The First Day Of Chemotherapy Treatment

 

My first infusion as part of my R-CHOP treatment happened on Wednesday, May 28, and it did not go well. There are four drugs that are part of the infusion. Rituxin, an immunotherapy drug, was the first. It’s administered slowly to see how the patient responds. I did not respond well. Part of that is related to disabilities from other diseases. If a nurse asks about breathing and pressure on my chest, I have to say yes, I have pressure on my chest. They stop the drug immediately and a team comes in to investigate the issue. I had to explain that pressure on my chest has been coming and going since 2018 and if I feel it today, I don’t know if it’s the drug or my “new normal.” They re-started the drug at slower rate. Then two hours later I began to shake uncontrollably. Far worse than shivering. It was endless muscle contractions all over my body and very frightening. The team showed up and a nurse practitioner took control, administering a number of drugs, including the narcotic, Demerol. I  was completely wrapped in hot blankets and there was also pain in my lower back. Gradually the shaking stopped and a while later the back pain went away. Finally they re-started the flow of Rituxin. This is how it went all day. The infusion of Rituxin was finally finished at 7pm, which left no time for the other drugs. I was in the hospital for almost 12 hours. I had to come back the next day for the other three drugs. That took about 4 hours. It was grueling but I felt OK. I had a big lunch and took a walk. Then the side effects started to kick in and this morning I was constipated and felt awful. No appetite.

When I last posted about R-CHOP I didn’t realize that the regimen requires daily doses of other drugs. I’m taking 4 drugs every day and will have to do a self-injection once during each 3 week cycle. That comes tomorrow. All of the drugs have their purposes and they all have their own side effects, often overlapping with each other. Hence the constipation, which I have taken care of.

Today I’ve already had two calls from the infusion team. They’re checking up on me and there is some chance that they may want me back. We’ll see. In any case, I like my doctors, I like the entire team, and I am so grateful for the nurse practitioner who stopped the shaking.  

R-CHOP

Yesterday was my first visit with my new lymphoma specialist. He told me that the standard of care treatment is wildly successful for people with B-cell non-Hodgkin’s lymphoma. About 85% of patients go into full remission. This treatment is called R-CHOP. After your first infusion you wait 21 days for the next infusion, for a total of six cycles, which means roughly 4 months. The doc told me that severe side effects are rare, the more common side effects being fatigue and maybe loss of appetite. Most patients do not even vomit. A port is not required, the infusions will be given intravenously. The treatment is personalized for the patient, taking into account age, weight, health, other illnesses, etc. This is a glitch for me due to other competing cancers. This new doc will confer with my prostate cancer oncologist and the surgeon who handled my mesothelioma. He wants to make sure that there are no conflicts that would put me in danger. That great thing is that all of these doctors know each other.

Years ago I asked another surgeon if I could move away from Boston and still get healthcare from another prestigious hospital. He said I could move, of course, but the network of doctors I have here would be difficult to duplicate. I believe this is true.

I anticipate that the chemo will start in early or mid-June. Three things have to happen before it starts. First is the conference of doctors. Second is a virtual meeting between me and the lymphoma team pharmacist. Third is an echocardiogram. The earliest date for the echo is May 27^th, but that may be moved up if there are any cancellations.  

I think I can power my way through this treatment. As I’ve said elsewhere, you should never tell yourself a bad story. Always tell yourself a good story. I feel better with a good story. No need to worry about things that you can’t control and may not happen anyway.   

 

Lymphoma Is The Winner!

My spleen endured some abuse back on April 18, when it was biopsied and four cores were extracted. It’s an easy procedure for the patient, especially when sedated. The only downside is that I spent 6 hours in the hospital from arrival to departure. The procedure took 40 minutes, but the check in protocol, preparation protocol, and recovery protocol all take time. While I was being discharged the nurse told me that test results would take a week or two. We went home and waited for the results.

The first to arrive was flow cytometry, then cytogenetics, then anatomic pathology. These are challenging to read for me, but I got a call on Friday saying that the overall diagnosis is B-cell non-Hodgkin’s lymphoma, most likely with diffuse large B-cell lymphoma. Some of the results were atypical, which is common for patients with a BAP-1 mutation. I was referred to the lymphoma center at MGB and I expect I’ll get a call on Monday to set up my first appointment. They’ll probably do a few more tests and then create a chemotherapy program. Blah. This is likely to consume at least 4 months of treatment, so I’ll miss out on summer fun. On the plus side, treatment may relieve the many symptoms that make me miserable every day.

In my book, which you can easily download (please do, and share it widely) from my web site, I mention that I have juggled 8 different types of cancer over the years. The number just increased to nine. Prostate cancer is now in a race with lymphoma and I’m pretty sure that those cancers cannot be treated at the same time. Then there is mesothelioma lurking in the back room, but under control at the moment. I have to think about building a good attitude for the coming months, but at the moment it looks like a battlefield.