Ronna's Story - Chemotherapy


Medical Oncologist:

My Breast Surgeon recommended my female Medical Oncologist and set up the appointment. You will go in for a consult and will discuss the pros and cons of Chemo. My doctor had already looked at my history, age, tumor size and stage and had come up with a “computer generated” formula. On “paper” it looked like I fell into the “intermediate” category for Chemo benefiting me and she was NOT recommending Chemo for me at this point. My doctor suggested that I have the Oncotype DX test in order to help her decide if Chemo would be a greater benefit rather than the risk of side effects. This test is a diagnostic test that helps identify which women with early-stage, negative sentinel lymph nodes, estrogen receptor-positive breast cancer are more likely to benefit from adding Chemo to their hormonal therapy. The test reads, 0 to 18 is low, 19 to 30 is intermediate and 31 to 100 is high risk of reoccurrence. This test takes 10 to 14 days to get the results and this was my most stressful time throughout my entire journey. My score was 29 and at the time I was thinking “30” was the start of the “high” scale. Either way, it was suggested to me to have Chemo, so I did. I believe things happen for a reason and all the little pieces had to fall in place for me to even have the test and without the score, I would not have been offered Chemo. Even though I wasn’t looking forward to it, I’m glad I did it and to know that I will NEVER have to wonder if I did the right thing had I NOT had Chemo.

Before Chemo:

I found out on September 1st, the day before my 41st birthday, that it was recommended for me to have Chemo. My first Chemo was a week later on September 8th.

I’m not sure how to prepare you for it, but I personally shaved my head the day before Chemo! I went and bought a wig at the wig shop, the doctors usually have a rack full of brochures. I had my hair in a short hairstyle already because lots of ladies agree that it’s better to cut it short if your not going to shave it so when it starts to fall out or thin, it’s not as noticeable. I went to the wig shop and picked out a $140 wig, check and see how much, or if, your insurance will cover for a wig. The insurance company calls them “cranial prosthesis” and I had to have a prescription for it. Also make sure the doctor puts the “code/number” on the prescription. Mine was “breast # 174.9” the lady at the wig shop said the insurance won’t pay unless it’s written on the prescription. I suggest you go before your hair falls out so you can match the color. If you do shave your head before you get a wig, keep a sample of your hair to match the wig color in case you change your mind down the road. I also got a few cute hats and scarves. However, most of the time, when it was warm, I ran around with nothing, just a pair if earrings. OH and when I had my head shaved at the barbershop that cuts kids' hair, I put several Band-Aids on my head and held up the razor and took a photo and titled it, “don’t leave me alone with a razor, I may cut myself!” I really didn’t get cut, it was just for fun!

I did start to lose some of my hair around the 13th day and about two days after my 2nd Chemo, September 28th; I lost most of my hair on my head as well as on my body. I only had to see little ¼” hairs in the sink, not chunks all over my pillow or drain. People are different and you may be the one person who never looses their hair, it’s just how I handled it.

Getting Chemo:

I chose to not have a port and the doctor was willing to let me try as I only had four rounds and my veins were good. I received my meds for three hours via IV in my veins: wrist for three treatments and the last one in the back of my forearm. They tried to put a needle in the back of my hand on the first treatment because they have to start as low as they can in case the vein collapse but it was too painful, so I suggest starting in the wrist. Again, they don’t numb the skin where I’m at, so it may not be bad at your center. The first time you receive the Chemo drugs, the nurse will sit right at the foot of your bed, if not right next to you, and monitor you for any changes like shortness of breath. They also had a portable “crash box” at the end of my bed in case they had to restart my heart. Again, I don’t want to scare you but don’t be surprised if you have this happen to you or extra doctors milling outside of your room at that time. They will give you several kinds of meds before they give you the Chemo, like saline flush, Benadryl, steroids and something for nausea, then the Chemo drugs and another saline flush after the Chemo drugs. Again, this is what I experienced, so your Chemo treatment could differ as well.

My IV meds were cold all four times, and only on the 3rd treatment for about 20 seconds, two times, did I feel any burning. On the 4th treatment I asked for a heating gel pad, which they microwaved, so be careful it’s not too hot. I did break out with a rash that was red with white spots but it went away as soon as I stopped using it. The nurse said that was normal.

I brought along a breast cancer blanket I was given, but they should have plenty of blankets and pillows there as well. A lot of people sleep, but not me, I’m the person who has to take a sleeping pill to even think about sleeping. I also brought a good book and ended up selling all my good old gold jewelry and bought an iPad for the last three treatments. I would also bring along a snack and your favorite drink, again, they usually have snacks and some drinks but I’d rather not find out if I were craving it. I’ve gotten beds all four times, but the chairs recline and the Chemo IV unit unplugs and runs off a battery and can roll around with you. I’ve had to go to the restroom a few times and no one thinks twice about it. OH, they should tell you to flush the toilet twice for two days after Chemo so nothing could “splash” back on you or someone else, or, Heaven forbid, a dog drink out of the toilet.

Chemo Side Effects:

It differs for each person what you will experience and how long or good you will feel. For me getting the 1st round was o.k., the next day, after I got the Neulasta shot, which they give you 24 hours after Chemo, I woke up at 2:30am and my muscles and bones were talking back to me. By morning I had nausea and a sore throat. And for me, I got thrush in my mouth. I was able to keep the “sores” at bay, but my tongue turned white as a piece of paper, was swollen, rough and raw. The doctor called it a “fungus” which I’m pretty sure is “thrush.” I also had the metallic taste in my mouth. I was sore, I believe from the shot, across the shoulders, jaw, lower back and hips mostly. I was very “crampy” as well but I know this was pushing me into menopause so I was trying to watch and see if it was nausea or cramps. I think it may have been some of both because I was about three weeks late and I started four days later very heavy. The 2nd round was much more manageable with more meds (I listed below) but I started feeling nausea the day after chemo rather then two days and started my period, but it was just spotty for a few days then just normal, for me, a few days then just lightly spotted until the day before the 3rd round. The 3rd round was even more manageable, same side effects as 2nd, but I had the worse case of constipation out of all four treatments. You may want to have an enema bottle on hand. My period started a couple of days after Chemo, but stopped after about four days and has not started again. The 4th and last round was same as the 3rd but the easiest for me. I think that’s because I knew what to expect and hardly drank anything but Milk or water. However, the nurse forgot to give me my nausea meds before my Benadryl and I got nauseous during the treatment. I’m not sure if it makes a difference, but if they can give you the “pre-Chemo” treatments in the same order every time, it could help.

What Meds and Over-the-Counter Items I Had:

  • For all 4 rounds I was on “Dexamethasome”, a steroid, for three days. One before, one the day of and one day after chemo. I know they will give you some good stuff in your IV as well, but this was what I was on.
  • For my first round I used a product called “Ulcer Ease” I’ve used it in the past for canker sores, but was a little cautious because I wasn’t sure how if it could make things worse. I “tried” to use this stuff the doctors prescribe for me and it's name was “magic mouthwash”, it tasted horrible and made me more sick feeling then I already was.
  • Biotene Dry Mouthwash: I didn’t have this for the first round but have used it for the rest of the rounds and it helps with the “dry mouth” and doesn’t sting.
  • I had a six-month scheduled dentist checkup after my 1st Chemo and my dentist prescribed toothpaste for dry mouth as well. Just drinking water will not help keep the food from sticking to your teeth and starting decay. He said he has seen a lot of cancer survivors come in with teeth problems because of dry mouth so take it seriously.
  • Get a new toothbrush after you get better after each Chemo treatment. I have one of those that sanitizes the heads for me, but germs live in the bristles. Or if you are sick it’s a good idea to use a new one.
  •  After my 1st round my doctor prescribed “Nystatin oral suspension” mouthwash to help with the mouth fungus. This was not as thick and the taste was tolerable.  I also had a pill for the fungus, and it was called “Fluconazole.” Thank goodness this helped. I did have a touch of it but noting like I did the 1st round.
  • For nausea I was prescribed two medications for both treatments and I’ve tried both of them. The first one was “Promethazine” that is for every four to six hours and “Ondansetron” that is for every eight hours. I used as needed for all four rounds.
  • For the muscle and bone aches, they put me on “Methylprednisolone.” It definitely helped and eased the pain. It’s in the steroid family and it also causes the mouth fungus, but that’s why she gave me some meds for that. I used this the last three rounds. I received this in a 21-pill pack. It also helped me keep some sort of appetite even though I couldn’t “taste” too much.
  • Water: I personally don’t drink enough water, but I did try and drink at least two 16oz bottles a day. I love milk but couldn’t drink as much the 1st round because the thrush was so bad and it was hard to swallow. I did have two Pepsi’s a day, but I don’t drink coffee so I needed my touch of caffeine a day.
  • Ensure: I’m sorry but I tried those darn things and I just couldn’t get them down, but they’re great if you can tolerate them.
  • Yogurt: I had several flavors of them around, Wal-Mart brand, and they are good as well.
  • Fruit is always good to have around.

After Chemo:

It took about two weeks for the bruise on my arm to go away from where they tried to start the last Chemo IV. I had a touch of neuropathy where my fingers jumped and the muscles were sore. After about four weeks they were both better. I also noticed that after about four weeks my eyes quit watering because they were dry. I didn’t realize it but they had watered from after the first Chemo. It was funny, my hair all fell out after the 2nd Chemo, but a few stray hairs started to grow back about two weeks later. It would grow, then pause, then grow again. After about six weeks, it really had a growth spurt. If no one has told you, don’t be surprised if your hair comes back a different texture and color. My hair was dark brown and more wavy-straight and it looks to be coming back a lighter brown and it may be curly. I did have some gray hairs to start with, but you can really see some gray mixed in now. Oh, and when it starts to grow back, it’s very soft, like a newborns hair. About six weeks after my last chemo treatment my eyebrows started jumping ship like they were on the Titanic! So don’t be surprised, it’s normal.

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