CHEMO ROUND 1

My first round of TC (Taxotere and Cytoxan) was 4/9/2020. Over the last three weeks I have experienced a multitude of side effects but feel overwhelmingly grateful for the treatment and ability to pull through! I am going to try to share the side effects I experienced in a stepwise fashion, all chemo regimens will have different side effect profiles and things that are more or less likely to happen. It is important when reading this to know this was my personal side effect experience with my round 1 and even if on the same regimen yours may look very different. Overall, I hope that sharing this allows you the opportunity to think about how to prepare for things maybe you did not know you should, or ideas for small gifts for loved ones who are going through chemo treatment that they may need and not even know yet!

CHEMO DAY

· I worked out before I went because I wasn’t sure how I would feel and there has been some research that shows working out before and regularly decreases side effects.

· The cold cap is every bit as cold as it sounds at 37 degrees fahrenheit, I took 1000 mg of Tylenol an hour before my treatment started to try to decrease the headache from the coldness. It felt like I had a bunch of heavy scuba gear on without the ocean to dive into.

· They used a tiny 24-gauge IV peripherally for my chemo which I was very thankful for since it was not sore

· The nurses should ABSOLUTELY tell you each medication they are hanging as they hang it, as well as verify it is the specific medication FOR YOU, you should ask questions if you have any at all.

· In case you are wondering what the actual day is like I read, listened to music, ate, made a Tik Tok (see below), and did some CE’s for my pharmacist license. We were there 7 hours because of the cold cap time.

· I actually felt good enough to do Pilates with my friend (virtually, thanks COVID19) that night once I was home after I took a nap.

Day 1-4

• I was started on olanzapine (Zyprexa) for off-label use of chemo induced nausea. I took one dose and refuse to ever take it again. I felt like an absolute zombie the next morning after this medication, much like a hangover from Benadryl but to the nth degree. (If you are prescribed this it may not make you feel like this and it does have great results for reducing nausea!) I can say I was a little nauseated over those first few days but able to eat normal meals, and work out. I used Zofran every 8-12 hours. Mornings were always the worst feeling for me, but I almost immediately felt better after having breakfast.

• Chemo fog is a real thing. I felt like my brain was processing everything at a slower pace than normal, and sometimes found it hard to concentrate on the task at hand. Something I usually have no issues with. If you have a loved one going through chemo, or you yourself are, give yourself a little grace during this time period!

• I was off work for Thursday (chemo day) and Friday as well as the weekend, and able to be back working Monday morning.

Day 5-9

Some interesting side effects began

• I woke up and my mouth (definitely tongue) felt like sandpaper! I thought this was so weird. I was advised to use biotene, and if I started having further mouth soreness to try magic mouth wash. Since then I have had a few canker-sores but the mouth washes have really helped with both the dryness and soreness overall

• My taste buds are WACK! Seems that bitter, salty, normal taste buds are all broken at this point. My sweet taste buds seem to work the best…. So my sweet tooth has become worse than ever!

• Toilet issues: Diarrhea is a pretty common symptom with most chemo regimens. I like to be different, so my body has decided to take the constipation road instead. For diarrhea options such as loperamide (Imodium) over the counter are recommended. If you experience bad diarrhea after treatment it is important to treat it, as well as be aware of how much fluids you are taking in so that you do not become severely dehydrated or have electrolyte imbalances. Please let your doctor know if you are unable to control diarrhea with Imodium. If you experience constipation issues a stool softener such as docusate (Colace) over the counter is a good place to start. Another important starting point is increasing how much fiber you are eating and drinking more fluids, make sure you are active. If its still issue there are many other options you should explore with your oncologist such as laxatives (Senna, Miralax) or even magnesium citrate.

Day 10 was a doozy.

As i had said before directly after chemo and the whole time although I felt "off" and not quite myself I was still able to workout etc. so really wasn't feeling THAT bad. Until Sunday morning (day 10). I felt weird when I woke up but decided I was going to be fine. I got myself ready and watched church on the tv like each Sunday during COVID19. By end of the service I was shaking uncontrollably and I knew something was wrong. Justin took my temperature and it was over 102 degree fahrenheit. Since I was 10 days out from treatment Justin and I both suspected that it may be neutropenic fever, but with everything going on we immediately were also concerned about COVID19. After taking tylenol my fever still would not break, so to the emergency room we went. I was lucky to be cared for by both nursing staff and physicians that I have worked alongside over the years. I ended up most definitely having a neutropenic fever with a white blood cell count of 1000 (normal 4000-10,000), and absolute neutrophil count of 0 (normal 1.5-8.0).

I think this is really important for patients and caregivers to understand. So I am going to take a second to teach about this then we will go back to my diary like writing.

What is neutropenic fever?

During the time when your white blood cells that fight off infection are low after chemotherapy (called a nadir), patient has flu like symptoms and also 3 oral temperatures in 24 hours of 101.4 degrees farenheit or greater, or one temperature in 24 hours greater than 101.3 degrees farenheit. This nadir usually occurs between days 7-12 after chemo. A nadir itself is perfectly normal but the fever and symptoms to go with it are not. Usually patients should have a nadir and not even know that it is happening. This however is why it is SO important for all cancer patients receiving chemo ALWAYS be cautious about being around sick people throughout treatment. When you have neutropenic fevers the physician will take blood cultures, urine samples, possible do chest x-ray to look for pneumonia, flu swabs, COVID19 swabs etc. to try to find a reason for the fever. A lot of the time no specific cause will be found during neutropenic fever, you will be treated with broad spectrum antibiotics (antibiotics that cover a LOT of different bugs just in case!) and be asked to track your temperature closely over a few days. Some patients will be admitted to the hospital to ensure the fever resolves, while others may be stable enough to be sent home. Medications such as pegfilgrastim are given to patients post chemo infusion to help decrease the chance of severe neutropenia, moving forward I will be adding this medication to my chemo regimen.

Day 11-20

I took it easy after the ED visit. I was lucky to have friends come take care of me the night of my ED visit so that Justin could go to work. Justin and I lived on separate sides of the house for 5 days until we hoped my neutrophils and white blood cells would be back to an okay range. I didn't work out, I didn't go outside even with a mask - nothing. It was well worth it because we found out on day 18 my levels had raised back to "normal"!

The other big thing that happened in this week was that I started to lose my hair. As most of you know I am using a cold cap during my chemo regimen, in hopes to keep my hair. Dignicap is very stern in making sure we know that they only hope for 50% of it to remain per their clinical trials, but of course most of us using it hope for it to be much more than that. Day 17-21 are usually the worse hair loss from what I have read and been told. On the night of day 16 I lost about 1/4 of my hair all at once and it was terrible. It doesn't matter how much you think you are ready for it, there is something so sad about piling your own hair into a pile on your bathroom floor to throw away. One more physical reminder of how much cancer sucks. But, simultaneously your heart says - but I am alive, and lucky for a treatment so suck it up! Also, my scalp burns pretty bad which another side effect of cold capping - and not washing my hair or basically not touching it at all is close to driving me crazy, but I am trying!

TOMORROW

Tomorrow, April 30th 2020 is round 2 of TC. I will start at 0730 and finish by 1400. I pray that I have figured out most of the side effects and that this round goes even more smoothly than the first.

If you or a loved one are about to embark upon a chemo journey - I say rekindle a hobby you love and haven't spent time working on, or find a new one to pick up. It has helped distract me greatly from all the side effects and frustrations of treatment by focusing my energy on something I enjoy and want to be better at. Also, if you are religious I can not tell you how much personal time with God each day helps me put everything into perspective and gives me the desire to push on. Personally, along with some quite time with God, hobbies have included yoga, buying a guitar, starting a book club, and assisting my husband with redoing our living room floors.

Also, obsessing over Outerbanks on netflix, wow that show is good.

Thank you for all the continued prayers - I am excited for tomorrow and look forward to marking off another chemo session on the calendar.

Until next time,

Sami