Taxol Chemotherapy

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My dear women...I noticed that we don't have a separate topic to discuss the effects of Taxol. Well here you go...I thought I should start one for the benefit of the few of us who are riding through this bumpy/not so bumpy taxol laid road :-)

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  • curlymommy
    curlymommy Member Posts: 20
    edited December 2011

    Let me initiate this with my experience with the new drug that is swimming in my blood - Taxol.I completed 4 cycles (one every 21 days) of AC. I have 4 clcles of Taxol and I just had my 1st Taxol administered yesterday. My experience has been very different from the previous AC cycles. I have been quite normal for the past two days. Actually for a change, I got out of home and went for a long long drive. Boy! I realized what I have been missing for the past 3 months. My doctor has told me that I would have joint pains and feel tingling sensations in my fingers/toes. Well that sounds so much better than the painful mouth sores and nausea that I experienced through my AC cycles. Taxol I am ready to you take you by the horns! Let me know what to expect colleagues... 

  • epgnyc
    epgnyc Member Posts: 101
    edited December 2011

    I've heard that many women have an easy time of it with Taxol, but as with all things chemo, my ride with Taxol was an extremely bumpy one.  I ended up in the Emergency Room following the first two Taxol treatments with what they thought was an allergic reaction, which can be very dangerous.  My oncologist thought I might have to stop taking it after the first reaction (tightening of the throat, itching rash, etc.).   I rash continued throughout all 4 treatments.  I developed neuropathy of the face and tongue, which is rare (still have the remains of this neuropathy 4 months out from the end of treatment) in addition to the usual neuropathy of the hands and feet (tingling, pain and numbness).  I had pains in my arms and legs, which were quite severe at times and toward the end it felt like the soles of my feet were very bruised.  Most uncomfortable!  I had a terrible chemical taste in my mouth for the first 4 weeks plus had mouth sores throughout.  The only good part of Taxol was that the constant nausea that dogged my entire AC treatment (and yes they gave me every anti-nausea med available anywhere with little result) disappeared.  I developed bad gastritis (which also continues) and lost all my eyebrows and eyelashes (the latter caused my eyes to burn and water).  But I think my experience is not the norm.  This was my 2nd bout with breast cancer and I have reacted very poorly to every chemotherapy agent they have given me. 

  • SeattleT
    SeattleT Member Posts: 3
    edited December 2011

    Hello.  I just got a second opinion from an oncologist.  The first wanted to do 4 treatments of A/C, one every other week, then 4 treatments of Taxol, one every other week.  The second opinion is to do 12 Taxol treatments, once a week following 4 treatments of A/C, one every two or three weeks, my choice.  The second oncologist believes that a weekly Taxol regimen (for 12 weeks) is more effective for my type of tumor and will be easier on my body.  That's 20 weeks (five months) of chemo, starting next week.  I'm resigned to doing chemo, followed by radiation and an aromatase inhibitor - but that seems like a lot of chemo.  Is it just me?  What questions did I forget to ask her?

  • gsg
    gsg Member Posts: 3,386
    edited December 2011

    I did Taxol..dose dense, four rounds.  Was easier for me to tolerate than the dose dense AC, which I also received 4 of.

     main problems besides fatigue:

     1.  neuropathy in my feet..oddly still feel some tingling in toes 5 years out, but it's mostly resolved.

     2.  Would get Taxol Monday and Friday afternoon (like clockwork) experienced dull, achy bone pain from the hips down.  It would be gone by Saturday.

    3.  Turned me bright red...face and chest.

    4.  Water retention.  Couldn't even wear shoes by the final treatment.

     I looked like a big, fat beefy bald guy by the time I was done...BUT...was cancer free and 5 years later still am.

    Best wishes to those who are starting this journey.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2011

    Hey Seattle. I start taxol two weeks from now; my final and 4th AC is tomorrow. I'm doing DD therapy--my AC every other week and 12 taxol weekly.  I did some research recently on the 12 vs. 4 infusion and found that scholarly research supports a lower percentage of recurrance with a higher degree of success from taxol when it's infused weekly.  

    It seems like a heck of a lot of chemo, but I figure in the great scheme of things, it's not a lot of time invested to save my life. After my chemo I face surgery and then 6 weeks of radiation.  I try not to think about how long and far away it seems. I think most women on these boards will tell both of us they felt the same way, but they are through it, hair's grown back, etc and they are glad they gave themselves every chance.  

    Good luck!

    Claire

  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2011

    I can't speak to the side effects (don't have that info yet) but many have told me that icing hands and feet 15" before infusion, through infusion, and 15" after infusion saves your nails...and that L carnitine, L glutamine, and B complex or B 6 saved them from severe or any neuropathy. My oncologist concurs about the supplements and I'll ice whether or not she says it won't work. It can't hurt. Finally, I did read also that 12 weekly is less hard on your body than larger doses less often.

    I didn't know about the water retention...hadn't heard that before, or the red-face thing.  Most have told me that after AC, it's not bad at all.  

  • SeattleT
    SeattleT Member Posts: 3
    edited December 2011

    Thanks, Claire.  I agree about the grand scheme of things and also feel like you that it is a lot to be into at one time.  My sister was diagnosed with breast cancer almost a year to the date before I got my diagnosis.  She counsels me to take one day/one treatment/one procedure at a time and I have to stop myself from 'living in the future' rather than in the present.  Thanks for your post.  I'll look forward to walking with you til we are through it all, hair or no hair!  T.

  • Beebop
    Beebop Member Posts: 206
    edited December 2011

    SeattleT - I had the same regimen. 12 weekly Taxol followed by 4 every other week AC. The taxol for me was very manageable until about week 9. I did have neuropathy in my hands and feet which I think started after a couple of weeks, but I was on medication and it never got unbearable. After week 9 it just seems that it built up and I started being more fatigued and having joint pain, mostly in my hips. But, compared to AC it was a lot better! I had my last AC on November 4th and am now waiting for my hair to come back! Good luck to you!

  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2011

    I forgot that a link to the 12 weeklies v. 4 infusions would have been helpful, but I can't copy the URL and paste it here. You can google cancer.gov and weekly taxol and find the information that way. There is also info at cancer-forums.org.

  • Peacock
    Peacock Member Posts: 86
    edited December 2011

    I am doing AC now with 12 Taxol to follow. I'm grateful for all and any info/tips, etc. Yes, it sounds like a lot of time in the chair, but worth it for many reasons -- and if one reason is less time lost to nausea, I'm in!

  • Bonseye
    Bonseye Member Posts: 193
    edited December 2011

    Claireinaz-you are so right to take it one small step at a time. I have had two AC treatments and two to go....followed by 12 weekly Taxol. I hear the Taxol is easier....but I believe a small price to pay for a long life. I just shaved my head and am ok with it....hate the itchy wig but will rock scarfs and hats when I need to ditch the wig. I have had the nausea and no appetite but so far i can navigate the side effects....first I will get through the AC then on to Taxol. Like you I need radiation but have to replace a TE that had a Staph infection first....so I can't get too far ahead. Living today and looking to the future :).

  • capinva
    capinva Member Posts: 138
    edited December 2011

    curlymommy thank you for starting this thread. I will have my first taxol tomorrow. I had a reaction to taxotere then did 4 cycles of A/C. I opted not to do the taxol after A/C because the tumor had shrunk and didn't know if the nodes were positive. Had simple mx on Nov 2 and SNB on Nov 9. MO told me Monday I need to try the taxol. Taxol is a "kissing cousin" of taxotere. I am very nervous about another reaction. I'm praying that by getting the smaller weekly doses I will not have any reaction. A/C was really hard for me, none of the anti-nausea meds worked and lost a lot of weight. Didn't need to lose any weight so I hope I can eat with taxol.



    I would like to hear how everyone is coping on Taxol. I am planning on working everyday except day of infusion. Praying for no SE for all.

  • TAPPY
    TAPPY Member Posts: 283
    edited December 2011

    Thanks for starting this.

    I did 4 rounds of AC every other week and Thursday I will start Taxol (4 rounds every other week)- I have been told it is easier to tolerate than AC....but I never take that to heart as every one is so diffferent with how they react to these meds.

  • schrodeo
    schrodeo Member Posts: 6
    edited December 2011

    I did what you describe in 2008 only added to the taxol for the 12 rounds each week was herceptin. Just as your oncol. said, mine too said that it would be more effective and easier on my body to do it this way. Now, nearly 4 years later, I am still cancer free; however I have had joint pain to varying degrees ever since.

  • schrodeo
    schrodeo Member Posts: 6
    edited December 2011

    In 2008 I had 4 rounds of A/C every other week followed by taxol and herceptin together for 12 weeks, once a week.  My oncol. said that it would be more effective and easier on my body.  I am very physically active and she said that doing it this way would better protect my heart.  Since I'd had a bilateral mastectomy before treatment there was no radiation treatments.  I've been ok ever since but have had some problems with joint pain especially hip pain ever since.

  • capinva
    capinva Member Posts: 138
    edited December 2011

    Today was my first taxol tx. Did find, no problem during infusion. Left the center and had pizza for lunch and still have appetite and energy. I have washed clothes and done a few things since I got home. I did take a nap because the benedryl really makes me sleepy anytime. I pray this continues because I am planning on working tomorrow. With the A/C I never felt this good after a tx.



    Tappy - I see you are from LA, I was born in Baton Rouge but moved to VA years ago. I also love the song you put in your signature. So very true.

  • ccjj
    ccjj Member Posts: 128
    edited December 2011

    Tomorrow I have my weekly taxol. It will be number 6 of 12. I did do the AC dose dense x 4 first. So far I am tolerating it fine. It seems the further I get from the AC treatment, the better I feel. The worst part of the whole deal so far is the fact that I have to go weekly. Its depressing going up there week after week, but its going by pretty quickly.  I was originally supposed to do dose dense taxol x4 and be done by Christmas. Then it was determined that the weekly taxol was a better choice for my situation. The length of the treatment is daunting, but as other posts have pointed out, this will come to pass. So far, the following has been my experience.  

    Friday- infusion. Come home a little tired from the benedryl.  Then have a lot of energy from the steroids until Sunday afternoon. Monday & Tuesday a little tired with some achiness, but nothing that Tylenol doesn't take care of.  Wednesday and Thursday good. Friday it starts all over. I had a little neuropathy after the 1st and 2nd treatment. It lasted about a day or two and was very mild. I haven't it had it in recent treatments for some reason.  I do take B6 and B12 to help with neuropathy but that's it. I don't ice my hands or feet. Good luck for those just starting.

  • TAPPY
    TAPPY Member Posts: 283
    edited December 2011

    So far the first Taxol went ok...(knock on wood) - I did fall asleep during the treatment...and ate lunch and thru it up - it was to spicey...but I was there from 8-2.  I should have made some one get me some lunch, I think that was more it than the treatment

    Just my face is red and swollen from the steriods I am guessing, hope it goes away fast like it did with the AV.

    I feel tired today, but so far no neaseua - which is a blessing to me.

  • schrodeo
    schrodeo Member Posts: 6
    edited December 2011

    Tappy and Capinva I am from New Orleans. Southern sisters are strong!

  • LuvRVing
    LuvRVing Member Posts: 4,516
    edited December 2011

    I finished DD AC followed by DD Taxol at the end of September.  I am glad I had AC first as it was difficult and I am glad I got through it first before the cumulative effects had taken a toll.  Dana Farber still administers this combo in this order.  I mentioned something to my MO about the 12 week Taxol protocol and i agreed with her comment that having chemo every week was just grueling.  Each of my treatments was about 6 hours because they drip the Taxol very slowly to minimize the potential for allergic reactions.  The Taxol portion of my treatment was 3 of those 6 hours.  I would have had 4-hour weekly treatments.  Yikes! 

    There must still be some question about the efficacy of Taxol before or after AC, or 12 weeklies vs DD every two weeks; otherwise, Dana Farber would be doing it, too.  All I do know is that I still had cancer in my mammary nodes after my BMX because they couldn't remove those nodes.  After my chemo I had a complete pathological response...no cancer left anywhere that could be seen on a PET/CT scan. 

    I found I had much less nausea with Taxol but a bit more joint pain on days 4 and 5.  And I was fatigued.  I did not have a problem with nails or neuropathy, but I took the supplements mentioned by claireinaz.  I did not ice my nails as I felt I couldn't endure 3 hours of that pain. 

    I found the benadryl infusion to be absolutely bizarre.  I didn't sleep, but I did slur my words and I might have been able to nap if I had been alone.  Someone from my family was always there with me.  After the first treatment, they cut the benadryl from 50 mg to 25 mg and I was a little less loopy.  I also took just 6 mg of Decadron as a pre-med on treatment day, none on the day before or after. 

  • capinva
    capinva Member Posts: 138
    edited December 2011

    I had my first tx of taxol on Thursday. I did fall asleep during tx which was different. Must have been the benedryl. Came home took a nap then woke up with lots of energy. Went to work on Friday, shopped and ready to go again today. So far so good. Feeling great.



    Schrodeo - Southern sisters are strong!

  • TAPPY
    TAPPY Member Posts: 283
    edited December 2011

    I have a little bit of achy in the bones today, but not so bad...think I will take a warm whirlpool bath 

    MY mouth is dead however andI can taste nothing... I keep waiting for the other shoe to fall.

  • curlymommy
    curlymommy Member Posts: 20
    edited December 2011
    @epgnyc: Thanks so much for sharing your experience with us. Would you by any chance be working with a naturopath too. I meet my naturopath 6 days a week and it has been certainly helping me quite a bit. I'm also on therapeutic yoga and this keeps me quite strong through my journey with these drugs. I wish you all the very best through your chemo.

    @southern sisters and the lovely ladies from the rest of the world riding this taxol wave: I am in my 6th day after my taxol infusion. Things have been going much better than my A/C experience (similar to most of you). Thank god for this!

    For those of you who are interested, here is my regime from the start of this chemo:

    Naturopathy: I meet my naturopath 6 days a week and depending on how I feel I receive the following different dosage of multi-vitamins, vitamins,ozone bath (reduces pain and is wonderful), ear ozone, Craniosacral therapy (brought the sensitivity to my arms which was quite dead post-surgery and relaxes me thoroughly), liver flush (enema 2 times a week), etc.

    Supplements: I take Garden of Life - Perfect Food, Phycocyanin, Spirulina, Quercetin.

    Homeopathy: Chimaphila umb, Scrophularia nod., Bryonia, Clematis (These have worked well on my tongue (taste, heaviness, etc.) and I just need to take a few drops of each of these every day)

    Yoga therapy: I do a set of yoga exercises every morning and this is primarily to help protect the inner lining of the digestive organs (sounds strange, but it seems to work well). Additionally it keeps me quite energetic.

    General Exercise: Run on the tread mill twice a day for 10 minutes each time.

    Diet: Complete vegetarian, 2 green tea, brown rice, lots of green veggies etc., 2 types of fruits (try to cover the rainbow fruits through the week), 2 juices (veggies), no white food, no bread, no sugar.

    I've been following all of the above from the start and have been feeling quite good through the chemo. Yes the mouth sores were a killer through A/C and I've lost 6 kg of weight, but otherwise everything else seems to be under control.

    All of the above may sound like an overkill but my daughter has been with me through this entire journey and has been helping me through every step. My sons are my research specialists and motivators and if any of you want more detailed information on any or all of the above, I will ask my sons to send you the information.

    Hope this helps.

  • seacretgardn
    seacretgardn Member Posts: 269
    edited December 2011

    Curlymommy I have just had my first AC tx, to be followed by 12 taxol.



    The yoga exercises you mention help your digestive track, are these something that a novice could handle? And one who has limited range of motion from the d&mn teflon under her muscles?



    I too am struggling with mouth burning and sores. Terrible heartburn to which I think just aggravates the mouth.



    Im so glad to hear so many having an easier time than with AC.



    Thank you and be well.

  • MiniMacsMom
    MiniMacsMom Member Posts: 595
    edited December 2011

    I take acidophillous pearls (yogurt bacteria) for my belly.  I love yogurt but sometimes I can't stomach it anymore.  I also use "smooth moves" peppermint tea, which I found out about on the forums.  It is amazing about keeping things moving.  The first taxol treatment felt like it put rocks in my abdomen, but the tea worked great!!  Sometimes too well, I can get by with half a mug a night or one mug every other night.  I hate having to take so many pills, I feel more natural with the tea.  Oh and I eat my share of sweetones prunes now and again.  Constipation, from all the anti nausea and stuff has been my one big side effect.  :)

  • mary625
    mary625 Member Posts: 1,056
    edited December 2011

    I have done 2 dose-dense Taxols after 4 dose-dense A/Cs and found the Taxol to be much easier to tolerate.  My main SEs have been constipation and pain in my legs that could be coming either from the joints or a muscle spasm.  The first treatment I had a lot of soreness in my thumb and first finger nails so much to the point that it was getting hard to do certain things requiring those fingers, but I did not experience it so much after the 2nd treatment.  With A/C, I was very fatigued, but with Taxol I get sleepy earlier and am sleeping much more rather than having the all-over fatigue.  I hope things continue this way for the last 2 treatments. 

  • TAPPY
    TAPPY Member Posts: 283
    edited December 2011

    Holy bone pain batman....Ok - so no nausea issues with Taxol......but I am having some serious bone pain today (Taxol treatment was Thursday).   I had a nuesulta shot the next day - but it never bothered me while ai was on AC - so I figure it has got to be the taxol.

    After trying OTC  - which did not touch it..I had some Roxicets left over from my surgery, they barely take the edge off of the pain...which is in legs, knees, hips, ankles...

    What do docs normally prescribe for this ?  I need something that is going to let me sleep...ugh !!!

    This is better than the A/C for sure...but how long does the pain last - a few days and what can I take to get me thru those days...it has been misery.

  • curlymommy
    curlymommy Member Posts: 20
    edited December 2011

    @seacretgardn:

    Yoga therapy: I had a mastectomy done and the yoga that I am doing actually helped with the pain that I had. It is not strenous in any way. You may want to check with your oncologist if he can recommend a yoga theraupist who would help you through the chemo. They are generally connected to the hospital.

    Mouth sores: Tumeric works well. I bought tumeric powder and applied it in my mouth for a few minutes then washed it out. It worked very well.

    Heartburns: I experienced this during my 1st cycle. To reduce this, I boiled a few cumin seeds in water and drank it whenever I had water. It worked quite well.

    @MiniMacsMom: I take sweet potatoes for constipation and it seems to work well for me.

    @Tappy: You may want to try to speak to your naturopath about an ozone bath. It worked well for me for the pains I experienced.  

  • Quaatsi
    Quaatsi Member Posts: 385
    edited December 2011

    Hi everyone--  I have finished 6 out of 12 weekly taxol (to be followed by ????-- staying in the present! LOL)  I have to say the the only thing predictable is that the effects are variable --week to week.  I found that some weeks I was tired the next day, other weeks tired the second day.  once I had a horrid tongue sore where my tongue was swollen and had difficulty swallowing.  Another time a UTI. I often feel a sort of weakness in my thighs-- but I have continued to work out and try to get exercise.  Since my GI is my weak link, I get issues there-- the whole track from entering to exit!!!  

    If this tells you anything, I plan on going camping with my horses over the New Years.  I may not be able to ride all day long but I can still ride, laugh and be happy.

  • Quaatsi
    Quaatsi Member Posts: 385
    edited December 2011

     For neuropathy, I was told 30g (no less) in divided doses if you can of  L-Glutamine . Helps with GI issues too.

    I put it in a smoothie with whey protein, good quality yogurt and 4 strawberries every morning-- helps me get enough protein for cell repair.  yummm 

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