therapy for Multiple Sclerosis
My name is Julieanne Olivier. I am a 30 year old woman, with Multiple Sclerosis. I was diagnosed officially 2 years ago with an exacerbation of optic neuritis. Avonex (Interferon-Beta 1a) was chosen as a path of treatment. I have been on Avonex for 2 years. I have done my own injections once a week for that time never missing a dose. Recently the exacerbations became frequent, ranging from a numb face to weakness in one or both legs. Compiled there were a total of 3 in 5 months; it seems the Avonex is no longer working appropriately. I have been told that if one interferon is not working as well as it should, that the others will falter as well, and with this in mind, I am taking a radical chance to keep from progressing. My doctor and I have chosen Cytoxan (cyclophosphamide) therapy.
Cytoxan is a chemo-therapy drug that works by suppressing the immune system; the hope is to slow down the auto drive in the immune system. The medicine is administered through an I.V drip typically along with a solu-medrol (steroid) pulse. This is done monthly and takes about 4 hours.
In a full confession I will say that when I heard the word chemo-therapy it made me sick to my stomach - I was terrified. What horrified me even more is the lack of information on Cytoxan treatment and MS. I have had solu-medrol pulse therapy before so it was the least of my worries (especially since it gives me that false energy for a day or two). No, this was going to be different and I could not find any information except for the medical definition of what Cytoxan was. This is what brought me here. I have always been a pro-active person even before MS; I was journalism major in college, and now I get to use my skills along with others to bring information to other MS patients.
I have exchanged fabulous emails with the owner/publisher of this site, and during the next 6 months, I plan to bring you monthly excerpts of Cytoxan treatment experience. Hopefully it will be a positive experience. I have been told my hair will not fall out and that I will not be sick to my stomach; the nurses’ tease this is chemo-light. Either way it goes it will be shared here, and at least somewhere there will be something on Cytoxan for MS.
The day before my first Cytoxan treatment was extremely stressful. I went to pick up Cerenex at the pharmacy to discover the prescription had not been filled. An hour before the pharmacy was to close. I was very distressed because Cerenex is suppose to keep you from being nauseated which can lead to vomiting. My regular pharmacist was out. I am a battle-axe when it comes to my health, so I got the person in charge who assured me the prescription would be there by morning. I had to accept that to be the best they could do at the moment and returned home.
Back at home things were very odd. Friends and family were calling to “comfort” me which, only seemed to stress me out more. I spoke to my mom who agreed to take me to treatment and had no problem with our extra stop in the morning. She even added breakfast as a stop. In this case, I am very fortunate to have a driver and have it be my mother. I learned after my first IV steroid that driving was probably not a good idea. Not that I had an accident. No, that wasn’t the case. It was that the road seemed a separate entity than myself in my automobile. There was a high that I felt for me distorted my judgment of distance. Judging distance is a necessity to driving. All patients react different to all the different medications. You may be a great driver after steroids. I was not. My mother knew this and has joined me as assistant manager of my illness. Her skills showed brightly that day.
As promised we had a light breakfast. The doctor had recommended a light meal with no grease. I picked up the prescription of Cerenex. It is recommended to take 1 tablet an hour before chemotherapy to prevent nausea. My mother and I went through a checklist: Cerenex, gallons of liquids, blanket, pillow, and a vomit bag. My mother is prepared that way. That last sentence brings up one major detail that I almost overlooked. Hydration. I cannot stress how important it is to be hydrated. The doctor and nurse(s) repeated this order over and over again. One of the dangerous side effects of Cytoxan treatment is bladder/urinary tract dysfunction. It is really crucial to stay hydrated and to evacuate when nature calls (no long road trips).
We arrived at the hospital promptly. Signed in and waited nervously. It wasn’t long before the nurse called me back into the outpatient IV room. An outpatient IV room is typically a room full of reclining chairs. I sat down in a chair. A nurse made me comfortable with a pillow, a blanket, and this particular hospital even has tiny televisions with headphones for each chair. I tried to relax as the nurse pulled out IV bag after IV bag to explain to me what was going to happen, particularly how they intended to dose each. I was surprised to discover that solu-medrol was to be dosed with saline first. This seemed to relax me a bit. Something I was familiar with that I had used before. The solu-medrol took its 45 minute dose time. As the bag began to empty I began to get butterflies in my stomach. The butterflies were new but the hyperactivity was not. It began to race through my mind. How was I going to sit there for 3 hours out and out hyper from the medrol. My silly concern dwindled as the nurse came towards me with the bag of Cytoxan. She looked right down at my white knuckles grasping the arms of the chair and said “Honey, its just chemo you’re going to live.” This amused me enough to release my grip from the poor arms of the chair. My mother and I looked at each other as the first few drips began their trip down the clear plastic tube to the threaded needle (a threaded needle is a small plastic tube the size of a needle that remains in your vein to dose your treatment) and into my vein. There was no strange sensation. Nothing felt any different.
For an hour nothing seemed to change I still had my energy buzz. Into the second hour, however, I became restless and sleepy. In the third hour I just became restless. I wanted nothing more than to go home and go to sleep. Fortunately a friend I had made during my last steroid treatment had shown up. Time seemed to fly by and soon the bag had emptied.
The nurse came to flush my veins then undo me. After 4 hours I was free. So far my only complaint at this point is the constant running to the ladies room every 10 minutes while hooked up to the IV. What goes in must come out but hydration is so important. I swore before we left if I had to “go” one more time they (the nurses) would probably give me a cookie for following orders. I made an appointment for 7 days time (per doctor instruction) for what is called a CBC. CBC is short for Complete Blood Count. CBC’s are used to monitor patients during chemotherapy to make sure the blood cells are functioning within range. With that appointment made finally I got to leave.
The car trip home started off well. It shifted with every gear though. At first I became intensely hungry. Then, I became really thirsty. Having liquids lead to another stop for the ladies room. Then all of the sudden on the 25 minute trip home I became exhausted. My mother was asking me for dinner (which I never refuse) and all I could mutter was “Please take me home.” She asked if I was going to be sick and I replied, “No it’s not that. I just feel really funny.” Actually it wasn’t really funny at all. The inward battle had begun between the solu-medrol and the cytoxan. Solu-medrol as I have referenced before gives me immense energy. Cytoxan however, was doing the exact opposite. I had not prepared for this at all. It seemed throughout the next 48 hours when all I wanted to do was sleep I was awake. Usually I like the awake, but for just having my first chemo treatment I really wanted to rest. As a person with MS I feel that resting properly really helps in my life with MS. If I don’t get enough sleep or interrupted sleep I seem to exacerbate more frequently. After the first Cytoxan treatment however I became extremely frustrated with the lack of rest I was able to get the following few days. I feel this affected me well after treatment. I have made an appointment with my doctor not only to follow up but to also discuss this issue. After hydration I would say make time to rest regardless. I find it difficult to rest while people are fawning over me. This is a personal issue that will be dealt with before next treatment. Learning how to communicate the need for rest. I am 4 CBC’s and weeks away from next treatment.
I am halfway through treatment, and I feel as if there should be some
small celebration for getting this far. Not much to report; there really
wasn’t much difference in treatment. The only thing that changed was my
anxiety the night before. It kept me awake which in turn was a blessing, in
disguise for I slept through the 4 hours of treatment, and having that nap
left me to a wonderful solumedrol high. I was hyper enough to go on a date.
This information did not make my parents nor my doctor happy, but sometimes
in dealing with MS, it is hard to always be paying attention. My energy
level seems to have improved enough to have taken on my volunteer position
for a 5-day convention, but I will confess, though, that that was probably a
bit much. I was fine for most of the week until on Labor Day, of all days, I
exacerbated with fatigue. Since I have been so busy and pushing myself so
hard, I have gone back to a disciplined cycle of rest, and Cytoxan has
stopped the series of relentless exacerbations I was having. Overall, I feel
better than I have in a while, which is why I seem to be doing too much- I
forget how serious chemotherapy (Cytoxan) really is, and that rest and
hydration are important. Must keep these things in check as treatment #4 of
6 is gaining on me. Nothing negative to report; I am hoping this is good for
me as it is beginning to feel. Till next treatment Namaste.
© Julieanne Olivier, 2003