Day -20: Campath Poster-Baby

The evening went well, Zoe slept very fitfully through the night. We saw a little bit of rash again this morning just as she was getting her Hydrocortisone pre-med, which may have been coincidence since Hydrocortisone usually treats rashes, not causes them.

We’re told Zoe is looking more and more like a “Poster-baby” for

Lucky the fish

Campath, her reactions so far are the mildest most of the staff have seen. I’ll take it.

Today is expected to go just the same as yesterday, no changes to treatment. If we finish out the week tomorrow without anything else eventful, we can breath a big sigh of relief for our first successful week.

Morning Counts:

  • Creatinine: .2 (down from yesterday, which is good)
  • Bilirubin: .3 (unchanged)
  • AST: 78
  • ALT: 36
  • Sodium: 141
  • WBC: 11.5
  • RBC: 3.38
  • Hemo: 10.2
  • Platelets: 111 (down from the campath, we may hold her hydroyurea if they get too low)
  • Lymphocytes: 0

Very quiet today so far. Our appointed mascot, Lucky the fish, highly approves.

Afternoon Update:

Once again, we made it all the way to the end of the day before seeing any reactions. Zoe is having a bit of a flush this time, in what you might call an unusual pattern. Her entire left side of her face is red, with a line right down the middle where it ends.

A couple of NP’s came in to take a look, and they hadn’t seen a rash quite like this before. But, it doesn’t appear to be bothering Zoe much, she’s a little squirmy but vitals are fine.

This reaction is definitely curious. I promise we didn’t leave her in a tanning bed on one side too long, but that sure is what it looks like.

Still, one of the NP’s said he’d never seen such a happy Campath baby, so I guess all things considered we’re doing ok.

Late update: It’s called Harlequin Phenomenon, and we’re told it’s harmless.

Day -21: Campath Full Dose

Our second day of conditioning brings the first full dose of Campath, and a much higher chance of a reaction. So far this morning we’ve done her pre-meds with the addition of Dexamethasone as the steroid, and begun her Campath. The chemo is still administered on a stepped schedule, a small dose, then a slightly higher dose, then the full amount for the remainder of the day.

Zoe’s counts look good:

  • WBC: 18.2 (higher)
  • Hemo: 9.9
  • Lymphocytes: 1 (her partial dose almost completely wiped them out — this is intended)
  • Sodium: 138
  • Creatinine: .3 (up from yesterday, we’re told it will go up and down with the conditioning)
  • Platelet: 331
  • Bilirubin: .4 (still fine)
  • AST: 44
  • ALT: 21

So, no major changes other than a drop in platelets and lymphocytes, both expected. I’ll update later with any reactions and changes, she has only just begun the Campath so it’s calm at the moment.

Afternoon Update:

Everything has gone really smoothly again today.

Minor Campath Rash

Around 3pm, Zoe started some minor rashes on her face and head, no where else. She’s been very sleepy and calm all day and we were beginning to think she would plow on through day 2 without any side effects. So far, things have gone much better than we expected.

We finished the Campath and her rashes showed up just as we began the saline flush, exactly the same as yesterday’s slight fever. Nothing to be concerned about, Zoe is doing great with her treatment at this point.

Blood pressure has held steady around 100/65 most of the day, temperature averaging about 98 degrees.

So far, so good.

Day -22: Starting Campath

We’re off and running now. Campath started today at 11:30am on a stepped dosing process, which means she gets an increasing dose every 15 minutes under observation until we reach the full test dose. The test dose will run for several hours, and is 20% of what she will receive the rest of the week.

Zoe was given pre-meds to help her manage the chemo: hydrocortisone (steroid), benadryl (antihistimine), tylenol (fever), and demerol (pain).

She is asleep, no surprise. We’re told to expect hives, rashes and fevers, so we will see how things go.

Zoe’s blood counts brought good news today, something we are grateful for on this day in particular. Her Creatinine, a marker of kidney function, is now down below .1, which is as low as can be measured. Her most recent test on Friday was .2, which means that her kidney function has improved measurably. Go Zoe!

The numbers:

  • WBC: 5.0
  • Hemo: 10.4
  • Sodium: 137
  • Platelets: 667
  • Seg Neutrophil: 38
  • Lymphocyte: 55
  • Creatinine: <0.1
  • Bilirubin: 0.5
  • AST: 37
  • ALT: 20
  • ANC: 1900

These are the numbers we’ll be following most closely from now on. The creatinine as mentioned is a marker of kidney function. Bilirubin is a marker for liver function, and it’s currently perfectly fine.

AST & ALT will be monitored to determine if we need to hold the Hydroxyurea. If they rise to 3x “normal” or mid-range, then we hold it. 3x “normal” is ~180 for AST, ~66 for ALT.

ANC means Absolute Neutrophil Count, which is a somewhat complicated calculation that measures immune system function. We can expect that to go up and down, but mostly down, during conditioning. After Zoe’s transplant this number will become our holy grail. We’ll be looking for her cell counts to go up and her ANC to rise and stay above 500, as I understand it. We’ll learn more about this closer to the transplant.

The campath will quickly reduce the Lymphocytes, which is what it is there to do. The “segs” will remain elevated and the ANC, which counts both, may therefore stay high initially. Eventually we expect it to go way down and not recover until after transplant.

Afternoon Update:

Zoe’s first day test dose went very well. No major reactions today. She had an elevated heart rate and very mild fever for about an hour, but was otherwise fine.

Because Zoe did so well, we will be giving her Dexamethasone for the next 3 days during Campath instead of the normal steroid given. This is because Dexamethasone penetrates the blood/brain barrier more effectively, and with HLH it can do more to suppress any abnormal cell activity than the traditional steroid given with RIC.

Tomorrow we continue the chemo and step up from the today’s test dose (which was 20% of normal strength) to the full dose. We expect if we’re going to see a reaction we should start seeing it tomorrow.

Cyclosporine & Sodium, Updates

It’s Monday and we’re back to the day hospital at Duke. Today was blood draws and a redo of the GFR kidney function test.

On Friday they took a Cyclosporine level and it was really high, 590 or so, which is much too high for Zoe. It’s a bit of a mystery, since we haven’t changed her dose and, after much hand wringing, feel sure that nothing happened to give her too much. We just don’t know how it could be that high. Normal therapeutic range is 150-250.

She did get a dose just before the test was taken, and we’ve seen in the past that that can amp the results up considerably. We got a reading in the 400’s awhile back after she had a dose just before the test, but 590 is just very high.

So, she’s off Cyclosporine, probably for good now since it is not a part of her conditioning regimen.

We retested some levels today along with the GFR, and found that it was still at a therapeutic level, 112, despite being discontinued days ago. Her GFR was not improved, still about 50 (100 is what we want), but the feeling is that the continued presence of Cyclosporine is keeping it down.

On a positive note, her Sodium has gone up to 137. It’s been down throughout her entire treatment, ever since she began her chemo, but we did no have a reason for it. It would now appear that the Cyclosporine was causing low Sodium for Zoe for some reason.

This doesn’t change much for us, we still proceed ahead, but we’ll be monitoring her kidneys via other markers as we go.

Tomorrow is another spinal tap and bone marrow aspiration, another meeting with the transplant team, then home for the week we hope.

Checking In

After last week’s lower immune counts we had skipped the VP-16 dose for the week, so today Michelle is in the clinic “catching up” a bit.

Zoe’s vitals are back up nicely for the most part, with the exception of her sodium and ferritin. Her sodium has been hovering at a lower than expected count, 127 (where 133-142 is normal), and the doctors are not sure why. Michelle’s sodium intake is quite low, so we’re going to take their advice and up her Gatorade (and junk food?) intakes. More bouillon cubes please!

The ferritin count is trending back upward, a worrisome sign. Ferritin if you recall is one of the markers for disease activity, so we want to see that trending down or remaining static, particularly as we look to move ahead on the SCT soon. We do not want to see disease activity right on the verge of starting her transplant process. Hopefully we’ll know more next week, they’re doing another count today and she’s getting the VP-16, which should have an impact.

There is some concern that we might be seeing the beginning of drug resistance in that ferritin reading, and the feeling is that we will need to move forward soon on the SCT if that is the case.

Feeling a bit tenuous here. Low sodium can mean hospitalization, high ferritin could be a warning sign of a return of the active disease. Better immune counts are our silver lining at the moment. I really want to see her go into her transplant with all systems in top shape.

Vitals for the week:

  • WBC: 9.1 (5-19.5 normal, this is way up thankfully)
  • SEG Neutraphil: 1.456 (also way up, a positive sign)
  • Sodium 127 (133-142 normal)

httpv://www.youtube.com/watch?v=QyOyVv43lsE