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.