Part 6: BEAM Chemotheraphy with Autologous Stem Cell Transplant (May 2020)

4/24:
Had appointment with ASCT doctor.  She confirmed per the PET scan that I am in back in remission!!!
And she confirmed that my stem cell harvest is confirmed for 5/5, and my hospitalization for high dose chemo and stem cell transplant is scheduled to begin 5/11.
Here we go!

5/1:
Started giving myself 3 shots of Neupogen in the belly once per day. This is to stimulate stem cell production.

5/2:
Covid tested. Long q tips up each nostril. Very pleasant. (Confirmed negative on 5/5)

5/4:
Central line catheter placed into my chest, so now 2 Capped off tubes are hanging off of my chest. About an hour procedure. I forgot to fast the morning of, so they had to do this procedure with local anesthesia instead of full sedation. Not a big deal, I got the full experience. Some moments of brief pain/discomfort but nothing crazy.

5/5:
Stem cell harvest day. The harvest took 4 hours and used both of the tubes on my catheter to take blood, run through centrifuge to extract stem cells, then return blood to my body. The goal is to harvest at least 5M stem cells per kg of body weight, and they schedule 3 days x 4 hours to ensure enough time to harvest that many. Some how I got 19M / kg in my first 4 hour visit!  So that was easy.

5/6:
Follow up appt with ASCT doctor. Everything is looking good for start of high dose chemo next week!

5/11:
Checked into MSK residence apartment on E 75th Street in UES with my mom.  Part of this "outpatient" arrangement is that I need someone with me at all times as a "caregiver" and to just generally make sure I don't get hit by a bus etc.  I mean the chemo is intended to send my WBC and platelet count down close to ZERO, so important to keep me safe from infection and injury.

Apt is a nice sized one bedroom, 2 blocks from treatment building, convenient and beats being hospitalized.

5/12:
“B” treatment from BEAM acronym. Less than 4 hours for total treatment with premeds. No major side effects, just a bit tired afterwards.

5/13 - 5/16:
Each day for 4 days straight received both “E” and “A” chemo drugs. Again these were about 4 hour total treatments, usually done by 1pm with minimal side effects afterwards.  My wife relieved my mom as my caregiver from Friday to Sunday.  Wife and I walking the East River:

                                            

5/17:
Last day of chemo. This is the 26th chemo infusion I’ve had in my life, and hopefully the last ever. It is one day of the “M” in BEAM, and it’s known for causing nasty mouth sores, so I’m instructed to suck on ice before during and after the 30 minute chemo infusion.  Sucking on ice cools the blood vessels in the mouth which restricts blood flow and reduces the amount of chemo that travels through those vessels. So the ice helps reduce the occurrence of mouth sores.  (Reporting back on this several days later, I did not have any mouth sores pop up at all so I guess I did a good job with the ice!)

Another walk along the East River:

5/18:
Stem cell transplant day.  Nurses gave me some dexa and Benadril premeds, then a 10 minute syringe push of my own stem cells.  Then I took a nap and they kept an eye on my vitals for a few hours.  Not a crazy day.  Sent me home with a Neulasta patch to give me shot tomorrow (same thing I got during my GVD treatments).  Another Covid test.

5/19:

A day off - no visits to the treatment building required.  Just had an online telehealth call with an NP.  Pretty fatigued!  Mom and I took a 2 mile round trip walk to central park in the morning, then back to the apt to rest for the remainder of day.

5/22:
Needed my first platelet transfusion, which is totally normal and expected.  Easy 45 minute infusion.

My wife relieved my mom again as my caregiver for the weekend.

5/24:
Not much to report over last few days, which is great news!
No nausea, vomiting, extreme fatigue, or mouth sores which were the expected bad side effects.
Really nothing at all to complain about!
Still have all my hair too.  :c)

5/25:

Received 2nd platelet transfusion.
Hair started falling out of my head big time so I shaved it down to a “#1” today.

5/26:

Nothing in particular to report from MSK today.

Afterward the MSK visit, my 75 YO mom and I walked across the 59th Street bridge to Queens and back!  Over 5 mile loop!  Awesome views, highly recommended.  We slept well.

5/27:

Received 3rd platelet transfusion.

Mom and I walked 4 miles to Central Park Belvedere Castle / Shakespeare Garden and back.  Met up with my friend Mike for an hour visit which was nice!  Lovely spot, check it out!

5/28:

WBC counts are slowly going up, at 3.7 today which is just outside the lower end of the "healthy" range of 4 and above.  WBC counts expected to be within healthy range by tomorrow.

NP advised I could be discharged as early as Monday 6/1.  The remaining qualifier is to see my platelet numbers maintain 20 or above without requiring any more transfusions.  They plan to give me a 4th platelet transfusion tomorrow (Fri 5/29), and then watch me on Sat and Sun.  If on Sunday my platelets are still above 20, they will hope to discharge me the next day on Monday 6/1.

5/29:

Platelets at 20, which is the threshold where I just barely don't need another transfusion.

5/30:

Platelets up to 30.  Nurse Practitioner anticipates I will be discharged Monday, and able to go home by Wednesday.  Did I mention that the view from MSK Koch Center 12th Floor is beautiful?  East River and Roosevelt Island.

5/31:

First and only "day off" where I do not see my medical team.  I do need to get another Covid test, my favorite!

I decided to completely shave my head today, because my hat was rubbing all the hair off the sides of my head and it was starting to look ridiculous.  My facial hair seems to be growing normally so I'll probably grow it out a little.

Here is a photo of my "leukapheresis catheter" central line.  I love this thing because it makes lab draws and infusions completely painless as opposed to the dreaded IV needles.  But tomorrow my central line and I should be parting ways.

6/1:

My platelets shot up to 94 which is way above the requirement of 50 to get my central line removed.  Unfortunately MSK somehow failed to get my removal procedure scheduled today, so it will happen tomorrow morning.

Last night I developed a lumpy red rash on my entire face, and chest, now extended to my waist and most of my back.  The medical team said this is relatively common, and prescribed topical steroids.  If it gets worse I may need to take some more dexamethazone (boo hoo it I'm sick of steroids because they make it difficult for me to sleep, so hopefully can avoid).

Also the rash is sometimes followed by a fever, so they anticipated I may need to go to MSK Urgent Care Center if my fever spikes over 100.4 F tonight.  Sure enough as of my temperature just went up to 99.1 which isn't very high, but is a bit peculiar since it's been consistently under 98.6 F for at least a week.

Did I ever mention that I have a fondness for tugboats?  Tiny little things pushing huge barges.  Very inspiring.  Much respect.

6/2:

I got my central line pulled today.  Nurse yanked it out in a split second.  Feels great to no longer have tubes dangling off my chest.  Now I just have a little bandage in its place.

The rash on my face improved significantly, and the rash got worse on my stomach and lower back.  The condition seems to be migrating down my body but stops at my waistline.  Doctor prescribed me dexamethazone tablets and a stronger steroid cream for my chest, back and stomach.

The waiting areas in MSK Koch building.  Finishes are really over the top, luxury residential amenity space quality stuff.

6/3:

Met with stem cell doctor, who confirmed that I am released to go home.

Arrived home in NJ around 8pm.  Felt GREAT to return with my mom back home to my wife and 2 sons.  MSK apartment and Koch building were incredibly comfortable throughout my stay, but of course there is no place like home.

My new look for the next month or so:

6/4:

Made a day out of catching up on small work and housework tasks.  Felt good to get some things accomplished at the doctor-prescribed relaxed and comfortable pace.  Spent a little time in our back yard which I've been dreaming about for the last 3 weeks, and feels like paradise!

6/10:

Had my labs taken and first telehealth appointment since I got home. 

The NP said labs indicated that all my blood values were recovering from treatment at normal or better than normal rates.

Just a reminder I’m doing this all on a vegetarian diet!  I think my recovery goes a long way to dispel  misconceptions that meat is an essential part of a human diet.