Multiple Sclerosis Walks and Bike-a-thons
July 3, 2008
I understand that money needs to be raised to finance research for Multiple Sclerosis: new meds, cause of MS, etc. But, I have PPMS (Primary Progressive Multiple Sclerosis) for which the National Multiple Sclerosis Society seems to finance very little research into any disease modifying drugs.
I know that only 15% of PwMS have PPMS, but if there are 400,000 people diagnosed with MS in America, that means 60,000 of those are diagnosed with PPMS. So for many years these 60,000 including myself were and are told that we don’t really matter. Putting a smile on your face with a positive attitude doesn’t really cut it. I mean within one year of symptoms appearing I was (and still am) walking with forearm crutches. In fact, a wheelchair was waiting for within two years. Luckily, my docs offered Cytoxan (still an experimental drug for treating PPMS). I took it, and it helped.
THERE IS NO APPROVED DISEASE MODIFYING DRUGS FOR PRIMARY PROGRESSIVE MULTIPLE SCLEROSIS. So where has all the money gone. To Relapsing Remitting Multiple Sclerosis of course. After all 340,000 people are affect by RRMS.
I participated in exactly one MS Walk. The first year my sister was diagnosed with MS. I rallied the family, learned how to fundraise, organized and orchestrated our team. That was when I could walk. I watched my sister steadily decline. Unsure whether she had RRMS or Secondary Progress (SPMS), docs put her on Copaxone. She did well for awhile.
The following year my other sister was diagnosed with RRMS. She had one brain MRI. She was lit up like a Christmas Tree. No lumbar puncture, no evoked potentials, no brainer-RRMS. She too was put on Copaxone. Meanwhile, I was trying to get diagnosed with something so that I could receive treatment.
See the dirty little secret is that along with no treatment for PPMS, it is very difficult to get the NMSS to speak about PPMS. After all, how many dmd (disease modifying drugs) does RRMS need?
So this brings me to MS Walks and Bike-a-thons. It’s great that so many people with MS can participate in theses events. There are so many cannot participate. We don’t need someone else to do it for us, that happens often enough as it is. We, PPMS’ers, need help with daily activities as it is.
Why doesn’t NMSS sponser fundraising events in which everyone can participate? As my husband says, “Having a Walk for people that can’t walk, is like having a drive-a-thon for those who cannot see.”
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.
Cytoxan
June 30, 2008
My treatment plan called for twelve months of chemo (Cytoxan). Then follow-up with CellCept. All in hopes of slowing disease progression and even improving. That was the plan. Chemo is something for which you need to be mentally prepared. Especially when you are not fighting to stay alive. Especially when treatment calls for monthly IV infusions for twelve months.
My first treatment went better than I expected. Of course, that was once my blood pressure and breathing returned to normal so I could begin the treatment. The nurses asked if I was nervous. I thought it was a no-brainer. Yes, I was nervous! This was CHEMO after all. But with hubby by my side I concentrated on my breathing until I was in the moment. Then I was ready for the infusion.
The process is quite lengthy. As usual, if you are a woman, a urine sample is necessary for a pregnancy test. Doesn’t seem to matter if you’re past menopause, everyone gets a little pee cup. Then you get an IV, or a line put into a vein. The nurses were great. After a few visits you relax a bit and learn that many, many, many people have problems with their veins, but these nurses find the right vein the first time. Good stuff. See, after awhile you too will be thankful for that kind of stuff-nurses who can put in an IV on the first try, no matter the state of your veins.
This brings me to the first little gem that chemo has taught me: Be thankful for the little things. Enough little things and they add to a big thing. Almost like if you take each moment as it comes-forget about past or future-you realize how wonderful, how precious it is. String enough of those together and your entire day is a series of wonderful moments.
Anyway, back to my first visit. I peed in a cup, I have an IV. Now it was time for liquids. First came a bag of Dextrose. Then bladder meds to be sure you don’t get bladder cancer. Then Zofran or some type of nausea prevention meds. Then the premium or high test or Cytoxan. All topped off with another bag of liquid-Dextrose. Interrupted only for a bit more bladder protection meds.
By the time-usually 5 hours or more-the infusion is over you roll out of the clinic feeling more bloated than a dead Blue Whale. You spend the next twelve to twenty-four hours fighting nausea and peeing. Then the next week trying to regain your strength and appetite. But, and here is where the mentally tough part comes in-you must keep in mind that you will feel better in the end. That this is a “have to” if you want to regain your life, start living your life again.
For me even though I had Zofran, I still was nauseous. Not having any experience with chemo before I thought this was a good experience, all things considered. Gem #2: Reality is what you make of it. This experience was not only tolerable but I thought a pretty good one.
I spent two weeks gaining my strength back. It took two full weeks for me to regain my strength. Then my appetite kicked in and I was ravenous. I would lose six pounds then gain it back as quick as I lost it. Hurrying to get life back to normal only for the fourth week to dawn.
The fourth week was busy with getting everything in order so that the following two weeks would go smoothly for my hubby and son. I was also busy drinking plenty of liquids and trying to slow my eating and keep it healthy.
All this just to spend another 5 hours in the infusion center and the circle continued. Gem #3: The more things change the more they stay the same. This is an old saying, but I found comfort in the consistency of this routine. I kept my mind focused on all the things I would be able to do with my family once the year was over. I kept in my routine of infusion, two weeks recovery, third week to enjoy, fourth week prepare for next round.
Atypical Multiple Sclerosis 