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Bill Baird’s encounter with Hairy Cell Leukemia (HCL)

Written on May 22^nd, 2005 in Auburn , Alabama

Background

I am a 61-year-old white male, retired for three years as a college professor.  I have been married for 38 years, and have two sons who are married.  I have three grandsons.  I have what I would call a healthy lifestyle.  Since retirement I have ridden my bicycle across North Carolina three times over one-week periods.  I have also ridden across Florida twice, covering about 65 miles a day for one week.  I work out twice a week at a fitness center, running 2.5 miles on a treadmill and lifting a total of about 27,000 pounds on weight machines.  I am very active in my community with Habitat for Humanity and other volunteer projects – all requiring physical activity.  Until I was diagnosed with HCL, I had no known health problems, and had never even been hospitalized.  I do not smoke, and drink in moderation.  I am 68 inches tall and usually weigh about 150 pounds.

Diagnosis

Since I have O-negative blood type, I am in demand as a blood donor.  Based on a low hemoglobin when I donated blood on several recent occasions, I asked my family physician if he could see anything in his records that might explain my low hematocrit.  He noticed that I had also had a low platelet count for several previous visits over a period of 18 months.  So he recommended that I see a hematologist .  This I did on April 25^th.  This hematologist/oncologist took blood samples and decided that I needed a bone marrow biopsy.  He took this on the same day and sent it off for analysis.  On April 28^th I got the results – a clear diagnosis of Hairy Cell Leukemia (HCL).  He suggested that I enter the local hospital to begin the seven-day infusion treatment with Cladribine (2Cda) on Monday, May 9^th. 

Symptoms

Until my bone marrow biopsy I was relatively free of symptoms.  So my wife and I decided to drive about 400 miles to visit our son and daughter-in-law before I went into the hospital to start treatment.  During that four days I lost my appetite, developed pain in my abdomen (my spleen was swollen), got high fevers at night, and started coughing so badly that I had difficulty talking.  I was definitely ready to get started on treatment if it would help me get past these symptoms.  By Monday morning I coughed like someone with pneumonia.

Treatment

On Monday, May 9^th I checked into a private room at our local hospital.  Since I pointed out that I might have pneumonia, I was given chest X-rays, and the Cladribine infusion was delayed until about 4:30 p.m. that day.  Blood samples were taken before infusion and daily during the treatment.  The treatment consisted of  21.1 milliliters of 2Cda per hour.  Dose was 6.3 mg per 24 hours, based on my body weight of 153 pounds.  Everything went according to plan, and my response was typical of others we had read about on web sites.  I spent the first four days either in bed or walking my “tree” around the hospital corridors.  I felt fine except for the cough and a fever that cycled up to 103 at night.  I was given 650 mg of Tylenol  as needed to control the fever.  The Tylenol usually took about two hours to bring down the fever, followed by sweating.  After a while I got used to it. 

My medical team consisted of two oncologists and one infectious disease specialist (IDS).  They told me that HCL is rare but the treatment is “cookbook medicine”.  The hard part is diagnosis and controlling opportunistic infections while the immune system is suppressed.  Each morning a member of my medical team would make rounds and visit my room.  They seemed concerned about my cough, and kept asking if I could bring up something for them to look at.  But my cough “product” looked like clear spit.  And the chest X-rays showed only a tiny cloudy spot.  So we went on with the 2Cda infusion.  Blood cultures were negative.  I got more chest X-rays on the fifth day of infusion.  No change.

On the fifth night of treatment  my temperature varied from 95.8 to 103.5 degrees.  The IDS decided to install a second IV line in my other arm so that I could get antibiotics and anti-fungal medications.    Here is what I began taking in addition to 2Cda:

Clindamycin  (antibiotic)                           150 mg capsule            twice daily by mouth

Diflucan (anti-fungal)                                200 mg                         once a day by IV

Levaquin (antibiotic)                                500 mg                         once a day by IV

Vancomycin                                            1100 mg                       every 8 hours by IV

These were spaced throughout each 24 hour period over the final three days of 2Cda, and for four days after that.  I was told that I could go home as soon as I went 24 hours without a fever.

The IV ports in my arms were fed by separate pumps on a single “tree” with a five-wheel rolling base.  With an IV port in each arm I had to learn how to get out of bed to visit the bathroom, and navigate around my room without getting tangled in the lines.  I could no longer take walks around the hospital floor, and stayed in my small room.  My wife and the nurses made life better, but I was starting to get tired of the process.  I reminded myself constantly that I was going to do whatever it takes to get well again. 

Audio tapes and books were helpful.  I do not care much for television, and used it only in desperate times.  I had visitors.  They sat across the room and did not hug me or shake my hand.  I had a phone, and enjoyed taking calls from friends and my wife.  My wife was in my room for about half of the daytime hours.  She was extremely helpful and supportive with things like showers while I was hooked up to the IV line.  During showers I took care to cover the IV port with a vinyl glove from which the fingers had been cut so that it would fit over the port.

The IV port for the 2Cda lasted the entire seven days, and was removed at that point.  The other port failed twice and had to be moved to a different site.  In one case it clogged and could not be flushed.  In the second case it pulled out of the vein.  This allowed the saline with antibiotic to make a big “goose egg” under my skin before I noticed and shut off the pump.  The nurse came back and installed a new port in my other arm.  Fortunately, this one lasted until I was discharged.  Although the process of inserting the cannula (little plastic tube) into my vein was slightly painful, the worst part of changing ports was peeling off the wide tape that held the old one in place.  This felt like I was being skinned.  A cloth band-aid left on my arm too long caused a rash that felt like a bad sunburn over the spot where the adhesive held.  I still have that and treat it with Neosporin daily.

Since almost all of the IV bags were a dilute saline solution (salt), I constantly felt like I had just eaten a large bag of potato chips.  I drank LOTS of water.  My urine output was monitored, and never got low enough to cause concern.

Side Effects

After five days of 2Cda I began to notice the fever going up.  But I never got nauseated despite losing my appetite almost completely.  I forced myself to eat.  I drank a supplement with lots of protein, minerals and vitamins – known as Boost â – three times a day for a total of over 1000 calories from that source alone.  My meals contained no uncooked fruits or vegetables, no lettuce or garnish that could bring me a germ.

Post-treatment in hospital

I stayed for four days after the 2Cda infusion was complete.  This was to get the fever under control.   My medical team decided it was best to keep me in the hospital for this.  My wife and I are grateful now, since we realize that coming home would have almost certainly meant having to return to the hospital late at night via the Emergency Room.  There I would have been treated like all other ambulatory patients and told to wait while doctors treated gunshot wounds and heart attack victims.  My IDS told me that any infection during that time could become life threatening for me in hours.  So we are glad that I had nurses round the clock checking my vitals (temperature, blood pressure, pulse, oxygen uptake) and watching my IV line.  My wife could come home and rest.

For my entire stay at the hospital there was a sign on my door asking all who entered to wash their hands.  There was also an alcohol foam dispenser inside the door where all nurses doused their hands with this germ-killing agent.  Only one night nurse failed to wash her hands at the sink before tending to my IV port.  When she came to disconnect it, I specifically asked her to wash her hands.  She ignored me and proceeded to handle my port without gloves.  I reported her, and I think she was written up.  I tried to explain to her that I had too much at stake to risk infection that could be so easily prevented with proper hand washing.  I had heard that the IV port is the primary site of infection in situations like mine.  But I guess night nurses are not used to patients who are awake and willing to speak up for themselves.

Recovery at home

I came home on May 20^th after 12 days in the hospital.   I am taking oral versions of the same antibiotics and antifungal that I was taking by IV at the hospital.  No fever, but I still have night sweats that wet my pajamas, pillow and sheets.  Appetite is coming back.  No IV lines, so I can dance around and go where I please!  What a joy to get back into my own house and bed!  We are not yet taking food or visitors from the outside, but I take walks around the neighborhood as I get my strength back.  I feel stronger and better every day.  It feels good to feel good again!  I will see my IDS on May 24^th for the first time since I left the hospital.  I expect him to take blood samples and tell me how things look.  Maybe I can start going to public places again.

I have no information yet on my degree of remission.  I expect to find out for sure in six weeks when I have my next bone marrow biopsy.

Recommendations for others

Here are a few suggestions that may prove helpful to others who follow a similar path to mine.  Please remember that I am not a physician.  Only trained medical experts should provide the critical suggestions for your treatment and follow-up.  The best ones will invite you to get a second opinion, and maybe help you find it. 

1)      Pick a board-licensed oncologist to head your medical team.  This doctor will likely invite an IDS to monitor your treatment and recovery.  If you are not comfortable with your doctor, get one you can trust.  Their patient load should allow them time to visit you daily.

2)      Find out all you can about HCL.  We were able to locate plenty of documents from reliable medical sources through web sites like these:  a) Hairy Cell Leukemia Research Foundation at http://www.hairycellleukemia.org/;  b)  Leukemia and Lymphoma Society on HCL at http://www.leukemia-lymphoma.org/all_page?item_id=8507;  c)  American Cancer Society has links for HCL such as http://www.cancer.org/docroot/CRI/content/CRI_2_4_4X_Treatment_of_Hairy_Cell_Leukemia_HCL_62.asp?sitearea=.  These links are getting complicated so I suggest you pursue this with the help of a librarian or anyone with access to the web and a little time.
Ask lots of questions of your medical team.  You may need to keep a notepad handy beside the bed to jot down questions as you think of them.  My IDS did not linger in my room more than a minute or two unless I had specific questions, which he cheerfully answered until I got to the end of my list.

3)      Make sure that your treatment is administered under controlled conditions.  We were very glad that we were in a private room in a good hospital with very competent staff.  Many issues like avoiding uncooked fruits and vegetables while I was immune suppressed were easier once the hospital dietitian knew about my condition and sent proper meals to my room.  The room was cleaned every day.  My nurses were understanding and careful about cleanliness.  My wife could rest at home knowing that I was receiving proper care.

4)      Find a caregiver that you trust and ask them to assist you through this process.  My wife was critically important in my care and recovery.  She reminded visitors and friends about restrictions that often contradicted their instincts: “Bill can’t accept your hug now, but will appreciate it very much later.”  She helped me with one-handed showering while I was hooked up to the IV lines.  She took care of affairs at home that would have worried me if they had been left unattended.  She was my cheerleader and friend, and continues to boost my spirits by reminding me of all the things we will do together after this is over.

5)      Keep a positive attitude.  Some people use their religious faith while others meditate or listen to funny audiotapes.  Visitors should bring humor and positive attitudes, not pity and long faces into your room.

6)      Wash your hands often and insist that others do the same.  My normal immune system reached a point where it could not shield me from germs that it would have easily shrugged off before.  My medical team told us that washing our hands frequently was the most important thing we could do to insure an uncomplicated recovery.

7)      Drink lots of water.  Maybe the night sweats took a lot of fluid out of me.  I was constantly thirsty.  Water always went down easy, even when I had no appetite.  Avoid liquids that contain lots of acid, and of course don’t touch alcohol until your doctor gives you the OK.  My liver function altered a bit, perhaps from all the Tylenol I was taking for the fever.  They changed the order to aspirin, but by then the fever was gone.

8)      Resolve to do whatever it takes to get well.  Do not expect that your course of treatment and recovery will be smooth.  Each person responds in a unique way to this whole experience.  I had almost no side effects to the 2Cda chemotherapy.   I had few problems with recovery except for the fevers, sweats, and loss of appetite.  But I was ready to be much sicker for a longer time.  Life is a gift worth fighting for.  Be ready to fight if you have to.  

Good luck.  Contact me if you feel the need.  My home phone is 334-821-4448.  We live in the Central Time Zone.  My e-mail address is bairdwe@mindspring.com.  My wife’s name is Samera.  She is also willing to talk with caregivers about her experiences with this process.

Update #1:  May 24, 2005   I saw my oncologist and IDS today.  They drew blood and looked at results.  My oncologist was amazed and pleased that my white cell count and platelets have returned to normal range.  Even my lymphocytes are in normal range.  I am still anemic with hematocrit of 34.  No fever since I left the hospital.  Night sweats are fading.  My appetite is returning.  I can leave the house and go to public places.  I go back in two weeks for chest X-ray and more blood work.  Everything looks good.  Oncologist says that we “hit a home run.” 

Hematology record for Bill Baird [2Cda infusion began on May 9^th & ended on May 16^th]