After taxol

Have finished my 12 weekly taxol and herceptin, now starting herceptin only with rads next month. How long and what kind of lingering side effects can I expect from taxol, and what side effects may I expect from herceptin? Know they should be few, but joint and muscle pain/discomfort seems to have followed me thru all of my treatments. Some may be attributed to stress. Just interested in those who have gone before me and their experiences.

Thanks for any info you would share.

Sassy

I did the taxol separately from Herceptin (and I am still on Herceptin) so I am taking it like in the HERA trial.

I had a bad time with taxol. I had terrible leg pain (and sometimes when I am sitting in a chair too long (at work) I have to think hard about balance upon standing. My thumbs are still a little numb but improving. I am more allergic to things because I was very allergic to the emulsifier in taxol (hives, swollen lips - my onc even gave me an epi-pen). I got 2X the amt of benadryl as a premed and had to take 2 benadryl tablets as soon as I got home and every 4 hrs for the first 24 hours. I have no pain left and the neuropathy is improving.

Herceptin is the easiest drug ever except I am very tired the next day. I only took premeds the first time. I get a runny nose from it for a day or two but nothing else. Your aches and pains are most likely from the taxol and that improves rapidly (although you might have some lingering effects that will take awhile to completely go away - fyi - I finished taxol in Feb 2005).

Hope this helps

Best regards

Becky

[carlotta]

Sassy,

Taxol was not fun in regards to bone pain. Couple that with the neulasta and bone pain is a problem . I am nine months post Taxol, but still get shin splintz if I go over 3.8mph on the treadmill. I am presently on herceptin only and have just completed my 6th treatment.

The bone pain I have been left with is my hip and lower back which have been a problem for many years pre BC diagnosis. Now I am always worrying about bone mets.

I do have some weird herceptin thing happening like a sensitive mouth and a cracked corner of my lips, hand and feet spasms. No one can confirm herceptin being the cause.
There is now way I will give up on herceptin, no matter what the reactions!

[Wendywins]

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.

[Wendywins]

Jan.2008. Wow. Still around and NED. Progress..though my taxol aftereffects on my feet are still there, I actually bought my first tennis shoes (wide of course so as to minimize pressure) and can use them to exercise on a recumbent bike or treadmill and walk around in them , "looking normal". Big thrill. Have also found that the use of foot lotion (heavy moisturizing)at nite, and wearing spa sockbooties means foot comfort at night and better feet the next day...less pain/tingling.

[Mary Jo]

I've had no lingering effects of either taxol or herceptin. I had lots of leg pain during taxol and joint pain while on herceptin. But, all fine now.

Mary Jo

[chrisy]

I had mild neuropathy - basically some tingling in my fingers and toes - while on Taxol. It took quite a while (I'd say a year or so) before it went away.

You should feel pretty darn good on Herceptin alone. I remember thinking I felt pretty good while on T/C/H and then when I stopped the T/C..."oh, NOW I feel good!".

Your doctor will continue to monitor your heart function but most people do not have problems.

Congratulations on putting another milestone behind you!

[DonnaD]

I finished Taxol in March and it was very hard for me. But I have no lingering side effects. I did have neuropathy in my fingers and toes. It disappeared right after I was finished with Taxol.

Herceptin was a breeze compared to chemo. I did experience pain in my hips and upper thighs near the end of Herceptin, a very drippy nose the entire year and very thin nails. My hair, eyebrows and eyelashes are still slow to grow. I finished Herceptin in Dec.

Good luck. Congrats on being finished with Taxol. Go girl!
Donna

[sassy]

WOW is right Wendy. I started this thread 2 1/2 years ago, and I'm still around and NED!

[Wendywins]

HI y'all . Its Wendy and its now been 9 1/2 years since diagnosis,and 8 yrs,9 months since all treatment finished(radiation ..after taxol infusions, mastectomy, Adriamycin-Cytoxin,.following the first two operations((lumpectomies)). NED since!! Its Oct. 2011.

[Pray]

Wendy,

I couldn't be happier for you! I want to be just like you! God is good all of the time!

Gods blessings to you and your family!

Peace,

Your Friend,

Nancy

[Lisa1967]

CONGRATULATIONS WENDY!!!! I am soo Happy for you. May you continue to live a long, healthy and happy life. Bless You and all our HER2 Sisters!!!

Hugs to All...Lisa

[ElaineM]

Good for Sassy and Wendy. I am happy for you both.

[StephN]

Wendy -
Thanks for looking in and letting us know that you are just about to join the TEN YEAR CLUB.

That will be a major milestone and increases the odds that you will stay NED forever.

Take care and be happy.

[schoolteacher]

Glad to hear from you, Wendy.

Amelia

Thanks all! On Oct 15, I gave the keynote speech for a special luncheon event on the Oregon Coast as part of the "Yes, Ma'ams!" campaign which was to raise the approx. $90,000 to buy a digital mammography for the local south coast hospital (they only had one aging film mammography machine for which there are no more parts made to repair and it was breaking down). We are now less than $3500 from complete financing. The money will do more that purchase the machine but will also mean coupons to be handed out for free mammograms for those unable to pay for the test.

I am very happy to be alive and able to see my only daughter finish college, and get married and get a job and a home. I am happy to have been able to be the catalyst for a new charity ..and served as a founding member of the board of directors, Green Village schools (www.greenvillageschools.org) which founded and maintained a school in Helmand province , Afghanistan. A movie was made about this. I was interviewed for it and so appear in it, and my interview in my voice was used for part of the narration.... The film, Stealing the Light, is part of the Peace thru Education series and is being shown nationally....

I am happy for the additional years of usefulness to others.

[Wendywins]

Oops. That last post was from me, Wendywins..not the mysterious unregistered guest!

[tricia keegan]

Congratulations Wendy and you're an inspiration!!

[chemteach]

Wendy....that is so wonderful! I'd love to do something like that when this is behind me in a year or two or more. Maybe I'll take my high school students somewhere and inspire them as you have inspired others. What a great story!