In June of 2001, at 38, I gave birth to a beautiful little boy while I was dealing with 3 teenage girls, 13, 16, and 17.  That should answer why anyone would feel fatigue.  It is amazing, how you can justify how you are feeling.  In January, 2002, I experienced a severe fever that came on faster than anything you can imagine (within 2 hours) and I was delirious, I told the girls to wrap me up and take care on my son, I thought I was gone.  All I could see was them through tunnel vision.  They got me to the hospital and met my husband.  The doctor immediately got me on antibiotics and fluids. I was there 5 days and thought all was well.  That was the last time, I can verify that my counts were anywhere near normal. 

 

By that fall, 2002, I started having extreme left chest pain into my back with my left arm going numb down to my little finger.  I went to the emergency room and cardiologist but could find nothing other than my heart would race at night while I slept.  By the summer, of 2004, I just accepted the extreme pain, the cardiologist told me I would just have to deal with it.  I asked when I would know if it was serious and he told me I would know.  At times the pain would double me over.  I was also experiencing more migraines and I thought an on going left ear infection.  I was just trying to deal with it myself until we were on our boating vacation and the pain was more than I would deal with so I went to my family doctor for what I thought was an ear ache, and he pointed out that on top of a bad case of psoriasis, from the top of my head to the tip of my toes, I had numerous bruising.  He ordered a blood test, and that is when we discovered that my platelets were down to 50 and my white count was high.  My family doctor first suggested getting a platelet transfusion.  He thought I had a virus that attacks the platelets, but thank goodness, his assistant, who was a friend, suggested a second opinion. 

 

A month later in August, 2004, I went to the oncologist and he thought the same thing and said that young women like me sometimes get this virus.  He said he couldn't feel my spleen, which was good. But, to be safe he would do a bone marrow biopsy.  He teased my husband, telling him at the time of the biopsy,  that if he made it quick and painless, would my husband who is a car dealer, give him 50% off a car.  We all smiled.  But 45 minutes later and three tries, very painful, mind you!  He still could not get any fluid out of my bone marrow.  A few days later, the results were back from the Mayo Clinic in Rochester , MN and I had 80% Hair Cell Leukemia.  The oncologist sent me to a doctor at the Mayo in Rochester for a second opinion. 

 

There we discovered that not only was the cancer 80%, my spleen which neither of the oncologists could feel, was the size of my liver!  All of organs apparently are introverted (tipped up and back).  I knew that my uterus was from pregnancies but didn't know that the rest were.  That explains why the racing heart at night, my spleen was cutting off the circulation (my opinion).  By the time, I had 2-CdA, in October, 2004, my platelets were down to 30%.  I believe it is a miracle that I found out that I had cancer or I would have just died of a hemorrhage taking care of my then 3 year old son.  

 

The treatment wiped me out.  By the end of the week of treatment, I started having shooting pains through out my chest and abdomen.  Apparently, this can be a side affect of the chemo.  The nerves were just spastic.  Nothing curbed the pain.  It would last for 15-20 minutes.  That continued for approximately, 6 weeks and gradually, calmed down as time went by.   Also, since the chemo, I have what I call flinching where my whole body just jumps like I'm startled.  I can only guess that the 2C-CdA has affected my nervous system.   We waited 3 months to do the biopsy to see how well the chemo worked.  I was down to .01%!!!  But, I still wasn't feeling back to normal. 

 

By August of 2005, I had my first chest pain episode, like I use to have prior to the chemo.  But my counts had remained stable other than my white count which had never rebounded it hangs around 2.5.  By December of 2005, the pain was starting to be more frequent but the oncologist didn't think it could be the Hairy Cell because remission should last more than 1 year.  By February, 2006, I was at the emergency room again with the extreme chest pain.  The emergency room doctor couldn't find anything but encouraged me not to give up.  My local oncologist was frustrated and sent me back to the Mayo Clinic doctor in Rochester , MN .  He sent me through numerous cardiac test, gastric, and finally a bone marrow biopsy and you guessed it, my Leukemia was back to 20% in just over a year.  The Mayo Clinic doctor says that my chest pain is not typical for Hairy Cell, but I did read that one other person thought it felt like he had broken ribs.  So, we decided to try and aggressive method.  I had 2CDa for a week with Rituxin and repeated it one month later. 

 

In July, we did a bone marrow and there was no evidence of the Hairy Cells.  I've been feeling much better, but once again just this September, 2006, I had an episode with the bend over chest pain.  It has subsided and I'm just praying it will stay away.  I was just at the Mayo, at the end of November, 2006 for a check-up.  We just checked my blood counts which have stayed stable including the abnormal low white count.  We discussed trying the Rituxin on a regular 6 month basis, but my doctor felt that it would lower my chances; by the cancer getting use to it and not being as effective.  We are now just waiting until my symptoms are unbearable again and will discuss treatment. 

 

I'm anxious to see if I qualify for the trial with BL-22.  I'm going to suggest it to my doctor when I go for a visit in March. 

 

If anyone would like to discuss their Hairy Cell, please write. I'm curious to see if others with a short relapse have had a successful remission after the second treatment. I need more time to get my son through college.

 

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