Before you start treatments (I am assuming this is the same for all), you will meet with a member of the oncology staff and go through what they called an “education session.” During this session they go over the medications you will be given during your infusions. They will list off all the possible side effects that you could possibly go through with each treatment. And they will tell you everyone is different…HOW TRUE THAT IS!

An example of different is that each day for a week post infusion I receive an automated text from oncology. It asks to let them know how I am feeling and any symptoms I have:

1. Nausea/vomiting
2. Diarrhea
3. Pain/Immobility
4. None

The problem with this is, there is no way to send your own answer because it is automated. So, if I am having other symptoms aside from the ones listed…how do you tell the doctor other than calling? Well, I have been writing it down and keeping track. I went to the doctor this last visit with a list of 7-8 questions that I wanted to make sure I asked.

Here are some of those things.

Hair Loss & Scalp – One of the things I specifically asked my doctor is what are the chances of hair loss with the drugs I will be given. He looked them up as we sat there and said one has 6%, and the other is 7% chance. Granted I have always lost a lot of hair due to having PCOS, but, not as much as I have been in the last two months. My hairdresser who knows I have very thick hair even noticed the change. Not only has there been hair loss, but my scalp burns in spots during the week after infusions.

Bathroom Visits – Yes, they tell you diarrhea is a side effect, but so is constipation, and they do not ask you about that on the post infusion text. Chances are very likely you will get anti-nausea meds that have this as a side effect. Those pill bottles do not lie. However, what they don’t tell you is you may have a few days of constipation (which is weird since you will be visiting the bathroom every hour because you are drinking so much to stay hydrated) but look out when it very quickly switches and you get the other. It’s not a false alarm…RUN!

Hunger/Nausea – I may be different on this one as I do not handle nausea well, but the pains of the two are one in the same post infusion. Right after infusion 1, I would wake up in the middle of the night and would think I am going to be sick, but at the same time feel like I need some crackers. After infusion 3, as I said in another post, I was not hungry, but I would feel nauseous so often times I would make myself eat something and the pain would subside.

Dry Mouth / Bad Breath / No Taste – Of these three things…the only one I remember hearing about in the “education session” was the taste issue. You will quickly realize what you can/cannot taste or stomach post infusion. My tongue feels like I have a film on it, and no matter how hard I try…I cannot brush it off. Various things taste like dirt or have very little flavor at all. For me two of those things is Coffee and meat in general (both of which I normally consume daily).

I have done my research since, but “chemo breath” is a real thing, and something I have from what I am told (I cannot smell my own breath). I did ask the NP about this at my last appointment, and she suggested Biotene for Dry Mouth, and I hope for my husband’s sake it is working.

Food Cravings – This is another one that will be different for all I am thinking so I would love to hear thoughts from others. My cravings have been random throughout.

Infusion 1 – Heavy acid foods. This was mainly vinegar, dill pickles, spicy salsa. I did also want peanut butter, saltines, and ice cream.

Infusion 2 – Pasta of any kind, and way. I made enough pasta and red sauce with hamburger that I ate that 3 days in a row. Other days was box mac & cheese, and a family favorite macaroni and tomatoes.

Infusion 3 – As I stated in another post…bagels and cereal (banana nut crunch).

I guess they really do mean it when they say it does not matter what you eat, as long as you are eating!

What do you crave post infusion?