I've been among the missing for a while. My computer had a virus, I've been really busy with the garden and life in general. In addition, I started a regimen of daily Aromasin tablets combined with a monthly IV of Zometa. Aromasin is an aromatase inhibitor like Tamoxifen and attempts to thwart cancer cells from being able to get nutrients from the body and hopefully the cells will die.
Zometa is an alondronate. It prevents bone loss and also seems to be able to kill cancer cells which have metastasized to the bone. Three days after my first treatment, I experienced severe fatigue. While I wasn't sure if it was the quilt retreat which I had attended over the weekend, I did notice that it was in the top five side effect listed on the information sheet. The first day, I slept for 10 hours. The next day I didn't feel much better.
I called my oncologist's office. He was on vacation but I asked when did the fatigue commonly hit, and how long would I expect it to last. According to the fact sheet, it caused a loss of red blood cells which would explain my fatigue.
Much to my chagrin, the nurses responded "It doesn't cause fatigue." Well, hmmm. Why is it that it listed it on the common side effects then? I went on line to see what I could find. Over and over it said that it often caused fatigue which was sometimes severe in the first couple of treatments and that I should let my oncologist know. So...the next day I called back and asked that it be put into my chart that I was experiencing debilitating fatigue. I'm not a person to stay in bed all day and that's all I wanted to do. I had to force myself to get up and about.
Later that day, I got a call back from the doctor's assistant. Again, she said that the oncology nurses said that it didn't cause fatigue and that "I should get up as it was only going to make me feel worse if I lazed around in bed all day." (!!!!!) Well, great, just great. Once again, I have fallen prey to the arrogance of this particular office. This is the same office which insisted that I didn't need 1 1/2" long port needles and begrudgingly special ordered them for me...then were very suprised when the 1 1/2" needs were inserted and "had no extra sticking out..." Wow. I really did need them.....now why would I make a fuss about asking for something I didn't need when I had been getting my port flushed and infused for over 8 years with an 1 1/2" needle? Did I really like having a heavier gauge needle (thicker needle) inserted into my chest?
I'm not happy with this. But this is what I have to work with here. The James Cancer Center's doctors kept me sitting with a drape on on a table 5 hours after my appointment time twice. I'm not going to drive 1 1/2 hours to be treated that way. I'm hoping to get some resolution with my oncologist when I get to talk to him next.
The next bombshell hit just a few days later. I had been given a 14 day supply of Aromasin ("given" is a misnomer as it cost me $164 for the 14 pills) to use until my mail-order supply came in. I waited. I used up all of the 14 pills. I started taking my Arimidex again until it would come in. I finally called my insurance's mail order pharmacy. They were suprised as I was supposed to get a call to verify that I still wanted the pills as they had a high co-pay. I asked how much. $900 for a 3 month supply. I said well, I guess I have to agree. What else can I do? Their answer? Ask the doctor to prescribe a less expensive drug.
Well, yah.... right....Aromasin and Zometa are nearing the end of the arsenal for me. They are drugs of last resort. What ELSE do they want my oncologist to order? I suppose a 22 to the forehead might be a better thing as far as the insurance company is concerned.
Two weeks later and I'm feeling better. I'm a little less tired, but I still get tired in the evenings...something new for me. At least I can get up and do something. I'm a little concerned as one of the side effects of Zometa is the loss of tooth enamel. One lady has complained that she has lost teeth from it. I can say that my gums are more tender. New drugs are always a treat...you just never know.
In the mean time, I am amused by the early 20th century advertising paint job on this building in Tipp City, Ohio. I'm just a battle ax who is going to plug along...and I'll let you know how the next treatment turns out and whether or not the fatigue happens again or not. So far, I haven't found too many people who have had experience with this combination at all. Hopefully, this will help someone down the road.
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I can so relate to your post, although I'm not on Zometa. I'm having terrible side effects to Aromasin. I'm 49 but I act older than my 75 year old mother.
ReplyDeleteI'm also a nurse and the nurse at your oncologist's office really irks me. Its inexcusable for a nurse in any specialty to not educate her/his self in basics like side effects to the preferred drugs for the specialty.
I'm sorry you are going through this. Sometimes it seems we are cancer TREATMENT survivors...not cancer survivors.
Rofl! You are so right. Sorry I didn't catch this until now. I switched offices and although it is much farther for me to drive, I don't have the smart a...leck responses. It is unnerving when you go to check the side effects and the drug descriptions tell you to tell your physician and you get this sort of response.
ReplyDeleteI have never had many side effects, I don't think, to Aromasin, although I know some people do. Since I had $900 worth of it in my cupboard, I went back on it after having finished chemo..and will finish out this bottle. We'll see what I do after that. I hope you're doing well...scary stuff this! Lisa
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was no significant difference between the two treatment groups at the lumbar spine,
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