Thread: After taxol
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Old 09-30-2005, 07:54 AM   #4
Wendywins
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Join Date: Sep 2005
Location: Portland, Oregon
Posts: 14
Exclamation Taxol after effects

Apparently, it is the emulsifier that has adversely affected people so now there is a newer emulsifier to "carry" the taxol for infusions. Hopefully, that will soon spare women these problems.
However, when I had taxol infusions in 2002, I had severe pains in my joints which lasted throughout the first period after the first injection beginning within the first five days after injection. It was like having severe arthritis and broken feet etc. This was a real shock since I had expected taxol to be a piece of cake.
This was much worse than the burning/pins and needles in my feet and hands which also came. My oncologist was alarmed and reduced my dosage by 1/3 for the next three injections and it was better. He said that most people do not have that kind of reaction though may have five days or so of joint pain and will have the burning extremeties)which goes away quickly. Since that time, I have found that quite a few people had some pain with taxol but the effects varied in intensity from nearly nothing to intense and longlasting.

In my case, the crippling affects...the joint pain, and being unable to walk much lasted for a very long time ....mainly the lower body: hips, legs, knees, ankles and feet.However, I am happy to say that at LAST, these symptoms receded and now (2005), I can only identify them in my feet and contributing to discomfort occasionally in one ankle.
I still do not wear "regular shoes" but perhaps eventually will. I wear "wide" shoes, primarily sandals and earthshoes so as to reduce pressure on the sides of my feet and toes (which exacerbates nerve problems and swelling of the feet). Now I can walk for hours at a time whereas in the first months, I could hardly walk at all.

I think it important to monitor its affects on yourself and report them to your oncologist. Mine was wise enough to reduce my dosage when my reactions were severe. The effects are cumulative but in terms of the pain, can be lessened with smaller doses.
I learned a lot of things that helped with the taxol effects both shortterm and longterm and would be glad to share them. I used Nikken magnets..including wraps and the mattresspad and other items. I used a linament rubbed into feet and joints. I went to the wide shoes ..flat or birkenstock/earth shoes..bought from Wide shoe stores. Warm dry climates help (I went to Baja California. Hawaii in winter is great if you can go..or desert climates). Swimming/soaking in warm water or warm sea water daily if you can! Glucosamin or other joint supplements...etc.

UPDATE: Dec. 2006 Well, I am still around! My feet this year are better. I still wear wide shoes but I can be on my feet longer and they do not turn red and puffy on the sides after I have been on my feet for a while. I can walk around for 3 hours shopping in the mall, for example and am not crippled up. Warm weather is still better for me as is swimming in warmer water...as in Mexico in the ocean or in heated pools.
UPDATE: Aug. 2007: I am still around. Basically, I still have residual nerve damage from the taxol though it is only in my feet. However, I have learned how to "work around" any discomfort from being on my feet too long and still can maintain an exercise schedule and normal activities so I have lost 24 lbs. (yay!) . Life is good.

Last edited by Wendywins; 12-30-2006 at 12:44 PM.. Reason: need to add update
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