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…4647495152…426

Comments

  • Zorina
    Zorina Member Posts: 22
    edited April 2013

    Well, I had the last of chemo on Thursday.  It seems like a shallow victory since I still have to deal with all of the SEs,  but when I feel better I will get excited about not going through these again.  In the meantime, this one has really kicked me in the butt with fatigue.  No pain...so far.  I do get neulasta, but it doesn't affect me much.

  • martha323
    martha323 Member Posts: 17
    edited April 2013

    Greetings all as I sit here forcefeeding myself a healthy bit of protein Wink!

    Colt 45, Congrats to your wife for just one more Taxol - Job well done!

    Soteria - Yes, my Hemoglobin drops, but it bounced back onThursday so tx wasn't delayed, thankfully. I'm adjusting my expectations for days 4 and 5 (Sunday and Monday) and plan to rest, rest, rest. On that note, 5thsib - it sounds like I'm reacting similar to you. I love this group - don't feel so alone with SEs!

    Sandy65 and Imcclure4477(hope I go that right!) - I experience back pain, hip pain, elbow pain (Surprised), and pain in my fingers - but it seems to respond to Tylenol and lasts for the days over the weekend! Don't like it, however!!

    Best wishes to all whether DD or weekly that we have manageable SEs - great to know that we're here to cheer each other on.

    Hugs and Prayers to all for a good week and some peaceful moments, Martha

  • martha323
    martha323 Member Posts: 17
    edited April 2013

    Zorina - Yay! Congratulations! I'll doa happy dance for you on my deck when my energy returns on Tuesday Smile !!

  • caitlin61
    caitlin61 Member Posts: 33
    edited April 2013

    Congratulations Zorina!! Hope your SEs from this last round dissipate quickly!

  • 5thSib
    5thSib Member Posts: 119
    edited April 2013

    Zornia -- congrats on last treatment.



    I am surprised that I am having vision problems again today. Its been a typical issue on Saturdays but since I didn't have a treatment on Thursday I didn't expect this. Weird. Otherwise I'm feeling the best I've felt on Saturday for 20 weeks. Not back to normal yet but better.

  • ywheels22
    ywheels22 Member Posts: 74
    edited April 2013

    5thsib. That is great news. You will be there!

  • Sandy65
    Sandy65 Member Posts: 80
    edited April 2013

    Zorina,

    Congrats on last chemo!

    Martha323,

    I understand the force feeding well as well as all the random pains. I just try to deal with each one as they come.

    5thSib,

    I have a lot of vision problems. It doesn't matter what day it is watering, blurriness, gookey, etc...glad your doing okay though.

    Ywheels,

    Hope your weekend is going well so far.

    Colt45,

    Glad your wife is doing well.

    Everyone enjoy the rest of your weekend and take care.

  • EmilysMom
    EmilysMom Member Posts: 42
    edited April 2013

    Change of subject without having to search a page out...

    Returning hair....

    Many of us are already into taxol and I know SOME people said they started getting hair back when they were not quite done with taxol....

    Just sorta tring to decide on the wig thing... Haven't been to school (teacher) since thanksgiving... And will not be returning this school year due to treatment complications toward the beginning.... So that takes radiation all the way till almost when the next school year comes, with a new round of kids.

    I think if I were having the same round of kids, I wouldn't worry about it as much. But with all NEW kids coming I'm, it bothers me more.

    So I am finding myself thinking about a wig....

    Yikes. I am a plain Jane, so it makes me laugh just to think of it.



    So my question is for anyone who is at or beyond that ppoint, or simply know the answer, is there a certain amount that I cold count on for it growing back in two months? Doesn't it take a really long time to grow back once it finally starts?



    Any info would be helpful. Mostly, I tik my 8 yr old would appreciate if u cold all wave a magic wand and cause me to have air back, as it bothers her extremely!!!

    ;0



    Thanks,

    C

    Aka, bald Emily's mom with NINE more taxols to go.

  • Sandy65
    Sandy65 Member Posts: 80
    edited April 2013

    Emilysmom,

    Sorry can't help u much but my hair is starting to come back but slow. I still have 10 more to go. I wished in the beginning they would of told me my hair could just thin. They told me I would lose it all so I shaved it all off. I have noticed that I only had a few thin spots that I could have dealt with but too late now. Mine is fuzzy but is growing some. It really sucks though because I spent the last couple years growing it out. It was down to my waistline. I will never grow it out that long again. To spend that much time and effect into it and have BC take it away in one moment really bites. Sorry to sound negative and not be much help but thought I could give you info on my experience.

    Wishing you the best,

    Sandy

  • EmilysMom
    EmilysMom Member Posts: 42
    edited April 2013

    Sandy... Thanks... Helpful to know. Great that yours is already coming back!!!

    Awesome!!!



    Have a great week!!!

  • ywheels22
    ywheels22 Member Posts: 74
    edited April 2013

    Emily: I have two more DD taxol. Before was 4DD AC. I shaved my head 14 days into tx and then more fell out but I am not totally bald. I have minion hairs with some bald patches. I too work in a school, though I am not a teacher. I have two wigs, which I wear to work. To me, even though I feel like my wigs scream WIGS, I think most people see hair, esepcially those who don't know you well. I have liked having the option to have 'hair' when I feel it is needed as opposed to hats and bandanas.

    As far as regrowth. Right now, I'm not noticing it growing back. It is not falliing out more, but no new growth yet. My brows and lashes are still here, but seem to be thinning somewhat. I hear those can fall out weeks after tx is done...ugh!!!

    Good luck and feel well!

  • timbek2
    timbek2 Member Posts: 64
    edited April 2013

    Emily's mom



    I'm 11 weeks pfc and finally going topless. My daughter told me to leave my hat at home. She thinks I look fine. I am taking biotin which i think helps so you could ask your mo about taking it now. With warmer temperatures coming I'm thankful to ditch the wig. Best wishes to all!!!



    Becki

  • Sandy65
    Sandy65 Member Posts: 80
    edited April 2013

    Hi all,

    Hope you had a good weekend! Can I ask how many of you continued to work through your taxol tx's and if so, did you work full time or did you reduce your hours with the side effects at all? I have continued to work every day with the exception of Wednesdays(tax day). I have had a few random days I didn't work but otherwise have been here. I guess I am wondering if I am pushing myself too much. I dont get much rest at home or take naps but having a lot of fatigue at work and can't seem to sleep more than two hours at a time. Any help is appreciated.

    Take care,

    Sandy

  • ywheels22
    ywheels22 Member Posts: 74
    edited April 2013

    Timbek: what is the biotin for and is it okay to take? We use it on horses for hoof/hair growth and I'm assuming it works the same with humans?

    Sandy: I work part time to begin with (32 hours a week).

    I worked part time throughout AC #3 and 4 and right now through TAxol #1 & 2 and plan to continue through the last 2 tx's of Taxol. I work five days on about 4-6 hours a day and then five days off, which include tx day and the days after. Taxol #2 has been good. It is day 6 and I probably could've worked but I am concerned about my WBC (I work in an elementary school) so I stay home until day 8. If my WBC go down, I would not work at all. It sounds like you might want to try to back off your hours if you can. It is very important to get rest and to let your body recover from the tx. Maybe take tx day and then Thursday and Friday off totally. I have tx on Wednesday too, and I couldn't work on Friday at all. I sleep all day! I don't know how you do it!!!! By Monday I am okay but still play it safe and stay home, rest, maybe do some exercising, take a nap and chill. Same for Tuesday. I really could work both days but why? I have great medical leave and I do some work from home. There will be plenty of time for work when this is all done. I hope you are feeling well.

  • Sandy65
    Sandy65 Member Posts: 80
    edited April 2013

    I do payroll so it is hard for me to be off the Friday before and the following monday and Tuesday. This is every other week and of course it falls on the weeks of treatment. I don't have much backup because the girl that covers for me has her own payroll. We also have a disabled aunt we care for at night and until last weekend we did the weekends with her too. This has been the last five years. We finally got some extra help for weekends and longer days. It is still hard though. I see MO on Wednesday. She wanted me to take leave three weeks ago but felt obligated to my job. Thanks for sharing your info with me.

    Always,

    Sandy

  • Zorina
    Zorina Member Posts: 22
    edited April 2013

    Sandy - I found I couldn't work at all during AC. I was too brain dead.  I returned to work full time with Dose Dense Taxol. I have some rough days (like today), but everyone seems to be forgiving of this.  I do know that returning to work improved my mental health a lot.  

  • Sandy65
    Sandy65 Member Posts: 80
    edited April 2013

    Zorina,

    Thanks, that's good to know. Taxol seems harder on me than AC. I have alot of bone, muscle and joint pain. They say usually only your lower body gets achey but I have it in upper and lower both. Not sure I can keep working through all 10 more tx's.

    Thanks for your help dear.

    Sandy

  • KimHam
    KimHam Member Posts: 2
    edited April 2013

    Okay my pink warrior friends, I'm confused on these Taxol doses.  Some of you appear to talk like you are having 4 doses/treatments, others talk about 10-12 doses.  Is there really that much of a range of difference?  I just started A/C (one of 4 treatments done) then I understood I would have 4 Taxol.  Does that make sense?  I'm encouraged by those that say Taxol is easier than A/C.  I sure haven't enjoyed this!  I know I can ask my onco to explain my situation more fully, I'm just curious if I was understanding this correctly.

  • Sandy65
    Sandy65 Member Posts: 80
    edited April 2013

    Kimham,

    There are a few different ways taxol is given. The one you will be getting is called dose dense. It is a stronger strength given like the AC every two weeks or so. The other you hear about is 12 doses at a lower strength given weekly. There may be one given every three weeks but I can't be sure on that. The regimen is determined by your oncologist and you. Sometimes they base it on your stats and sometimes your health status or both. I was due to have DD but talked to my onco and we agreed weekly would be better. Nevertheless, sorry you have to be here but welcome. Lots of great people here.

    Take care,

    Sandy

  • caitlin61
    caitlin61 Member Posts: 33
    edited April 2013

    I'm doing dose-dense Taxol and my rough days seem to be Days 3 - 5 post-chemo (which fall on Saturday through Monday). I'm lucky, in that I've been given permission to work from home while going through chemo. I missed a good 3 days most cycles on AC, but with Taxol it's more like 1.5 to 2, since I seem to be at my low (due to bone pain) on Saturday/Sunday.

  • Sandy65
    Sandy65 Member Posts: 80
    edited April 2013

    Caitlin61,

    I seem to be having more pain sooner after tx and lasting longer now. I have my tx's on Wednesday and do well on Thursday (probably due to steroids). Now my pain starts on Friday. It goes through the weekend and now today is Monday and still having pain. The se's just keep going out more days with each dose. I was hoping I wouldn't have all this achiness lasting this many days. I will just have to manage.

    Take care,

    Sandy

  • ywheels22
    ywheels22 Member Posts: 74
    edited April 2013

    Sandy: Sorry Taxol isn't treating you well. I hope you can take some time off as maybe that will help but it is hard when you are it...and mentally it has helped me going back. But I am glad I can basically work when I can and don't have to when I can't.

    Kim: I did DD ACx4 and am now in DD Taxolx4. My understanding is it is based on pathogy, tumors and size, medical history, genetic markers and health history. I don't know what determines it. I was not given a choice or option. My MO follows the Sloan Kettering protocol (which I am sure most do) and that is what he said is done. I finished number Taxol 2 last week. My tx is on Wed. and Friday and Saturday are my down days. Moslty tired with some aches. Sunday is a bit better and today, Monday, day 6 I am fine. I have found taxol, so far, much eaiser than AC. I also am not getting the Nuelasta shot (as of now) and I think that has also made my life easier. I did not do well with that shot during AC and had to take pain meds to help get through it. My bad days lasted through to Tuesday during the AC/Nuelasta shot txs. I am certain, and so is my MO, that is was that shot that did me in. I am prayiing my WBC stays normal so I don't need any kind of shot through taxols 3 and 4. Good luck to you and welcome!

  • Sandy65
    Sandy65 Member Posts: 80
    edited April 2013

    Ywhleels,

    Thanks. I will just have to deal with the pain and take the pain meds. I had already prepared myself mentally for this due to my history. If things get too much worse, work will just have to understand. They have been really good so far. Hope your counts are good this week so you can get these last two done.

    Wishing you well,

    Sandy

  • PeggySull
    PeggySull Member Posts: 368
    edited April 2013

    Hi Emily's Mom,



    I am about two months post chemo and I have hair coming in but oh so slowly.



    A BC friend suggested nioxin to speed hair re growth but I haven't had time to research that or the female version of Rogaine in terms of risk or safety. Too many more urgent questions for all members of my loosely called treatment "team" but it is definitely on my list.



    I got a human hair wig in a local shop that very closely matched my previous hair style and color. Didn't use it much during treatment (used scarves) but post treatment it is a Godsend.



    It is made by Revlon and cost a lot but insurance will reimburse some because I have a prescription from my oncologist and an invoice that matches from the shop. We"re waiting to hear how much they will reimburse.



    Many women have had problems with the comfort of their wigs but I've been lucky here (wish I had that luck with my dx and SEs and prognosis!!!). Sometimes I forget I am wearing the wig!



    If you go the wig route my suggestion would be go to a shop that frequently deals with cancer patients (some assistants or breast navigators on your team should have some suggestions). Take a good friend along and take your time choosing. I'd treat the decision like I would in buying a pair of shoes that you'll be standing up in for a day at work.



    Human hair wigs have the advantage over synthetic because they can be washed and styled (although you have to do this differently than with your own hair. Again a good wig shop should be able to advise you about that.



    In any case, you'll eventually make a decision that's right for you.



    Peggy

  • ywheels22
    ywheels22 Member Posts: 74
    edited April 2013

    SAndy, good luck with all of it. Go easy on yourself...and I will post on my counts. I get blood work this afternoon. Take care!

  • PeggySull
    PeggySull Member Posts: 368
    edited April 2013

    Does anyone have any suggestions for the peripheral neuropathy post treatment? I am two months post chemo and am still struggling with this in hands and feet. Have tried

    Neurontin but it didn't help me.



    My avocations require a precise use of my fingers and I'm eager to get some fun back into my life like many others.



    Any suggestions would be appreciated. Most of the neuropathy in my hands is in my fingertips.



    Peggy

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

    Peggy~~Have you tried vitamin B6 and L-Glutamine? I've heard other ladies say it reversed the effects even after they had finished treatment.



    I take 200 mg of B6 twice daily and L-Glutamine is 30 grams per day, taken in 2 or 3 doses. It must be the powder form. You could never get enough by taking pills. I mix it in a glass roughly the size of a shot glass with grape juice. Two heaping tsp is the equivalent of 10 grams.



    I hope this helps.



    Blessings

    Paula

  • KimHam
    KimHam Member Posts: 2
    edited April 2013

    Hi Sandy and YWheels Laughing  Thanks for helping clear this up for me.  Sounds like my onco is planning on the DD Taxol.  Hope I make it.  I want to be done as quick as possible.  Also my drive to treatment is an hour and a half.  Prefer not to have to go EVERY week. 

    As to all you wonderful warriors, although I would never wish anyone to have to join this group, I have to admit, it is an honor being included with such great, strong people.  Thank you for being there.  You never know what words will "reach" someone in time of need.  You have certainly helped me as I lurked. . .

  • adagio
    adagio Member Posts: 713
    edited April 2013

    Peggy - I think I mentioned before that I took the L-gluatamine for 6 whole weeks after treatment. I also go to acupuncture every week and I believe it helps a lot. I don't have neuropathy but rarely and occasionally I get some pins and needles in my right hand and sometimes my right leg - but it lasts only a few seconds and it is gone. All of the B vitamins are known to be excellent for nerve repair - so perhaps taking a B-complex along with B6, B12. If my pins and needles ever get worse, I will start taking the L-glutamine again. I also take L-carnitine which is similar to the L-glutamine. 

    Glad you found a wig that you love - mine is half human hair and half synthetic - super comfortable and it washes just fine. I wear it going out in the evenings, but for every day wear, I just use headcovers. Looks like my hair is going to be growing in really slowly.

    I googled Nioxin shampoo - my biggest problem with it is that contains sodium laurel sulphate which is supposed to be carcinogenic - so I think I will just have to be patient and wait for my hair to grow on its own, since I try to avoid all of those chemicals when and where I can.

  • colt45
    colt45 Member Posts: 383
    edited April 2013

    My wife completed 4 DD A/C, followed by weekly Taxol----she has her 12th and final Taxol later this week.



    Does anyone know what we can expect regarding hair re-growth?

Categories

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