Every day brings something so new and unexpected, it’s almost like a crime detective show where we, as viewers, never know which way things will turn out. Except in my case there is no actual crime, only me being the puzzle to solve.
Dexamethasone 4mg (anti-inflammatory for rashes)
Pantoprazole 40mg (PPI)
Ciproflaxin 500mg (anti-biotic) x 2/day
Acyclovir 400mg (anti-viral)
Itraconazole 100mg (anti-fungal)
Fenazopiridina 40mg x 3/day (bladder pain)
For a person with MS (pwMS) we constantly deal with radical ups/downs on a daily or minute to minute basis, an ever flow of changing plans and decisions as a result, and obviously health uncertainty. So even with all my experience at this, I am in completely in uncharted territory every day with what’s happening. I am simply trying to roll with it and stay in sync with my body’s needs as best as possible.
My sleep was marginally better last night, which was good, plus I do feel some relief on some symptoms. Even if only a little, I am grateful 🌹.
They sent the lab tech out unexpectedly this morning to see where my blood counts were at. OK, cool that satisfied the health control freak side in me.
Fernie got a call soon after that Dr. Elias was going to make a house call this afternoon to see how I’m doing in person. Great, more positiveness. He arrived at 4 PM and unleashed his multi-fold assessment.
First, the results from the blood test today showed further decrease of white blood cells, which is rather inconsequential, but that my platelets had stabilized. Given the low counts, there was no point to do the stem cell count test. So tomorrow when I go in for my PICC line placement, they will do another full blood test to see if it’s worthwhile doing it then.
Second, he says I’m in the very far end of the spectrum in terms of having a super high response to the chemotherapy. He was surprised that I had not bounced back from it as quickly as the average (interesting so I’m special, haha?). He said after eight days since last chemo, quite a bit of time had passed where we should be seeing higher numbers. Plus, remember I’ve been getting daily Filgrastim shots which help build other new cells. Again, this is still within the range of what they’ve seen, just at the very rare, far end of the spectrum (OK I’m doubly special, so can I please have extra candies now?!). I’m serious note, we are being vigilant in all ways for my neutropenic state, and I’ll stay on the anti-biotic Cipro twice a day.
Third, on to the juicy and positive part. He thinks what’s happening is that I’m in a relapse as a result of the chemotherapy. Strangely enough, this is actually a positive thing and they have seen up to a 90% success rate with a HSCT of patients who relapse during this process. Hearing hopeful news makes me a bit wary, but if you think I couldn’t fall off my chair any easier from this surprise, I almost did. WOW!
Lastly, I queried him on his thoughts for the approach to the third/fourth rounds of the chemo. He said we will do it, but will decrease the dosage, yet still be within the therapeutic range. A tiny background of dosage for what I knew prior to arriving here, is that international protocol for most institutions (and from on what I’d seen on clinicialtrials.gov) is that the total amount dosed is:
200mg/per kg of body weight Cyclophosphamide, dosed those over four days (50mg/day). This equates to 8,800 mg of Cy for me.
He said the minimum therapeutic range is 30mg/per kg body weight per day, and has suggested we do somewhere around 40mg/per kg for me instead given I have such an unreal response to it. Plus, let’s face it this is one beast of a toxic drug so less is better, if possible. The only thing that came out of my mouth at that moment was, ‘I really like what I’m hearing’. I felt it was an astute plan.
Oh, and he is getting a preparation made up specially up for my mouth ulcers. Phew.
So after a little bit of debrief/mental processing time, we turned on the Super Bowl. I did a full range of stretches as part of my athletic contribution to the game (like really Jenny, you think anyone noticed?). Silly me thinking I would be seeing any of the usual epic US/Canadian commercials; they were all in Spanish. Just to be clear, I am not a football fan, I just like to watch the Super Bowl. Plus this years’ halftime show was pretty awesome in my opinion.
For my UK/other followers/readers, I know football means something else, and if I was speaking to you we would be talking about a different sport ;-). For everyone who has watched the hilarious TV series Ted Lasso, in the words of Dani Rojas, ‘Football is life’! And that is a game which I do enjoy.
Partway through the Super Bowl, we were informed that my pick up was at 7 AM Monday for the PICC line and to pack for a full day away (along with apheresis and chemo, up to 14 hours). It was quite the scramble to say the least in what had to be planned/packed. I’ll explain why in another post.
WARNING: tomorrow’s post will include graphic/squeamish photographs