't want to get lost), I asked my sister, Deborah Novak Jagoe, to accompany me.  She enthusiastically jumped at the opportunity.  Being a veteran of NYC (with dozens of NYC business trips behind her), her expertise was invaluable.

We landed in LaGuardia airport Sunday morning (7/28), checked in early to our Manhattan hotel, and made it down to the 911 Memorial by noon!
911 Memorial with 911 Museum in background
One World Trade Center
Seeing "ground zero" was really quite emotional.  And I can assure you of this: the people of NYC have definitely not forgotten what happened there.  To them, it was just yesterday.  They (rightfully) take this all very seriously and are quick to point out if anyone is not being respectful in that area.

Our next stop was the One World Observatory . . . or floor 102 in the One World Trade Center.  What incredible views from up there!  I'll let my pictures do the talking:
Statue of Liberty and Ellis Island in the distance

Brooklyn Bridge
Deborah and Dave


Next was a visit to the 911 Museum.  Talk about intense and emotional, this place is the very definition.  Here's a few pictures from the 911 Museum:

After all of this on a very hot New York day, we found ourselves wiped out and hungry.  We ended up having dinner in Chinatown at a popular place named Wo Hop.  After that meal, the hunger was gone, but we were even more wiped out.  We ended up heading back to the hotel early and just relaxing.  This also gave me the chance to put together my list of questions for my doctor's appointment the next morning.

8:30AM Monday (7/29): Dr. Sujana Movva, Medical Oncologist and Sarcoma Specialist


My first MSK appointment was conveniently located in the same building as our hotel.  All we had to do is exit the building, go around the corner, and there it was!  After filling out a bit of paperwork and having my vitals taken in the lab, we were soon called back to meet with Dr. Movva.  Upon meeting her and sharing my cancer history, I quickly learned that I have met Dr. Movva years ago.  It turns out that she was the one who ended up replacing Dr. Gina D'Amato at Emory when she left there years back to go to Georgia Cancer Specialists.  I ended up meeting Dr. Movva at one of the Sarcoma Survivor group meetings that Emory used to hold.  What a small world!

Dr. Movva made it clear to me that I have Stage 4 metastatic disease.  At this time, there is no known cure for what I have nor (in her opinion) was surgery a viable option.  Based upon her experience, even the radical "extended hemipelvectomy" would only provide a 20% chance of eradication of the disease.  Having said all of that, she said that my case was not as bad as the typical Stage 4 case since mine appears to be localized in one area and is responding to the chemotherapy.

Dr. Movva went on to explain that there are a number of trials (ongoing or ready to start) for patients with High Grade Myxoid Liposarcoma.  Each of these trials, however, are fraught with the following complications:

  1. They are all Phase II trials (none are Phase III quite yet)
  2. Most of them have very strict qualifications, and my Stage II Chronic Kidney Disease (from chemo I had 11 years ago) and Secondary Adrenal Insufficiency (from benign Pituitary tumor 19 years ago) is probably enough to exclude me from most.
  3. All of the trials would require that I live here in NYC and be treated at MSK for the duration of the program.  No way am I doing that for a Phase II trial.
  4. Some of the trials (that make use of immunotherapy) also want to first suppress your own immune system.  By this, they mean to kill all of your white blood cells first before they give you the drug that (hopefully) will kill your cancer.  Again, no thank you for a Phase II trial.
  5. Dr. Movva also stressed that the results from any of these trials are by no means guaranteed.  Compare this to Yondelis, which has already proven to be working for me.
After explaining (sometimes in great technical detail) all of the pros/cons of being part of a clinical trial, Dr. Movva went on to say that the common sense option for me is to stick with Yondelis.  This is the best option for patients with recurring metastatic myxoid liposarcoma.  It turns out that several of her patients have been on Yondelis for 4-5 years or more and that this treatment alone can keep the sarcoma from growing or spreading.  Apparently many patients are also on the same 1.0 mg/m2 dosage that I get, as higher levels often end up being too toxic.

Should the Yondelis stop being effective or my body can no longer tolerate it, Dr. Movva suggested looking into Radiation Therapy as an option.  Otherwise, just stick with Yondelis . . . forever!

Following our appointment, Deb and I spent the day seeing the sights.  Here was one of our first stops:
At Trump Tower, here to announce my "Yondelis for Life" program!
Having been reminded by the doctor how serious my case is, I had to stop here when we walked by:
Lit a candle and said a prayer at St. Patrick's Cathedral. All I ask is for 15 more good years!
15 years at this point sounds like a dream . . . but I have to dream big!

9:30AM Tuesday (7/30): Dr. Nicola Fabbri, Orthopedic Surgeon

I had the chance to hear all of the gory details involved with doing limb saving pelvic surgery.  Apparently this is THE most difficult surgery they do . . . and my tumor is in the worst possible location.  I'll spare you the details and jump straight to the conclusion from Dr. Fabbri himself: surgery (either limb saving or extended hemipelvectomy) is not going to be an option.  Why?  Because they will not be able to eradicate the disease with surgery.  Instead, however, Dr. Fabbri suggested that I come back to MSK and be evaluated by a Radiation Oncologist for radiation therapy.  Specifically, there are two types of radiation for which he thinks I would be a good candidate:
  1. Stereotactic Body Radiation (SBRT) -- See What is SBRT? for more info.
  2. Proton Therapy -- See What is Proton Therapy for more info.
Each has its pros/cons and it would be up to the Radiation Oncologist to determine what would work best in my case.  I've actually already confirmed my next MSK visit for Wednesday, August 28, with Dr Yoshiya (Josh) Yamada.  I can't wait to hear what he has to say.

Dr. Fabbri and his associate "fellow" doctor made it clear, however, that radiation was going to be no cakewalk for me.  In particular, my sciatic nerve cannot help but be damaged/irradiated during treatment.  Some people I'm told actually experience great sciatic pain as a result of such treatment.  Furthermore, given the sensitive tissues and organs in that area, I may experience other complications as well.  Why are there always complications?!?

Most importantly though, Dr. Fabbri felt as though it would be better for me to start radiation therapy sooner rather than later.  Why not wait?  Because I need to hit this thing hard before it decides to spread elsewhere is why.  Oh but if only the radiation were "easy", like it was 10 1/2 years ago.  But with this beast, nothing is ever easy . . . and there are always complications!

I elect to reserve final judgement on radiation therapy until after my appointment with Dr. Yamada.  Even so, my gut tells me to stay the course a bit longer before I double down with both Yondelis and Radiation.

Thursday, July 11, 2019

Round #6 winding down, Round #7 in 1 week

As the expression goes, "No news is good news!"  And in my case, Round #6 has gone fairly smoothly.  This time I perhaps had a few more (minor) issues at about the 1 week point, but all is well now.

Going forward, each additional round of chemotherapy will be scheduled for approximately every 3 1/2 weeks.  Thus, Round #7 will start on Thursday, July 18th, and Round #8 will start on Monday, August 12th.  The dosage will remain unchanged: 1.0 mg/m2.  The reason for this minor alteration is because doing chemo every 3 weeks is noticeably harder than every 4 weeks.  I sense the difference with bloating, fatigue, and nausea.  Plus, it means making a few more trips to the oncologist's office.  So we're going to try it at 3 1/2 weeks and go from there.  If it's still too much (either physically or personally), we'll drop down to every 4 weeks.

Shrinkage

Several people have asked me about my total tumor shrinkage since I was diagnosed back in January 2019.  I'm not a Radiologist (nor should I play one on this blog), but using some basic mathematical stills, I believe the tumor has shrunk about 19% since January.  I think that's fantastic!

Start Spreading the News . . . I'm Leaving Today In About 2 1/2 Weeks!

For the last 2 months, I've been interested in seeking a second opinion about my treatment.  Given that it appears as though I will be on the Yondelis regimen for many months to come, I want to be sure this is, in fact, the very best treatment I can get.  If there are any Phase III clinical trials available, or even something on the horizon, I might just be interested.

The other reason for the trip is to get a second surgical opinion.  As you may recall, an extended hemipelvectomy was recommended in my case.  But given how radical that approach is, I wonder if there isn't some other option?  Perhaps it's just best to skip the surgery altogether and stick with chemotherapy.  Or, after a certain amount of chemotherapy, we switch to proton radiation.  I definitely want to get an answer to that.

So, with those goals in mind, I have selected Memorial Sloan Kettering (MSK) in NYC as the location for my second opinion.  MSK is a National Cancer Institute (NCI) designated facility that, as best as I can tell, leads the pack in terms of developing new drugs and treatments that specifically target a certain tumor type.  Furthermore, they have some of the very best surgeons around.  Tentatively, I am scheduled to see them later this month on July 29 - 30.  Details should get finalized tomorrow.

Likely the next time you'll hear from me is when I get back from MSK.  I'm sure I'll have plenty to share at that time.