After not finding enough articles on PCV, an acronym for Procarbazine, CCNU (Lomustine), and Vincristine, I decided to write one in case someone searches for it on Medium. PCV is the standard of care treatment for a malignant brain tumor called glioma. Neurologists in the USA and maybe internationally recommend this treatment after the diagnosis of the tumor is inoperable and found to be growing. It has been in use for over a decade. Documentation on PCV toxicity is available online, and I prefer to refrain from regurgitating that information here.
PCV impact on an individual differs widely based on age, genetics, immunity, and emotional condition. I mention emotional conditional here because I believe in the mind over matter philosophy. Through my treatment, I tried not to take any stress and worked hard to distract myself from what was happening to me and help manage my symptoms. The course is usually six cycles. Each cycle is forty-two days. The first cycle begins on day one with a dosage of Lomustine (The C in PCV). In the USA, the drug label may also say Gleostine. There are no drugs to take between days two and seven, but on day eight, you will have to go to the hospital for an infusion of Vincristine. The process will take an average of a couple of hours, depending on how busy the infusion center is. Some days, it took me about four hours. On day eight, you will also be given Procarbazine (Matulane) pills for day eight to day fifteen. Two tablets to take before you go to bed each night. Please listen to the instructions from your doctor and pharmacist for this medication, as I found this is the most unpredictable when it comes to side effects. It took me to the emergency room twice, although they sent me back within a few hours. There is a break between day sixteen and twenty-eight. On day twenty-nine, you must go to the hospital for the second round of Vincristine infusion. Labs will be done at the hospital when starting a cycle, day eight, day fifteen, day twenty-eight, and the last day of the cycle to ensure your blood counts are at a level where they can continue the remaining cycles.
My brain tumor diagnosis was Oligodendroglimo grade 2, and after my craniotomy, my oncologist recommended wait and watch approach. Scans every three months and any sign of tumor growth will result in a reevaluation of the strategy. It seemed logical, given I don’t have to take any chemotherapy medication and do radiation until we see evidence of the tumor growing. After two years, a slight flare started appearing in the corpus callosum region of the brain. This region was not too far from my tumor, and the surgeon could do a 95% resection, avoiding the risk of me losing my speech. I had an attack of speech aphasia, which drove me to the hospital emergency. I could not speak for about two to 3 minutes and was in a seizure-like state. While at the hospital, they did a CT scan and showed me the 5-cm tumor mass sitting on the left hemisphere frontal lobe, touching Broca’s brain area.
After consulting with three neuro-oncologists in the Washington-MD-VA area, I decided to go for radiation treatment with chemotherapy. I inquired about the risks and benefits of all the available options and weighed them against each other: chemotherapy alone, radiation alone, and PCV versus Temador(another chemo drug). Based on the most extended PCV study conducted, the chance of surviving for a longer time was a combination of radiation and chemotherapy. It also came with chemo meds and radiation toxicity to the brain, which can cause a mental decline in later years. It will still buy me more time with my family, which was sufficient to take this, not the ideal option but also not the worst option, which was dying in 5 to 10 years. I’m not afraid of dying because I think it will be like losing continuousness. Or, when you are under anesthesia, do you remember anything that happened to you? I know some people have claimed they had experienced things when they were dying, but I have never heard anybody saying anything wrong about what happened. So, death can’t be worse by that logic. It might be a pleasant experience. I think of it as crossing a bridge, going from one dimension to another, moving from one world to another. It is a bridge we all have to cross, and being sent to this world, we must travel.
The radiation did not feel like anything. Just 20 minutes every business day for six weeks. No side effects and no fatigue. After radiation treatment, there is a thirty-day period before the start of the chemotherapy. Chemo is where things got interesting.
The first cycle started on March 27, 2023, and went as smoothly as you can imagine. I worked through the whole cycle, took small naps, and took breaks as needed. I told myself work would keep me distracted and that I was undergoing chemo. I set expectations at work that I wouldn’t take on a heavy workload until my chemo was over. I’m grateful for the managers I had in the past three years and the company I worked for. I love what I do and have been in this company for many years. I’m embarrassed to put the numbers I have in here.
The second cycle started very late on June 8, 2023. It was supposed to begin on May 1, 2023, but due to neutropenia, it got delayed. My neutrophil levels came back after five weeks, which was unusually long because, typically, neutrophil levels return within 2 to three weeks after each cycle. We were unsure why they did not return sooner, so the doctor reduced the dose of Lomustine. Things were going as expected until the twelfth day of taking Procarbazine. I suddenly developed rashes on my arms, hands, and backside. It got progressively worse, and rashes started appearing all over my body. I also had some swelling in my hands and legs. My doctor’s office asked me to stop Procarbazine, and if I feel shortness of breath, I should go to the emergency room at the nearest hospital. I immediately went to the emergency after dropping the kids off at school. The emergency care doctor checked and told me I should go home and take Benadryl, categorizing it as a false positive or an anxiety attack. The rashes were gone after three days on Benadryl, an over-the-counter antihistamine. The swelling stayed for a few days, but it eventually disappeared. I continued the rest of my treatment as usual.
My third cycle started on August 18, 2023. This time, my doctor reduced the procarbazine dose to 50%. He also asked me to take an antihistamine like Benadryl when I start Procarbazine in this cycle. Since I did not like Benadryl’s side effects, I switched to Claritin. Yes, I did clear it with my doctor before switching. This cycle was harder on me even though I was on low Lomustine and Procarbazine. I kept my office hours and got even more done despite being fatigued most days. I even took a day or two off here and there. On day nine of the Procarbazine, I saw some rashes before taking the pills. I knew the pattern, so I did not take them, and the very next day, I called the doctor’s office and let them know. I continued taking Claritin until the rashes were gone.
I started the fourth cycle with only a week’s delay on October 6, 2023. That was because my blood number related to the liver was a bit high, and the doctor wanted to wait for another test before starting the next cycle. I did the blood work, and it did not show signs of Hepatitis B or C; my liver number had decreased by this time, but still not in the normal range. Given the last episode of Procarbazine, the doctor wanted me to take it till day 7, which I did. On day nine, the rashes were back; this time, they were way more itchy and spread out on the body. I took Claritin in the morning, but it got progressively worse, and then I took Benadryl, which did not seem to work. It was the weekend, and my doctor’s office was closed in the evening after feeling nauseous, body chills, and almost fainting. So, we were back at the ER. The same ER doctor recognized me, so I did not have to tell her my history since she knew it already. She checked my vitals, took EKG, and checked my temperature; guess what? They were all normal. They gave me Benadryl and sent me home.
Throughout Sunday, I took on Benadryl every 4 hours. Honestly, I was miserable and spent the whole day in bed or watching TV. The next day, I got an appointment with my oncologist and was at the hospital. Since I was severely dehydrated, I got infused with electrolytes. My oncologist also put me on Methylprednisolone, which is a potent steroid because of the swelling in my arms and legs. One of its side effects was insomnia, and I had it one night. I had to take it for six days. While on it, I felt alive and awake all the time. When I met the doctor on the same day as an infusion, I thought he was stopping Procarbazine, but he decided to stop treatment towards the tail end of the fourth cycle. He reasoned that I was already on a lower dose of Lomustine, and Vincristine was just complementary. On average, patients have only completed three cycles per the study. The study showed that patients who did three cycles or more received the full treatment benefit.
The oncologist mentioned that from now on, I will be on observation, and every three months, we will do MRIs for a couple of years. And if it remains stable, we can move to six months, and after five years, we can change the MRIs to every year. I couldn’t help but ask what happens in the worst-case scenario. His response was depending on the area of the brain, if it reoccurs, we could do either surgery if viable. If it is inoperable and not part of the brain that previously was radiated, we could try radiation. In case we can’t do radiation, we will try a different chemotherapy drug. He did not mention which one, might be Temodar (temozolomide). I did not ask, but maybe that’s a discussion for another day. I’m happy I don’t have to take PCV anymore, but if you are on this combo, I wish you all the luck. It is not easy, but hang in there. You got this!
