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Northern Lights: Coping With A Weak Immune System

By: Nancy Shamanna; Published: July 12, 2012 @ 11:46 am | Comments Disabled

This past May, I was traveling on a flight from Calgary to Victoria, British Columbia, to attend a seminar in needle arts, which is a passion in my life.  I have been taking classes and doing projects in embroidery since 2001.

The flight was delayed. When we finally boarded, I and all the other passengers found that the aircraft had been switched from a jet plane to a Dash-8, a smaller propeller-type plane.  My seat assignment was still the same number, but I was now in a row by an emergency exit door.

The flight attendant came by and informed me and the person sitting next to me that we would be called upon to lift and throw the door out of the plane in the very unlikely case of an emergency.  I told her that I have a health problem that does not allow me to lift heavy items.

The flight attendant had me move to another seat.  I sat next to an older man who was very talkative and nice but who was coughing and sneezing during the entire flight.  “Oh no,” I thought to myself.  Did this mean that I would get a respiratory infection while in Victoria? Such things had happened to me in the past.

The next day, sure enough, I started to sneeze a lot. Drats!  I am getting better about avoiding people with colds, even to the point of turning away from them or stepping back, but airplanes just seem to concentrate germs.  I sneezed that day, but it didn’t develop into a cold.  I noticed that rhododendron shrubs were flowering in Victoria and thought that my sneezing was probably just an allergic reaction to pollen because in Calgary, with our long winters, we don’t have much exposure to pollen.

The normalcy of my immune system on that trip was very gratifying, since for the last few years I had suffered from a weak immune system.

Even before my myeloma diagnosis in the fall of 2009, I was getting really severe versions of the seasonal flu, which would last a week to ten days.  When the flu shots became popular, I took one every year, which did prevent those infections.  Still, I was prone to colds and sore throats more frequently than seemed normal.

After my myeloma diagnosis and the start of Velcade [1] (bortezomib) therapy, I became nervous about my immune system.  At the time of diagnosis, besides the high levels of monocloncal (M) protein and total protein in the blood, my red blood cell counts were below normal levels.  After I started Velcade therapy, the red blood cell levels and protein levels stabilized back to normal after a while, but then the white blood cells, which are key to fighting off infections, began to spike downwards, indicating a weakening immune system.

Every blood test I took while on Velcade was for evidence of a suppressed immune system. All of the blood counts were checked before each Velcade infusion.  If the counts were too low, Velcade could not be given until the counts returned to a normal level.

That fall, the H1N1 flu virus was circulating and became a public health scare.  People were lining up for hours to get their vaccinations. One of my daughters and I did that too, at a public health clinic.

My response that fall was to avoid crowds and to do a lot of outdoor walking for exercise, where I would be away from people.  I was too nervous to go to the gym or a swimming pool.  The dexamethasone [2] (Decadron) and the pain killers I was taking that fall also slowed me down, but I managed to get through the induction treatment without any major health issues.  At the end of that time, though, my platelet counts and white blood cell counts were all below the normal range.

I was confronted with a weak immune system again after my stem cell transplant. I had suddenly lost my immune system because my entire bone marrow was obliterated. In addition, the new immune system that I was building up based on my reinfused stem cells did not carry the memory of all the antibodies previously circulating in my blood system. I was like a newborn in that regard.

There is a medical system in place to help patients through this dangerous stage, since not only is the new blood devoid of antibodies, there may not even be enough of the new blood cells produced for a while.  Isolation in the hospital wards is the norm.  Hospital rooms for transplant patients are single rooms and do not allow in air circulation from other rooms in the hospital, in order to keep the atmosphere as pristine as possible.

I only stayed in the hospital for two nights after transplant before I was sent home. My vital signs were alright, and we only live a 15-minute drive from the cancer center. In addition, I think the doctors felt I would be well looked after at home.

I still had to report back to the transplant unit daily for blood tests, Neupogen (filgrastim) shots, and sometimes hydration.  Thus, I was in the hospital environment for several hours each week day.

At home, I had a large assortment of pills and meds to take every day.  I was still taking muscle relaxants and the occasional pain killer. Added to that were an antibiotic, an anti-fungal mouthwash to prevent thrush, and an anti-viral pill to deter shingles from setting up shop in my weak immune system.

The first few weeks after the stem cell transplant were a time of extreme caution. I had to use a sponge brush for awhile to brush my teeth because of worries that a regular toothbrush could damage the mucus in my mouth, which could let bacteria enter the bloodstream.

I didn’t water my cherished houseplants myself out of fear of getting fungal infections. Even my diet was restricted – no green salads, raw or unpasteurized food, or anything that might carry micro-organisms into the body.  No close contact with animals was recommended to me, too.  I just hibernated, far from the crowds.

So it was a relief to see the blood counts returning to a normal range as the stem cells ‘engrafted’ into the bone marrow and began to produce a new set of differentiated blood cells.  I received daily Neupogen injections after the stem cell transplant to boost my blood cell counts.  If the Neupogen injections had not been enough to boost my blood cell counts, plasma transfusions would have been available.  A very good friend of mine, a nurse who works in the plasma collection clinic in our city, assured me that she was collecting plasma cells meant just for me.  I didn’t need them actually, but her concern made me feel better about the whole unnerving process of a lost immune system.

Getting through the recovery period after my stem cells were re-infused into me was a worry to me.   How could I best get through this time without contracting some awful infection? I certainly didn’t want to have pneumonia, the H1N1 virus, shingles, or even the common cold at that time.

It did occur to me that I could help myself by exercising daily.  Apparently because exercise promotes good blood circulation, the immune system can function more efficiently.  I walked and walked, in all weathers, throughout the icy winter months using a walker at first because of my back injuries, and then with two ski poles, which have sharpened ends and make good walking sticks in the snow.

I felt a bit like the character Heidi in the children’s story written in 1880 by Charles Tritten.  Heidi went up to live in the Swiss Alps for fresh air and exercise to get over a childhood illness.  Of course, I wasn’t drinking unpasteurized goat’s milk, like she did, but I was getting the benefit of the same sort of lifestyle.  The mountain winds are always bracing in the winter!  However, on the upside, there were certainly no biting insects flying about or growing gardens tempting one to stop and smell the roses!

When visiting the cancer clinic for appointments during that time, I was asked to wear a mask over my nose and mouth to protect me from airborne pathogens (and for the protection of other patients too).  It was a time of disguises.  With a mask on my face, and a wig on my head, I was flying low beneath the radar of recognition by anyone really.

Slowly, my new immune system got stronger. I have since received all of my childhood vaccinations again. My bloodwork has been normal for more than a year now

I feel much more confident now that my immune system is functioning normally again, although I am still cautious about going out in large crowds, being on airplanes, and even shaking hands!  Perhaps the gesture of putting your palms together in a ‘Namaste’ greeting really does work for many of us!

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The quotation for this month is from Marcus Aurelius (121 – 180 BC), who wrote, "It is in your power to withdraw into yourself whenever you desire. Perfect tranquility within consists in the good ordering of the mind, - the realm of your own."

Nancy Shamanna is a multiple myeloma patient and a columnist at The Myeloma Beacon.

If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at 

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URL to article: https://myelomabeacon.org/headline/2012/07/12/northern-lights-coping-with-a-weak-immune-system/

URLs in this post:

[1] Velcade: https://myelomabeacon.org/resources/2008/10/15/velcade/

[2] dexamethasone: https://myelomabeacon.org/resources/2008/10/15/dexamethasone/

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