While this is the first time I have had radiation therapy to treat the cancer it isn’t the first time I have been treated with chemotherapy; however, this is the first time I have taken chemotherapy in a capsule form at home just before I go to bed. Tonight, I will finish cycle two of the treatment regimen.
It was interesting when the process for each cycle was explained to me. After all, you would think doing two cycles of the same chemotherapy regimen would be the same; but they’re not. And there were some unique experiences with the first cycle but not the second one.
In my case the chemotherapy Revlimid (lenalidomide) capsule is administered for 21 consecutive days along with a specific schedule of Rituxan. I also had regular blood tests and doctors visits during each cycle.
I have to admit that I got excited when I saw the number of pills at the bottom of that bottle dwindling during the first cycle. And I’m really excited now that I am down to the last capsule tonight when I will finish the second cycle. It’s time to break down the details of each cycle.
On Thursday, 2/28/13, I started the day by taking Dexamethasone with breakfast and then drove to the cancer center where I got blood tests and my first dose of Rituxan. I also had to take the Dexamethasone the day after I got the Rituxan. Since the Revlimid cycle runs for 21 consecutive days, and I began my chemotherapy cycle on Thursday so Thursday became the day I got routine blood tests and ultimately the two additional Rituxan treatments (3/7, and 3/14) that were part of this cycle. Along with each Rituxan treatment came the same Dexamethasone schedule and the normal pre-medications for the Rituxan (Tylenol, Benadryl & Zantac).
As the first week got started I was very fatigued and didn’t feel like doing anything except lying around and resting. I literally couldn’t do anything except nap in my chair. I also had to learn how to manage my bowel movements because I was either constipated or had bulky large stools to contend with. It took some time to determine when to add a laxative to the Metamucil and stool softener I was already taking so I could keep things moving like they should. I would get very bloated and miserable until the laxative worked. The other thing that was difficult to adjust to was feeling tipsy when I would get up and down. Even walking on carpet felt like my feet were unstable as the fibers moved. And getting in and out of the shower was a challenge because as my feet hit that wet floor in the shower it felt like I was slipping.
My first doctors appointment with Dr. Reyes was on 3/14 to check in and see how I was doing. During that appointment I pointed out the little dots that had appeared on both my left and right legs calf muscles. After very carefully looking them over, and discussing how I had been sitting in my recliner in an attempt to rest, it was determined that I had petechiae. At first we considered stopping my treatment for one week, but then we decided that I could continue the last week of treatments with me paying close attention to those spots. I made some adjustments to the way I was sitting and the spots disappeared in a couple of days.
I also had to talk to Dr. Reyes about the two seizures I had on Friday, 3/8, at 4:10 p.m. and 11:10 p.m. I was convinced that they happened because I couldn’t sleep well the night before the Rituxan treatments, and the subsequent two days that I took the Dexamethasone. When I explained this to Dr. Reyes he prescribed Ativan for me to use during the periods of time I was on the Dexamethasone. Using the Ativan I didn’t have any additional seizures.
Time for a break!
After completing the 21 day cycle I didn’t receive any more treatments for one week. I did feel better and gradually got some of my strength back. But the week off didn’t give me a total break from the action! My left eye got red on one-half of my eyeball and I also had some pain right above it. Another doctors appointment with my Optometrist and a quick eye examination resulted in a diagnosis of Episcleritis. All I had to do was use eye drops on a regular basis and it healed up without any other complications. I knew if I didn’t get a note from my Optometrist stating exactly what was going on before my next appointment with Dr. Reyes I would have to do so before I could move forward with my treatments. Better to stay ahead of things when you can!
The major difference between cycle one and cycle two of my Revlimid treatments was the fact that I only got one Rituxan treatment on the first day of the 21 day cycle. It required the Dexamethasone and pre-medications I described earlier. And, by using the Ativan, I didn’t have any problem sleeping, and I didn’t have any additional seizures.
Along with those little chemotherapy capsules came a reminder of something I had experienced in the past that I really wish I didn’t have to endure again. But it wasn’t up to me to decide whether or not I would be the person to experience all of this (cancer and Epilepsy), I am just the person that has to maintain a positive outlook and pray for good outcomes (I would appreciate your prayers, too).
Before all of this started, my Neurologist had helped me navigate the process to get my Epilepsy totally controlled. This problem first occurred in 2007, when I was given a dose of Ifosomide chemotherapy. I had finally made it seizure free from 12/21/2010 until Saturday, 10/27/2012, at 8:30 p.m. when things took a turn for the worse.
Since stress and the lack of sleep are both major contributors to seizures, and I had been experiencing both of them, I have to attribute the new seizure and subsequent seizures, to one or both of these contributing factors. That said, I had to add some additional entries to my Seizure Diary:
- Saturday, 10/27/2012, at 8:30 p.m.
- Monday, 1/21/2013, at 9:30 p.m.
- Friday, 3/8/2013, at 4:10 p.m.
- Friday, 3/8/2013, at 11:10 p.m.
The thing that catches my eye from this information is the fact that they all occurred late in the day when I was real tired from the day. It would also be safe to say my stress level is probably on the high side at that time of day.
In September, 2012, I had PET-CT scans, a MRI, evaluation for surgery to obtain a biopsy, the actual CT scan guided biopsy procedure, consultation with a radiation oncologist to find out about the possibility of using radiation therapy, and finally seeing a new doctor who specializes in lymphoma.
Needless to say, I was overwhelmed and a bit stressed out from all of this. Add to all of this the fact that before I could get in to see Dr. Reyes (11/21/2012) I started having severe lower back pain on my left side caused by a tumor growing on my Psoas muscle. This had also kept me from sleeping for a while before I finally broke down and asked for some pain medication to control it. The pain was severe enough that I had to use Hydrocodone to manage it. I also had to stop my exercise routine (the way I blow off stress and relax) because of the pain.
While in the midst of cycle two I had a routine doctors appointment with my Neurologist to follow-up on how things were going. During that appointment I explained everything I had going on and the type of seizures I had been dealing with. I learned they were Simple Partial seizures. We discussed increasing one of my anti-seizure medications which I was very nervous about while I am in the midst of the chemotherapy regimen. Then we talked about increasing the dose I am taking of my anti-anxiety medication to help take the edge off things. I was comfortable doing that over a period of two weeks so that’s the approach we agreed to take.
My concern about doing anything with any of my medications right now is the way they drag me down. I have to call it fatigue because it doesn’t ever seem to go totally away like being tired would after some rest. Rest doesn’t help with the fatigue I have to deal with.