CellCept
July 12, 2008
Currently, I am migrating from Cytoxan-chemo-to CellCept. Yes, cellcept is usually used for transplant patients, but it is an immunosuppressant; therefore, helpful in multiple sclerosis. I am taking cellcept as maintenance therapy following my course of chemo.
Usually you start at 250mg (one pill) and after months, yes months this is not an exaggeration, you end at 2000mg. This means eight, EIGHT,8 pills a day. Of course, that is in addition to the multitude of other symptom meds you already take.
But it works. Yep, thats right it works. For how long, I don’t know but I’ll take it. And I’m happy to have something that works. Even though it means even more blood work. After all the Cytoxan infusions, mere blood work is a joy to undergo.
I am only on the first pill. I increased to two pills a day, but my white blood cells plummeted so I had to drop back to one pill a day. Looks like this could take awhile.
Having ms, atypical ms, primary progress ms is like waltzing or a good polish polka. You take a few steps forward, spin, a few backwards but never end up where you begin. If it is done right it is fun. Not that ms is fun, but life is really what you make it. There are no guarantees. You happiness is all about being in the moment, moment by moment. With that in mind, no matter where you are, or what you are going through, life can be good.
Hospitalization
July 11, 2008
So, there I was in the hospital. I landed there after several episodes of severe vertigo, slurred speech, incoordination, trouble walking (like my legs no longer communicated with my brain), extreme fatigue. Hubby brought me into the ER of my local hospital.
When the triage nurse brought me in to get the particulars of my case it was clear something was wrong. I could understand the nurse’s questions but took awhile to find the words, then slurred as I answered. Immediately, I was given a room in the ER. Docs came in, ordered heart monitor, oxygen sensor on my finger. You know the routine. Once the docs found out there was a family history of heart problems (I was 37 years old at the time-only a few years younger than my dad’s first heart attack), a nitro pill was stuck under my tongue.
What a picture: me laying in a hospital bed with wires from my chest and fingers connected to beeping machines on the wall, blood pressure cuff automatically taking readings every few minutes, hubby and son (one on each side of the bed) holding my hands. I think they were holding my hand out of worry themselves more than me. I knew something was seriously wrong before this point, I knew the moment I “shut down” (see previous post:Back to the beginning). This was just the beginning of the rest of my life, just not in the way you normally think of it.
After my heart proved strong and healthy (knew it wasn’t my heart-it felt deeper than that-a permanent change). Docs decided to keep me overnight for observation. Something didn’t add up to them. Not a stroke as I seemed to recover almost completely.
The next morning the attending pcp went over the plan. I was to have an MRI and/or CT scan, follow up with the attending neurologist and then discharged. I’ll call the neurologist Dr. Headupmyarse. I didn’t think of him like this at first but by the end of six months Headupmyarse is the nicest name I can think of.
Without even seeing or talking to me, Dr. Headupmyarse ordered only an MRI without constrast. I had only a brain MRI. I say only because I continue to have brain, c-spine, t-spine, and lumbar MRIs. Anyway, this was my first foray into MRIs. I hate tight spaces to begin with. Yes, I did squeeze the panic bulb. Several times. But I got through it and so did the techs.
Several hours late Dr. Headupmyarse came in to exam me. He slowly took down my story, painfully slow, but hey that’s a good thing, right. Then he examined me. Follow the finger upon which I noticed and informed him that I was experiencing double vision. Then came the pin test. Basically, the doc bends an ordinary safety pin and pokes you like you’re a human pin cushion. My right side in general felt the poke but it felt dull, not sharp. My right leg from the knee down felt nothing. I mean NOTHING! I watched the pin go in, felt nothing, saw look on hubby and son. Wow! That’s weird and not in a good way. Dr. Headupmyarse didn’t really seem to show anything. The test continued. He took the end of his metal handled reflex hammer and ran it up the soles of my feet. NOTHING! No response, felt nothing.
My son, whose favorite past time was trying to tickle my feet without getting kicked in the process. Kicking was an involuntary response when my feet were tickled. My son pushed past Dr. Headupmyarse and tried unsuccessfully to tickle me. He looked from me to his dad as my hubby explained to the doc how ticklish my feet used to be. Again no response from Dr. Headupmyarse. Finally, he went to exam my MRI.
Good news! My MRI was clear except for one small white spot which was nothing to worry about. So what was wrong? Well, Dr. Headupmyarse decided and the way he explained it seem to make sense to us that it was probably seizures or TIAs. TIAs are small strokes that leave no permanent damage, but can lead to a massive stroke. His treatment plan called for me to go home and on Monday (it was currently Sunday) his office would call with an appointment for a TEE (trans-esophageal echocardiogram) which would rule out TIAs. No EEG because several days before this hospitalization I had an EEG which, you guessed it, was normal- No signs of any seizure activity.
I went home. My hubby, my son, and I drove home in silence. We figured it had to be TIAs becasue the EEG was normal. And yes, I did go home and research TIAs and TEE on the internet. Bad move, but I needed to because that was all I could do until the next day. TIAs certainly were a permanent change, but after reading about them I didn’t really think I fit the description completely. Although later I met a doc who told me sometimes diseases don’t read the textbooks and act differently or Atypically-sound familiar.
Cytoxan 2
July 1, 2008
Well the first two months of a twelve month treatment with Cytoxan were unremarkable or so I thought. After the second treatment, I became extremely dizzy. Vertigo is a symptom I struggle with and was a presenting symptom. For several years I struggled to keep my world still. Now, I take the moment as it comes. I realize that vertigo is part of my life. For right now I cannot do anything about it so I live with it.
Turns out the Zofran (nausea meds) given during the Cytoxan infusion causes dizziness. Great! We increased the Meclizine hoping to get the vertigo under control while changing the nausea meds. The vertigo I dealt with is fully disabling. I mean make my way to the couch and sit. If I got up to move it felt like I was walking through an amusement park fun house that spins. I flew off my feet, crashed into walls, fell to the floor. This didn’t really help that nauseous feeling.
We substituted Compazine for Zofran because it was a different class of meds whose side effects didn’t include dizzy. Interestingly, Zofran stops the stomach from producing an enzyme that induces vomiting. Why dizziness is a side-effect, I do not know. Just interesting how Zofran works in your system.
Compazine; however, works in the brain. It stops the messages from your stomach that says, “Hey, some strange substance in our system! Quick, vomit! Get rid of this!” Again, no dizziness. Good stuff. Well, by now you know what’s coming. Other side-effects. Also gem #4: When you deal with chemo, or really any hard core meds then it really is about tolerating the side-effects. I don’t think at this point there is ONE med that doesn’t have some kind of side-effect.
Compazine put me to sleep. I mean sslleeepppp! I was barely able to make it to my car so hubby could drive me home. That third month, the first time I took Compazine, the sleep was not restful. As I hit a REM cycle, horrible dreams and images woke me. Not like a regular nightmare, where you sit upright in your bed breathing heavy, WIDE AWAKE, glad you’re awake. I woke up only to realize it was a dream then off to sleep again. The nausea was better. The dizziness wasn’t quite as bad, but still not good. I was able to move around my house without flying into walls.
The fourth month was even worse. Not only was I unable to stay awake at all, still plagued by horrible dreams and nightmares, but I felt like my skin was crawling. I laid in bed wishing I could take off my skin, just for a moment. And the dizziness, yes still there. Seems I went from the frying pan to the fire as they say. Of course, this was only for the four days or so following the infusion.
The fix to this situation. As it turns out the bladder med they give you during the infusion (once before the bag of Cytoxan and once after-see Cytoxan post) causes dizziness too! In addition, the side-effects from Compazine was not normal. So my docs and I decided to discontinue the bladder meds. Although the official “literature” cites bladder cancer as a possible development with Cytoxan infusions, no one had ever actually developed it at this clinic. And the docs at this clinic had twenty-five years of experience with Cytoxan. Good enough for me. Remember from above it is all about tolerating side-effects. I took my chances (SPOILER ALERT: I did not develop bladder cancer).
The nausea was a bit trickier. Most of the nausea medicine when dealing with Cytoxan cause dizziness. Compazine was bascially in a class by itself. My treatment became Decadron (steroids) and Ativan (anit-anxiety). Ativan is used in the short-term for suppressing the central nervous system. Which is what I needed for the few days following the Cytoxan infusion. Decadron is used in the short-term to Decadron is also used in the short-term treatment of nausea caused by chemotherapy. How it does this is not fully understood.
I certainly didn’t fully understand how they would work. So the fifth month was nerve-racking until about four days later when I began to feel better. Yes, I vomitted my brains out, spent days and nights praying to the proverbial porcelain god. but I felt better afterwards. I felt better even when I was vomitting. And the best part: the vertigo stayed under control.
From treatment five through ten I took Decadron (pill form) during the infusion and at home. I also took Ativan at home. My routine was this: Get up at 5:30 am on the day of the infusion (a Friday). Get son and hubby up at 6:00 am. Have coffee – two cups. Get son breakfast. Get dressed. Grab a coffee and breakfast to go. Leave the house by 7:00 am. Drop son off at school. Hubby and I would drive the 1 1/2 hour to clinic. Register. Pick out chair in infusion center. Pee in cup. Get IV. One bag fluid for about an hour (after bout 1/2 hour take six Decadrons). Bag of Cytoxan for about an hour. Vomit. Another bag of fluid for about an hour. Vomit a few times. Done in only three hours. Take Ativan. Walk back to car and drive (hubby drove) the 1 1/2 hour back home stopping a few times to vomit. Be sick for about four days. Then take two weeks to recover. One week to feel better. One week to prepare for it all over again.
Atypical Multiple Sclerosis 