This time is different. 1 day, outpatient. No PICC line or port, just an IV.
I wear cryo mittens and booties during the Taxotere infusion to mitigate the peripheral neuropathy. For the record these are really cold. I had to take them off several times to warm up my fingers and toes. They are supposed to be cold but not painful and people do get frostbite from them. The weight of the booties triggered spasms in my left leg. I will carry Mio Sport next time to help with that.
I was given an anti-nausea, Benadryl, and Pepcid in my IV before the infusion started.
The Taxotere was given first. Within 5 minutes my hips started to ache. That pain ramped up and when they checked on me in 5 more minutes the pain was at about an 8. A reaction. They stopped the infusion. Started saline to stabilize it. The hip pain disappeared almost as soon as the infusion stopped. Called in doctors. I ended up with 3 nurses, a physician assistant, and a doctor in the small suite. All agreed I was reacting to the infusion. They gave me more Benadryl, more Pepcid, and a steroid. A short wait and they started the Taxotere again. This time, no pain and no reaction.
The Taxotere was followed by Cytoxan. 2 chemo drugs. The Cytoxan infusion went without incident.
The full infusion lasted about 6 hours this time. Next time is supposed to be faster.
And with that I packed up my stuff and went home.
The next day I returned for the Fulphilla injection. Fulphilla is a growth factor that spurs your bone marrow to produce more white blood cells. This is important during chemotherapy as the chemo kills off white blood cells putting patients at risk for infections. I receive one of these injections 24 hours after each chemo infusion.
Now the symptoms…
I honestly didn’t notice any chemo specific symptoms at first. Remember, I have MS so fatigue is a constant with me as is an intermittent tiny bit of peripheral neuropathy in. my left pinky finger.
I did notice the side effects from the Fulphilla. My hips started hurting right away and the bone and joint pain got progressively worse. Hips, thigh bones, knees, shins, ankles all ached more than I thought was possible. And as an added bonus, the bone and joint pain triggered leg spasms. The fix for this pain according to the care team is to take Claritin. Antihistamines are supposed to lessen the pain as the pain is thought to stem from a histamine response. I take Claritin every day for allergies. It did nothing. I started taking Benadryl and Tylenol every 4 hours and that helped. On day 5 I started running a low grade fever. It mostly made me miserable. In addition, my heart rate jumped. I already take medication for tachycardia so anytime I see my heart rate over 100 while I am sitting still I worry. The care team thinks all of this, the high heart rate and the low grade fever, was a reaction to the Fulphilla. I think for the future cycles I am going to start taking Benadryl and Tylenol right away and see if I can mitigate at least some of this misery.
Now, back to the chemo symptoms.
I most certainly experienced crushing fatigue those first few days. I am not sure if it was the chemo or the Fulphilla. I have a lot of fatigue anyway from the MS so it is hard to pin down the actual cause very accurately.
I have an intermittent non-productive cough. This is apparently a symptom of the Taxotere.
It turns out that I am also my own worst enemy. Early on I noticed that I developed a terrible taste in my mouth – as if I had been chewing aluminum foil. It was unpleasant. My entire GI tract got very acidic. Note, I am not prone to nausea. I did not experience any nausea during the chemotherapy for non-Hodgkins lymphoma. I kind of thought this would be true this time around as well. On day 9 I woke up to waves of nausea. It was startling and awful. I gave in and took one of the anti nausea medications they gave me. I felt better almost instantly.
I am an idiot. They gave me an arsenal of anti nausea medications. There are 3. With instructions on which one to take first and second and a third one to deal with nausea and help me sleep. I didn’t think I needed them at all. It felt a little like my badge of honor that I don’t need anti nausea medication even during chemo. Note: while I was doing the inpatient chemo for the non-Hodgkins lymphoma, they gave me strong anti nausea medication every day in my IV. Seriously, I’m not sure what I was thinking.
Once I started the ani nausea medication I felt better, the bad taste in my mouth improved, and I started getting better sleep so my overall well-being improved. I have more energy. I almost feel normal.
Lesson learned. I will start taking the ani nausea medications much earlier.
So far during this first cycle I have had no noticeable peripheral neuropathy. I think we can say the cryo mittens and booties work.
This is day 14 in the 21 day cycle and my hair has started falling out at a noticeable rate. Since I have been through this before I know what to expect so it is a lot less traumatic. I want to see how long it takes to fall out on its own. Last time the trauma of it was too much and I shaved my head within days of the first significant hair loss rather than go through the long process. It is weird and interesting to experience with a little less emotion. I can feel a kind of tingle as the hair follicles let go, almost as if they are saying to the hairs “fly and be free”. I am not anxious to be bald again, but I have been there before, I know how to manage it, and I know my hair will grow back. So, here we go. The beanies are ready when I need them.
Cycle 2 starts next week. I am hoping that with the lessons learned in Cycle 1 I will be able to mitigate the worst of the symptoms so cycle 2 will be more comfortable.
