To Taxol Or Not To Taxol?

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elizagain
elizagain Member Posts: 43
edited March 2014 in Breast Cancer #1
I've just had a bilateral mastectomy to remove a 2cm tumor in my left breast and prophylactic in my right. The tumor was classified as a second primary, since I have had the same thing before 5 years ago, but this was a new area, completely new and different type of tumor. Previously, I had a 1.8 cm ER+, and this one is ER- but PR+ and HER2/Neu 3.1. So it's as if I am starting from scratch. (How I wish I had stuck to my first choice of having a mastectomy 5 years ago instead of a lumpectomy!) My nodes were negative and bone and cat scans show nothing. The standard of care is to do some sort if chemo for this, so since I already had AC, they have decided to do Taxol. The decision is to do 1 hour weekly infusions for 12 weeks. They tell me that the side effects on this dose are minimal, with hair thinning instead of loss, and perhaps some aches and pains and a smaller chance of neuropathy. I was supposed to start treatment last week, and I just called up and cancelled. I've been doing a lot of reading on Taxol, and I don't like what I am seeing. Also, to be honest, I swore to myeslf that I'd never do chemo again. I feel as if people are just throwing this at me to make sure that they are following the guidelines so I can't sue them if I do have a recurrence. Frankly, I just cannot face more chemo. It made me a wreck last time. Does anyone have any experience with this dosage of Taxol? I feel as if I'm damned if I do and damned if I don't.

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  • SusanAnne
    SusanAnne Member Posts: 245
    #2
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    Hi elizagain. One thing I have learned through all this is how differently each person responds to exactly the same drug. Yes, of course there are some side effects that seem to be more common, but then there are those people who experience few or diminished symptoms. The taxol for me was a breeze, especially comparing it to the A/C. The biggest complaint I had was the fatigue during the last third or so of treatment. Is your doctor offering you herceptin as well? Maybe if you decide not to do the Taxol they might consider that. It is all up to you. You can always try it and stop at any time. Whatever you are comfortable with. Also, get a second opinion. Best wishes.
    Susan
  • wingingit
    wingingit Member Posts: 48
    #3
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    I had 12 consecutive wks. of Taxol in ~1 hr. sessions followed by 4 FAC treatments over 3 mos. prior to mastectomy to help shrink a 5 cm tumor. Like Susan, I can say the Taxol was much easier on me than the FAC. I did, however, lose my hair and had relatively mild aches and pains a few days following each treatment. (Can't really say whether strength of dosage would be same.) I think most of my side effects at the time may have been from the premeds given me (Decadron, Benadryl, and Tagamet). All in all, the Taxol treatments were very doable for me but I know all of us react differently to meds. I was 47 at the time, ER/PR+ and Her2Neu-, and tried to stay as physically active as possible and eat a nutritious diet. Some people on this site have attributed lingering neuropathy and joint and muscle pain to prior Taxol treatments. I do have some joint pain but feel the Tamoxifen or just chemo-induced menopause may be more of the culprit in my case. Do what feels right for you after researching and hearing the pros/cons. And yes, a second opinion can never hurt. I would be happy to give you any more details of treatment/outcome here or through email. Wishing you wellness. . . Krista
  • elizagain
    elizagain Member Posts: 43
    #4
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    wingingit said:

    I had 12 consecutive wks. of Taxol in ~1 hr. sessions followed by 4 FAC treatments over 3 mos. prior to mastectomy to help shrink a 5 cm tumor. Like Susan, I can say the Taxol was much easier on me than the FAC. I did, however, lose my hair and had relatively mild aches and pains a few days following each treatment. (Can't really say whether strength of dosage would be same.) I think most of my side effects at the time may have been from the premeds given me (Decadron, Benadryl, and Tagamet). All in all, the Taxol treatments were very doable for me but I know all of us react differently to meds. I was 47 at the time, ER/PR+ and Her2Neu-, and tried to stay as physically active as possible and eat a nutritious diet. Some people on this site have attributed lingering neuropathy and joint and muscle pain to prior Taxol treatments. I do have some joint pain but feel the Tamoxifen or just chemo-induced menopause may be more of the culprit in my case. Do what feels right for you after researching and hearing the pros/cons. And yes, a second opinion can never hurt. I would be happy to give you any more details of treatment/outcome here or through email. Wishing you wellness. . . Krista

    Dear Wingingit and SusanAnne - thank you so much for your replies. Your responses help a lot. I'm planning on calling my doctor on Monday and having them reschedule me - but I still don't like it! :-) Oh well. at least I have a couple of wigs from last time.
  • judiek
    judiek Member Posts: 71
    #5
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    Elizagain,

    I am on taxol and avastin (clinical trial) I am doing 3 weeks on one week off. I have treatment #16 on Monday. Like the other gals have stated we all have different side effects. For me, I am experiencing joint pain. I take bextra and that seems to help. I lost about 75% of my hair and now it has started to grow back. I really have not had the tingling like some women get. I have found this tx to be tolerable and manageable. Best of luck to you on your decision.

    Warmly,

    Judie
  • Kathy1108
    Kathy1108 Member Posts: 62
    #6
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    I did not have the exact amount of treatments of Taxol, I had 4 treatments every other week. I did have the aches and pain and the neuropathy in my toes and fingers. I still have the neuropathy in my toes (one is a little better than the other) and my last treatment was in October of 2003. I also was very tired when I was on it. Every other week I had to have a aranasp shot for my red blood cells. I did lose my hair but I lost it when I first started chemo. I had 4 AC treatments every other week, then I went on Taxol.
  • elizagain
    elizagain Member Posts: 43
    #7
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    Kathy1108 said:

    I did not have the exact amount of treatments of Taxol, I had 4 treatments every other week. I did have the aches and pain and the neuropathy in my toes and fingers. I still have the neuropathy in my toes (one is a little better than the other) and my last treatment was in October of 2003. I also was very tired when I was on it. Every other week I had to have a aranasp shot for my red blood cells. I did lose my hair but I lost it when I first started chemo. I had 4 AC treatments every other week, then I went on Taxol.

    Hi Judiek and Kathy1108. Thanks for your response. I guess I am more or less resigned to doing this. I'm feeling better about it. Not great, but better! This, too, shall pass.
  • tulip66
    tulip66 Member Posts: 32
    #8
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    Hi Eliz - wanted to let you know my experiences with the Taxol. I had it weekly for 12 weeks with Herceptin since I was HER2+ also. I lost all my hair everywhere...that was a hardest part. I also had joint pain and loss of feeling in my toes and fingers. Now it is 7 months after that time and I feel so much better. My hair has been coming in thick and curly and my energy is way up. I found Taxol much easier to deal with than AC. I wouldn't look forward to it again but who would with any Chemo?!! Since this is a another primary and it is a different and more aggressive type - I certainly would do the Taxol. Taxol has been proven to be effective against HER2+ status...also there seems to be research done that with it weekly it is more effective. My WBC dropped once and they had to lower my dosage for that week - otherwise I never needed Progrit or any other drug to go with it. Some women I know only had their hair thin - maybe you would be lucky like that!

    I wish you all the luck and strength. Some friends I have made had a little bit of depression on the Taxol so be aware of your state of mind during this time and let your doctor know if you need some medication to help you.

    I'll be thinking of you. Feel free to ask any questions - I'd be happy to help!
    Ruth
  • elizagain
    elizagain Member Posts: 43
    #9
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    tulip66 said:

    Hi Eliz - wanted to let you know my experiences with the Taxol. I had it weekly for 12 weeks with Herceptin since I was HER2+ also. I lost all my hair everywhere...that was a hardest part. I also had joint pain and loss of feeling in my toes and fingers. Now it is 7 months after that time and I feel so much better. My hair has been coming in thick and curly and my energy is way up. I found Taxol much easier to deal with than AC. I wouldn't look forward to it again but who would with any Chemo?!! Since this is a another primary and it is a different and more aggressive type - I certainly would do the Taxol. Taxol has been proven to be effective against HER2+ status...also there seems to be research done that with it weekly it is more effective. My WBC dropped once and they had to lower my dosage for that week - otherwise I never needed Progrit or any other drug to go with it. Some women I know only had their hair thin - maybe you would be lucky like that!

    I wish you all the luck and strength. Some friends I have made had a little bit of depression on the Taxol so be aware of your state of mind during this time and let your doctor know if you need some medication to help you.

    I'll be thinking of you. Feel free to ask any questions - I'd be happy to help!
    Ruth

    Hi, thanks! yes, I think I am r esolved t do this, but I don't look forward to losing the hair for a second time. ugh. IT's funny that I find that to be harder to take than the fear of recurrence. Thanks for your reply - I always find it helpful to hear from women who have been through this.
  • elizagain
    elizagain Member Posts: 43
    #10
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    tulip66 said:

    Hi Eliz - wanted to let you know my experiences with the Taxol. I had it weekly for 12 weeks with Herceptin since I was HER2+ also. I lost all my hair everywhere...that was a hardest part. I also had joint pain and loss of feeling in my toes and fingers. Now it is 7 months after that time and I feel so much better. My hair has been coming in thick and curly and my energy is way up. I found Taxol much easier to deal with than AC. I wouldn't look forward to it again but who would with any Chemo?!! Since this is a another primary and it is a different and more aggressive type - I certainly would do the Taxol. Taxol has been proven to be effective against HER2+ status...also there seems to be research done that with it weekly it is more effective. My WBC dropped once and they had to lower my dosage for that week - otherwise I never needed Progrit or any other drug to go with it. Some women I know only had their hair thin - maybe you would be lucky like that!

    I wish you all the luck and strength. Some friends I have made had a little bit of depression on the Taxol so be aware of your state of mind during this time and let your doctor know if you need some medication to help you.

    I'll be thinking of you. Feel free to ask any questions - I'd be happy to help!
    Ruth

    Oh I forgot - did you work during your treatment? And did your eybrows come back?
  • tulip66
    tulip66 Member Posts: 32
    #11
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    elizagain said:

    Oh I forgot - did you work during your treatment? And did your eybrows come back?

    Hi Eliz - I did work during treatment. I am an accountant and I pushed through with it. I had my treatments on Wednesday afternoon and so I was almost finished with a week of work before it hit me on Friday afternoon. I didn't work Wednesdays & Fridays. My husband was home on the weekend to help with the kids when I felt achy. I missed some soccer games (not all) and I was still able to get out and about even on the weekends.
    My eyebrows, eyelashes and leg hair did the craziest things. My eyelashes before chemo were very long and curly. When they started growing again they were short and thin. Then about 4 months ago it seemed I was losing all of them again!! But then they started coming in and now they are all back to normal. When my hair started coming in I had hair EVERYWHERE. I literally felt like I could have tried out as an extra on Planet of the Apes. My legs, arms, even face had hair. I thought "oh no, you have GOT to be kidding!" But that too passed and now all of my hair is normal except my head hair which is curly and thicker.
    I'm glad that you are doing the Taxol. It is such a good and powerful drug.
    Please email me at Rschrie126@aol.com if you have any more questions...especially after you get your first dose!
    Ruth
  • elizagain
    elizagain Member Posts: 43
    #12
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    tulip66 said:

    Hi Eliz - I did work during treatment. I am an accountant and I pushed through with it. I had my treatments on Wednesday afternoon and so I was almost finished with a week of work before it hit me on Friday afternoon. I didn't work Wednesdays & Fridays. My husband was home on the weekend to help with the kids when I felt achy. I missed some soccer games (not all) and I was still able to get out and about even on the weekends.
    My eyebrows, eyelashes and leg hair did the craziest things. My eyelashes before chemo were very long and curly. When they started growing again they were short and thin. Then about 4 months ago it seemed I was losing all of them again!! But then they started coming in and now they are all back to normal. When my hair started coming in I had hair EVERYWHERE. I literally felt like I could have tried out as an extra on Planet of the Apes. My legs, arms, even face had hair. I thought "oh no, you have GOT to be kidding!" But that too passed and now all of my hair is normal except my head hair which is curly and thicker.
    I'm glad that you are doing the Taxol. It is such a good and powerful drug.
    Please email me at Rschrie126@aol.com if you have any more questions...especially after you get your first dose!
    Ruth

    Will do. Thanks so much~

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