Normally, this blog is dedicated to providing information that will improve animal health. Well, the next two posts will focus on humans and helping people with cancer. When I was diagnosed with double hit lymphoma (non-Hodgkin’s large B cell lymphoma and Burkitt’s lymphoma), the lack of information surprised me. So, this post will focus on what I experienced during the CODOX-M plus Rituxan with IVAC protocol (also known as the Modified McGrath protocol). The next post will address the delayed effects that occurred after the chemotherapy was over. I hope this helps all the patients and their care-givers get through this tough protocol. Please note, this is my experience and yours will likely vary. If you have questions or information to add, please comment. I want to do everything possible to help other people who are battling cancer. My prayer and best wishes are with you! As you walk this trail, I hope you are surrounded with love including that of animals – both at home and the hospital, they helped me enormously.
1) Hair Loss: After watching videos of women upset by shaving their heads prior to chemo, I decided not to shave my hair off. I let it fall out until it started to bother me and then my husband shaved off the remainder. My hair started falling out after the second part of the first A regimen. Every time I combed my hair, the brush was full. Although it was thin, a lot of hair hung in there until after the second cycle of the second A regimen. After a shower, the drain was covered. My cat saw it, hissed and ran out of the bathroom. He wouldn’t come into the shower again after seeing that scary monster. (I’ll cover hair re-growth in the next post.)
2) Bandana’s and Hats: After trying a variety of head coverings, I found that the bandana’s with an elastic cinch on the back worked the best for me. Baseball type hats rubbed my scalp, knit caps were too warm and regular scarves were hard to keep in place. I bought them from Tina’s Treasures located in the Virginia G. Piper Cancer Center. Although I hated being bald, there was one benefit. Strangers were really nice to me when I was out in public with a bandana. Too bad we don’t treat each other that way all the time!
3) Metallic Taste: After the first B regimen, I developed a horrible metallic taste that was unbearable. The nausea was excruciating. My husband and friends gave me all kinds of things to try. Black licorice, maple syrup, Williams-Sonoma Peppermint Bark and grapefruit juice worked the best. What’s interesting is that before chemo I didn’t really like any of those items except the Peppermint Bark. Be careful with grapefruit juice because it may interfere when your other medications. Ask your physician for specific instructions.
Thankfully, the metallic taste only lasted for two weeks. It was really bad but hang in there, it will go away.
4) Nausea: Nausea was my constant companion. It was unbearable after the first part of the A regimen and then got better after that. I’m not sure if it really got better or I just got used to it. I tried every anti-emetic known to human-kind without much success. The medicine kept me from vomiting and lessened the nausea, but did not take it away completely. According to the Mayo website, people who haven’t used much alcohol have more nausea than those who drink on a regular basis. I guess I should have partied more in college.
I also get motion sick. As if the intrathecals (in the spine chemo) weren’t bad enough, I would get sick when they wheeled me on the gurney to radiology for these treatments. Have the nurses get you meclizine if you suffer from motion sickness.
A word about medicine, I learned that you need to order ahead as the hospital pharmacy can get slammed (a highly medical term we professionals use). Particularly for pain and nausea medications, it is wise to plan ahead. I generally needed to give pharmacy a 45 minute lead time.
5) Mouth and Teeth: A common unwanted side effect of chemotherapy is dry mouth. Since teeth are designed to live in a moist environment, this causes a lot of dental problems. After the first part of the A regimen, my mouth went dry. Thanks to the advice of my dentist, Dr. Bartel at Carefree Dental, I avoided any long-term problems. He told me to use Biotene mouth wash to keep my mouth moist and also prescribed a toothpaste that contained fluoride. Please consult your dentist for help before starting chemotherapy – this is an area the oncology community may neglect.
6) Tumor Lysis or Necrosis Syndrome: During the second part of the first A regimen, I experienced tumor lysis syndrome. This syndrome is caused by the rapid death of the tumor cells. The good news is that chemotherapy medications are working. The bad news is that it can be life-threatening. I spiked a high fever, had difficultly breathing from pleural effusion and had horrible pain under my sternum. Thank goodness, the difficult breathing and high fever only lasted for 12 hours. Lying on a cooling blanket with an oxygen canula in your nose is no fun. The sternal pain lasted for a long time. I will address that next.
7) Sternal Pain: As I mentioned above, I developed severe pain under my sternum after experiencing tumor lysis syndrome. According to my physicians, esophagitis is common during the CODOX-M plus Rituxan and IVAC protocol. They treated me for it even though no ulcers were seen on endoscopy and the upper GI was normal. Unfortunately, the pain worsened. The pain medications did nothing. The only thing that helped was swallowing Miracle mouth wash. The viscous lidocaine in the mouth wash anesthetized my esophagus and numbed the pain. It truly was a miracle for me. The cause of this pain was never identified. It waxed and waned during the course of chemo and stopped when I finished.
Please note that Miracle Mouthwash is a general term for a mix of drugs. Each prescriber has a slightly different formula. For me, the formula from my oncologist filled at Walgreens worked better than the one I was given in the hospital. It also tasted much better! In case I did not give this enough emphasis, let me be clear – Miracle Mouthwash was a lifesaver in getting me through the treatment.
8) Reaction to Rituxan: I was one of the lucky ones who did not react to rituxan. However, let me thank my nurse Dan who on the graveyard shift had to oversee this infusion. He was ready for anything! I am forever indebted to him and the other nurses for their constant vigilance and care.
9) Neutropenia: The B regimen does a number on your bone marrow. After each B cycle, I was severely neutropenic which means no white blood cells to fight off infection. I followed all the neutropenic precautions recommended by my oncologist. Please take their advice seriously because contracting an infection while neutropenic is life-threatening. Early on, the medical staff told me that they can get patients through the chemo (please keep that in mind as it inspired me) but where they lose them is to infection.
10) Anemia: After both B regimens, I required multiple red blood cell transfusions. Even though I was cross-matched every time, my body started to react after a while. I think it was after the 10th unit, but my memory could be wrong. I went into rigors which means uncontrollable shivers. The first time, my nurse treated it right away so I only shivered for 15 minutes. The second time, it took 45 minutes for pharmacy to prepare the demoral. My teeth chattered so violently that I loosened a crown. Bummer!
11) Thrombocytopenia: Again after both B regimens, my platelets bottomed out and I required multiple transfusions to keep me from bleeding out. During this period, my skin had a strange mottled gray look. This is a good time to thank blood donors – you are truly sharing life with patients like me!
12) Post B round bonus hospitalization: According to the study I read, 100% of patients experienced neutropenia after the B regimen with many requiring hospital care. After both B rounds, I spiked a fever which landed me back in the hospital for 7 to 10 days. After the first time, I was really depressed because I thought I was going to have two weeks at home to recover. For me, it would have helped to know this ahead of time so I could prepare mentally.
13) Attitude: A positive attitude will make the Modified Magrath regimen a little more bearable. A lot of funny things happen in the hospital and at the oncologist’s office if you are open to it. Embrace humor whenever you can. When my hair fell out, my husband said, “I’m into bald chicks.” We had hospital “dates” which meant he pushed my IV pole down the hall to a window with a view of the mountains. One chemo patient in the infusion room (and I don’t recommend this but it was hilarious) told the nurse that the chemo pills made her sick to her stomach. So after two nights of staying up all night near the toilet, she decided to try something else. She threw the pill in the trash and poured herself a large scotch to achieve a medicinal effect. Try to count blessings, laugh when you can and be creative. It will help pass the time.
14) Chemo Brain: During the chemotherpy, my thought processes became dull. I had trouble remembering things and felt foggy all the time. In retrospect, I think this is a good thing because it helps you get through the protocol and forget the bad experience. Just be patient with yourself. Your brain function will return to normal with time.
15) Sleep: While in the hospital, I had difficulty sleeping because of all the interruptions. 10pm and 2am vitals followed by the 4am blood draw with another vitals check at 6am. It made me wonder if the hospitals were trying to make me feel better or worse? After awhile, I started to sleep in four hour increments. For months afterwards, I still woke up at 2 and 4 am. Hang in there and rest as much as you can. Your sleep habits will return to normal eventually.
16) Early Menopause: The chemotherapy knocked me into early menopause. I started experiencing hot flashes or personal “tropical vacations” as I like to call them during the second part of the first A regimen. Sometimes it was hard to tell the difference between a hot flash and a fever. I learned when I hit the cool down phase, I shivered from fevers but not with hot flashes. Take an oral temperature if in doubt.
17) Supplements, Vitamins and Other Neutraceuticals: My advise is to ask your oncologist about anything you consume. Some of these substances will interfere with your chemotherapy drugs and lessen their effect. Others may increase their effect or cause other organ damage when combined with chemotherapy drugs. I saw a patient in the chemo ward suffering with horrible kidney damage because they decided to undergo hypervitaminosis C therapy while on traditional chemotherapy. Please be careful!
18) Intrathecal Injections: The CODOX-M part of the protocol includes six intrathecal injections. For this procedure, the patient lies on their stomach and the radiologist uses fluoroscopy to insert a needle into the space around the spinal cord. After withdrawing a sample of spinal fluid, chemotherapy drugs are injected. After the procedure, the patient must lie flat on their back for four hours to allow the fluid to equilibrate. If the patient sits up too soon, horrible headaches ensure. The nurses and assistants roll the patient onto the gurney for transport and then into bed.
For some patients, this procedure is uncomfortable but not horrible. For me, it was an ordeal. Since my cancer was located in my abdomen, lying on my stomach caused a great deal of pain. When the radiologist inserted the needle, the pain was unbearable. I almost passed out. When the pain subsided, the nausea set in. I told my husband I didn’t think I could handle anymore treatment after that first injection (day one of four months of chemo). It was that bad!
To make a long story short, the next one was much better. The anesthesiologist pre-treated me with stronger drugs. The procedure was still painful, but nothing like that first one.
19) Problems With Medications: One of the interesting things I experienced were problems with how I took some medications. Diphenhydramine (Benadryl) was a problem for me. If the nurse gave it to me through an IV, the room started to spin and I felt sick for several hours. I had no problems with the pill form. If you feel funny after receiving any medication, talk to your nurse or doctor right away. They may be able to use a different form.
20) Nails: After the first B regimen, my nails developed a cloudy band above the cuticle that continued to grow in size until I finished chemo. I was lucky though as my nails stayed intact throughout chemo and recovery.
21) Perspective: About halfway through the ordeal, my world shrunk to three places, home, the hospital and the oncologist’s office. I began to wonder if this was it. Would I ever feel normal again? The answer is yes. While I was in chemotherapy, I was a cancer patient named Kris. I am now Kris, a person who had cancer. So hang in there and soon the entire ordeal will be in your rearview mirror.
The next post will cover the side effects after finishing the CODOX-M plus Rituxan and IVAC protocol.