Weekly Taxol group
Comments
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Tri I do think that is muscles pains it is part of taxol SE, I took g-glutamine 30 grams a day, it helps. Also I take vitamin/6 and 12 also.
Sammi, be careful for the weakness on your leg, some of us became more clumsy during taxol, I was one of the person, I slow down when I walked the stairs and I always dropped thing also. I stopped at taxol 9 due to neuropathy.
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Hi Tri-lady,
I have gotten whole body aches/soreness and Claritin is helpful along with the regular pain relievers.
Nonahope- I'm sorry to hear about your progression as well. 😢 My daughter's friends mom got bone mets from BC a few years ago. Shes been doing well with treatment and hasn't missed a beat. I didn't even know until I told her about my BC.
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jamorcar- My side effects don't sound quite the same as yours, but I do notice my legs get very fatigued whenever I stand up the first few days after each infusion. It's almost like I just did 200 squats and my muscles feel tired and a little shaky. Add it to the list of strange taxol side effects I guess.
People talking about dose-My taxol does was at 150 (Im 5'8" 160ish lbs), but due to the neuropathy they dropped it to 135. I guess I am not sure how that really compares.
Sammi-Thanks for the advice on the constipation!
I had taxol number 9 yesterday. Only 3 more to go. So exciting! So ready for some hair again!
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Thank you Nonahope, Paulette and Shay 76! I will try those suggestions. I didn't have many SE's prior to this so I want to try to control it. Thanks!
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Sammi...Thank you. I'm doing ok, even with the progression. It was rough in the beginning when I was first diagnosed.
Shay...Thanks for those encouraging words about your daughter's friends mom...I try to stay positive and not let cancer define me...so far, so good. I've never been given a time frame -- only that it's not curable, just treatable. So far, so good.
Enjoy your Sunday...will be watching some football today!! How about you?
Hope
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Hope .... Hugs! Cancer sucks!
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Paulette...Thanks! I couldn't agree more...cancer sucks big time!
Hope
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Hi Jennifer - I have been having a terrible time with Taxol. Last night I had so much fiery pain in legs and feet I couldn't sleep. Finally took three Advil PM and a Claritin and that did the trick. Today I'm worthless. No energy, no get up and go. Promised my new husband that one day in the not too distant future he will have a normal life with a normal wife. Anyway, hoping that as the days go on this stuff recedes like it has in the past. The side effects are getting worse as treatment progresses. Only one more to go at the end of the month. I'm actually glad to have 3 weeks between doses as it gives the body time to recover a bit before being hit again. My feet are definitely numb and having a little bit of hard time walking properly. Last night I wasn't sure they would hold me up. Fingers numb too but not too bad. I just can hardly wait to get this part over with!!
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I just finished my 6th / 12 weekly taxol on Thurs. Though my SE haven't been as bad as AC I am starting to see a pattern with my Taxol. Day 1 & 2 are great, Other not being able to sleep, I feel like Super Woman!! Very high energy. Then day 3 when Steriods wear off I do a big CRASH!! Body aches, fatigue, depression, feeling grumpy. I kept thinking, "But I felt so good yesterday
" Day 5-6 gradually gets better. Sometimes I just have to remind myself to bear with the bad days, another good day is right around the corner. Even though the SE of chemo sucks, it is killing the cancer.
My white peach fuzz on my head has hung around now through 2 treatments (usually mine fell out after each chemo). Hopefully it is here to stay.
Eyebrows and lashes fell out once but are growing back quickly. Wonderbrow has worked great! I love it, thanks for the tip who ever posted it. Any mascara with fibers helps fill in the thinning of eyelashes. Still working partime, I start early so I don't have time for false lashes in the morning.
Tingling in fingertips & toes not painful. Nails on both big toes lifted about halfway.
Keep fighting Ladies!!! Here's to a great weeks with less SE
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Gussy...I imagine your side effects are much worse having the treatments every 3 weeks, rather than weekly. Hang in there. Like you said, one more and you are finished and we can all do a happy dance for you....and DH.
DKK...Your side effects are similar to mine...day 3-4 is when I get the achiness. So far, that's the only side effect. We will see what number 7 does on Thursday.
More snow for us in Ohio...on a winter advisory until 7 pm tonight. I have no place to go until chemo on Thursday and I think all will be good by then.
Hope
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Good morning ladies - having slept for 12 hrs last night plus two 2 hr naps yesterday, am feeling some better today. Not much energy and feet are pretty numb however. I'm hoping that I'm starting on the upside today. With all that has gone on lately, Christmas tree and other decor are still gracing my living room. Got to get to it.
Has anyone ever had their dose reduced due to side effects? I am seriously considering asking the MO if she would reduce the last dose as the side effects this time were so bad. I would hate to think that any of these symptoms would become permanent. I don't know if the last dose makes that much difference anyway. I would think that whatever the poison is supposed to do would have done the vast majority of what it's supposed to do by now. Anyone had that experience?
I sure do appreciate everyone's responses. Having been told that Taxol would be a piece of cake after A+C I am really a little p.o.ed. My husband and I went ahead with our wedding plans after I checked with the nurses re: effects. Had I known it would be this hard I might have postponed the wedding till all was said and done. I hate the thought that I'm putting him through this awful experience although he says he wouldn't change a thing. What a guy!
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Hi Everyone,
Tomorrow is my last taxol.. I was doing fine until #9. The neuropathy and fatigue were really bad this week. My oncologist doesn't seem concerned since I have one treatment left and all else is okay. This week my husband is having spine surgery and won't be able to drive. Thank goodness my son will stay with us for 2 weeks.. Hubby and I having been managing on our own since I was diagnosed. Can anyone one tell me how long after last treatment until strength starts to return? I hope I have 3 weeks before I start radiation.
Nonahope - I'll pray for you to have strength as you continue treatment. My best friend(BC survivor) told me this is a fight but it wasn't until the SEs really took hold that I understood how hard this is.
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Gussy....I imagine you are getting dense or double doses of chemo every 3 weeks. I would ask if they would consider spreading out the last one to once a week for 2-3 weeks. I bet that would help a lot.
bjquilter...Thank you. Yes it is definitely a fight...but with support of family, friends and these wonderful boards it is doable. I don't dwell on it. It's become a "job" that I hope I have for a long time.
Hope
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I have reduced my taxol due to neuropathy, Gussy, please tell you MO about your feet numbness and be careful. Because you might fall and hurt yourself. Beside neuropathy could be a permanent damage as my MO told me,
In our group many of us got hit really bad on the last chemo. Take care yourself on your last one, so many of us ended up really sick. We are warriors and We fight hard!
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Tri-Lady7. Yes, yes,yes. I had the aching quads beyond. It passed for me post- taxol. I was doing gentle yoga and standing poses around that time, so I chalked it up to that. But like, it was so intense for me, and I’m a yoga instructor, so I was like what the heck? It should not be affecting me to this degree?
bjquilter- I’m going to be post-taxol six weeks this Wednesday, for me STRENGTH started to return about 3 weeks post taxol. But I sleep so much overnite, no need for naps. It’s a different feeling than being exhausted to walk, exercise, or do stairs that really hit me during taxol. Now it seems, I just must sleep in.
Someone said this before in this group...this Taxol is “very tricky!” I concur! It’s great to hear participants upon this most unwanted journey, to just shout it all out!
Strength and healing to all of you!
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CBK, I think I said taxol is unpredictable, I don’t think it was hard as AC, but every infusion is a little different SE exacept neuropathy. Do you have neuropathy problem?
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Gussy, I had my Taxol reduced 25% after the 3rd one because my fingernails felt like they'd be slammed in a car door. Since then, I still have some neuropathy in my fingers (but I'm able to shuffle a deck of cards and pick up small objects), and after #7 my toes started getting numb.
I have an appt with my MO on 1/24 and I'll ask him about stopping after 10 instead of continuing on til 12. My fingers and nails are a mess! And my whole body is so dry, especially my sinuses, that I'm picking up all kinds of viruses.
DKK, I can relate to your cycle. I'm a whirl ball of energy the day of infusion. Then halfway through Day 2, I crash. I've learned to take a second dose of Pepcid at noon because I vomited a few weeks ago on my crash day. Day 3 (Sat) is a transition day for me. Days 4 and 5 I actually feel human again. Day 6 is strangely not a great day, and I'm beginning to think it's psychosomatic because I'm dreading having to get another round of Taxol the next day.
Lord, 20 weeks is a long time for treatment! I want my hair back!
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LisaRxCincinnati--I also get nauseous occasionally from the taxol. Has yours been like that the whole time? Mine was this time and a couple other random times, so I've taken zofran. I had infusion number 9 last week, and it's definitely starting to get quite tiring. So glad I only have 3 of these left. Also, I feel you sister! I am ready to get some hair back!!! Even a solid, fuzzy centimeter of hair will be great. Being bald during a Minnesota winter doesn't help, as I'm sure frozentoes can attest to. Oh, and the dry sinuses. My nose is constantly bleeding. Taxol is so much fun!
but...
we are making it through this, ladies! For everything there is a season and just as this winter will pass, so will this season of chemo. Prayers and love to you all.
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I too had to have my weekly taxol reduced after my first treatment. Started at 140 - down to 120. My SE were so bad had to go into er twice in one week. ThIngs have been much better, usual se like fatigue & body aches. On the other hand I worry that it is notstrong enough to kill the cancer. I even asked my MO to increase it again but she says I should be ok.
Just wondering about my white peach fuzz on my head....... Does anyone know if it falls out or does it turn dark like the other courser stubley hair growing in ????
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Hello to all here, I'm writing this with a question regarding my wife. She had written here some time ago when she was going through chemo (AC and Taxol, 2015-2016) and ended up with horrible neuropathy and edema. I keep an eye out here for information as her Neurologist said she has permanent nerve damage (the result of 60+pounds of fluid retention which is gone now). My question here is very simple so please go easy on me. What is an "MO" which I always see. Again I am her husband just always trying to keep updated on the many different postings here, I hope this (being a her husband) doesn't offend anyone here, I would never intend to do that. Thank you for any help.
Bill
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CIW, I thought I had nausea also, but i didn’t have that problem on AC. Later I discovered because I didn’t eat. As long as I got food in my stomach I feel fine. The acid made me stopped eating.
DKK, some of the people hair actually started growing, you are the lucky one. It didn’t happen to me.
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PauletteK- YES, I’m struggling with Neuropathy, thank you Taxol! My dose of Taxol was reduced on taxol 8. I am on B6 and B12 and improving. And finished off to Taxol # 12.
Any words of wisdom is appreciated. I don’t have balance issues. Just numbness, pins and needles, and sometimes pain.
But ohh I just want to sleep overnite. Not like me.
All my bloods are beyond in normal range. Just had ekg and more comprehensive bloods that show all my organ functions great. Besides slightly low wbc still, nothing out of range. Hemoglobin actually perfect
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Hello, Taxol ladies,
I've been reading helpful info here and thought I'd introduce myself. I'm headed for Taxol #3 on Wednesday, and I've had similar GI side effects - nausea, constipation - to some of you. My big and next toe are feeling numb, and my fingers feel calloused. I seem to have lost my fingerprints; can't open my phone without numeric code anymore. I don't do well with steroids, but now I take oral doses the day before, day of, and day after taxol. I had some kind of reaction to T#1 and they had oxygen on me quickly. My asthma had been under great control . . . but it's scary having trouble breathing with that in your past.
I'm 5'9" and weigh 180, so my dose is 162 now. I have added carboplatin once every three weeks, and this past week my HGB was so low (7.4) that I had my first blood transfusion of two units. It's helped so much.
I'm supposed to have 12 T, with 4 of them adding carbo. Then 4 weeks off prior to surgery. I appreciate all the encouraging words you/we share with one another. We CAN do this! It's a long path, but we CAN get there! And yes, we have a snow warning here in GA which means it's really cold and no one will drive who doesn't have to
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Hi Bill,
MO stands for Medical Oncologist. Somewhere on this site there is a list of abbreviations, but I don't know how to link to it.
Sounds like your wife is a fighter to have been through so much. Hope she continues to be strong...we will pray for her!
Feel free to post anytime. We are here to support one another, and she's very lucky to have such a caring husband and caregiver.
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CBK, congratulations!!! You done it!!!
Paula lately I found Kiwi or dragon fruit are so good for constripstion, I got finger prints problem when I had AC, taxol improved. But your finger tips might be dried up isn’t it? Many ladies in August and July chemo thread ate livers to gain RBC, so do I.
Bill, how’s your wife doing now? How bad is her neuropathy?
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DKK, acc to the ladies on the Hair thread, the white peach fuzz stays, but eventually turns into normal hair. It's almost like the hair is testing the waters before poking out.
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Hi Paula in Atlanta - I'm in my 70's and about your size and was diagnosed late June with a 5.1 cm mass that has never shown up on mammo or U.S. Only when axillary nodes showed up did I have an MRI which turned up the tumor. Very strange. My breast surgeon thinks it has been there for 10 years so must be fairly slow growing. I've had 3 of 4 Taxol treatments which have driven me over the edge. The last one gave me an all over burning in every joint and now neuropathy in feet from the ankles down and finger tips. The first dose gave me Hand and Foot Syndrome which resulted in the skin of my palms and fingers peeling with lesser peeling on the feet. Now, I'm being treated for atrial fibrillation which the heart doc thinks is due to the chemo as well as I have no prior heart problem history. Have had 2 cardio-versions also lots of meds. Interestingly, the anesthetist that I had today told me that she has seen many breast cancer patients with this same problem. I'm starting to feel better in that regard but the other is driving me nuts. I see the oncologist next week and I'm either going to have to have her reduce the dose or skip it all together. I, too, will have surgery (lumpectomy) probably in early March. BTW - the tumor and nodes have shrunk at least 50% which is the good news.. I sailed through the 4 rounds of A+C so this Taxol thing has been especially vexing.
As for nausea - none. To keep the bowels moving it's Metamucil cookies with a cup of coffee in the a.m. and two Metamucil capsules at bedtime. So far, has done the trick although if I miss a dose I might have to take a Dulcolax pill. There's always prune juice, Miralax, apples, etc. High fiber anything is good.
Yes, we will get through all of it somehow. Meanwhile, life is not normal by any stretch which perturbs me no end. Has messed up my lifestyle even though I managed to get married two and half weeks ago. He's a great guy to take all of this on. But, couldn't have gotten this far without him. I hope you have that kind of support. I hope everyone does.
Good luck and stay in touch . This group has been a big help to me.
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Hi Vslush.... Thank you very much for your response and time. At least after reading my question some may have gotten a much needed smile or chuckle, ha. And yes like so many others it's been quite a journey. I always used to listen to commercials on TV and think to myself, "WOW the side effects of that medication are worse that the disease", and in our situation that's been the case. Although the side effects now are from the meds for her neuopathy which never got better. She really is a strong person, but the last two and a half years have taken a toll, but we'll make it through, as we once said "in sickness and in health". Again thank you so much for talking the time to respond to my very basic question, I really appreciate it. Hopefully you don't mind but I did take a look at your profile and just want to wish you the best of luck and hope everything turns out well for you. We'll say an extra prayer for you!!
Bill
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DKK, for me the white fuzz has eventually just become fine darker hair. I had about a cm of hair on my head when I started taxol, then four weeks in it started to thin, so I buzzed it again, but I have had 9 infusions and my hair has grown and I am back to about a cm length of fine thin hair. I can't wait for more hair to come in! I have 17 days until my last taxol (feb 2nd) and just under 6 months until my wedding reception.
This week I have been more tired, but I have also had a cold that has lingered since last monday. Luckily no fevers and I just finished my antibiotics that my MO ordered in addition to my regular lovely neupogen shots. I have not noticed more nerve pain per say, just more clumsiness. My MO has mentioned the possibility of stopping taxol early to prevent long term damage. I have also been taking vitamin b6 and I think that has been helping.
Today I was able to reserve a place for the wedding reception and that has made my day. I love knowing that shortly after chemo and radiation there will be a big party!
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Hi Palette....... I almost missed your post and question. As far as the cancer she seems to be clear as of her last tests (CAT Scan and Ultrasound). The neuopathy though is a whole other issue. The meds for that are having terrible side effects. She is seeing a neuologist who says her nerve damage is permanent and will likely not get better. She is often sleep deprived being that she's up all night rubbing her legs down with a gel that takes the burning and prickly (if that's a word) sensation away. She's been seeing him (also for pain management) for over a year now and has been through a series of pain blocking therapy treatments which have had some limited success. We see him this Thurs for trying something where they take her blood, spin it and just keep the good red cells and then re inject it into her legs. There's a name (I believe it's PRP) for it, but I can't find it at the moment. He did mention though that in limited cases this has helped the nerves to regenerate. We still deciding on that, and although it has no bearing on our decision, that treatment is not covered by any insurance or Medicare. Anyway I didn't mean to drag this out, but I appreciated your concern and wanted to try and explain a little of our situation. As I mentioned to another nice lady here, I took the liberty of reading your profile and want to give you our best wishes for a quick and complete recovery and definitely a prayer for you. Thank you again for writing.
Bill
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