Right after Christmas we drove up to the Miami area to meet my new oncologist. This doctor was kind of a mentor to my Smilow Cancer Center oncologist in Hartford. Many other oncology/hematology physicians think he is on the forefront of the latest in lymphoma research and treatment. He focuses only on lymphoma. No other blood cancers. I have to say we were impressed with him and his team. And it was an entire team that we met with. We were told that I was the typical MCL patient in regards to gender and age and that there were only about 3600 people with this particular type of lymphoma. So, although we were previously told that not having an aggressive form of lymphoma was rare, this type of lymphoma (MCL) was often not aggressive and so, my situation was not all that unusual. So, having lymphoma is not too great, having this type usually isn't horrible. We shall see. I also learned I probably have a defective Sox 11 gene. I have other defective jeans but washing usually takes care of that. Again, a lack of Sox 11 expression was associated with an indolent subset and a favorable prognosis. If you understand any of that you are way ahead of me. I like the favorable prognosis part, however.
The above paragraphs were before my first chemo cycle, the following will be after that first cycle.
Well, I've gone through my first chemotherapy infusions. It was... not what I expected.
In Hartford there was a communal room where people were getting chemo and other treatments, about eight stations in the room. Each person may have been getting treatments for a different cancer, be in a different stage of their disease but there was a sense of community, an all-in-this-together feeling. In Miami (Coral Gables) people were in separate treatment rooms. Roomy and private but no sense of community. I may have some cycles up in Hartford in the future and be able to make a comparison.
In the week or so leading up to my first treatments I was not feeling well at all. My blood pressure was very low, I was very tired and, of course, my anxiety levels were creeping up. Not scared or real worried but mostly a kind of new situation, first time, unknown process kind of anxiety. Wondering about the steps involved and how I would handle the drugs and potential side effects.
In the waiting room before my first session I met a lung cancer patient who, if I remember correctly, was on his third treatment. He looked like he could run a marathon and had great things to say about the staff at the Sylvester/Lennar Center. He was extremely positive and wished me good luck and said all would go fine.
We were led to a private room that was open to the windows and a great view. The room had the usual computer and IV flow machines as well as a TV and comfortable chairs. For the patient and a companion. More family could have been accommodated in chairs just outside the room.
My chemotherapy infusion nurse (and all the others that I had over several days) was very positive, outgoing and very helpful in answering questions. She (they) believed in the process and had faith in positive results having seen so many. She also knew how to minimize side affects and told us how to how to avoid issues once we were home.
The most important part of this whole process is... there were snacks. At least that was what Carol was most concerned with. Lunch. They brought a box with sandwiches, drinks, cookies and more. The steroids in the meds do make you hungry. The nurses know this and food is part of the comfort they provide. We made a serious dent in them.
More than an hour before treatment starts you have blood drawn and then the the two chemo agents are custom made for the patient. Several IV medications are given before the actual chemo mostly to prevent adverse reactions. Rituximab is the drug that generally causes the first side affects and must be monitored while being infused. The rate of infusion is important, especially for the patient's first cycle. The drip rate is increased over time. As I was tolerating the infusion well the rate was slowly increased. The only noticeable effect on me was some facial flushing and scalp itch as the flow rate was increased. This went away before the infusion was over.
As a contrast, the second medication, bendamustine, goes in much quicker and has few infusion issues. This is not to say there are no side affects, just none associated with the infusion.
After we were done with Day 1, Cycle 1 we went to our hotel. Miami is about 115 miles from our home in Marathon so we rented a car and stayed at a hotel using Carol's business points. We had a very large, and surprisingly good, pizza for dinner in our room. The first significant side affect to all my drugs was to come later that evening. A result of all the steroids was absolutely no sleep. Zero. I wasn't uncomfortable. Didn't toss and turn. Just didn't sleep. Wasn't tired at all. As we used to say at Cytec when I worked the midnight shift, sleep is highly over-rated.
Day 2, Cycle 1 had us back at the clinic for my second infusion. The second day is just the bendamustine alone. It has to be 20-24 hours after the first dose but doesn't take long at all. I was a bit tired by then and the ride back to Marathon didn't allow a nap but I wasn't feeling too bad. We made a shopping stop with no problems.
Once were back in Marathon on Day 3 I could tell that I might have had nausea if I did not take the medications prescribed before I got the symptoms. Got ahead of the problem and so didn't have the problem. Very good advice from the nurses I had. By Day 6 I am no longer taking anti-nausea meds but I am taking the anti-viral and anti-bone pain meds. I do not have any pain, just preventing the possibility. The anti-virals are critical. I have a compromised immune system and a minor cold could become major or some weird, rare virus could attack me with very bad results. Very bad. As in brain turns to gelatin bad. Okay, that is extremely rare but the chances are not zero. I prefer zero.
So, I am still early in my first cycle. It's a 28 day cycle and changes can be expected through day 14 but nothing should be extreme or unmanageable. We will see how I feel as the days go by and then we start all over again as day 29 becomes Day 1, Cycle 2.
As I said earlier, the unknown causes the most worry. We are out of the realm of the unknown.
This was attached to my arm to give me an injection 27 hours after leaving the clinic. Flashed a light every 5 seconds. All night and day. #borg
