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Weekly Taxol group

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Comments

  • nancy2581
    nancy2581 Member Posts: 408
    edited March 2015

    hi Linda - my MO wouldn't let me take B complex but I did do glutamine. I think I continued it for a few weeks after my last taxol but that was it. Some say to continue it for a while but I didn't for too long. I was fine without it.

    Good luck with rads. I'm thinking about you

    Hugs

    Nancy

  • 2015kbca
    2015kbca Member Posts: 2
    edited March 2015


    Thank you so much for starting this forum, it's so great to hear from others going thru this process. .  

    I finished AC last week (yay) and will begin weekly 12 Taxol (& Herceptin) next Weds.3/11.   I had a tough time with AC and am very hopeful to read that most seem to tolerate Taxol a bit easier.    I have been out of work for all of my AC and am hoping to go back in early April, just want to get a few rounds under my belt to see how I am managing.   My MO has let me borrow some Hypothermia Mitts & Slippers for the Taxol round, they are supposed to help with Neuropathy.    I am going to give them a try.  

    During AC I had lots of fatigue and body aches (especially after the Neulasta) and had some bad mouth sores after one round. (but only once thank goodness).   I am very happy to have AC behind me and really hopeful that TH will allow me more 'GOOD DAYS' than bad one.     

    I was surprised to hear that some of you have experienced some hair growth during weekly Taxol, I would love just a little growth.   Losing my hair hit me harder than I expected and I hate my wig.    
    Thanks again.    

  • moderators
    moderators Posts: 8,643
    edited March 2015

    Dear 2015 kbca, Welcome to the BCO community and we are so glad that you reached out here. We look forward to hearing more about your experiences and hope that you will find valuable and meaningful exchanges here and throughout the boards. The MOds

  • Butterfly53
    Butterfly53 Member Posts: 3
    edited March 2015

    I just finished Taxol a week ago. I am very happy to be done! I thought Taxol was suppose to be easier than the A/C but not for me. I did not do the dose dense Taxol because I was afraid of getting neuropathy. I did it every week for 12 weeks. My MO was in agreement with administering that way. I never did get neuropathy. However, I had the tearing of the eyes, blurry vision both for distance and close. I did get a stronger reading glass prescription because I could no longer read. My nose was a mess and always bleeding. One week out and my nose is totally improving. I wish I knew about the Vicks. I tried Claritin but without success. My nails just kept growing stronger and longer. I was expecting them to get weird. I had nausea every day but never got sick. My worst complaint was terrible bone pain. It felt like I had been hit by a truck. This started about 10 weeks into the process. At first, I was trying to just take Tylenol and keep a heated blanket on me but after awhile I started needed something more and my MO prescribed hydrocondone with Tylenol. It worked like a charm as much as I would have preferred not to have had to resort to drugs. Pain is non-productive! My question is: is anyone still having bone pain since their Taxol has ended? Sorry to all about this chemo journey. But, it will end!

    Hugs to all,

  • Gatomal
    Gatomal Member Posts: 418
    edited March 2015

    butterfly, please keep us posted about your blurry vision. I'm having it too, and just blamed on vision changes in pregnancy, but it's interwsting to know it may be taxol related too.

  • ladyb1234
    ladyb1234 Member Posts: 1,239
    edited March 2015

    Gatomal and Butterfly, I too had blurry vision that began with AC but continued through Taxol and cleared up about 4 weeks PFC of Taxol. During Taxol I had other eye problems such as dry eyes. My eye doctor would not give me a new prescription as he said my eyes could continue to fluctuate during chemo. I did have several eye appts during my chemo treatments to monitor the dry eyes, blurry vision and just changes in general as I also experienced a detached vitreous, which they said was not chemo related. I also had nausea during Taxol, which the MO and Onc nurses said was "unusual". This may be TMI, but I have to say I upchucked more with Taxol than I did with AC. I too resorted to Norco for the bone pain and joint aches and also was able to get Ativan for the insomnia. I am so glad I am over the Taxol hump. I am now 7 weeks PFC and just starting to turn the corner with the SEs. With all the above we understand that the reaction and experiences are individual and I just happen to hit the hard end of the scale.

    Go figure I just lost two toe nails within the last week? My fingernails are starting to look health again. Most of the dark black/purple coloring is growing out.

  • Gatomal
    Gatomal Member Posts: 418
    edited March 2015

    oh ladyb, I remeber the detached retina post, so glad you went immediately to take care of that. I thought your teary eyes was contributing to your blurry vision, but it's good to know about your eye doc saying the chemo can kinda destabilize your vision and focus. I'll wait for a while to go the eye doc to get a new Rx for contacts and glasses. I too have nausea with taxol, it sneaks up on my day 3, 4,5,6 because I don't stay on top of it.

  • metta
    metta Member Posts: 9
    edited March 2015

    Lara, for some people Taxol is indeed much better than AC. I'm a worrier and really worried when I read this thread. But my side effects have been okay (just had #9 of 12). My wbc counts are low, but I decided to stop looking at the number every week. I have had painful neuropathy in the past, like you, but I have not had anything as bad as true neuropathy on taxol, just a hint of tenderness in my fingertips. My other symptoms are bad fatigue on day two (thanks Benadryl) and day four, bone achespain, a bloody stuffy nose (not to be gross, but when I blow my nose it's like I had dried cranberries up there), and more hair loss. So for me, taxol is not as bad. I hope you will be one of the lucky ones, too.

  • Butterfly53
    Butterfly53 Member Posts: 3
    edited March 2015

    Gatomal, I will definitely keep you updated on the blurry vision. I would have to say mine is absolutely from the Taxol because that's when it started. The Onc nurses recommended I use an eye wash. That only helps somewhat. Sorry you are having the same problem. I'm sure being pregnant doesn't help much either. Be well.

  • Butterfly53
    Butterfly53 Member Posts: 3
    edited March 2015

    2015 kbca, I started growing a little hair during Taxol. It looks like peach fuzz. I was happy to see something was happening even though it's not much. I too did't realize how much I would dislike losing my hair. But, I don't like it. I look at my bald head in the mirror every morning and tell myself I am a freak of nature. Then I start laughing and my DH starts laughing. I know it won't be permanent. I also don't like my wig because it is so hot to wear but I am toovain to go out without it. I finished my Taxol a week ago so I will give up dates on the hair growth. Hugs

  • ladyb1234
    ladyb1234 Member Posts: 1,239
    edited March 2015

    2015 kbca, I started growing hair during Taxol, more of a peach fuzz. The growth took off about 4 weeks PFC.

    Lara, just want to restate that Taxol is eaiser for most women. I was on of those where it hit me harder than AC. Praying that you have minimal to manageable SEs. Also discuss with your MO or Onc nurses any SEs with Taxol as they tend to be cummlative in nature. Good luck and remember to rest and drink lost of water.

  • LCH033
    LCH033 Member Posts: 6
    edited March 2015

    Metta and ladtb1234; thank you for your answers and input; I am still getting over round 3 of AC as I managed o drink too much water and sodium depleted myself and almost ended up in the hospital; next time more Gatorade and don't be afraid of salt!! Lol

    My Mom is making some cold pockets for my fingers and toes to try and keep my nails through Taxol; I have a very queasy tummy anyway and thus far some of my SE's even my MO and Research nurse have scratched their heads so I am a little nervous I am just one of those that have the SE's some don't. I already have to go in twice for fluids after each AC chemo because no matter what i do I get dehydrated; and I drink between 70 and 90 ounces of water a day!

    I too am tired of being bald; it's cold and I miss my hair; so I am a little anxious to see how quickly it grows back and what it looks like! :) I am also ready to get some energy back; hoping I do after I switch to Taxol; I miss being able to go to the gym at least a couple times a week.

    The bone pain from the shot after AC day is worse this time; does that get worse with Taxol?

    Is anyone else doing Herceptin with their Taxol? Does it change the hair growth process?

    Sorry so many questions....I trust you ladies and value your input. Smile

    Hope you all are having a good week!

    Fight like a girl!! Never give up!!

    Lara

  • MJS1266
    MJS1266 Member Posts: 159
    edited March 2015

    LCH033: I can say that none of my SE's for A/C or Taxol were unbearable, not that they were great but they weren't as bad as I imagined. The worst being hair loss and a close second the neuropathy. I was also prone to skin infections and was on antibiotics and cremes a couple of times. I don't think this is a common SE. I finished Taxol last week and am anxiously waiting for the SE's to subside. I can give you one piece of good news, no need for the neulasta shot with Taxol. I found that everything was about timing as far as fatigue. I knew the days that I would be more fatigued and scheduled activities on other days. My hair did start to grow back but is very fine and thin. I'm hoping in a few weeks it will really start to grow. Good Luck,

  • Karz72
    Karz72 Member Posts: 102
    edited March 2015

    Hi All, I start 9 tx of weekly Taxol on the 23rd so searching for as much info as possible. My SEs with cytoxan were very well managed & besides crashing with exhaustion on day 3 (& hair loss of course) I can't complain too much.

    I've read that multivitamins & antioxidants should be avoided while on Taxol - any thoughts on that?

    Will be painting my nails dark & using frozen mittens & booties during transfusion to keep my nails. Any other tips?

    thanks, Karz

  • LCH033
    LCH033 Member Posts: 6
    edited March 2015

    MJS; thank you; and yes, I am happy to hear no shots during Taxol! Yay!! A silver lining. :) My SE's on AC have been horrible and seem to build on each other at times; today is just fatigue and bone pain as I forgot to add Claritin to my morning meds regiment (shame on me) and I'm paying for it. I am looking forward to my hair growing back; on my head....not anywhere else! Lol

    Karz72; I don't know the date of my first Taxol; I know my 4th and last AC is the 19th so I am hoping I get at least my 3 week break before starting Taxol. I hope it goes well for you with very few SE's.

    I take some vitamins however told to stay away from anything "antioxidant" as it works against the chemo treatments. I do however take Biotin, Vitamin E, Vitamin D3, and Vitamin B6; I am trying to keep my nails and bones strong and prepare for any neuropathy as I already have some nerve compression in my neck and have numbness in my ring and pinky fingers on both hands.

    Please explain the dark nail polish; I have read some of the ladies doing that however I don't know the reason behind it. I thought nail polish was a no-no along with pedicures/manicures?? Please enlighten me. Happy

    My Mom is busy making my fleece covered cold packs to ice my toes and fingers to try and keep my nails.....it amazes me the ideas that come from dealing with cancer and chemo! I am always so grateful for a new tidbit of information and/or suggestions!

    Have a great day ladies!

    Fight Like a Girl, Never Give Up!!!

    Lara


  • Karz72
    Karz72 Member Posts: 102
    edited March 2015

    Hi Lara - my onc nurse told me that the taxol reacts with sunlight causing the discolouration & making them more brittle, so to keep them covered with a dark nailpolish.

    thanks for confirming the antioxidant info!

    Karz

  • 2015kbca
    2015kbca Member Posts: 2
    edited March 2015

    Hi Lara,  LCH033

     I start weekly x12 Taxol today and am very nervous about what SE's lie ahead for this next round.    I had a hard time with AC but am really hoping to manage my SE's better this time around.    I have 5 weeks left on disability, so am planning to return to work in early April (I can't wait)

    I too am sick of being bald & Cold, not having my normal energy and my normal workout t schedule.   Basically, I'm tired of not feeling like myself.   Chemo is not fun.     I so appreciate reading all of the posts from other 'survivors' going through this process, it really helps to here first hand what we all are going through, the good, the bad and the UGLY!    The insider tips are especially helpful.    

    Thanks and good luck to all.   Be well.

    Geriann

    #KBCA (Kick Breast Cancer's Ass)

     

  • jlstacey
    jlstacey Member Posts: 117
    edited March 2015

    I have a question ladies that could be important to my sanity. For those that waited three weeks between AC and Taxol, did you get your taste buds back toward the end of the three weeks? If so, I'm going to wait three weeks and stuff myself silly for the days I have my taste buds. Seriously

  • ladyb1234
    ladyb1234 Member Posts: 1,239
    edited March 2015

    jlstacey, I did not get my tastebuds back until around 4/5 weeks PFC of Taxol. And boii did I stuff myself once I was able to even get a hint of flavor. LoL. Hope you are able to enjoy something during the 3 weeks between AC and Taxol.

  • LCH033
    LCH033 Member Posts: 6
    edited March 2015

    Geriann, I could agree with you more on how much these posts and ladies help us deal with this all and go through it all! I hope your Taxol 1 went well and that you have very few SE's; keep me posted on how you're doing as I am about 4 weeks from my 1st Taxol with AC #4 next Thursday the 19th. I also hope you are able to get back to work and feel good and start gaining your energy back. Also, I'm curious as to how fast your hair will start growing back; I miss my hair so much however very much enjoying not having to shave everywhere else! Lol

    jlstacey, I hope you are able to get your taste buds back before starting Taxol. I have Really been lucky as I have only had tastes and smells bother me or change for about 8 days after each AC; but they always come back and the only thing I Can Not eat at all right now is raw onions like on a salad or burger or something; it makes me horribly sick! I guess we're all different....my luck I'll lose my taste buds on the Taxol.

    I do still have a few lingering eyebrows and lashes however I see those being completely gone quite soon!

    Keep up the fight ladies!

    Fight like a girl, Never give up!!!

    Lara

  • bbwithbc45
    bbwithbc45 Member Posts: 367
    edited March 2015

    I keep finding more and more threads of interest here. Pretty soon I won't have time for anything else.

    I had my Taxol # 2 yesterday and now I have the worst acne/rash of my life! My husband thinks it's a side effect of steroids and not chemo itself. One way or another I hope my MO's office can help me with it. My face hurts.

    BB

  • Karz72
    Karz72 Member Posts: 102
    edited March 2015

    BBwithBC thanks for reminding me about the steroids! I was on cortizone for 3 weeks after my c-section & had really bad water retention - the skin on my feet was splitting I was so swollen. Something else to look forward to ;-)

    A week & a half to go before I start Taxol & looking forward to celebrating next week as my real "off week" as it would have been Cytoxan recovery week based on the past few months routine. Can't believe I'm half way through my planned treatment already & praying everything goes according to plan.

    Karz

  • molly1976
    molly1976 Member Posts: 78
    edited March 2015

    Hi everyone, I am brand new - just started my weekly taxol treatments yesterday. So far I feel fine but I know it's coming!

    I just wanted to thank you all for sharing your experiences here - I have filled up an Amazon cart through the course of reading through this thread with all your suggestions for making the side effects easier.

  • Brandi999
    Brandi999 Member Posts: 24
    edited March 2015

    Hey everyone! This is my first post in this thread. I had my first Taxol treatment on Tuesday and my nail beds have already been sensitive for the past 2 weeks so I wonder if I'll be having a lot of the nail issues people talk about. I tried doing ice packs during treatment but it made it impossible to hide under my blanket. I was cold and wanted to hide so it was a no go. I also realized while doing dishes that my hands are super sensitive right now. Ugh! Eyes are dry and weepy at the same time. Right now I'm doing the 30 grams (10 grams 3 X day) of glutamine and I'm going out today to get some Lion's Mane Mushroom from the vitamin store. It's new research and little known but it has been successful in actually regrowing myelin and repairing nerve damage where glutamine works on the prevention side. I do NOT want lifelong (or even temporary) neuropathy so I'm passing that along in case anyone else wants to try it. Don't ask me about dosage though. I haven't figured that part out yet but I'm used to being a guinea pig so it doesn't bother me.

    I'm SO excited to be done with A/C!!! I probably have bigger plans for myself than I can pull off but I'm already able to do more and it's amazing. I actually cooked a real meal last night! Woot!

  • bbwithbc45
    bbwithbc45 Member Posts: 367
    edited March 2015

    My chemo nurse keeps warning me not to touch cold stuff to prevent neuropathy. Yet I read that so many women put their fingers on ice during the treatment. What am I missing?

    I am taking the L-glutamine - 30 grams. Not a fan of its taste, but it's a minor inconvenience if I have a chance prevent neuropathy.

  • Janiner
    Janiner Member Posts: 7
    edited March 2015

    Hi everyone. I have yet to post to this thread, but have been reading a lot. I have  completed A/C and have 12 weekly Taxol's every Thursday. Now I want everyone to know my Taxol story:

    I had no immediate reaction during infusion with Taxol.

    Week 1-2:  Took the usual pre-meds:  allergy pill, heartburn, and steroids.  After the very first dose, I had side effects of usual fatigue on Fri-Sun. Bone pain was extremely intense. Worse than the Nueoprin shots. Over the counter pain medicine barely put a dent in the pain.

    Week 3: Stopped the pre-meds because I had no allergic reaction during past infusions. Side effects remain the same, on vicodin now because the bone pain and neuropathy was so intense.

    Week 4-7:  Onc lowered by dose by 25%. My side effects were above and beyond what he told be to expect. Onc not concerned that it will have any negative impact on treatment plan. Side effects slightly milder on week 4, but by 5-7 weeks, back up to severe pain and neuropathy.

    Week 8:  Same lowered dose. Completed infusion by 4:30 p.m. (Thursday). By 7:00 p.m by face was extremely hot (flushing) broke out with a rash on my chin and lower part of my face. Chalked it up to heat flash. Went to bed and woke up Friday morning with my face, bottom lip, bridge of my nose and eyes completely swollen. DH immediately retrieved Benadryl for me. Took 25 mg and called the onc. Talked with the nurses first and they didn't have much to say for explanation. Finally, in touch with onc. and he confirmed that I was not having breathing issues or throat closure, etc.  and he told me to take allergy pills for the next few days. I took Claritin for 5 days, with the swelling finally subsiding three days later. He set me an appointment with Allergy specialist. I met with the allergist yesterday. He told me I had a severe allergic reaction with the Taxol. Both he and onc were very surprised the allergy came up on my 8th infusion. My onc said he's never seen this before.  The allergist basically told me in no uncertain terms that taking one more Taxol would be too risky, because there is no way of knowing if I might have a reaction so bad that I couldn't recover, or, I could be fine. He said he wouldn't take that risk. Switching to Taxotere wouldn't be beneficial because they are sister drugs and the same risk remains. So that left me with a discussion with my Onc. on what to do. He stated there really isn't any other drug to put me on and confirmed that he thought I would be ok. stopping the treatments. The risk outweighs the benefit now. However, like all doctor's who don't want to be sued, kindly told me that there's no guarantee that stopping early would or wouldn't have an affect on reoccurrence. There's no way to know. So with trepidation, I decided to stop the Taxol treatments. Of course I am happy now to be done with chemo. A/C and Taxol both kicked my butt in different ways. Now I must live knowing that I have done everything that doctor's have told me to do. I would have done the 12 doses if I could have. My life is in Gods hands and this situation is out of my control.

    I still have radiation for 5 weeks to complete. I truly hope that is smooth sailing.  

    Please understand that these were my side effects and probably won't have any bearing on anyone else's treatment.

    Thanks for reading. I guess I felt the need to write all this out because there is still part of me that feels a bit guilty quitting early. I just don't want this to come back (just like the rest of you feel too).

    Prayers, love, and support to all of you.

    - Janine

  • jlstacey
    jlstacey Member Posts: 117
    edited March 2015

    ladies I don't know if you already know about this, so I'm putting it out there. My chemo nurse told me today at my last AC infusion to start rubbing vitamin E and tea tree oil on my nails and cuticles. This is for preventing funguses which can get bad. I started it as soon as I got home- I got vitamin e oil and tee trea oil at CVS.

    Janine- that is an extremely hard decision to make and come to terms with. It's scary! I know you must have a ton of emotions going on. I'm thinking about you.

    Jena

  • Gatomal
    Gatomal Member Posts: 418
    edited March 2015

    Janine, what a scary experience. At this point it's not quitting, it's stoping a particular treatment that could kill you next time. Like your allergic reaction could be so severe, you may not recover. Ever hear the phase the "cure is worse than the disease?" Yourdocs are in agreement to stop. I know it's scary that you didn't have those extra four, that's tough. Even though I did four AC and four taxols pregnant (and the full 8 after) my tumor did not get smaller during AC or initial taxol. It scares me that those powerful drugs didn't get to do their job since the pregnancy hormones were fueling tumor growth. It is difficult now too, being done, feeling like more chemo would be equal to more of a guarantee of cure. But we do our best with the best treatments we have available to us, and just pray and hope that it doesn't come back. There isn't a "cure". We can get to NED, but I think that is the hardest aspect of cancer, living with the fear and uncertainty of recurrence if it's your first time around.



  • Janiner
    Janiner Member Posts: 7
    edited March 2015

    Gatomal...your kind words brought me to tears. I can't imagine what you've been through. thank you for helping relieve my fears. you're absolutely right it is not in our hands I've done all I can do and so have you. I will pray for you and your family that we both stay in NED for a very very long time. Once again thank you for responding. your words are like magic for me thank you.

  • Janiner
    Janiner Member Posts: 7
    edited March 2015

    Ladies.. just stay vigilant on your side effects during taxol. I would rather have somebody complain that I'm a hypochondriac then to be so seriously ill that there's no way to come back.

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