Chemotherapy for Multiple Sclerosis

A Guide For Those Who Might Be Fearful

I’m a worrier. Maybe even a touch neurotic. When I check-in for most physician office exams, they check my blood pressure. When they pump up the BP cuff and it tightens around my arm, I’d worry that they might keep tightening it so that it could squeeze my arm, severing it from my body. You’d think after seventy years and hundreds (perhaps thousands) of BP checks, this distorted fantasy would disappear. The good news is that I no longer think the intake nurse is going to remove my arm.

With the blood pressure measuring, they pressure and lightly clamp a cute little alligator-like gadget on the end of my finger to measure the oxygen saturation. But the accompanying monitoring of my oxygen saturation still causes me momentary concern. The little “pulse-ox” device gently clamped on my fingertip looks benign. In a few seconds, it measures the flow of blood in my finger. In reality, like blood pressure readings, it is a painless measurement of important information about my circulation.

I’ve probably read too many Steven King novels but I worry if some evil and sinister felon designed a pulse-ox device to physically eat off the end of my finger.

“I’m So-Sorry!” the nurse would say. What would I do then, as my severed finger continues to be “eaten” by the now animated plastic device?

My arm and my fingers are still attached after all these years. That doesn’t necessarily mean that I should have no worries. I’m a worrier and my imagination, as you can see, can get the best of me.

I’ve never felt comfortable with getting shots from the doctor or nurse. When I was prescribed chemotherapy for my multiple sclerosis, I worried. And no, they haven’t yet locked me away in an institution. Maybe something is wrong with the system. Perhaps they’re understaffed and haven’t been able to get to me?

When you hear the word “chemotherapy,” you might first think of cancer patients having lost their hair and being nauseated from their treatments. Fortunately, there are no side effects like that with the therapy for Multiple Sclerosis patients. In fact, the treatment turns out to be considerably easier than I first imagined. This article describes my experience so that others, particularly the worriers, can relax about the procedure.

The Lengthy Time It Takes To Get An MS Diagnosis

Multiple Sclerosis takes months, sometimes years, to diagnose. Many of us have had it for years and most family medicine physicians are not able to detect MS until it presents more noticeable symptoms. Possible symptoms can include numbness or weakness in one or more limbs, electric-shock sensations in the neck and occasional tremor. There may also be occasional vision problems like double or blurry vision. MS can cause fatigue, dizziness, tingling or pain in parts of your body and sexual, bowel or bladder challenges.

It usually takes a neurologist to put all the pieces together and run MRI tests to diagnosis Multiple Sclerosis. In my case, it took 4 physicians and three neurological specialists over 18 months to determine that I have MS. During that time of testing and consulting, it came to me that I have probably had MS most of my life. Twenty years ago I rationalized my hand tremors as Essential Tremor like the actress Catherine Hepburn apparently had. The naps I took in the afternoon I attributed to my type-A lifestyle and pattern of excessive career work. But when I began to not pick up my feet adequately when walking, that’s when my family medicine physician referred me to a team of neurologists.

Like most MS patients, I had may have initially had “relapsing-remitting” MS. This phase is characterized by periods of new symptoms or relapses that develop over days or weeks and they usually improve partially or completely. These relapses are followed by quiet periods of disease remission that can last months or even years. In my case, I went years without much interruption in my lifestyle other than needing to take naps in the afternoon.

About 60 to 70 percent of people with relapsing-remitting MS eventually develop a steady progression of symptoms. Sometimes there are periods of remission. This is the stage of MS is called “secondary-progressive.”The worsening of symptoms usually includes problems with mobility and gait. The rate of disease progression greatly varies among people with this form of MS.

Some people with MS experience a gradual onset and then a steady progression of signs and symptoms without any relapses. This is known as “primary-progressive” MS. This is my diagnosis.

This diagnosis is why my neurologist prescribed twice-yearly infusion treatments with Ocrevus (ocrelizumab). Every six months, I go to an infusion center and have the Ocrevus administered by way of IV infusion. I have had this three times and it is surprisingly easy. There is no pain or discomfort. It takes several hours so you may want to bring reading material.

9 a.m.

Because we live in metropolitan LA, we plan on an hour to get to the hospital. Fortunately, the Westwood Bowyer Oncology Center has adequate parking but the first time you are in their parking lot, you have to have your wits about you. That’s true of parking anywhere in LA.

After checking in with the receptionist, I’m called in to have my blood drawn for labs. They will run a gamut of laboratory tests to determine how I’m doing prior to the treatment. This blood draw doesn’t have any discomfort and takes only about two minutes.

10 a.m.

As I enter the treatment area, it looks elegant. It is as if I am ruler of a developed country and I’m receiving concierge medical treatment, reserved only for the rich and famous. The photo here is simply shot with my phone. It’s like being in a luxurious European spa.

10:30 a.m.

The friendly nurse (Kelly) gives me a helpful summary of how the procedure will run. She gets out the Vein Finder which is an ingenious device for finding the best vein for my IV. The infrared light of the VeinFinder is absorbed by the hemoglobin in the blood, visually showing a contrast with the surrounding arm tissue. Here, you can see the red patch of light revealing the vein chosen for the IV.

This is very Star-Trek and makes me feel as if I am decidedly far in the future of modern medicine. Because Kelly can see exactly where my veins are in my arm, she next attaches the intravenous apparatus to my arm. (see picture). Great news again: getting the IV input attached is also painless. I don’t know why I worried so much about the procedure.

To start, two drugs are given through the IV. Solumedrol (a steroid) and Benadryl (an anti-inflammatory agent). These medicines help prevent any reaction to the drugs that will be administered.

The Benadryl causes me to feel sleepy. Kelly informs me that the chair can crank back and I can nap if I’d like. She even gives me a couple of pillows and offers me some blankets.

You know how when we were kids, we’d sit in the back seat of a car when we went on vacation and asked when we will arrive? I still want to know how long the infusion procedure will take. (see IV device picture) The IV device answers that for you. It tells you what stage you are on in the procedure and shows you the speed of the flow. The IV gradually increases the flow every 20 minutes and goes from 80, 120, 160 and then 200 ml/hour. It is clear that this is a carefully calibrated procedure with a lot of medical science behind it.

Volunteers come by and offer drinks and snacks. Kelly informs me that my procedure will take about three hours. I’ve brought several magazines and I’m reading the New York Times and a few Kindle publications.

2:00 p.m.

When the procedure is complete, Kelly lets me know that we will be waiting for 30 minutes, just to check if I’m still doing well. As it happens, I am and I’m feeling that this whole procedure feels easy and not that big a deal.

The only part of the whole procedure that is unnerving is the removal of the tape from my arm that was holding on the IV tubing. Since I’m a guy and I happen to have some hair on the inside flat of my arm, it hurts when she pulls the tape off.

But there’s a simple solution. Pulling off the tape holding the IV on my arm is the only uncomfortable thing about the whole experience. But no big deal: there is a work around for the next time. The night before the treatment, I’ll just shave the hair off on the inside of my left arm. Nobody would ever notice it if I enter a swimsuit competition with a shaved inner arm. It would be worth it.

So that’s it. This form of chemotherapy is a painless procedure. I had no side-effects and it was administered in a spa-like atmosphere. All the nurses and volunteers are extremely friendly nurses and helpful. What I initially worried to be a frightening and uncomfortable experience was actually easy and relaxing.

I wouldn’t suggest you make reservations for chemotherapy for your next “staycation.” But if you could benefit from it, you have nothing to worry about. And coming from a neurotic like me, I hope you feel assured.

What’s more, this Ocrevus therapy works. It should keep my MS from progressing to a worse condition. Apart from becoming fatigued and taking a daily nap, I am grateful that my lifestyle is largely normal and predictable. I could work part time and go about most activities with which I’ve been involved through the years.

This is a good time in the history of medical science, even for ‘worriers.’

Exploring pathways which help feminism, social justice and personal fulfillment thrive. My contact links are on a non-Medium site at: https://siddons.us

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