Medical: Healthy Enough to Fight the Flu

So, the good news is that they sent me home from the ER midday on Christmas Eve.

I went because I felt lousy on the 23rd and had called at 3am on the 24th when I was running a 101.1 fever. Standing orders from Hospital to me are call with fever and/or related symptoms (in this case fatigue).  Standing critique of Hospital by me is that they undervalue sleep as a curative.

They wanted me to come straight to the ER by 4am but I said, "how about I see how I feel when I wake up and check with the Clinic at 8am"  Fair deal?

The real issue (which I admit is not worth gambling on) is whether I had a functioning immune system at all.  Happily (1) I did, with a White Blood Count of 4.5--my first "Normal" range count since March of 2018, actually and (2) I was fighting plain old Influenza A, so there wasn't much for science to do anyway beyond (2a) Tamiflu, on the hunch that my first flu symptoms were monday and (2b) lots of liquids

And avoid people and wear a mask--which is a way, WAAY, better deal that spending Xmas Eve (& morning) in the hospital.

So I'm multi-grateful:
1) To have a functioning immune system
2) To have a "known quantity" virus with a known treament
3) To have no secondary (bacterial) infection (that'd require an IV, usually)
4) To be able to wear a mask and do xmas with the family

Merry Christmas!

Medical: July 2019, a great visit

Its been 2 years since my diagnosis, and about 18 months since my stem-cell transplant.

Had I not missed a couple of courses of Rituxan, I'd be nearing the end of my post-transplant infusions.

Yesterday I had a great visit:

1) Neutrophils at 2.5 are normal and total count in the high 3.x is near-normal.  So I have plenty of the right kind of white cells

2) Thanks to drinking about 1Liter of water before my blood draws (and taking my antibiotic late the night before). I had no trouble with the kidney function tests-creatinine and Potassium both normal. It did mean I had to go pee about every 15 to 25 minutes, however (before the commuter train, at North Station, as soon as I burst into the Shapiro Clinical Bldg lobby, after checking in on Shapiro 7, after having my vitals taken, and about 4 more times during my visit)

3) They still don't  like  my Liver numbers--which have always caused them to worry and scan (and cut short  my first Ara-C way back when). The numbers have been consistently elevated (and bounce around) for all two years that we've been regularly testing them as part of the "green top" blood draw (the Metabolic Panel).  Dr W wants me to see a Liver specialist to see if it has a cause or is just "Normal for Me".  Over time, we've done ultrasounds and x-rays looking for liver/abdominal abnormalities and never found anything in the liver.

4) But, Yay! I was approved for a 30 minute injection of Rituximab Hyaluronidase Pronounced: ri-TUX-i-mab hahy-uh-loo-ron-i-deys (brand name: Rituxan Hycela™).

The traditional IV bag of Rituxan, even administered at high speed was nearly 2.5 hours: 1:30 minute drip, which always came with about 20 minutes of IV setup before and 20 minutes of final-pump and cleanup after, and usually came with an IV of steroids before and Benedryl nap in the middle.

Rituxan Hycela, by contrast, is a thick injectable.  Only pills as prep (steroid pill, acetominiphan, Pepcid, and Allegra), and then after a wait, a 45 minute cycle:
- Vital signs taken
- 20 minute belly shot (it is thick, so the nurse maintains constant pressure and it makes a little hard blob under the skin.  I briefly had 7-pack abs.
- Vital signs taken
- Vital signs taken at :15min later

Since my pulse had slowed to the 50s at the :15 mark, we had me stay and do vitals again at the :25 mark where the pulse had returned to the 60s

I have good heart health, by the way, with a low resting pulse.

5) And I (fairly) easily climbed the very long escalators at Porter Square on the transit trip home. (Didn't attempt the stairs-only climb, but may next time)

FROM HERE (if all goes as well as today)

August: A Liver Visit
September: Labs+Rituxan Hycela (maybe a CAT scan?)
November: Labs+Rituxan Hycela
January: Labs+Rituxan Hycela
March: Labs+Rituxan Hycela

so we'll run a little bit past "2 years of Rituxan" because I fell behind on doses.

June 2020: Shingles Vaccine, TDAP vaccination, Pneumonia vaccination
Fall 2020: Flu vaccination

Finally got that Rituxan

Two weeks ago, I went in for counts which, had they been bad, we'd've tried IVIG (another "reboot white cell production" treatment that they don't know why it works, just that it does when others have failed).  Fortunately, the earlier Neulasta had resulted in hopeful counts (near normal)

On Tuesday (Feb 26) my WBC and ANC counts had recoverd further--some actually in normal--and enough to get Rituxan (and we'll test again in 2 weeks to see if they've been tanked or have achieved robustness)

Medical: No Cancer (but not enough Neutrophils either)

First the good news: tests show me about as "cancer free" as tests can.

Also, my Liver Enzymes are back to totally normal

Most people don't have a marrow biopsy (left hip this time) and a PET scan to tell them that the cancer is "very gone" (or very undetected, anyway).  But I did.

The Marrow Tests:

• Looking at the marrow core, it looked like normal, healthy marrow. It looked like a very red matchstick, with tiny little gnocchi (the marrow cells) clinging to it.
• FISH Test looks for mutations inside cells.  It found none (when done on my hip-marrow sample)
• Laser Cytometry looks for mutations on the outside of cells. It found none (when done on my hip marrow sample)

The PET Scan

• Looks for the "glow" of cancer that's sucked up the radioactive sugar they inject. 
• I was a 1 (the lowest possible) on the Deauville Scale (where a 1, 2, or 3 are all good)

1. no uptake or no residual uptake (when used interim) 
2. slight uptake, but below blood pool (mediastinum) 
3. uptake above mediastinal, but below or equal to uptake in the liver
4. uptake slightly to moderately higher than liver
5. markedly increased uptake or any new lesion (on response evaluation)

The bad news is that the tests were necessary because we're trying to understand why my white blood count (ANC Absolute Neutrophil Count) are low:

• 1500 to 8000 is normal
• 1200 would be "normal enough"
• 800 would be "low but probably enough in most circumstances"
• 600 to 780 is where I've been bouncing around (In weekly re-tests Jan 10th to Jan 25)
• 500 is "low enough to worry" and be "officially" neutropenic
• 200 is where I was last Thursday

There were two guesses: 

1. the cancer had returned and was crowding out healthy production.  This seemed unlikely because I was not anemic: my red counts and platelets were fully normal
2. the follow up Rituxan (immuno therapy) was to blame.  Recall that that as part of a 2-year post-treatment to mop up stray mutants, I am scheduled for Rituxan every 2 months and had had it 3 such times.

With cancer essentially ruled out, attention turns to it being a Rituxan side effect and me needing some sort of jump start on my neutrophil production.

They'd tried giving me neupogen (a once-a-day shot...but only once per week) just to see if it would jump start things.  It didn't.

On Thursday, when I was 200, they gave me Neulasta (a long-lasting shot) and scheduled me for a visit on Feb 12th, when they may try something else.

That something else will be an IVIG (Intervenous Immuno Globulin).  They don't know its method of action, but somehow it helps people in my situation.  

Medical: October Was Normal (or not)

In October I did my Rituxan with the proviso that my white count (neutrophils) were on the margin of being low.