Monday 28th (long one):
My sleep was minorly better and thank goodness as today turned ended up being a BRUTAL one so having a little edge on energy was helpful. Everyone else is napping, sleeping tons, and I’m not…grrrr.
My pick up for the Rituximab was at 1pm and I was feeling QUITE apprehensive about this infusion as I have not done well with Ocrelizumab in the past. As I mentioned yesterday, it’s pretty much the same drug as Rituximab.
My 8am morning medications were the same as other days with the exception that Dexamethasone has been removed.
Pantoprazole 40mg
Ciproflaxin 500mg (anti-biotic) x 2/day
Acyclovir 400mg (anti-viral)
Itraconazole 100mg (anti-fungal)
Fenazopiridina 40mg x 3/day (up 3x/day for bladder pain)
At the Oncare clinic, the nurse couldn’t get any vein to cooperate (don’t you all hate all those failed attempts?!) so she ended up using my coveted crook of my right arm vein. I had to keep my arm dead straight or it would set off the beeping of the infusion machine as the flow was impeded. I ended up having it like that for four+ hours!
I already had a bunch of meds in me (Benadryl, Ibuprofen, Tylenol, Tizanidine, Amitriptyline, Gabapentin, more but I forget). The docs knew my previous infusion reactions (rash, anaphylaxis, fever, headaches, etc.) to the MAB drugs (MAB = monoclonal antibody, ie. RituxiMAB, OcrelizuMAB, AlemtuzuMAB, etc.) and prescribed pre-medications in hopes that my body would cooperate. They were:
Dexamethasone 4mg (steroid/anti-inflammatory)
Cloropiramina 10mg (anti-histamine/allergic drug to prevent above mention reactions)
Then:
Rituximab 1000mg
We started off infusing the Rituximab very slow. It was OK at first, then once the speed increased after an hour my head started spinning, breathing became difficult, nausea hit, crashing headache, shivering cold, and my body and bladder pain skyrocketed. I was sobbing, rocking back and forth in agony, and desperately looking at Fernie for help. It felt like a hot poker was being rammed up my pee-pee hole. Fernie was holding my hand telling me over and over I was going to be OK, and was going to get through it.
They stopped the infusion immediately and called in Dr. Elias to discuss the situation. He had already prescribed some Oxybutynin (3x/day) for the bladder pain/issues when I arrived, and they gave me an injection of 1000mg Parcetamol (Tylenol) and Onemer 30mg (anti inflammatory to reduce pain, fever, etc.).
I’m not sure how much time passed till my breathing and everything else chilled out enough before they started it up again, slowly. I made a quick video just after all this calmed down (click here) or see below. (In retrospect I don’t know how I seemed so lucid in that video!!). Somehow we got all that drug in me and I couldn’t have been happier to see the backside of that chemo room, as lovely as it was.
We next had to head upstairs to meet with Dr Andres for my final consult in the offices of CR. It was already after 6pm, I felt like h*** and waiting for this to start/end felt like forever. I barely caught a fraction of what we discussed, but this is what I recall….
The feedback was that my treatment went really well (wicked news!). They were super hopeful for it being successful (halting decline), and explained what to expect in the coming months (ups/downs/potential relapses as recovery progresses), foods to avoid (undercooked meats/fish/eggs/etc), medications to stay on until lymphocytes return to normal levels (6 months up to potentially 2 years) to prevent re-activation of any human herpes viruses such as shingles, CMV, etc., etc.
There was another drug he recommended I get to prevent pneumonia from the Pneumocystis Jiroveci fungus (anybody heard of that before?!). And of course, I had to take care of outstanding payments for extra medications, etc.
I put a pin on their map of the globe of where I was from, was given a sweet little girlie gift (love those, haha!), and we said our thank yous/goodbyes.
You’d think the day was over, but no. We took off to pick up Lisa who was waiting patiently at her hotel for us to get our our rapid COVID antigen test done. Once done, Lisa was dropped off again, and when Fernie and I returned to the apartment, we looked at each other in silent, utter exhaustion and acknowledgement of how horrible the day had been.
The thought of a full day travelling tomorrow was daunting….
Click here for video of what the Oncare personal infusion room looks like
Jenny, you are so tough and determined! Thank You for doing this and showing SUCCESS! You’ll be in the medical record books! No need to begin with apologies! We all have cog fog, but you’re a real example of someone who’s life will be blurry occasionally! Be proud of your moments of forgetfulness or doing things twice! Just Go Girl 💥😉🌟🌟🌟