Come join others currently navigating treatment in our weekly Zoom Meetup! Register here: Tuesdays, 1pm ET.
Take our poll: Caregivers, what do you find most difficult about caregiving?
Weigh in: What are the best and worst gifts for people with breast cancer?

Weekly Taxol group

1…5859616364…426

Comments

  • Kruise
    Kruise Member Posts: 242
    edited July 2013

    Hey everyone. I too just started taxol treatments last week - am scheduled to get 12 weekly treatments and number two dose is due in 3 days time. I have been quite achy from day 2 with this first lot - neck pain, shoulder pain, leg pain, stomach pain and breast pain. I have been getting a lot of hot flashes too - and night sweats. Not sure if that is normal. I have definitely felt a lot more 'normal' within myself from this lot tho compared to the AC which wiped me out that first week of the three. Felt great the other two.

    I was a bit worried about starting taxol for the reaction side effect but seemed to do fine which is good. May need a PICC line put in however as it took them 7 attempts to get a vein and now my hand is bruised so don't want that every week.

    I have been taking supplements through a naturopath I have been seeing and touch wood have remained fairly well thus far - just a bladder infection I had while on AC. I have started taking the L-Glutamine today.

    I too am counting down the weeks until this treatment is finished and then it will be onto radiation for me also. A long year that is for sure.



    Love and light to you all -

  • Romanticrose
    Romanticrose Member Posts: 13
    edited July 2013

    Kruise... I have my second weekly taxol tomorrow... having the exact same SE as you...hot flashes and night sweats are terrible... shooting pains...even in my head...alot of joint aches especially in the knees down to the ankles...Stomach pain the first few days... the steroid decadron was doubled for Taxol, it kept me up for three days. Didn't have that issue with AC slept okay other than when I was too nauseous... But AC gave me every side effect in the book including two hospital stays for septis and fever..bottomed out counts and neupogen caused bone pains...Had severe diarhea then constipation , then bleeding with bowel movements from ulcerations there...chemo was pretty much eating all of my mucous membranes...so was put on something to heal that. So, I told the nurses when I just went for counts that I could get no sleep and my doc decided to lower the decadron by half so it will now be the same dose I was on with AC hopefully that will help.... I have gained alot of weight through this all which is mind boggling since I can hardly eat ...I would say I am up about 15 pounds... though last week I went and had lost 6 pounds... in a matter of 3 days. then went back and had put it back on??I had mouth sores so bad I couldnt even utter a word for two weeks by the last course of AC . They had healed enough  to go through with the first treatment of Taxol but tongue is sore again now... no visible ulcers yet... doing all I can to keep them at bay. This treatent is better nausea wise but that is about all I can say good about it...Hate to be negative but this is only one treatment praying it gets better for the rest :(

  • 6cats
    6cats Member Posts: 199
    edited July 2013

    Romanticrose -- I too am dreading my 2nd weekly Taxol tomorrow. I never had this much body pain, fatigue and depression with AC. But, you are right about the nausea -- definately much better. I'm also fighting mouth sores -- not bad yet, but just waiting. Sounds like you had a really rough time with AC. Hope that your Taxol treats you kinder.

    Yesterday I found out that I've had some heart changes due to the Adriamycin -- they are setting me up with a cardiologist. Scares me almost more than the cancer.

  • Romanticrose
    Romanticrose Member Posts: 13
    edited July 2013

    Thought today was an off day where I didnt have to go the cancer center... Yesterday was there for counts and taxol number two is scheduled for tomorrow... But the phone just rang and the nurse said that my blood panel showed my liver enzymes are up and that I had to come in for a stat liver workup... Just got back and wont have results till the morning then they will let me know if I am ok to do chemo tomorrow... This scares me... I have been having pain under my ribs for some time and they checked me for mets and found none... Anyone have their problems with their liver from taxol? I really want and need these treatments...but since you DO need your liver to survive, Id like keep mine healthy... uggg

  • [Deleted User]
    [Deleted User] Member Posts: 942
    edited July 2013

    Romanticrose~~Are you getting dose dense Taxol? I know this is a weekly thread, but some post here who are DD.



    Maybe they can lower your dose. Everything we take into our bodies filters through our liver. So, it makes sense that the enzymes could be elevated. Hopefully it's not enough to discontinue your chemo. Though I'm sure they would give you something else.



    Blessings

    Paula

  • Kruise
    Kruise Member Posts: 242
    edited July 2013

    Hi Romanticrose and 6cats - looks like you are both just a couple days ahead of me with taxol treatments. Sorry to hear you had such a rough time with AC Romanticrose - it sure is a harsh treatment and once things start to go wrong it is hard for the body to mend itself when it's compromised like that. I have felt shooting pains in my liver since starting taxol too - enough to make me worry about what is going on in there - but as Soteria205 mentioned, the Liver is processing everything so it is probably starting to grumble by now about all these drugs and chemicals. My naturopath has told me that my liver is screaming out for a detox but absolutely no point starting that in the middle of chemo - so as soon as I've finished taxol that is the plan. Interesting to note you have had the same issues with night sweats and hot flashes. It's like my body can't regulate itself very well - as I get really hot or feel cold. It's our winter time here too.



    How did they find out about your heart being affected from the Adriamycin 6cats? Did they do another scan? I only had the heart scan before AC started but nothing has been mentioned after about checking my heart out. I hope it is nothing too serious for you.



    I have definitely had digestive troubles too - weight has been stable but I'm slightly overweight anyway. I was eating very healthily and had cut out all dairy food and red meat since dx in January but it was my birthday two weeks ago (45yrs now) and I ended up having some cake and some chocolate and since then haven't been able to get myself back into the healthy eating properly again. I'll go to shops today and buy lots fruit and veges and kick start diet again!



    Love and light to you all -

  • 6cats
    6cats Member Posts: 199
    edited July 2013

    Kruise -- My MO does an ECHO cardiogram every four months. So I had a baseline prior to starting my AC. I just finished AC and have started Taxol+Herceptin, and since Herceptin can also have cardiac effects, she wanted another baseline. There was a difference between the two, but the numbers were within normal range. Saw a cardiologist today. They are going to start monitoring cardiac enzymes with my weekly bloodwork. Additionally, I'll be having an ECHO to monitor heart function every six weeks (instead of quarterly). According to the cardiologist, the numbers are not absolute and can be affected by the technique, room temperature, anxiety, etc. by as much as 10%. Therefore, my next echo will be done by the same technician as my most recent. Once they find out if there is a trend, they will decide on treatment plan.

    I have my 2nd TH tomorrow and imagine I'll learn more from my MO. Not quite as freaked, but still nervous about all of it.

    Sorry... don't want to hijack this thread since it is for weekly Taxol.

  • Ukkate
    Ukkate Member Posts: 13
    edited July 2013

    Hey Ladies,

    My Onco switched me to weekly taxol/hercepten because of my terrible reaction to Taxotere/Carboplatin.  I'm only doing 6 weeks and just did #2 today but I am REALLY suffering from the hot flashes at night.  Are there any good solutions for those?  Anything that has worked?  I'm struggling to sleep through the night...My aunt (in England) said there was a "cool pillow" you could buy or something...

    Thanks

    Kate

  • mareluna
    mareluna Member Posts: 275
    edited July 2013

    While on AC I had mouth sores. I asked my Onc to give me an RX for the Magic mouth wash they use in radiation. You swish and swallow and it numbs it somewhat. I had a sore throat during AC. It really helped.

    I am over 6 months out from chemo. I am doing okay. I am tired from my job. But not anything like the exhaustian I had during chemo. The only thing that bothers me some is the neuropathy in my hands and feet. I think it's a bit better. I used to lay down at night and hate the feeling of sheets or anything touching my feet. Most shoes felt like i had pebbles all in the bottom of them.

    Life is improving. I try to keep busy. Work does that. I spend time with my BF and my friends. I try to get to Water Country on Sundays. I used to go Saturday and Sundays prior to treatments. But I am older and tired. LOL

    Ladies I am praying for you all. I hope that treatments will go well with the minimal of side effects. There are always some.

    Rose

  • Kruise
    Kruise Member Posts: 242
    edited July 2013

    Good luck for TH tomorrow 6cats. I am hoping mine goes ok the day after you. My Dad is travelling down tomorrow (6 hours drive) so he can come to treatment with me. First time he has since I started treatment. Normally my partner is with me.



    Sorry ukkate - don't know any suggestions for the night sweats - but if you find out some tips let me know too. I just spend the night in and out of the bed and fluctuate between dripping with sweat (yuk) and getting too cold lying on top of the bed.



    Thanks for your thoughts and prayers Mareluna - good to know you made it out the other side ok. :)

  • Ukkate
    Ukkate Member Posts: 13
    edited July 2013

    Kruise,

    I don't know if I read it here or somewhere else, but last night I wrapped up a cooler pack from the freezer in a towel and stuck it under my pillow and everytime I went into a hot flash, I flipped my pillow over and was able to put my head down on the icy cool side.  That felt really good...

    I was still awake from 2:30am - 5am so not sure how to get past that!!!

  • Romanticrose
    Romanticrose Member Posts: 13
    edited July 2013

    Ukkate that ice pack idea is genius! Will be utilizing that tonight...

    I am due for weekly taxol number two today at 11:30 but my MO had me go in yesterday for a liver panel as my enzymes were up on Mondays Blood work she ordered it stat but still waiting on the results...This really concerned me and caught me off guard... As this was after only the first of 12 weekly taxols. Wondering how in the world my liver will tolerate 11 more? Bone pains are still pretty bad this is 7 days post taxol. But praying they will call and say all is good for me to sit in the big green chair today. Counting down these treatments!

    I wonder what the protocol is for monitoring after the chemo and rads? I am Stage 3 with 5 of 21 pos nodes had modified radical on right and simple on left. Had DCIS  and DC in left breast and LC and LCIS in right breast was missed for MANY years... Surgeon said it started with the lobular and it is very slow growing and then caused the other two cancers left breast.Had 5 large tumors right breast plus 5 pos nodes that were Big... and three tumors left breast. Doc said she suspects tht the cancer was there when i was preganant with my youngest child she is now 8 and I was diagnosed in January...The lobular cancer presented as fibrous tissue on mammo and since I was only 34 at the time with no history no further testing was done so here I sit...They did get clear margins with mastectomies.

         I had a bone scan, brain mri ,and Ct scan of abdomein and pelvis prior to surgery... but never had a pet scan as so many of you have...this has worried me. My Mo says that physical exams are pretty much all I will have after chemo this does not sound right to me...and in light if the fact my cancer was missed for so long I live in fear.

       i had been going to a very good haopital and that is where I had my surgery but switched for treatment to a local cancer center as the Original hospital was over one hour drive each way and the SE s were so terrible I didnt have the stamina to make the trip 3 times a week...for counts fluids anti nauseas and chemo... worried that I am not going to have the proper follow up.

       What do you ladies have as far as follow up testing and  monitoring?

  • Romanticrose
    Romanticrose Member Posts: 13
    edited July 2013

    My MO just called I am on for chemo today yay! if th liver enzymes re up she will "deal with it" (not real sure what thsat means!)next week but good to go today... will be 2 down 10 to go.

  • Rosina0015
    Rosina0015 Member Posts: 22
    edited July 2013

    I have DD taxol (no thread for DD taxol) - after my first taxol treatment i was in horrible bone pain - my feet, legs, hands, teeth, lower back, shoulders. It was the first time i wanted to give up, even after AC. I had a long talk with my doc who convinced me to give it another try - she said the bone pain tends to get better with each treatment. She was right. Dont get me wrong - I still have significant pain starting day 2-3 and lasts til about Day 5, but its so much better and I can tolerate it better. I also take Motrin 800 every 6 hours around the clock during that time. My legs seem weaker with each treatment and ive resorted to using a cane during the rough days cause my legs tend to just give out on me.



    I too have lovley night sweats and hot flashes. I sleep with a small towel that i soaked in cold water. Right now i love that towel more than sex (sorry tmi).



    Im finding that i feel well enough to get out of the house by day 6 or 7.



    My doc is lowering my taxol dosage by 10% next time cause she was worried about the neuropathy that was in my fingers and toes/feet. She said it could be permanent. I hope not. I take LG and the B6.



    Newcombers to Taxol - None of this is easy but i promise you ladies can do this!

  • Una2008
    Una2008 Member Posts: 21
    edited July 2013

    Hey Rosina...I am new here too.  I am doing weekly Taxol though.  I am TN also.  Havent had too many side effects yet but am still being cautious.

  • ddspain
    ddspain Member Posts: 1
    edited July 2013

    CoolHi !!!

    New on here ...Just started weekly taxol yesterday. Tonight my left hand is pretty numb and tingly.

    I expected that to start later on !!!!!!!

    Yikes.

    I did 4 rounds of AC too. yucky.

  • 6cats
    6cats Member Posts: 199
    edited July 2013

    Happy 4th of July everyone!

    I survived yesterday's #2 Taxol+Herceptin... place was crowded and took forever. Got nauseated during tx and the nurse argued with me since nausea isn't one of the side-effects. Finally took one of my own nausea pills.

    I have had a numb upper lip and found out that sometimes neuropathy shows up there... who knew.

    I also have a very sore mouth... must eat very bland food or my tongue and mouth burn. So I am now on four times a day salt/soda washes with "magic mouth wash". Drinking Ensure, etc. I wonder how much of the soreness is due to dry mucus membranes?

    Day 2 today. Fatigue isn't quite as bad as last week. But, pain is higher.

    And... my amazing discovery!! I'd been told I was post-menopausal. I thought this meant I was through with hot flashes, night sweats, etc.... doc said that no, "a man must have invented that term", post-menopausal means you're not in peri-menopause, and that some post-menopausal women have hot flashes, etc. the rest of their lives... so chemo-pause, here I come... what a let-down!

  • dltnhm
    dltnhm Member Posts: 420
    edited July 2013

    CandyisDandy -

    I was actually instructed to take a megadose of Vitamin B6 - 300 mg daily to prevent neuropathy.

    BUT .... As I did with all my treatment, I researched and found that a person CAN take TOO MUCH B6 and end up with neuropathy. These aren't cancer studies - as your doctor probably pointed out to you - but studies about overdosing on vitamins and/or supplements.



    Discussed this with my chemo nurse and the decision - as all decisions ultimately - was left up to me.



    I decided to forego the B6 and other supplements all together. If I took the B6 and ended up with neuropathy (as some who have had Taxol HAVE experienced) then what indeed would have been the cause - the Taxol or the B6? No one would really know.



    For me - eating right, continuing to run throughout the 12 weeks, staying as hydrated as possible at all times .... continued to be the plan.



    And it worked for me. No neuropathy.



    I share my experience as you have shared yours. We are all so different in our responses to these treatments.



    Hugs!

    Diana





  • Kruise
    Kruise Member Posts: 242
    edited July 2013

    Hi again everyone. I've just had my 2nd taxol today and all went really well. No trouble getting line in this week. My hand was still very bruised from 7 attempts last week so I was a bit worried but nurse soaked my hand in bucket of hot water and it worked a treat first time. I had to fill out form with any side effects I'd been suffering and there was only really the joint/muscle pain I could think of that had subsided by today and my massive hot flashes and night sweats.

    Just like you 6cats - I too discovered today that I am going through chemo-menopause. They said the AC prior has put me through chemical menopause and that makes sense as haven't really had any proper period. So the hot flashes and night sweats are unfortunately part of the symptoms. And because I have just turned 45 my body is unlikely to restart itself again - so wow - this is it. Not sure if that a good or bad thing. I guess that there are the positive points. No more contraception!! Like having a Mirena which I'm sure started my bc!



    dltnhm - interesting what you say about the B6. I have still decided to keep taking it as I have always had a need for the B complex group anyway - from years ago. But will bear in mind that I don't need to up my dose or anything which I'd wondered about.



    So yay 2 down - 10 weeks to go!! All going well...... :)

    Love and light everyone.

  • susaninicking
    susaninicking Member Posts: 121
    edited July 2013

    Thanks to everyone who replied to my earlier questions about Taxol.

    I just finished weekly Taxol #5 of 12 and this is a walk in the park compared to EC. SE's are only fatigue and a bit of constipation which is chalked up to the steroids. Minor and intermittent neuropathy in fingers only. I'm icing hands and feet during the infusions and I am super attentive to my nails in general in hopes I can prevent problems.

    For those of you just starting weekly Taxol there is hope that as chemo goes this might just be not so bad. I am taking supplements and a lot of them at the moment which I can specify if anyone is interested. I found an American medical doctor near me in Germany who also has a doctorate in pharmacology and who has done research in cancer since the 70's. For me she prescribed all homeopathic supplements. I'm feeling mighty fine so I wonder if they are working....maybe!

    And per this forum I have started to let my hair grow as it wants in hopes of getting a bit of a head start....I just lost my eyebrows and I swear they started coming right back so now I have eyebrow stubble. The fun just never seems to end huh?

  • aaoaao
    aaoaao Member Posts: 245
    edited July 2013

    My experience with chemo and periods is that I was certain I had gone through chemo induced menopause.  My periods were knocked out almost 4 years ago when I first went through chemo.  I had night sweats and hot flashes too.  I was on Tamoxifen after I stopped chemo.  My cancer recurred 2 months ago and I restarted chemo.  My ONC took me off the hormone drugs and within 2 weeks I got a horrible period.  I'm almost 50 and thought that my ovaries wouldn't recover but they did.  So I'm just warning people that periods/menopause can be tricky...I recommend still using protection..just in case.

    Life can be such a surprise..both good and bad.

  • Tr4c3y
    Tr4c3y Member Posts: 8
    edited July 2013

    I'm going to ask my med onc if we can skip the decadron for my taxol and just go with benadryl. I had a mild reaction with my second infusion, but once we changed from claritin to benadryl, I haven't had another one in five treatments, and I give most of the credit for that to the benadryl. The decadron makes me kind of miserable during treatment with the restless legs and feet; it keeps me from sleeping off the benadryl, which knocks me on my butt (which I do not mind - the time passes a lot quicker when I can nap through the infusion).

  • 6cats
    6cats Member Posts: 199
    edited July 2013

    Side effects questions.... I had my 2nd Taxol+Herceptin last week

    • Weight gain... how much if any?
    • Fingernails, nothing has turned black, but the base of my nails are darkening... Is this a sign of things to come?
    • Moodiness -- my emotions are all over the place
    • Body pain... does it get worse each tx? For those that have pain, where is it located? What days is the pain the worse?
    • Fatigue... get worse each tx? What days are the worse?
    • Numbness... anyone have numbness/tingling on upper lip, tip of tongue?
    • Dry skin (and mucus membranes, eyes, etc). What seems to bring the best relief?

    I always wonder if I'm an emotional mess, or if things are side effects... so input and perspective would be appreciated. Right now I'm feeling expecially messed up so wonder about the emotional side...

  • honeybair
    honeybair Member Posts: 234
    edited July 2013

    6 cats, we all react differently to taxol. For me, no body pains, no weight gain, nails loosened but now are growing out, did have fatigue and still do particularly as the days wears on, had no numbness of any type, dry skin but have used ample amounts of Aquaphor, lost eyebrows, most of lashes, still get bouts of diarrhea immediately after eating but never know just what causes it, no neuropathy.  Did get a deep vein thrombosis for which I am taking Xarelto daily.

    Emotionally, I have not melted down and instead of focusing on my cancer, I take time each night before falling asleep being grateful for the healthy parts of my body and telling myself I will be restored to total health.  I still have to have surgery in August and will admit to sometimes worrying about it and how I will handle pain particularly since I am allergic to most of the pain meds out there.

    You will be fine.  I see that you are being given and have been given the treatments which should make you well.

    Wishing you all the best.

  • aaoaao
    aaoaao Member Posts: 245
    edited July 2013

    6cats,

    1. I didn't have any weight gain or loss.  Just kind of stayed the same.

    2. I had no real problems with my nails.  No blackening, just a few ridges that grew out when I stopped chemo.

    3. Moodiness is normal. You're going through a lot right now and it is okay to have your ups and downs.  However, if you feel like anxiety is too much it is okay to ask your doctor for a med to help.

    4. As for body pain.  It is mostly just some bone aches. For me the aches start about a few days after treatment.  I believe it is does build up after many treatments, again mine was but not all people experience this.

    5. I was mostly fatigued on the 2nd/3rd days.  Sometimes I get up in the morning feeling good and I just crash by the middle of the day.  Again this might happen more after many treatments.

    6. I never experienced tongue or lip numbness.  I do experience some tingly on my skin like something is crawling on me but this isn't often and it isn't too bothersome.

    7. I've always had dry skin so I really don't see a difference.  A good skin lotion for extremely dry skin does wonders though.

    Let yourself feel whatever you need to.  I warn my family if I'm having a crappy mood kind of day or that I feel like I could scream, cry and laugh at any moment they shouldn't take it to personally. I also let them know that sometimes you just need to be left alone.  Sometimes we just need that mental private time. 

  • jacee
    jacee Member Posts: 219
    edited July 2013

    Just passing by, but wanted share some of my s/e's of my 12 weeks of taxol. Taxol was much easier than AC, yet I still had MANY s/e's.

    ... Bleeding. Mostly from the nose, but also from the urethra, rectum, and vaginal. This freaked me out as they all happened at different times. But taxol affects almost all of the mucous membranes in the body, usually a "thinning out". So, once I realized I wasn't dying...I was ok. And I didn't treat this symptom in any way.

    ...Numbness on nose and side of face. This TOTALLY freaked me out, and my Onc did an immediate brain scan, but it was normal. I later read this was a slightly common occurrence on taxol. This occurred after week 5 and only lasted about a week.

    ...Little skin pinpoint whiteheads on arms, chest, scalp and face. They would come up overnight. Lasted almost the duration of taxol.

    ....Tingling in fingers and toes. This, too lasted the entire course of treatment. I never had any nail issues, but ended up with neuropathy just in the top half of my toes. No issues with it, just a slight difference in feeling.

    You ladies will be through soon.....just wanted to share, so if anything comes up that I had, maybe you won't worry as much, knowing someone else had it too. Hugs!

    Joni

  • 6cats
    6cats Member Posts: 199
    edited July 2013

    Thank you to all who shared about SE's with weekly Taxol. Although most folks say TH is a breeze compared to AC, I am having a rough time. Today got the "nasty" taste in the mouth. Daily diarrhea. High pain in back and hips, but don't know what is fibromyalgia and what is taxol. But, I'm having serious mood issues... depression, etc -- am already on an antidepressant, so don't know what is what.

    I feel like such a whiner... I guess I am... but I'm having such a hard time knowing what is from the Taxol/Herceptin, and what is "normal" right now.

  • JennaJMU
    JennaJMU Member Posts: 22
    edited July 2013

    Hi 6cats. I just had my 2nd weekly taxol last Friday. I'm sleepy but no where near as exhausted as with AC. It seems Mondays are the days where I have stabbing shooting pains in my hips and legs. I feel a strange numbness in my left big toe when walking on it after resting. So far, its not awful!

  • aaoaao
    aaoaao Member Posts: 245
    edited July 2013

    6cats, you are not a whiner.  Everyone experiences different things on the same meds. Emotionally, we are can be all over the place.  I am on anti-depressants too and still have really good days and really bad ones.  Sometimes it takes the smallest thing to switch my mood.  Also it is hard to know what are chemo se and what is another issue totally unrelated to treatment.  Talk to your doctor and see if some of the issues can be worked out.  As for normal, I don't think anything during this time is normal.  Cancer is just to unpredictable.  Try not to suffer in silence. Often doctors can help with most of the side effects we experience. 

    Hang in there, you will get through this.

  • clwhetstone
    clwhetstone Member Posts: 19
    edited July 2013

    WOW thanks for sharing all this ladies.    I would say I am right on track with most of you.   I received my 7/12 cycle today and I tell ya anything is better than the AC.    Day 4 is when I start loosing taste buds then the hip/back/leg and foot pain start and they are generally gone by day 5 late evening.   I do notice it more on Day 2 or 3 in the evenings only but all day on 4 & 5 typically I feel great just tired on Day 7.     I did notice more of a light sensetivity to my eyes but hay bring it on.   I will take it if it means I survive...      Prayers for you all.... no one knows the journey till you travel it......  Glad to have you all on my side :)

    Cathy

Categories

Join Us on Zoom: Upcoming virtual meetups. Read more...
Give your account some personality! Add a profile photo.