The chemo girl who’s flushing. The patient named Lacey. (to the tune of The Nanny theme song)
So guess what, I interacted on an allergist’s post on Instagram about Benadryl not being recommended anymore as a first line med for allergic reactions. Comments were opened for questions about why that is the case, so I asked why 2 Zyrtec didn’t seem to be having an effect on my rash that appears at the same time on Day 2 each cycle. I inquired why it seemed to be taking the Benadryl to finally knock it out. An allergist responded that chemo flushing is not considered an histamine reaction. It is something separate and not widely understood what is causing the flushing. Of course I did some research and found out that chemo flushing is a thing that people experience. It’s maybe not seen super often, but it’s not an anomaly. In my interactions with the nurses and NP, they seemed to have not seen my presentation before. It would have been nice if they explained that what I was experiencing was likely chemo flushing, and it sometimes resolves with antihistamines, but it can also just go away with time. The reason one would try to use an antihistamine is to help with discomfort, but the flushing itself is not dangerous or indicative of an allergic reaction. Instead the NP said, “Well, it could be this that or the other.” Which sure, that seems to be the understanding, however an explanation of the phenomenon would have been much appreciated.
Anyway, the one dose of Benadryl seems to maybe preventing me from getting quite as red, but it’s also early. I tend to get my brightest around 2:30pm. I’m going to take another dose of Benadryl, but I’m also curious if the flushing was just slowing down by the time I had taken 2 Zyrtec and a Benadryl. Was it time or was it medicine? Was it both? I have slept a total of 15minutes in the past 30hrs. The first benadryl didn’t put me to sleep, maybe the second one will bring some rest?
There is good news. I had gone off of one of my anti-anxiety meds because of the concern that it was causing something called lamotrogine rash, which is not to be messed with. Look it up if you like. I’m going to titrate back up on that med to see if it worsens the flushing. Hopefully it won’t, and hopefully my anxiety will be back under control, so I won’t have to use so much energy telling my body and brain to not spiral.
The other thing that I researched was my birth control and blood clots. I was happy to find out that even though my Nexplanon implant can cause clotting, the fact that I am on Eliquis makes it less likely. So I feel comfortable keeping it in throughout the rest of treatment, and then reevaluating when I go off of Eliquis. I was feeling quite concerned whether or not I was making a faulty risk analysis to stay on birth control due to fear of sliding into a darkness. Obviously, God forbid, if I have another clotting episode, I’ll have to make a different decision. That would probably look like getting my implant taken out and transitioning to a non-estrogen birth control. I’m a little skeptical if that will be effective for my PMDD, but I will cross that bridge when I get there. When it comes to PMDD, perimenopause is supposed to be pretty brutal, but menopause is supposed to be better. I’m 42. I probably have a few more years until natural menopause, so we shall see…
As I sat up to eat in bed today, I looked down and noticed my pump had become disconnected. There was blood in my tube closest to my port, and the pump said it was still running. Thankfully the chemo medicine wasn’t spilling out. I called City of Hope immediately, and they stepped me through clamping my tubes, reconnecting the section that had become disconnected, and restarting the pump. I have to say when I looked down and saw the disconnection, I was quite alarmed and dreading another infusion center visit. I’m happy I was able to handle it at home!
In my attempt to relieve some of my chemo belly symptoms, I figured maybe I should add a probiotic to my meds. I reached out to my beloved NP(taste the sarcasm) to ask what would be recommended. She responded that greek yogurt and kefir are the least expensive ways to add probiotics to my regimen. Note I did not indicate that cost was a concern. I responded that I can’t tolerate yogurt or kefir, and I asked if there is a recommended supplement? Certain strains I should look for or avoid? A specific brand or quality test. She responded that any of the well-known brands like Culturelle, Align, etc would be fine. But guess what I did….research. Every site I read said there is some evidence of specific strains being helpful for cancer treatment, but if you are currently undergoing chemotherapy discuss with your doctor. Well, considering I’m not fully trusting that I’m getting the full picture from my NP, I dug a bit deeper. I learned that oncologists do not like to recommend any supplemental forms of probiotics because they are not FDA regulated and you don’t truly know what you are getting, and there can be some quite negative effects for immunocompromised people undergoing chemotherapy. So, I have resolved to find non-yogurt probiotic foods. There are a few out there that I am going to try: miso broth, kimchi, sauerkraut, pickles, and gouda cheese. Considering cheese and pickles used to be in my Top 4 things I love, I’m happy to add some of those in. I have a friend on top of helping with miso broth and kimchi. I am quite skeptical of vibing with kimchi, but I’ll try :) Otherwise, I’ll just add a meatless reuben into my food list! Oh and sourdough bread. I’m not a huge fan, but I happen to have a mother-in-law who makes the best tasting sourdough. She’ll be here on Sunday, and I’ll be sttocked up by the time she leaves two weeks later :)
Yeah, I’m an annoying patient, questioning my doctor’s advice, but I think it has served me well thus far. I trust that I am getting the right chemotherapy regimen, and that’s the most important part.
I mean, I did question for a moment when my friend, who is about two weeks ahead of me in her own colon cancer journey, told me she is on her last cycle. Cycle 4. She was recommended to do the 4 month CapOx pill/infusion regimen. However, I quickly recognized that although our diagnoses may be similar, they also have their differences. And, we are just different bodies and personalities. I know for certain that it would have caused an immense amount of psychological stress for me to take chemotherapy pills every day for 2 weeks each cycle. I’m already at my limit when I have this pump attached to me for 48hrs. I’m impresed with her ability to get through it, and I know she can’t believe I have 8 more cycles. But all in all, I trust the infusion nurses and my oncologist’s recommendation, especially since it was the same treatment I had figured would be best for me. And woof, 8 more cycles feels daunting. I know I can do it. Just gotta grin and bear it.
I’ll continue to vent and complain while trying to find some positives.
Onward.