Taxotere is a nightmare
Comments
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Thanks Betsy. It's on my list of threads to check for more tips.
I'm going to be going through TAC all at one time - once every three weeks for six weeks. Has anyone else done that? Should I brace myself for even more trouble dealing with all three at one time?
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I had TC once every three weeks for 6 dx ... so you'll have TAC? Same as ACT? adriacycin, cytoxan and taxol??
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Rachel...there are a couple of gals in our Sept Chemo group that are doing TACx6. Check out the thread to see what they have gone through. I just finished dd taxol x4 and am moving to ACx4 tomorrow. My SE's from the taxol were mild neuropathy in the feet after #3. No biggie for me..like bdavis it was mostly at night and not the entire foot. Very slight in the fingertips. Ac is scaring me!!
Maggie
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Adriamycin-cytoxan-taxotere x 6
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ok.. so you are doing ACT/TAC but with Taxotere not taxol... Taxol causes more neuropathy, taxotere has more nail issues, but icing the nails during taxotere helped me 100%.
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Exactly. Thanks for the tip about the nails. This is going to be tough - I've been a nail-biter/cuticle puller all my life, although every once in a while I'm able to stop for a bit. I'm thinking of getting soft gloves to wear throughout this as an extra precaution.
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rachlvk - I also iced and other than softer nails from the herceptin (I think) I didn't have any trouble.
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I just had to say it again.
F*******************Taxotere!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
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rachlvk do the icing! as someone who not only had the problem but got it really bad I must say it was probably the worse SE I had. One of my toenails is permanently ruined and I still have many of my fingernails lifted. Not sure if they will ever get better. I still have to wear nail polish because the nails still look crappy. I was not a nail polish wearer before.
Its not a common SE but some of us do get it.
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I bought 2 pairs of antique white gloves over the weekend to wear at work. I figured I might as well do this in style. That will also help with the germs issue - we all share computers and my co-workers haven't picked up some of the basics about not coming to work when you're sick, etc... though my boss has issued a pretty stern warning now. And I'll stock up on frozen peas.
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Rachel... I reused the same 4 bags and then chucked them when I was done... Bags of peas during the TAXOTERE infusion, and Sally Hanson nail hardener all the time, and keep the nails short... And I bought the Bryan Joseph lash/brow gel...and used it everyday.. It did lose my brows, but never lost my lashes... they thinned a little, but always had something to put mascara on... now, 7 months later, lashes are normal, and never had the second cycle of losing them, nor the brows... They came back in June/July, and stayed.
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bdavis, how are you doing? How have you been feeling since your surgery?
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I am doing well...have had 3 major surgeries since July (last one was 3 weeks ago) and feel good... I have been crazy busy at work, so am tired, but its not related to the surgery.. Thanks for asking!!
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Tomorrow will be one month since my last dose of Taxotere, and I am still completely messed up. I wish I could undo it.
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What's going on windlass?
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windlass , taxotere is so awful.... It took me a few months to come out of the haze.... I still have chemo brain uuughhhh... I started working out at curves a month after I finished , that helped me a lot. I wish you didn't have to go through the dreaded taxotere side effects. I finished back in Feb. and today I went for pre-op for my exchange surgery and I feel great , I actually feel healthier than I did before the big C. I swear you will feel normal again soon....I will keep you in my prayers for a quick recovery.
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Windlass,
I am now 10 weeks past my last chemo (taxotere), and I feel pretty good. But, around weeks 5 and 6 I couldn't believe how crappy I felt. I seriously thought I had wrecked myself for all time. Taxotere takes a long time to get over, and for some (like me), it gets worse before it gets better. It does get better though. Hang in there. -
Betsy - Silly question... is there anyway to use the bags of peas for toenails? Is it worth it?
Tracie - Chemo brain really has me worried. I'm trying to figure out all the things at work that I might wind up having trouble with, and it's scary. Ironically, I'm going Taxotere because my onc wanted me to avoid the potential for neuropathy from Taxol because I play violin. I just hope I still know how to play when this is all done.
I start Tuesday.... Let the countdown begin. (Together with A/C, all the same time)
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Hi Ladies I am 4 weeks after Taxatore still feel like crap I am having pain in breast area and clavical area the bone the pains just started a week ago has anyone else had these S/E after finishing chemo ?
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Rachelvk,
I took a pair of old shoelaces and tied the bags of peas over my toes. I didn't do it the first round and regret it. My big toenails are starting to lift a bit. I iced my fingers in bowls my nurse provided each time. No nail problems yet. Nor any neurapathy. I had my 4th and final T & C today.
Good luck!
Susan -
Taxotere kicked my butt! It was way worse than FEC. I am 5 1/2 months PFC and still getting over the SEs. I got a terrible fungal infection all the way through my entire GI track. I developed really painful, itchy dry eyes that I still have a lot of trouble with. Did you have dry eye trouble? What helped/relieved you the most? I have used the artificial tears, but it doesn't really help very much.
rachelvk...I got hand/foot neuropathy from taxotere. It is getting better, but not completely resolved yet. I had not found the boards at the time I was having tx...no one at the cancer center told me about icing toes and fingers...I have read here that it helps with the nail loss issue as well as neuropathy. They did tell me to suck on ice chips during infusion to reduce the chance of mouth sores and it did work. Good luck to you!
I consider myself lucky that I did not have bad nail issues. I did develope some deep indentaions that went from side to side all the way across the nails. Luckily, they did not turn black or fall off. The indentations have grown out and been cut/filed off already. I did keep my nails cut/filed short because they were very weak and would bend back easily, and that hurt!
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FL Warrior,
I have had really watery eyes since #3. I asked during my infusion today and my nurse said to use lubricating eye drops. She explained there are two types of tears....oily and saline. The chemo is drying out my oily ones so saline is over producing. She said using lubricating eyedrops at bedtime should help.
It is really like playing SE roulette every morning. I never know what I am going to encounter that day. I have kept a journal but no two days are the same. Chemo.......the gift that keeps on giving, in more ways than we can count!
Here is hoping ten days from now I am able to get on that plane for a family trip to Hawaii!
Susan -
I just completed 3 cycles (every three weeks) of FEC and will start Taxotere only on Monday for 3 cycles (every three weeks).
I have read of the side effects, but what have you been experiencing? How soon do the side effects start? I am planning a short trip 6 days after my treatment and I am not sure what to expect. I really would like to make the trip (to see relatives) for my daughter, but I am worried about how I might feel.
Take care!
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My wife is Stage 1a 3.5 mm IDC HER2 positive ER positive. BMX was October 14th. Because of HER2 positive, she will start Taxotere Cytoxan Herceptin on December 20th every 3 weeks for 4 treatments then Herceptin every three weeks for a year. Some of the posts about side effects are scary to read. Do you have general advice for me to give my wife as part of the pre-chemo preparations and pre-meds? Thanks a lot in advance. BlairK
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wow, glad I stumbled into this topic. Taxotere sucks. Still have numb toes, achy calf muscles, nails lifting from beds. Not to mention the mucositis I got first two rounds (horrible diarrhea). Here I thought I was doing 'chemo light' because of no A, and thinking that T might be worse!
Blair, get your wife some really good moisturizer as the drugs dry out your skin horribly. have tylenol in the house as its the only thing most MO's will let us take. Pick up some Biotene mouthwash, it works wonders. Have her chew ice during T infusion. Ice fingernails and toenails with a bag of frozen peas each round. Buy some Imodium to have around just in case. Encourage her to hydrate like crazy, especially during and the first 3 days or so after tx. Our Sept 2011 chemo group got to be quite large, and has many many tips.....check it out and good luck to her. Thank you for being so supportive of her, please continue as she is going to need it.
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Shelly I too have several nails still lifted and this cold weather brought back the numb heel although not as bad as last year. Some of us take a little longer to have things get back to normal than others. I was still retaining fluid 7 months later! I finally went off the diuretic in September.
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Rachel... I sat in a recliner at infusion, so I just laid the bags over my toes... When I went to chemo, I would bring a small cooler of drinks and my peas, with ice to keep everything cold... and I would bring a fleece blanket to stay cozy. I never ever had nail problems... My eyes would tear for the time I was doing chemo, but when I finished it stopped tearing... I had a little neuropathy in my feet while in bed of all things... started taking Vitamin B-50 and it went away. I used Biotene as a mouthwash everyday... never had mouth sores.
And for Normandy... I went to St John USVI for 10 days between my 3rd and 4th infusion... I was hairless, but felt fine. I planned it so that I had chemo and left about a week later, so my time away was week 2 and 3... then came back and had chemo like the next day. The not great day for me was like day 3-5... in there somewhere. So if I had chemo Tuesday, and Neulasta Thursday, I was not happy Friday... Otherwise, I worked fulltime and felt ok.
I think drinking a lot, and taking the steroids is important... my infusion day included more steroids, benedryl and anti-nausea meds.
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Rachelvk, if you are a musician, taxotere can destroy it. I have been unable to play piano for over a year due to neuropathy, and had planned to play some other instruments in my retirement, as my mother does. I also wish I could undo both drugs and surgery - am pretty discouraged a lot of the time, but there are other times that I am enjoying some aspects of life. I am very angry with my MO sometimes because she did not listen to me when I first had symptoms - right after the first infusion I had tingling in one finger and my face and teeth felt very strange. She insisted on full dose for #2, after which I developed SEVERE pain, but it got a little better, so she delayed #3 and reduced the dose, and that was the killer. So I guess I am encouraging you to pay attention to your body and don't get pushed into continuing the drug if you you have ANY problems. That being said, you will find many people who get other SEs or very few. I read recently that there may be a genetic test in the future to help figure out who will get the neuropathy, but it isn't validated yet, so won't be available for a while. About 60% of women will have minimal neuropathy, about 5% will have severe neuropathy.
Nice to see some of my old buddies here - hope things are going well for you Tracie, Omaz, Lago, bdavis, FLwarrior, and anyone I have forgotten to mention.
BlairK, the Biotene mouthwash is incredibly helpful. Be prepared for her to feel pretty good for a couple of days after the first round, but then have really major fatigue. She may not feel like even getting herself up for fluids or food. And the two of you should work out some way of making sure she takes the meds she is supposed to, and doesn't take too much (easy to do if she is sleepy or foggy and in pain or discomfort). Using a diary or checklist or pillbox can be very helpful for regular meds, but writing down when she takes the "as needed" drugs is probably better so you know when it is ok to take the next dose. Come back here anytime as you get into the chemo phase - there is a lot of support here, and if your wife is able to participate here, she may also find support. Keeping you both in my heart tonight.
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Hi Linda - I wish your onc had listened to you. My tingling started in my feet right after the first infusion too. I hope you get improvement to play the piano in the future.
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I had some weird SE, like tingling teeth, and it came and went... and then about 6 months post chemo, my teeth ached. I used "sensitive" toothpaste and it went away... I believe al ot of this stuff can take a while to getout of our system, and hopefully none of it is lifelong.
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