High Dose Cytoxan

Tuesday, May 11, 2010 3 Comments A+ a-

By the fall of 2004, I could no longer tie my shoes, or even put socks on by myself. I was unable to get down on the ground to play with my niece, I couldn’t walk long distances at all, I was fatigued all of the time, and just the idea of having to walk the flight of stairs to my office at work some days made me cry. Many other things we take for granted were difficult or impossible for me to manage on my own from using normal utensils to eat, to washing my hair, opening a bottle of water or just getting in and out of bed or the shower. I had to cut back my hours at work to just 20 hours a week and even that was difficult to maintain because of the fatigue and the pain.

There was a drug that my doctor suggested we try that would alleviate a majority of the pain; however, it was new so my insurance provider denied coverage for it. As the disease progressed, a multitude of medical tests indicated that the disease had also begun to scar the tissues of my lungs, decreasing their function.

I am not an individual who is easily brought to tears over difficult situations in my life. However, watching my life turn from that of an active 27 year old to feeling and functioning like I was in my 60’s or 70’s in less than an eight-month time frame was very difficult for me to handle. Especially when I knew there is no cure for what I have and that it can be fatal.

Then, a little light at the end of the tunnel.  

There was a study being conducted at Johns Hopkins that could possibly put my disease into remission. However, there were some drawbacks; the treatment was drastic, experimental, costly, and complications during the procedure itself could kill me.

What did I have to lose? I could let the disease take its toll on me, possibly disabling me or even ending my life or I could try this treatment. Yes, the treatment could kill me, but it could also put my disease into remission! Why not try? I’d rather, as they say, die trying than to sit idly by and let Scleroderma destroy my quality of life or worse.

At the time, this was a ‘study treatment’ and not commonly used, most insurances wouldn’t cover it. Again, I was lucky, as my doctors were able to present a compelling enough case to my insurance provider that they paid for the treatment. Thank goodness.  I think the final tally I saw was around $150k ... we paid less than $3k out of pocket.

I met with an oncologist who has worked with Dr. Wigley for other patients (I was patient #5 of Dr. Wigley's to try this) and we made plans to move forward with extreme high dose Cytoxan chemotherapy.  Completely obliterating my bone marrow, and thus my immune system, in order to force my body to remanufacture them.  As described by my oncologist, “The treatment re-programmed the immune system, wiping out the abnormal cells and allowing the stem cells to rebuild a new, disease-free immune system.” 

It seems like it all happened over night.  One day I was in the oncologist's office hearing the treatment plans, talking about diarrhea, vomiting, and that my hair WOULD fall out, the next I was signing release forms and getting more tests than I could have imagined done.

I made an appointment to chop off all my hair.  I wasn't upset that it would fall out, I just didn't want to deal with it falling out all over the place.  I was going to have enough going on without worrying about cleaning up hair too.  

Then on November 30, 2004 I had a Hickman Catheter placed in my chest so that doctors could administer IVs without continually having to stick me.  It was kind of interesting to walk around with IV tubing sticking out of a hole in your chest.  

The procedure was easy, I was in and out in no time and got to go home for one last night before the treatment started. 


I went home and decided I still had too much hair.  So, the after Hickman placement, and the night before I was to be at the hospital at 0600, my husband shaved my head.  It also gave me a little more of a feeling of control over the whole situation. I was able to dictate when and how I’d lose my hair!

December 1, 2004, I was admitted to the Johns Hopkins Kimmel Cancer Center where they pumped me full of fluids and gave me the Cytoxan once a day for four days.  

My first visitor showed up that evening looking like this ...

 Unbeknownst to me, his wife had shaved his head too.

All of the fluids they gave me made for hourly trips to the restroom, even at night. Needless to say, I didn’t sleep much. 

During the actual Cytoxan infusions I could feel a mild burning in my sinuses and a weird taste in my mouth, one that tasted like peppery metal. That’s the best description I can come up with. On that taste note, when the nurse would flush my catheter with the saline type solution they used – I could taste it! It tasted just like I was drinking salt water!! It made me laugh every single time.
I was very fortunate and experienced only mild nausea and no vomiting at all. I however did not have an appetite and the only real side effect of the chemo itself was chronic diarrhea. THAT was very unpleasant. I relate that experience to what it must be like to have hydrochloric acid exit your backside!  What a bonding experience to have to ask your husband to help you clean yourself up, 2 seconds after you JUST showered, because you crapped yourself ... on the way to the bathroom! 

Other than that, the chemo and hospital stay were very pleasant. During my stay any visitors to my room had to where masks and if I left my room, I wasn’t allowed to leave the ward and had to wear a mask myself. This was all because the chemo lowers your immune system, eventually killing it off completely, and you are more prone to infections and illness.

The chemotherapy part of the process was easy. 

I was able to go home on December 5th, 2004.

Even though I was discharged as an “inpatient” I was then turned over to the IPOP (In-patient/Out-patient) Center. I had to go there every morning for monitoring (weight checks, and blood tests), to receive antibiotic IVs, human growth factor IVs (to stimulate cell growth) and blood transfusions (as necessary) until my immune system returned. This daily schedule continued for 15 days. During this time while I had no immune system I was not allowed to be out in public at all. I could only travel from my home to the center and back and had to wear a mask while doing so.

This was the worst part of the treatment for me. I was exhausted!! I had no energy what so ever. I would get up in the morning; my husband would drive to the hospital. I would sleep on the drive; I would sleep all day at the hospital, I would sleep on the drive home and then sleep some more at home. 

The diarrhea continued at home for quite some time.  I was raw.  My husband, trying to be helpful, picked up some Preparation H Wipes thinking they would ease some of the discomfort.  The box says "cooling and soothing."  Let me tell you, cooling and soothing, they were NOT!  They felt like some had lit a fire on top of a fire to my already burning ass!  Running out of the bathroom trying to cool down the fire doesn't help either!  For an unwanted mental image ... picture a bald, chemo riddled, sick looking woman running (yes, running) out of the bathroom, huddled over, ass in the air trying to cool the fire.  Yes, THAT is an image you all needed!  LOL! 

I also experienced growing pains during this portion of the process as my bone marrow was rebuilding. My large leg bones and hips would ache.

I still had no appetite and when I was hungry, I wanted the weirdest things!  I pretty much only ate dill pickles, sharp cheese, my taco concoction, pretzels with Helluva Good French Onion dip, Popsicles and drank tons of Gatorade, water, and Carnation Instant Breakfast.

Two weeks to the day after my final dose of chemotherapy, the stubble I had on my head, DID fall out.  I had about ¼ of an inch of growth on my head by the time the chemo made it fall out. I found it entertaining when I could wipe my hand over my head and cause a bald spot!!

On December 20th, 2004, my white blood count had returned to a stable number.  Johns Hopkins released me from their care as my immune system had recovered enough so that it could function on its own.

A few days later I had the catheter removed from chest.  No anesthesia or sedation used.  I went in and the technician had me lay on the table and was getting ready to give me a local and I asked if she had to.  I was tired of shots and needles and procedures and the area around the tube didn't hurt.  She looked at me funny and said we could try without it.  She did a test tug on the tube, I told her it didn't hurt, so she proceeded to quickly yank the foot long tube out of my chest.  No pain.  She pulled so so fast, the end of the tube whacked the wall behind her!  She put a bandage over the hole and I went home. 

I have 2 small scars, one on my neck and one on my chest from the Hickman to serve as daily reminders of my chemo endeavor.  I really actually like them.   They don't let me forget, not that I could, how far I've come and what I've gone through to get here. 

I spent the next month or so home from work because I was still quite exhausted and needed a lot of sleep. Though my rheumatologist told me to expect to be out of work from 6 months to 1 year, I returned to work in February of 2005 on a part-time basis.


Write comments
May 11, 2010 at 3:59 PM delete

The pic of Jason brought tears to my eyes..what a man.

Also funny enough, I can always taste the saline when I have an IV. I kept mentioning it during my hyst surgery and the workup to it. EVERY tIME..its the weirdes thing isnt it??

May 11, 2010 at 11:18 PM delete

I kinda like him! ;-)

May 12, 2010 at 4:14 AM delete

I was hoping you'd do this post! And I admire how you take control where you can. I'm so fortunate it never hit my lungs. I toast your choice to go with the HiCy.

And yes - great pictures!