Infusion #2 Complete And Some Good News

 

I did not have a lot of happy things to say in my last blog post, but there is now some good news to report. First, I noticed in the middle of last week that I was feeling pretty good. The best way to summarize it without getting into the weeds is to say that I felt better than I did before the first treatment started. It’s a huge win. Blood tests between infusions #1 and #2 indicated positive trends, but last week I really felt it and took advantage of it with some fun social events and a trip to Gloucester for a late breakfast at the Beauport Hotel. The Beauport has a spectacular deck overlooking the harbor. The only thing between that deck and the water (which is crystal clear) is a sandy beach. The cool fog burned off as we enjoyed an excellent meal with a friend who was able to join us at a moment’s notice.

 

Infusion day goes like this. The first thing I do on arrival is get some blood drawn and have vital signs checked. The test results show up about 30 minutes later. Next I see a doctor or nurse practitioner and review everything that’s been happening. They ask a lot of questions and they review the blood tests. Yesterday’s tests showed improvement in everything measured. The doc turned around the computer screen around and said, “You see this? This indicates cancer in your blood a month ago. It’s way over the threshold. Now look at where you’re at today. There is virtually no detectable cancer in your blood. This treatment is working very well for you.” We talked about a few other things and then he sent me to another room for the infusion. Another big win!

 

My first infusion did not go well. My body reacted strongly to the immunotherapy drug called Rituxan. Part of that has to do with the many cancer cells that are destroyed by Rituxan almost immediately. These cells release cytokines that can cause inflammation and other potential problems, such as the rigors that I experienced. Yesterday was different. I did a lot of pre-medication with antihistamines, prednisone, and cortisone. The combination of these drugs and the fact that there were far fewer cancer cells to destroy lead to infusion #2 going smoothly with no problems. Yet another big win! It was a long day, but I had a comfortable recliner next to a window with a great view of the Charles River basin.

 

At the moment I do not feel great, probably because of the massive doses of the pre-medication drugs. But I do have enough energy to move around and do normal things and my appetite is still intact. The post infusion crash will start in a day or a few days and I’ll be miserable, but maybe not as miserable as after the first infusion. I went into the second infusion stronger than the first. And finally, there are couple of other good things that happened. My weight loss stabilized and it appears that I might be gaining weight back. I also started to go back to the gym and exercise the atrophied muscles in my legs and parts of my upper body. I don’t think I’ve re-built anything yet, but those muscles are re-activated. The effort leaves me knackered but only for the rest of the day.

 

I think that without treatment the lymphoma would have killed in maybe 6 months. It dawned on me that it might be time to die, treatment or no treatment. Now I see that things are turning around and I have a fighting chance. I still have a lot of hurdles, but for now I’ll take the wins.      

You Won't Know Unless You Try

About two weeks after the first infusion on June 11th I started to feel better. Note that "feeling better" is not the same as "feeling great," but my appetite had improved and I was eating a lot. I felt so good that I decided to go out for a short bike ride on my e-bike. From the minute I rolled down the street I could feel my overall weakness. I decided to keep going. I rode at the highest power setting but it wasn't just leg strength. My problem was all of the muscles needed to stay in position on a bicycle. Arms forward, bent at the waist, chin up. It all requires muscles. I suffered through the five mile ride and stopped a couple of times. I couldn't wait to get home, and when I did I was so exhausted that I left all of my bike stuff laying around the garage (I never do that, I'm super organized) and went inside to sit down. What a relief. I thought a couple of hours of recuperation was all I needed, but that didn't work. The next two days felt like a setback to the days directly after the infusion. I lost my appetite and I was super fatigued. On Friday I tried to trim my beard, which requires standing at the bathroom sink, and I just couldn't stand up long enough. I tried three times and then finally succeeded with my fourth effort. By Saturday my appetite was back and I felt more energetic. I went out for an easy one mile walk. Today I am feeling that walk in my legs. I hope to rally later in the day for another walk.

In February of 2024 I wrote about getting boxed in by overlapping problems. When things go wrong and you're unable to execute activities that keep you on the path to your best possible health outcome, your box shrinks. Conversely, the more things you can do, the bigger your box gets. My box is real tight right now, so I pushed the envelope by cycling, a passion for me, and overdid it. It's always been this way for me. If I don't push I don't know what my box size could be and I may be lingering in a tight box (and off the path to best outcome) unnecessarily. It's trial and error. 

Things are disappointing right now. I may not be able to rebuild or even maintain what little strength I have until after the R-CHOP treatment is completed in September. From there it will be a very long road to get back to where I was a year ago.  

Follow Up Between Infusions

 

Yesterday, June 9^th, I had a meeting with an NP who works on the lymphoma team that’s treating me. First up was a blood draw and then the meeting. We looked at the blood test results and they were all quite good. After just one infusion, everything is moving in the right direction. That means that the drugs are working. Great news! It’s now thirteen days after that infusion and I feel a lot better. My appetite has returned and I’m eating a lot. Of course many of the long term side effects from the R-CHOP infusion are still with me, and same for the daily maintenance drugs. Chasing them is tricky because there is a not yet a pattern to predict what’s coming next. That should improve after the next infusion, and certainly the third infusion.

In my last post I mentioned the uncontrollable shaking caused by the immunotherapy drug, Rituxin. The NP said that this is a fairly common response for the first dose and it may not happen again, or at least not as severely. I’ll also pre-medicate before the next dose. I don’t understand the science behind this yet so I’ll have to take her word for it. This next dose is also expected to go slowly, but at least leave enough time for the other drugs on the same day. If there are no problems they’ll speed up administration of the Rituxin on the remaining infusions.

So it’s weird. You can feel a little better because you’ve already knocked back some of the symptoms of the disease before the therapy started (and I have/had a lot of symptoms). You feel this mostly at the end of the infusion cycle, after the worst impact of the drugs (when you’re on the couch and feeling totally awful). But you know that all of the remaining infusions will grind you down. It will be a challenging summer. The final infusion is scheduled for September 15^th, then the long period of recovery begins.

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.  

Moments Of Beauty

 

On a recent Friday my wife and I went to Brigham & Women’s Hospital for a follow up visit with my doc at the pulmonary clinic. Many of the patients are older and not always in great shape. While I was in line to check in at the waiting room, an older fellow eased his way in, moving slowly. Thin, casually dressed, good hat. He looked at me and I said, “Good morning, how are you today?” He smiled and we had a short conversation. He told me why he was there and I was amazed that that man is still alive. I said, “Well, it's not over, is it?” He replied, “I’ll never give up.” I was called in first and as I was leaving the waiting room he said, with a great smile, “Good luck to you buddy.” I said, “You too man.” I’ve noticed that guys like us know each other without knowing each other. B&W is a busy hospital. The halls are crowded with people, and then you see a guy and you know. There is eye contact, a nod or a word. It is such a wonderful moment. Good will between strangers, acknowledgement, a soul bump. I hope they feel it too.

As we left the hospital and navigated our way through the underground garage, we heard a man singing. Sabine recognized the melody and started to whistle. They harmonized their way through the song. Music is the universal language.