taxol/aches/help?
Comments
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I've been preparing for side effects of Taxol any way I can, but the one side effect I paid no attention to was body aches. And it's the one SE I'm getting after my first Taxol. All over. Even my feet hurt! Very uncomfortable... Some mild nausea but not as bad as A/C.
And here I was counting on a walk in the park after the A/C
I guess I'll try Tylenol and see if that helps.
I have 11 weekly treatments of Taxol to go -- will this happen every time? Does it get worse? Better? Argh!
Just when I was getting a glimmer of energy back, now I hurt and just want to sleep. Even sitting and knitting doesn't last long because it's just too uncomfortable.
The next person I hear complain about their summer vacation not being "perfect" is going to get an earful from me!
hugs to all....
Carol
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i had a rough time on taxol (bone pain) and especially when combined with the neulasta. it wasn't until i was prescribed oxycodone 5mg that i found any relief. i took 1/2 pill every 4-6 hours on the rough days. i also experienced severe itching of my hands. atarax (hydroxyzine) every 4 hours helped tremendously. i finished two months of AC and then finished taxol on may 1st and all my side effects have gone away.
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I was to do the 12 weekly taxol, but only made it thru 9 before the neuropathy in my arms, hands, legs and feet got so bad that I stopped. My Dad has neuropathy so bad he uses a walker. I did not want to take a chance on it getting that bad and not going away. I has gotten better since quit. I still have some numbness in my feet. May 19 was last tx. I still do herceptin every 3 weeks and it brings some of the leg and knee pains back again. I think it inflames the nerves in those area which have still not recovered. This was the major se I experinced from taxol except the fatigue which got worse the farther I got into chemo. After I quit the next 2 week had almost no energy and my husband said every time I sat down I fell asleep. I am going to be starting rads on July 27. i never needed Neulasta shots. Annette
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I just had my first Taxol on Thurs. and all went fine during the infusion; however, I began feeling as though I was hit by a train on Saturday and Sunday it proceeded to get even worse as the bottom of my feet began to burn and hurt and my fingertips on several fingers are numb, yet tingly. The achiness and bone pain is quite severe and I am miserable. I am taking hydrocodone every 5 hours but it doesn't help the pain or achiness, just knocks me out for a couple of hours, which is nirvana at this point. This is disgusting and I only pray I can make it through this. I am seriously having my doubts. I wish an easier trip for all embarking on Taxol than what I appear to be having.
Linda
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Hey, Linda -- I've been thinking about you and wondering how you're doing! RATZ!!! on all your pain with the Taxol. I don't have it as badly as you do but it still hurts like crazy. And I hate the bottom of the feet thing. I was hoping to resume at least short walks now that I'm on Taxol but if my feet are going to hurt like this, how can I? Fortunately no numbness (I'm taking B12 to try to prevent that, here's hoping...). I've also seen a couple of recommendations to use L-glutamine so I might have to try that, too. How long is your Taxol? I was told since I'm doing 12 weeklies it's not heavy doses so I sure hate to know what heavy doses would feel like. I thought the aches and pains might go away after a few days but so far (my treatment was Wed. and aches started big time Sat.), no such luck. I'm about to call in for something heavier than Tylenol. Sigh. Anyway, my heart hurts for you, girl. Have you called your doc about the burning/numbness? You've gotten zapped hard with everything. I'm thinking of you and sending warm hugs!
Annette, thanks for sharing your experience... I'm unhappy with what I was told ("Taxol will be a walk in the park after the A/C") vs what I and others experience. I guess there's no predicting how someone will react but I wasn't even told about the muscle/bone aches. I can handle this (so far) but it sure isn't what I was expecting. I'm glad you're through it -- hope you're on the up side of things!
And Deborah, thanks for posting and sharing as well. I'm hoping to avoid Neulasta for this round but I'm taking nightly Claritin just in case -- it prevented/got rid of pain with Neulasta when I was doing the A/C. The pain from the Taxol is quite enough! I've made notes of your drugs in case I run into problems... I looked at some of your photos and was so moved by the way your spirit shines through. People say things like that to me but I just figure they're crazy/being nice (I sure don't FEEL like I have a shining spirit!) but when I looked at your photos I really saw it in you. I especially appreciate the mastectomy photo -- I haven't been terribly afraid of a mastectomy (supposed to have surgery this fall) -- but somehow when I saw that photo, I felt so much better about the whole thing. So thank you, tons. Do you mind if I ask why you had a double mastectomy if you're stage I? I don't know if my insurance will cover a double but at this point I'm thinking I'd rather be symmetrical, since I don't plan on reconstruction... anyway, that's a decision for another day. Thank you again for sharing and for your incredible photos. (I love that you smiled before chemo -- I take a self-portrait before every treatment and always have the deer-in-the-headlights look!).
Hugs to all...
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Hello Everyone,
I just finished 4 rounds of dose dense Taxol, and I experienced the bone and muscle pain on day 4 so badly that I couldn't go to work on that day during rounds 2, 3, and 4. It would lighten up after that during the first week and the second week it was fibromyalgia-like. Then I'd have treatment again. Hydrocodone would take the edge off the first week. I also have neuropathy in my feet, hands, across my back and face. Treatment #4 was delayed to allow me to bounce back in terms of the neuropathy in my feet (I couldn't feel my toes after treatment #3).
A couple of things that I found were helpful -
1. My oncologist said that Neulasta was not needed during Taxol, it does not affect your counts the same way - she never ordered the shots for me and I was fine - ask about that.
2. Heat - I slept with a heating pad in bed, and took a heating pad with me to my infusion, since Taxol hurt when in went in the vein (I had a great chemo nurse who figured out we could run it with saline at the same time and that helped alot, but I still wrapped my hand in the heating pad).
3. Wearing supportive shoes and moving around - sitting or lying down all the time would just make me hurt more. I put on my sneakers and kept moving.
4. I used pain medication when it was really bad, but tried not to use it all the time, because of side effects.
Hope this helps - hang in there. I'm just now starting to get my energy back (I finished dose dense chemo July 1) and I feel great - I did everything I could to make sure I finished every treatment, but it was hard.
Michelle
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A tremendous thank you, Michelle - I really needed to read your post. It has put it all back into perspective for me, as I sit here typing with numb fingertips! I think what got me down the most was how hard the Taxol hit the very first time. I could not believe how horrid I felt. Had it Thurs. and by saturday I felt as if I would never be the same again. Then Sunday - continued with the horrible bone pain and overall achiness but then my feet felt as if I was walking on hot coals. I also developed a blood clot in my calf during one of my past chemos I guess, they found it after the Taxol - so I am also doing shots in my tummy for 7 days and getting this dang warfarin regulated keeps me running back and forth all weekend and today for blood tests for clotting factor. You have helped me in that you suffered and felt everything I have this first time also, and yet you picked yourself up, dusted yourself off, and kept on. I will too. Again, much thanks.
Linda
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Carol.
I'm so sorry that you're having such a hard time. I see you're taking the Claritin, that has helped me. Even with that I would experience some lower body aches that would last from about day 3-6. I had the DD 4Taxols, have one left next Monday 7/20. Just a heads up on the Neulasta, my onc said I wouldn't need the shots and I think that is the case for most people (hopefully for you too) but after my first Taxol my blood dropped too low and my second tx was delayed for 4 days to give my blood time to recover. Then they put me back on the shots for the next 2 treatments so that I wouldn't be delayed. I hate the shots but didn't want to get delayed again, had myself all geared up to finish 7/16 and then got sucker punched and couldn't finish then. Would a warm soak in a bubble bath give you any relief? Sorry I can't offer more help, if I read anything on another thread I'll post it here. Just keeping hanging in there and keeping your eye on the prize at the end.
HUGS, Dawn
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What does the claritin do? I'm about to start Taxol and I'd like to know all the little tricks.
Amy_T
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AmyT
Some women say that the Claritin helps with the aches, it has helped me, but others get no relief from it. I had figured what have I got to lose and had started taking it for allergies anyhow. If you don't normally take it daily for seasonal allergies, start the day before tx and then take it for 5 more days. I also use an OTC pain reliever with it, whatever you would normally take. Are you DD or 12 weekly, I was DD, I don't know if that has anything to do with the effect of the Claritin or not. Good Luck. HUGS, Dawn
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Aaaahhh, so there are a few of us out there that have found Taxol to be the "demon", not the A/C. Isn't it funny how cavalier the Oncs are about it? They tell you it will be like a walk in the park and then, bammm, three days later you find yourself in bed for three straight days!!!! I begged my Onc to take me off Neulasta, but he refused - said he didn't want to see me in the hospital, sick, with low white blood cell counts. I got a script for Dilaudid and he encouraged me to just keep taking it through the bad days; don't stop and let the pain get ahead of you. This past time, my knees hurt so badly I could barely walk up and down the stairs, right up until three days ago!!!! Just got my 3rd tx today and the only thing I can say is, remember: it isn't forever- we have gotten this far, we can carrry on until the end! Tammy
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Thanks, everyone... yeah, I can't believe I believed everyone who said Taxol would be so much easier! It's certainly not harder (at least not yet!)
but it's no cake walk!My good news is, today (the day before my next treatment! ARGH!!!) my aches are finally much better!
I wasn't aware the Claritin would help with Taxol aches -- I took it to combat Neulasta aches during the AC, and for that it worked great for me. But as others have said, I've been told I won't get Neulasta with Taxol because neutropenia shouldn't be an issue. I'm still taking the Claritin partly for allergies and partly just in case... but if it's helping with the Taxol aches, I can't tell.
I'm not DD and I'm sure that makes a difference in SE's. Given how much I'm reacting to non-DD treatments, I'm really glad I'm NOT DD!
Dawn, a bubble bath sound perfect... for many reasons (I would love to soak and relax!) but I don't have a tub. I'm plastering those thermacare-type heat things to my back and body instead! Thanks for the hugs!!
Michelle, I agree, lying around too much isn't good, plus I just WANT to move! -- but for me, neither is moving around a lot. It's a fine line. I'm up and doing until the pain gets too bad. I cried most of the way through the grocery store Saturday (kept dabbing my eyes and blowing my nose and muttering "durn allergies" to myself, but I'm not as shy about crying in public as I used to be!) and yesterday by the time I got home from work (all of 4 hours) I was in so much pain I was crying again. So I'm not sure where the heck that line is!
I'm anti-pain meds, even OTC (it's hard for me to even take a Tylenol, let along a script that will be stronger) but I'm also not into being a martry and suffering. So far suffering is winning
but I'm not going to do this for 11 more weeks! I talked to my oncol. yesterday and will probably have them call in a script so I have it if I need it. I can't see spending 4-5 days of every week in tears from pain for the next 11 weeks. One thing my oncol. suggested was trying to anticipate when the pain will hit (one day after treatment, 2 days after, whatever your pattern is) and then taking OTC meds the night before and thereafter to try to keep the pain from getting a big hold. It's easier to prevent it/keep it down than fight it once it takes hold. I like that idea and will be using it this week for sure.
One of the nurses promised that they'd get me through this, and that helped almost as much as drugs. When I'm feeling rotten, it's hard to remember that we will get through this & this will end.
Thank you, everyone, for sharing your experiences/trials/conquests!/what worked for you.
Hugs to all!!
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Carol,
I think keeping ahead of the pain IS key, if you know the pattern now then anticipating it and starting before will probably help out. I wish you had a tub, any good friends, siblings or parents live near you that might. I wish you lived near me, I can sympathize so much that I wish I could give you my tub. Maybe sitting in the shower for a little while with the warm water running on you might give you some relief if you can't do the tub, my DH massages me and that helps too. Just please keep your eye on the end and know that it will get here. I can finally see the light as I'll finish next Monday, but I know how hard it is and sometimes it feels like it really never will. We are all here to support you and send our love and well wishes.
HUGS, Dawn
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Dawn, you're incredible... you know if I got into your tub you might not get me out!
CONGRATS!!! on almost being through this part of the journey -- I'll be doing a happy dance for you Monday!
Today I have Taxol #2 and Herceptin #1 (the "loading dose," sounds lovely), but NO ACHES today so I'm a happy camper! Sheez! Kind of funny, right -- a whole 2 days out of 7 with no real aches and I'm happy! The good news is, if I can get the aches under control, I will feel a whole lot better about the next 11 weeks (not that I'm counting)
Hang in there, everyone! Even when I'm in the middle of my whining and complaining, I know Dawn's right: We'll get there!!
HUGS to all!!
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Carol,
I just checked out your blog - I love it! The pic of the bald girl hugging her kitty is great, I have 2 kids, 2 cats and 2 dogs! I saw that your surgery will come after your chemo, did I understand that right? Will you have a lump., mx, or bilat mx.? I can tell you that I had a bilat mx before my chemo and that was easy compared to the chemo. I hope that is true for you, if so then as soon as your done with the chemo the hardest part will be done for you! I won't be taking Herceptin so I can't comment on that. Just keep looking to September and knowing that you will have tackled the toughest part first, that will be great. I love the the "happy dancer" you know that will for sure be me next Monday afternoon. I hope today goes smoothly for you and take every good minute you can. Keep putting one foot in front of the other and soon you'll be walking out the door! That saying, if you don't recognize it is from a Christmas cartoon that my kids have always loved with Heat and Cold Miser. Good luck to everyone for the rest of the week. HUGS, Dawn
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Carol - Loved both the blog sites. You look great in your headscarves and I loved your photography. Such talent - and a writer to boot! Good luck with the Taxol. Thinking of you.
Linda
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Thanks so much, Linda and Dawn! I kind of want to blush and say something like, "aw, shucks...." I really appreciate your compliments.
Photography is one of those hobbies that grounds me and I miss not having the energy to get out for walks and play with it more lately -- but soon!
Dawn, I was given a choice of pre- or post-chemo surgery; opted for the latter, truthfully mainly because I thought I would be emotionally more prepared for it later, but the medical reasons are that the prognosis is the same either way (at least in my case), and also that it allows them to monitor the lump and see how it's responding. There's a slight chance that the lump could shrink enough to go from a mastectomy to a lumpectomy but I'm not counting on that. And that's really all I know... I almost (in some ways) wish it would be a double mastec. so I won't be lopsided
but I'll cross that bridge later. Herceptin should be OK -- or so I'm told (ha! like I was told Taxol would be a walk in the park!) It's biological and targets the cancer receptors so it doesn't affect the entire body the same way, although like adriamycin it can cause heart damage. I will dance for you Monday one way or another!! but I'm hoping to nip the aches off before they make me cry this week!
And I don't know that Christmas cartoon but I love the line! I think I'll have to see if I can find that DVD....
Linda, hope your own Taxol/weekend goes well.... do stay in touch!
Hugs, hugs, hugs!
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I'm holding you close to my heart and hope that your se's are minimal. I go back to the warfront for the 2nd taxol next thursday, the 23rd. Hang in there!
Hugs,
Linda
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I'm doing the 12 week, once a week taxol. I saw that many people were getting relief using l-glutamine. I picked up some of that at the health food store and it seems to help alot. My oncologist also suggested Mobic(or generic Meloxicam) which is an NSAID similar to ibuprofen but seems to work better without the sedating effects I have from 800 mg ibuprofen. The combination has me functional again. Last night I tried taking a hydrocodone and I slept wonderfully. I think that's the first full nights sleep I've had since all this started!
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Hi ya all...I just did 2nd Tx yesterday... had a hard time sleeping last night and had alot of heartburn...and yes I did take zantac...lol Feeling a bit better today but it could be the steroid buzz. Just a note... I had trouble with my wbc's after first tx and a gal from Australia on another thread said her onocologist suggested eating strawberries. I have eaten so many strawberries in the last couple of weeks! lol My wbc was back to normal yesterday sooooooo the nurses said keep eating them! (((((((hugs))))) to all and good luck with SE's ladies...hopefully minimal if any.
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I just want to chime in and say I had horrible pain with Taxol, in tears for a couple of days after each treatment, but it worked. It melted my tumor, and when i had surgery i had no cancer in my breast or nodes, (and four pos nodes before chemo) so hang in there, I'm sure glad I did
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Hi Everyone,
Just wanted to check in and make sure you're all hanging in there. I finished chemo on Monday 7/20 but just wanted to pat you all on the back for keeping up the good work. Keep fighting, the end will get here for all of you. Thanks for all your support and encouragement to help me make it through I hope I can offer some back to you. HUGS, Dawn
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Everyone -- it's so good to hear from you!
Linda, today's your day -- hope it all goes well! You're getting DD, right?... that has to be so hard... I'll be thinking of you and sending healing thoughts all day!!
I had my 3rd out of 12 Taxols yesterday... reduced steroids because I have swelling (sooo lovely!) (chemo has to knock our egos down along with everything else, I guess!)
but the chemo itself went fine. But my aches started last night instead of waiting until Friday, and although I'm happy to be on reduced steroids, I can already tell my day of energy (today) will be slower. Argh! I'm armed with walking and yoga this week, along with nighttime (I put the nighttime restriction on them!) scripts and daytime acetaminophen, so maybe I can get a handle on the pain and make things easier from now on.Amy, I'm on l-glut amine now, my oncol. and NP said they recommended it for years but got such mixed results (it helped some people but didn't help just as many) so they don't push it any more, but don't discourage it if you want to try. And it's something I can do for myself, so why not? I agree, the hydrocodone is great for helping sleep! and pulls the pain way down for several hours after it should have worn off, reducing my need for acetaminophen during the day. As much as I don't like drugs, I have to put in a small cheer for them this time!
Arnie, glad the strawbs help with your WBC! Mine has been OK and they expect it'll stay that way, I hope so... fruit is one of the few things that tastes good to me right now so cf course the acids in most fruits burn my mouth. ARGH! again!
fightin', thanks for sharing your story! I've been so discouraged lately with all the SE's, I've been having a hard time with hope, but your story helps!! I'm going to bed each night visualizing those cancer cells melting away...
And Dawn, gosh, you've offered support and help back to everyone since I first started reading your posts. I have no doubt you will continue to do so! You've been a bright spot for me, that's for sure. I'm still picturing a bathtub out in the mountains of VA somewhere, miles from anyone, lovely views in all directions... kind of like those viagra commercials but without the man... no, wait a minute, maybe I should add him
I'm so glad you're past the chemo!! ENJOY your rebound from that. And go practice some cartwheels! Hugs, all!!!
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Hi Carol - and to all others too!
I just got back from my onc's office for my 2nd Taxol and they suspended it for another week as they are most concerned with the neuropathy in all of my fingertips. Since I am a legal asst. her exact words, and she also brought in another onc that specializes in breast cancer only, and they both said, we are attempting to wipe out cancer for you for the rest of your life and not put you on total disability as well. They are waiting another week (next thurs.) to give me the chemo in the hope that my neuropathy will get better. My feet have gotten much better, although still a bit numb in my toes, but the fingertips are still just as numb and oftentimes tingle as well. They also said they are stopping the Taxol and will replace it with Taxotere instead. I was a bit disconcerted by that as from what I have read from other gals on these boards, they also suffered from bad neuropathy from the Taxotere as well. When I stated this, I was told yes, it can cause neuropathy, but is not as bad as Taxol for the neuropathy. Go figure. So, I am now a week behind schedule and have to wait until Thursday for chemo #2. Hope all goes well for you this round, and know that I am thinking of you. There really, really is an end, huh? Sometimes I wonder!
Edited to add they also did Thyroid testing, B-12 and B-6 testing (which I don't think I had at any time since beginning this journey, not sure) to see if anything shows up there that might show why I got the neuropathy right away and still have it. Anxious to see what that turns up)
Hugs,
Linda
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I am on #10 of 12 weekly taxols. My side effects have included neuropathy, fatigue, some bone pain, and a blistery rash on both hands! Neurapathy has been in my hands and feet and started going up toward my knees which was scary. I then skipped #10 and had it a week later. The rash went away but my hands and feet are slightly tingly and numb. I can still do most things but afraid it will get worse. Am thinking about stopping taxol and not having 11 and 12. Over the last 2 and a half weeks, I have developed a raspy voice much like laryngitis but it doesn't seem to want to go away. Has anyone had experience with this symptom? I keep thinking that I have nerve damage to my throat.
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Jane108 - I will have #5 of 12 weekly taxols tomorrow. I've had a raspy voice since Monday (today is Thursday). My nose started dripping right after each treatment for a couple of days. This week I feel pretty stuffy-nosed. I thought maybe I was just having some sinus problems. I'll have to investigate further - maybe this is a SE of Taxol.
Last week I showed the nurses an itchy rash on my arms. They called out my onc who thought it was a reaction to Z-Pak I'd been on that week. Went off Z-Pak, had extra dose of Benadryl and steroid with last week's tx. Itching stopped, but still have the rash. I'm anxious to see tomorrow if they still think it's from Z-Pak or maybe a SE from Taxol that I haven't heard about.
Anybody else have a rash?
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In my experience it didn't get worse just different-first in the back then in my legs. Hot baths, advil and an a PRN of a pain med helped. Communicate with your doctor if it becomes too uncomfortable.
Hang in there.
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Taxol effects the mucous membranes in your body; therefore raspy voice is normal and so is runny nose. All side effects of the medication. Vocal cords are two membranes and sinus area made up of membranes. Unfortunately all part of the deal with getting this type of treatment. Hang in there, I am right with you with the raspy voice.
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I have the raspy voice. Part of the treatment since taxol effects the mucous membranes and vocal cords are made up of those elements. Not heard anything about the rash however I have the tingling and numbness in my hands and feet. All of these symptoms go away after treatment finishes. However if you can't button a button then tell your doctor because they might need to change your treatment. Try and continue you with the recommendations of your doctor especially if you are going to specialist that are associated with clinical trials and a university. The doctors are normally on the cutting edge for treatments.
Hang in there. I am right there with you experiencing some of the same things.
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I think it would be nice if we were told of ALL of the possible side-effects of the Taxol. I had a much easier time with the AC. The only place I have seen about the raspy voice is on these boards, also some nose bleeding. It keeps me wondering what to expect during my 2nd half of Taxol. Are there other side-effects I don't know about? I also have thrush and sores on my tongue from the Taxol. Only had a very small problem with that with AC. I've had this for over a week now and am on 3 meds for it. You would think with my mouth being so sore that I would be losing weight, but I guess it hasn't stopped me from getting all my calories! Shucks!
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