Weekly Taxol group
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Congrats home mom!!
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Congrats HomeMom!
Jaimieh - I developed a rash on my hands and wrists one week after finishing Taxol. It looks just like yours. And it's driving me crazy! Right now I'm just using gold bond cream on it. But I think I'm going to call my MO and see what can be done.
My fingernails are looking awful and they still hurt.
I'm just feeling frustrated that my SE's are getting worse instead of better. My legs still ache and I can hardly walk. My edema has not gotten any better either. I'm still waiting for my taste buds to return. Sigh.
Next week is full of dr appointments and tests. It was nice having this past week dr free!
Hope you are all feeling well, lilyrose
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lilyrose53 I had a bunch of questions for my MO today. One was should I keep taking the glutamine after Taxol is finished due to the fact that some have complained about getting signs of nuerapathy after Taxol is finished. She said I didn't have to. She said the side effects coming off of Taxol to seem to get worse but they do go away.
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lily rose- I am using Benadryl now and it seems to be working
. I take 50mg at might and 25 during the day. My hands are improving quickly. I have npbeen taking the be early for less than two days and my hands are almost back to normal. My nails seem to be getting worse 1 1\2 weeks out of my last taxol. They look bruised and like they are going to fall off. . I am also depressed on the hair front.
. I still see the shine on my head. I have less hair now than I did when I was done with AC. . 0 -
I had my last Taxol yesterday and now I don't have an appt for three weeks! It is just for blood work and a check up. I need to talk to an RO near me that my MO said I could talk to. Just have to find out if his machine at the one near me is better then the one downtown. That will help me decide which doctor to go to. If downtown is better, I'll just stick with the first doc. Hate the thought of 6.5 weeks of fighting morning rush hour traffic.
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Hi Everyone,
I thought I would introduce myself to your group. I'm starting 12 rounds of weekly Taxol on Wednesday. I finished my 4th AC tx last week. It's been pretty rough with constant queasiness, fatigue and taste issues. I'm hoping for a better time with Taxol. I'm still trying to decide if I should ice my hands and feet to prevent neuropathy. I'm already using cold caps, so not sure if I can stand any more coldness. I've been taking L-Glutamine and B-complex for a few weeks now to prepare, and hoping those supplements will give me some protection.
Hope everyone has a nice weekend with few SEs,
Kelly
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PatinMN~
I understand his thought process, as a Nurse, but as a patient I wanted something "gentler". (If there is such a thing)
He said that he is thinking 10-20 years down the line. He said he does not have 10 years worth of stats to give me with the weekly Taxol, but he has plenty of experience with the TCH. I trust him. I can understand him wanting to throw all the guns at this.
Also, since my biopsy, it grew 0.5cm in just a few months, and he feels it's aggressiveness warrants aggressive action. I agree, but I know I am in for a tough road.
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VioletKali, I'm 34.
Finished weekly Taxols last month and am on rads now. Will finish rads at the end of the month. Going on a little family vacay at the end of October for my son's 6th bday and will have my ovaries and tubes removed in November.
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kpmacmill - I was concerned about icing my fingers and toes too. I had DD Taxol every two weeks for four treatments. I thought it would be even tougher then those who take it weekly in lower dosages. I just had my last one yesterday and I can tell you it is a lot kinder to you then A/C. Constipation, fatigue for a couple days and the dreaded taste bud disappearing act. I mixed Glutamine powder with OJ in the Morning and lemonade in the evening for the first five days after treatment and am taking B6 100mg since about 3 weeks before I started Taxol. I have not iced at all and have not had the slightest tingling in my fingers or toes. My nails got a little gray down at the bottom, but not more sever then that.
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I finished w/ weekly Taxol two weeks ago, with mastectomy in two weeks. My eyelashes and eyebrows stayed the entire twelve weeks, but are no very, very thin/ nearly gone. How long before they grew back in? Did others have to use Latisse or other growth enhancements to get them to grow back? My hair started growing back about week six on Taxol. I didn't look so bad, but now I look like a troll with no lashes or brows!
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hello
Joining your group! I finished AC just over two weeks ago and start weekly taxol on Thursday. I didn't do dose dense AC.
I actually tolerated AC fairly well. I am a little freaked out to start taxol though! It seems there is a mixed bag of folks that tolerate taxol well and not so well. Just like everything I suppose.
Anyways, just want to join and say hi!
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violetkali - I'm in my late 30s but with similar diagnosis. I'm being treated at Sloan Kitttering. I was given the choice between ACTH, TCH or weekly TH. My MO preferred I do taxol herceptin weekly based on the study results and certain concerns I made clear were important to me. Also th weekly iSloan's new standard approach to stage 1 her2+. Having read the Dana Farber study and also being that I have a 15 month old to run around after, I couldn't afford to be knocked out of commission. Thus, I chose taxol herceptin weekly. Now that I have done more research as to those women who were in the study, I'm happy with my choice. It is a tough choice to make and only you can decide what feels right for you. You sound like you're comfortable with tch and it will work. Good luck with treatment! May you and all the other ladies here be blessed with many healthy days and minimal SEs.
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HomeMom and Jaimieh,
Thanks for responding! I saw my PCP and he told me to try the Benadryl. I am taking 25 mg at night so I can sleep. During the day I just told myself no scratching my hands or wrists! Haha! It has gotten much better. Yay! The rash is almost gone. My fingernails are another story. Ugh. It seems like they are turning purple one by one and they hurt like mad. Then they look all mangled and lift up. My dr told me today that they will probably all come off. But the good news is that he said they will grow back. I showed him my feet and he said I will most likely lose the nails on both of my small toes.
that doesn't bother me as much as the neuropathy. I can use a computer but have a very difficult time writing as I keep dropping my pen. It's frustrating. But this too shall pass...right?I hope you are all doing well, lilyrose
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Hi everyone- I'm just joining this group (wish I'd found it sooner!), though I had Taxol #9 on Monday and have only 3 more to go until I start FAC. I feel absolutely awful, yet heard once again today about another patient sailing through Taxol while feeling good and continuing everything in her daily life (exercise, carpools, etc). Am I just a big wuss? I have SO many SE's, even ones that aren't common and am feeling down that I've been pretty much out of commission the past 9 weeks! My SE's include extreme lightheadedness that make me feel faint and nauseous (though I've only gotten sick a few times), major body pains that come and go (woke up sure I had the flu last night- so miserable), chemobrain, weakness, blurry vision, rash and heat on cheeks, back of neck and shoulders, dry nasal/throat/lungs with lots of coughing and even a few nosebleeds. I'm sure there's more I'm not even mentioning. I know I sound like such a whiney baby!
HOWEVER, despite what seem like a ridiculous list of issues, I have had a couple of great successes I'd like to share in the hope they'll work for others too. Even if you've already begun your weekly Taxol, these things would still improve your side effects.
1/ Throughout Taxol I've kept my nails cut short, painted black with nailtique base coat underneath, and then I strap ice to them the entire hour the Taxol is dripping (fingers and toes). I have ZERO issues with my nails: no pain, no change in their health or appearance and not even any discoloration under the polish. The ice isn't fun (I literally count the minutes before I can get it off of me!), but it is completely worth it, FYI- I also haven't had any nueropathy, so maybe these things have helped me avoid that as well?? I don't know. Also, I wanted to try a cold cap, but my dr wouldn't let me, because he wants the chemo to run through my scalp as well just to be safe.
2/ I've generously used Latisse on my lashes and eyebrows since I was diagnosed (one swipe across top lashes from end to end, then a couple more drops on the brush to "color in" my brows), and they still look great. I am the only person that notices a slight thinning. The latisse has encouraged quick growth that I know has replaced my regular lashes that have fallen out. I will continue to use it well past my chemo days in order to ensure they don't fall out later. Also, fyi- I have light colored eyes and no issues with discoloration. The only way Latisse would actually affect your eye color is if you used it as eye drops for an extended period of time (per studies shared with me by my doctor).
So, please someone tell me I'm not a complete loser for being so miserable on Taxol other than my successes above, and for those of you wanting to keep nails healthy and lashes and brows, I hope my tips work for you too!
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Texas94 - I'm using cold caps so I can't imagine icing too. I just keep this super duper nail hardener from South America on my nails. Maybe I should paint them black, too. How about your toes? I started Latisse before treatment. If figure that even if they fall out, they will grow back faster. Happy to hear you have re managed to keep yours. I have heard they fall out PFC so let us know how you make out after..
I haven't had any SEs yet except for fatigue and a little sore throat. Then again I only had treatment 2 yesterday. We will see. Praying the next few go well for you.
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It's funny how everyone is different! I didn't ice at all, just took glutamine powder in a drink 2X a day for the first five days and also took B6 100mg every day starting 2 weeks before I started treatment. My nails have some slight graying at the bottoms but look fine otherwise. I used clear Sally Hansen's on them and that is it. My PS office said to start the Latisse 2-3 weeks after I finish (which was last Friday). My lashes are nearly gone and my brows are really thin. I did DD Taxol, not the weekly x 12
Taxol was easier for me then A/C but it did give me aches and pains for a couple of days - plus the usual loss of taste.
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I've only had two infusions but notice before my last infusion that I had a few tiny whiteheads on my face. Then today, day after my 2nd infusion noticed more and more. I thought chemo dried you out, not brought on pimples. They are tiny tiny whiteheads. I had oral steroids for first infusion but only steroids in my premeds this time. Anyone? Help!
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Daniella -
I had the pimples too. My MO referred me to a Dermatologist Oncol and he said it was from the steroids. He gave me a cream which did help. The pimples came on early in treatment. On Monday, I will be 3 weeks past taxol and premeds and the pimples are gone. Hope this helps.
Mary
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hello all, I'm stage 4 so I'm a bit different.
I've been on weekly taxol treatments since Jan 2012. I am 3 weeks on 2 weeks off.
I was trying to find if there are any other long term Taxol patients around. So far, I'm the only one that I know of that had been on Taxol this long. My doctors office tells me that I'm in uncharted waters.
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Txtamsland come and join us on the weekly taxol for stage 4 thread. I've just completed my 49th taxol in a row. My Onc doesn't give me a break between cycles. I've only been on it for a year. Hope I get as long as you from it.
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DaniellaD- I completely agree it would be tough to ice fingers and toes if you're also using a cold cap. Maybe have the ice with you ready to go and put it on and off your nails as you're able to handle it? I'd guess even keeping them cold part of the time would be better than none. On the nail polish, I heard so many times about the black nail polish from other survivors I thought it certainly couldn't hurt. Also, I've done exactly the same things to my toenails as my fingernails, so they're still healthy as well. I'll keep you updated on the Latisse progress, but there is no doubt the lashes and eyebrows I have right now are "Latisse hairs" and not my own (which will make sense if you used Latisse before, because the hairs are a bit darker and thicker).
HomeMom- I bet I'd feel a lot better if I was taking Glutamine (I've heard such good things about it), but my onc at MDA said no (he and MDA's pharmacy team said they couldn't definitively say it wouldn't affect my chemo in a negative way). I know they're being over-cautious and kind of wish I wouldn't have asked and had just started taking it! I've always been very sensitive to any drugs, so it's not a complete surprise I'm having so many strong SE's. I'm sure the FAC will be rough too, but I'm hoping I'll have at least a week during doses that I feel ok. However, no matter how things go for me over my remaining 15 weeks of chemo, reading txtamsland and ShazzaKelly's posts above definitely reminds me I need to thank God every day, even if I'm laid out on my bathroom floor.
txtamsland and ShazzaKelly- My heart breaks for you both. I can't begin to imagine the fight you're in or being strong enough to be on Taxol for such a long period of time. You are true warriors. I feel awful complaining about trying to get through only 12 weeks. Your posts are a stark reminder to be incredibly grateful no matter how sick I feel. God bless you both from the bottom of my heart.
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texas my MO didn't want me taking melatonin because they don't know what the herbs do to the chemo. I asked about taking Nyquil and Robitussin DM because I had a cough and they were ok with the ingredients in those, so my MO is also cautious about what I ingested while on Chemo. They actually gave me a handout if you will explaining how it works to help with body aches and neuropathy. Funny how they are all different, scary at the same time!
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hi! I just got Taxol 5 of 12. I hate taxol. I'd take AC over this. A least I had a week I between AC when I felt sort of like myself. I feel bad all week on Taxol.
But I'm getting a port this week. Yeah!
Any advice on the joint aches? Also, anyone else have cramps like menstrual cramps but worse?
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HomeMom: I agree it's scary how different all the doctors are! In a few years, new studies will probably show everything we're doing now is wrong! :-)
LibrarianB: You and I seem to be in a small minority, but OH MY I hate Taxol too. I'm SO sorry it's hard for you also, but know you're not alone! I think the fact that it's cumulative is why I don't handle well (at least that's my theory due to the fact I've always always been very sensitive to any drugs). I've had a lot of Taxol side effects from the start, even the rare ones, so please feel free to send me a private message to ask anything at all! My one bright spot is my nails are completely healthy and pain-free so far (I've kept them painted black and iced them during taxol). I'm about to have #10 of 12 and could not be happier I'm almost done. I'm glad to hear you say AC was better bc you had a break in between; that's exactly what I've been telling myself for weeks now (I start FAC a week after Taxol). For the body aches, Advil works pretty well and if not I take some of the Tramadol I have left over from getting my port installed. As for the port, it hurts at first but improves pretty quickly (the first couple of times they access it might not feel great). After having it for 7 wks it's only tender, not painful, and if you're thin it sticks out more so is easier to accidentally hit.
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LibrarianB: Oops, I forgot you asked about cramps. Yes, I've had them on and off since the first taxol. I've been told it has something to do with being pre-menopausal and your female parts continuing to try to do their job despite the taxol. I also have very light random spotting, but that and the cramps have lessened throughout the Taxols.
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I had some cramping near the end when they reduced my taxol dose.
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I had my first Taxol treatment yesterday and it went a little rough. I made it two minutes before I felt a flush rise up to my face and my heart felt like it was fluttering. My nurse stopped the drip immediately and everyone came running and put a blood pressure cuff on me and checked my oxygen and started another bag of Benedryl. I had to wait 45 minutes for the Benedryl bag to finish and we tried again. I made it 5 minutes this time before we had to stop. More Benedryl, more steroids. My nurse said this was it, we won't try it again after three times and I would have to go to Boston for "desensitizing" treatment because they don't do it in the local office. I willed my self not to fail the last time because I don't want to go to Boston every week for treatment :-). Third time was a charm! I feel really good today too - none of the nausea I had with AC, so finger crossed for better days ahead. Next week, I will start taking a steroid the day before treatment and I assume they will adjust everything else based on my reaction, so should go more smoothly.
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Kp, sorry your first taxol was so difficult. Next week ask them to go more slowly with the drip. My first few took a few hours for the taxol until they knew I could handle it. Going slow is worth it and I found I didn't need the extra steroids or benedryl. Weekly taxol was better than the AC. I did find the weekly infusions emotionally taxing though. Hang in there!
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has anyone been getting headaches with taxol?
They aren't terrible but intermittent "twinges". Kind of feel like the jolts I've been getting in my toes!
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Just finished my fifth treatment it was another nightmare with trying to find a vein, then having to relocate the iv a few times bc my veins wouldn't tolerate the taxol. I have to get a port. I Knew this was going to happen I keep saying that worrying is like praying for bad things to happen. Then I kept worrying about needing a port. I was poked so many times today plus the wbc stick twice because the first sample clotted. I'm also cold capping so each interruption just adds time to wearing the caps.
Now waiting for the wonderful SEs - D, cramps that are like menstrual cramps but really feel like someone out a vice grip on my ovaries, headaches all the time, tired like crazy but can't sleep, runny/bloody nose and body aches. I hope that's all of it for me...
Hope everyone is well.
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