#6 CHEMO REGIMEN & SIDE EFFECTS

Welcome back to Faith Walk with Debbie!  I hope you have learned important information about cancer so far.  This time I will share the chemotherapy regimen chosen specifically for me and the side effects I experienced.

Before I share the regimen, I want to explain something.  I NEVER wanted to have any of the treatment they suggested.  However, because they explained there was great success of the breast cancer not returning if I did the treatment, I felt I personally really never had a choice.  I wanted to live.  I did not want to ever experience chemotherapy or radiation etc.  At times, I felt like a robot going through the motions and doing whatever they told me I had to do because I really did not feel I had a choice.

Also, for several months after diagnosis I just did not have the energy or drive to research my situation.  Reid Health had given me a binder with a lot of information about my treatment plan etc.  I remember glancing at it but because I felt I really did not have choices because of the success of the treatment plan they prescribed; I just could not bring myself to read this literature.  It made my situation too real.  I had a hard time really accepting that I was experiencing the “C” word.  Months later I opened the binder I was given and wished I had read some of the information in it earlier.  There was information about how I could have received meals or had transportation provided along with lots of details about the chemotherapy medicines. 

If you are going through cancer and just feel you cannot handle reading the literature.  I get it.  However, little by little I encourage you to. 

Back to the specific regimen chosen for me.  My local oncologist with the advice from the IU Thymus Guru chose a specific regimen that would work on both the breast and thymus cancer. There are many different types of Breast Cancer and Stages.  The type of breast cancer I was diagnosed with was HER2+, Estrogen+, and Progesterone + at Stage 1A.  The Thymoma Cancer was Stage 2 B.  I was prescribed a total of 16 chemotherapy treatments.  The first four were a very hard regimen every two weeks.  The next twelve were weekly. 

Each week of chemotherapy I experienced many medical appointments.  I had specific lab work done before each treatment.  This could not be done more than 72 hours before chemotherapy.  I met with the oncologist who reviewed the lab results and discussed any issues.  All of my chemotherapy treatments were administered on time except Phase 2 chemo #3 was postponed a week because my blood levels were too low. 

Because some of the chemotherapy can cause heart issues, I had been assigned a cardiologist when I sought treatment at Kettering Hospital in the beginning.  I was to have an EKG every three months to follow my progress and to determine my heart was performing normal.  After transferring my care back to Reid Cancer Center, I chose a local cardiologist.

Before treatment began, my husband and I had an agreement.  I had been told chemotherapy could be really tough.  So my goal in life at that time was to work 40 hours a week, go to all of my medical appointments, do my laundry and then rest.  My husband took over the cooking, cleaning and other household responsibilities.  I am so grateful for my husband’s attitude and willingness to step up to the challenge.  I could not have made it through without his help. 

I worked 40 hours every week during chemotherapy unless there was a medical procedure that prevented me from physically being able to work that number of hours.  Everyone could not believe I worked like that.  I did it with God’s help.  Also, I had discovered that if I used more than 12 weeks of FMLA leave in a year, I would lose my insurance.  Because I knew they planned thymoma surgery in December, I needed to save as much FMLA leave as possible.  So, I made myself work even when I did not feel like it.  I also was very grateful to my employer.  They allowed me to adjust my work hours to accommodate my medical schedule. 

Because I worked 40 hours a week, that meant I worked through my lunch break to make up time.  Therefore, I had to transport a lot of food to my office.  That was difficult during the time that I did not have much energy to walk let alone carry stuff.  It also was stressful trying to think ahead so I made sure I had plenty of food at work since I could not run to a restaurant.  Especially when my appetite was not normal, that also added the challenge to prepare for foods that might satisfy my unpredictable appetite.  I bought a plastic tote that I kept in my office under my desk.  In it, I filled with healthy snack foods.  That really helped having that to make sure I always had something to eat.  It also greatly helped when family members brought me a sandwich or something from a restaurant especially when I had a specific craving.

The first chemotherapy treatment started the last week of June 2020.  The first four chemotherapy treatments were a very hard regimen of Adriamycin & Cytoxan.  Most people who have those two drugs have a really hard time with severe side effects.  Everyone was amazed at how well I did.  I had a lot of people praying the side effects would not affect me bad.  God answered those prayers. 

I’m not saying the first four treatments were super easy but I did much better than typical.  Prior to the first treatment I was very apprehensive about how I would feel.  When they administered the chemotherapy, I felt different at different treatments even though they administered the same drugs.  I remember the first few, my chest felt like the medicine whooshed from my port into my body.  It was a creepy feeling.  My husband was with me the first time.  I asked him to help distract me from what I internally felt.  Other times, I felt head pressure.  The feelings were odd and a little scary at times.  It really helped when I had someone sitting in the room with me to talk to.  The distraction and comfort of someone else with me really helped.  During the first four treatments I had to take steroid pills before and after the treatment to help prevent side effects.  I was also given several pre-meds before the Adriamycin & Cytoxan to help prevent side effects.

The main side effects I had with the first four were nauseousness, head pressure, mouth sores, skin rash, weird appetite, fatigue, and hair loss.  I had been given multiple prescriptions for nauseousness and diarrhea.  I only used one nauseousness pill during my first four treatments.  I preferred using more natural methods of medical treatment instead of prescription medicine.

I regularly received treatment from an acupuncturist who also was an oncologist.  I felt very blessed that he had ample knowledge about what I went through.  His treatments definitely helped lessen the intensity of the side effects. 

I also used essential oils.  I cannot say that specific oils will work for other people but I will share what worked for me.  Ginger essential oil was used on my wrists to help prevent nauseousness.  It did not take all of the nauseousness away but it definitely helped.  I sucked on ginger drops on occasion too.  I thank the Lord; I managed the nauseousness and never threw up at all during my treatments. 

Peppermint essential oil helped alleviate head pressure.  In order to help prevent virus or bacterial infection as a result of lower blood levels, I used Thieves essential oil on my wrist, side of my neck, back of my neck and bottom of my feet once or twice a day.  I also used Oregano essential oil on the bottom of my feet.  Again, I want to stress I am not saying these will help other people, but they helped me.

Mouth sores were very painful.  It was caused from the chemotherapy killing off cells.  In doing so, it also killed off some good cells.  It caused the mouth to have white spots or look white all over inside.  I’m grateful I only had three horrible days of mouth pain.  To help prevent it, several times a day I gargled and washed my mouth out with a mixture of water, soda and salt.  I believe it helped.  There were other times it was sore but it was bearable. 

Skin rash was a very bad side effect I experienced.  I had rash on my scalp, chest, arms and upper back.  The oncologist and acupuncturist attempted to prescribe several types of creams with no success.  I was referred to a dermatologist.  She prescribed a different cream which helped to some degree.  The rash never totally went away until weeks after the first regimen was completed. 

Because I was nauseous, I had to be cautious with what I ate.  My appetite was definitely not normal.  I was encouraged to eat whatever sounded good in order to keep my weight maintained.  Ice cream became my friend.  Spicy type foods like pizza and Mexican did not agree with me.  What I found strange was the cravings I got.  All of a sudden, I felt like I could eat a Burger King Junior Whopper and strawberry shake.  So my husband rushed to get it because it was something I probably would be able to eat.  Another time I craved Arby’s roast beef sandwich.  It was kind of exciting when I did get a craving cause it was fun to eat instead of looking at food repulsively.

Fatigue was a normal part of the first four chemotherapies.  At work, I was allowed to lay down on a bean bag type bed in my office.  Most lunches I spent resting in order to make it through the day. Chemo was administered on Wednesdays purposefully so I would have the weekend to rest.  I usually felt more fatigued by Saturday and Sunday.

Hair loss was definitely a devastating side effect.  My hair was long, down the middle of my back.  I will share in the next post what I experienced when my hair fell out, cutting it off, saving my pony tail and purchasing head coverings and wigs.

After the first four chemotherapies, they did a PET scan to see if they had made progress with the Thymoma Cancer shrinking.  Originally it was 4.8 cm.  After the first four chemotherapies, it had shrunk to 1.9 cm.  Praise the Lord the harsh chemo was working!

The second series of chemotherapy was for twelve weeks.  The regimen was Taxol, Herceptin and Perjeta.  Taxol and Herceptin were weekly where Perjeta was every three weeks.  I had been told it would be easier than the first four treatments.  It was.  However, my very first treatment I had a reaction during treatment.  I sat in the recliner and began to chill.  My husband asked the nurse for another blanket.  Then I began to shake.  The nurse realized I had a reaction to one of the chemotherapy drugs.  So I was given more Benadryl to counteract the reaction.  It was scary.  After the fact, I was told it was not a bad reaction but I definitely reacted.  We were not sure which drug I reacted to.  I reacted during the administration of Herceptin but it was right after I had been given Perjeta.

What was even scarier was my reaction after I got home.  I was in the kitchen that evening and I remember almost passing out.  I then sat in a chair for a while and was very careful and rested the remainder of the evening.  Later I came to the conclusion that I had overdosed on Benadryl.  I had had pre-med of Benadryl plus the additional Benadryl when I reacted.  I believe the total amount was more than my body could handle.  I believe the Benadryl caused me to react and almost pass out that evening.

I was apprehensive during the next time chemotherapy was administered as well as the next time I received Perjeta.  They said it was very unlikely I would ever have another reaction like I had.  Yet it scared me to think of it happening again.

The main side effects I experienced during the second Phase of chemotherapy with the 12 treatments were diarrhea, eye sensitivity and nail damage.  The diarrhea was bad.  I tried to take a walk in my neighborhood and could not.  I got maybe a block away and knew I had to go to the bathroom and had difficulty making it home in time.  I was unable to travel anywhere very far unless I knew a restroom was near.  I remember several times being in Walmart and having to rush to the restroom.  It was a very frustrating time.  Because it was so bad, I chose to take the prescription Imodium.  It helped some but depending on how many pills I took, I felt bloated and experienced a lot of stomach pressure.  The acupuncturist really helped so that that the diarrhea was more controllable. 

I also experienced eye sensitivity.   The light was really annoying.  I even had several ocular migraines during that time.

The side effect that I didn’t realize I had at first was nail damage.  I typically wore finger nail polish.  Towards the middle to end of the second chemotherapy regimen, I noticed that my nails were sensitive when pushed on. 

I took my nail polish off and realized they looked purplish in color.  In time the end of my fingernails changed appearance.  It is kind of hard to describe.  Imagine the end of your fingernail coming loose in some places ¼” up under your nail.  It made the nails unstable.  As the loose part grew out, I cut it off.  However, I learned not to cut it off too far or it made it sorer.  Also, when the nail began to grow out the edges dug into my skin causing a lot of pain.  For several months, I was limited in opening jars or baggies.  I either could not grip well enough to open something or it hurt too bad.  Often, I had to ask my husband to open a container or bag for me.  As I’m preparing this post, it is four months after the last chemotherapy treatment.  My fingernails still are not healed or normal.  Thankfully they are not as painful as they were several months ago.

Chemotherapy varied in the length of time depending how soon the pharmacy got my meds prepared and how efficient the nurse was. Typically it took 2 1/2 to 3 1/2 hours. Therefore, I spent alot of time in chemo.

Overall, my blood levels were pretty good during the second chemotherapy regimen.  However, towards the last of the 12- week chemotherapy treatments, my blood levels went down.  Because my treatments were weekly, they were not able to give me Neulasta to help build the bone marrow.  However, they did give me a shot 24 hours after treatment for a few weeks.  It did help my blood levels increase.  However, a side effect of the shot was leg and hip pain.  At times it was very painful.  There was pain because the hips and legs have the most bone marrow.

During my treatments, I grew very close to some of chemotherapy nurses.  There were three main chemo nurses.  However, one of them typically took care of me if it she was working that day.  On my last day of chemotherapy, two of the nurses were working.  I asked if I could take a picture to remember them by. 

They eagerly agreed to.  The nurse on the left was the one that administered most of my chemotherapies.  As I went to leave that day, she surprised me with a cake to celebrate. 

That was such a surprise and blessing.  When the sixteen weeks of chemotherapy were done, I really missed my weekly visits with them.  Especially because of Covid and social distancing, these nurses were people I had regular contact with.  So it was emotionally difficult when I didn’t get to see them on a regular basis.

I am grateful that God answered prayer to help prevent the side effects from being horrible.  Repeatedly medical personnel said they could not believe that I worked 40 hours a week and responded as well as I did.  I have to admit that I think part of it was, that I CHOSE to keep going.  I forced myself to work when I did not feel like it.  One of the doctors said that because I kept active probably actually helped.  I definitely rested in the evenings when I got home but I felt kind of like I was a like a bull dog plowing my way through each day.  I forced myself to just do it.  Looking back now that I physically feel great, I really am not sure how I did it.  Regardless I’m grateful that God helped me through it.

I want to thank you for coming along on this journey.  I want to leave you with a scripture verse of encouragement.  Ephesians 3:20 (NLT) “Now all glory to God, who is able, through his mighty power at work within us, to accomplish infinitely more than we might ask or think.”

That is exactly what God did during my chemotherapy treatments.  Medical personnel were astonished at how I did not have horrible side effects from chemotherapy and still was able to work 40 hours a week.  I give God praise for that because many prayers were answered that made that struggling time easier.

I hope you continue on this journey with me.  Next time I will share how I felt when my hair started falling out, cutting my long hair off and the transition of wearing headcovers and wigs.