Tuesday, October 26, 2010

A Brief Update

I am feeling a bit draggy as I write this, so reader beware.

I had my second treatment under my new treatment plan on the 21st and ran into a bit of a glitch.  My visit with my doctor went well.  I explained a few of the side effects I had after my first treatment which consisted of an itchy, facial rash and constipation (ugh!).  She seemed pleased that I was manifesting some symptoms as this was an indication to her that the drugs were working.

She told me a funny little story about a woman who was in a trial that my doctor was involved in some years ago for one of the drugs I am taking.  The woman had a very nasty, fast growing breast cancer that was not responding to the drugs of the day.  Fortunately, she responded well to this chemo; however, one day she came to the doctor's office in a wheel chair.  My doctor panicked, thinking this doesn't bode well for the study.  She asked the woman why she was in the wheel chair. The woman told her that the soles of her feet were sore, so rather than walk she decided to just get in a wheel chair.  The doctor was concerned that this side effect would prevent the woman from continuing in the trial.  When she told the woman how important it was that she notify her of the side effects, the woman stated that she didn't think this was a problem... especially since she was finally responding to a treatment, and she had no intention of stopping!

The drugs I am taking cause, among other things, painful feet (primarily in the balls of the feet).  Foot and hand syndrome as it is called, can cause the hands and feet to become red, swollen, painful and blistered.  Oh joy.  So far, the only thing I have noticed is an increase in the neuropathy in my feet. They have also become very sensitive to uneven shoe-soles and seams in socks, and it is very uncomfortable to walk barefoot.

After my meeting with the doctor, Thierry and I went to wait for my blood test results and treatment.  About 11:00 we were informed that my white count was low which could prevent my receiving treatment.  Another blood test was taken - this time from my arm rather than from my port.  The test results were vastly better and I subsequently was treated.  We finally left the infusion center at 4:30 pm - some 8.5 hours after we had arrived! 

Since my white count was low, my treatment plan has changed - at least for this week.  I also found out that one drug I am given - Zometa - which builds bone and has been shown to be very effective in treating bone metastases - can only be administered once a month.  I am now receiving treatment every three weeks, so I will have to arrange to have this infusion done on an off week.  Not a real problem, just didn't realize this until my infusion nurse informed me.

So, I am learning how to adapt to the new treatment.  I find that the day after I feel a bit nauseous.  This is something that really is not treatable with anti-nausea medication. Many of the anti-nausea medications which I took in the past made me dizzy and sleepy.  It is something I can deal with and when really necessary, take a few puffs of a joint (yes, a marijuana cigarette). This not only relieves nausea but helps my appetite and calms me. Often right after treatment I become restless and suffer what could be described as restless leg syndrome, only it affects me all over.  By Sunday afternoon I begin to crash and on Monday I don't feel like doing anything other than staying in bed - but I won't let myself succumb to that - totally.

I have also noticed that my esophagus is becoming sensitive - especially right after treatment. By that I mean I feel it when I drink something hot.  I am not sure which drug is causing this, so am not sure what to do about it. I take my pills with food, rather than after I eat, as it seems to help me digest them better.  My tastes are beginning to change - again, and my appetite has dwindled. 

Regarding the pills, I was told by the social worker that my insurer did say they would pay for the drug under the medical (chemo) portion of my plan. The problem is they have no mechanism in place to distribute a drug that does not go through a pharmacy plan.  In essence, there is no way to bill for the shipping and handling.  This is all great, except I still don't know when, how or where I will get my drugs.

I was hesitant to write this blog as I felt it would be a downer, but then, this is what some of my days are like.  Since my treatment on Thursday, I made two trips to the doctor with dad, we had company for dinner and actually had a good time with friends watching the Phillies lose, made dinner at mom'n dad's on Sunday, went to the gym, and went to a concert last night.  Today I had a client meeting which was the kick off of a new project and tonight we have our book club.

Hey, it's been a good week.

No comments: