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Weekly Taxol group

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  • 65chevy
    65chevy Member Posts: 3
    edited June 2013

    That was a big deal for me too.. and it was hard to find an answer. I have done 12 weeks of taxol and am signed up for 4 more to start. I still have hair! It is thinning out somewhat.. but it is still there.. I am being gentle.. and taking lots of vitamin supplements as well as MSM ..

    So that part is OK.. the bad part of taxol is the swelling around the middle, or the taxol tire as I think people call it.. This really sucks.. as I am as active as I can be, and am NOT eating any more than  before.. probably less.. And I go get pretty swollen by the end of the day.. A good sleep cleans it all up. I am really working my abs hard these days! It's got to go away eventually.

    Am I the only one on any of these forums who is pissed that surgery is part of this equation? I mean.. Isn't it 2013?? Why can we get a complete response from these stupid treatments? I mean.. I had liver surgery last fall, and I am done. I do not want a mastectomy.. even a lumpectomy.. Nope... I want a different approach. It's 2013 isn't it? I hate to be a dissenter here, but there just has to be something better.

    Has anyone NOT had the surgery? Do realize that the fda has never done the idiot stage three trials on surgery, but has helped make a lot of treatments harder to obtain, treatments that might help with some of these flavors of breast cancer.. I mean there are so many different flavors of this cancer... Something has to work for us!

  • gailani
    gailani Member Posts: 8
    edited June 2013

    I'm about to have my 4 out of 12 Taxol. My apetite has increased a little I think due to the steroids...Definately the Taxol Tire! I just started back at cross fit twice a week and it helps me feel like a normal person. I am tired and have a bit of muscle pain. Nothing like AC but still i do feel it. I take lots of supplements. I figure I have nothing to loose and it makes me feel like Im in control. I consulted a naturopath so I welcomed his guidance. Only time will tell if I end up with nuropathy..I shaved my head during AC but it grew back to where i have a head full of stubble. So I have yet to loose all of it. I have some eyebrows and eyelashes left too. I'm curious to see if Taxol makes me loose it all. Can anyone tell me if their symptoms continued to get worse as the treatment continues? I just want a heads up. Thanks to everyone for their experiences. To those of you who are new, you can do this. I find that time is passing quickly on Taxol. Maybe because I now have it every week...Take care all.

  • michelle68
    michelle68 Member Posts: 8
    edited June 2013

    Gailani- this Thursday will be my 8 out of 12 Taxol....so far only have slight numbness in pinkie toes...my fingers get tingly when I exercise, but they go back to normal. I lost most of my hair during AC and shaved off what was left, but now it's about 1/2 inch long and growing, my eyebrows thinned during AC but are also filling back in. I also have the Taxol tire but partly due to chemopause I am guessing. I do get tired easy and will have random muscle pain, but it goes away within a day or 2. So far my nails are all holding strong, no discloration either. From what I have read in previous posts, SE vary greatly from person to person. Hang in there. We are warriorsCool

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

    gailani~~I'll be 3 weeks out of my 12th taxol this Friday. I had some minor side effects that progressed during tx. The last 3 weeks the swelling in my feet & ankles lasted longer. I lost the rest of my lashes, but they were never thick anyway. My brows are still hanging on, but are thin. (Actually, a tiny bit of brow pencil makes them perfect)



    I never iced my nails and have no fingernail issues at all. I did lose my 2 big toenails but had no pain. I've never had nausea. My biggest complaint was fatigue. I wasn't sleepy, just unmotivated and small chores and short walks wore me out.



    Paula

  • morwenna
    morwenna Member Posts: 204
    edited June 2013

    I've had 9 taxols, and my 10th this week has been cancelled because I've had a tummy upset for a week. They are querying infection.



    My nails, (thumb and first two fingers, especially the middle fingers), are really quite sore, and I can't believe how often I bash them in daily activity!! They feel like they could lift off at the ends so I cut them really short, and I'll wrap them if need be. The sorest nails have deep red colour centrally and feel a bit warm.



    Heels and little toes are a bit numb/tingly, and I get shooty momentary shock-like pains in my back and legs sometimes. Initially I put on weight, especially round my middle, but the last couple of weeks I have lost slightly, but I've not eaten much due to my upset tum! I've been really fatigued too, but actually feel quite a bit better today. Maybe I did pick up a bug!?

  • jayjayc
    jayjayc Member Posts: 31
    edited June 2013

    hi,



    Everyone is different with SE's but here's what I experienced in the later treatments..

    My chemo plan was just the 12 weeks of taxol/herceptin and then herceptin for a year...... I lost a lot of my hair from the 2 - 5 treatments, but did manage to keep some. I'm now two months pfc and my head has a complete covering of hair maybe 1/8 to 1/4". The temples and top came back last....



    I got ugly bruises under my nails between treatment 11 and 12.... which later became areas like air pockets..... those have almost grown out. I also lost all of my eyebrows AND eyelashes practically over night at 4 weeks pfc...... but they are also totally back and thick now....



    Neuropathy in my feet is really the only problem I still have...

  • Tr4c3y
    Tr4c3y Member Posts: 8
    edited June 2013

    I've had 5 weekly taxol treatments (after being switched from taxotere - I didn't tolerate it well), and I'm just now starting to have a little peripheral neuropathy.  I have started the glutamine powder - nothing like a little gritty applesauce to start your day! Laughing  I have mild Big D on a daily basis, but other than that I'm finding it reasonably tolerable so far.  No issues with nails yet.  The taxotere nuked my hair, but it might be growing back.

  • morwenna
    morwenna Member Posts: 204
    edited June 2013

    I'm feeling better. Tummy all good now, and I had Taxol #10 today. Woo-hoo!



    I even managed deep water exercises on Tuesday and plan to go again tomorrow. I have singing coaching Friday and Saturday, but I know I'll be flagging by then. Don't matter, even if I sit and listen it'll be worth it! :D

  • colt45
    colt45 Member Posts: 383
    edited June 2013

    @Morwenna: Right back on track! Just 2 more to go!

  • Skigirl72
    Skigirl72 Member Posts: 180
    edited June 2013

    One more taxol on monday and I will be PFC!! My fingers are sore and I am very tired. I can not wait for this to be done!!!

  • colt45
    colt45 Member Posts: 383
    edited June 2013

    @Skigirl72:

    Wow! You are almost there! Just keep moving forward.

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

    Tomorrow I will be 4 weeks pfc. My hair is coming in at a snails pace, but I still don't see anything on top. I know a watched pot never boils, but I check everytime I go to the bathroom.



    On a good note, I'm getting stronger everyday.



    Paula

  • davick92
    davick92 Member Posts: 3
    edited June 2013

    I had Taxol #11 on Tuesday, and just one more to go next week! I am so ready to be done! I started out really good on this stuff but, as time has passed, the SE have gotten much worse. I now have neuropathy in my hands, feet, and I think its starting on my face. Extreme fatigue. I feel swollen, stiff, and sore all over.

    One thing I have noticed is that the day after treatment has always been my best and most energetic day! Anyone else have that? Any ideas why? Then, two days after treatment, I start going downhill with major fatigue. Today, I just feel heavy all over my body.

  • morwenna
    morwenna Member Posts: 204
    edited June 2013

    Davick, I'm sure its the steroid effect! I have my treatments on Wednesdays, today I went to the pool exercises, tomorrow I won't feel so good, and the weekend is a bit of a washout. Then I feel better Monday/Tuesday, then start again!



    Two more for me. I was also pretty good for the first 7 or so, then things got tougher!

  • mareluna
    mareluna Member Posts: 275
    edited June 2013

    Hi Ladies,

     Congratulations to those whom are getting down to the last one. I am sure you are ready. The last few for me were harder. But

    I am almost 6 months out PFC and I feel good. My neuropathy is still there in the hands and feet. I am used to it I guess. I am

    hoping it goes away. Hang in there ladies.

    Rose

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

    Hi everyone. It's been several weeks since I've been here so trying to get caught up. Hair seems to be a big issue. I'm about 8 weeks post chemo and hair is growing pretty well as you can see from my picture taken by my granddaughter this past weekend. Actually it started coming back during Taxol treatments. It is white with some dark mixed it. It's really wavy in the back. My brows starting coming back in a couple of weeks ago and my lashes had a growth spurt about the same time.

    I'm really starting to feel almost normal again. I'm trying to get back into my exercise routine. Really the only SE I still have is slight neuropathy in my fingertips. I am doing radiation right now. I've had 20 of 35 treatments. So far no real issues. My breast is starting to get red and a little touchy like a slight sunburn.

    For all those that are just starting your treatments -- hang in there. It is doable and there is life again after chemo. For those of you almost through, congrats

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

    This article was posted earlier today. It is about a study between weekly and dose dense Taxol. I know the question comes up occasionally about which is best. This articles says they are pretty much equal ineffectiveness.

    http://www.breastcancer.org/research-news/20130612-3?utm_source=Personalization&utm_medium=accounts&utm_campaign=60,65

  • honeybair
    honeybair Member Posts: 234
    edited June 2013

    Completed my 12th Taxol last Wed...  so far, no neuropathy.  My worst day is always the next day after treatment because of sleep deprivation caused by the steroid which awakens me at 3am and keeps me wired all day Thursday.  I have almost no eyebrows or eyelashes and my nails look funky, but no loss yet.

    Next stage for me will be a modified radical mastectomy.  I am opting out of reconstructive surgery at this  point.  Just hope to get well and move on with my life.  

    To all of you who post often, thank you.  I mostly lurk, but gain strength from all of you.

  • colt45
    colt45 Member Posts: 383
    edited June 2013

    @soteria205:



    If my wife is any barometer, your hair growth will pick up the pace after 5 weeks and the top and temple areas (the last to show marked growth) will kick it into gear after about 7 weeks.



    You could be on the verge of increased growth over the next 3 weeks or so.



    Hang in there!

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

    Colt45~~Thanks for the encouragement. I'm tired of looking like a short, fat, Dr. Phil!



    Paula

  • lpc
    lpc Member Posts: 39
    edited June 2013

    Hi all



    I am starting dd taxol in 2 weeks and am wondering what to expect and if there are any tricks to reducing se's?



    Lisa

  • Rosina0015
    Rosina0015 Member Posts: 22
    edited June 2013

    Lisa,



    I just had my second dd taxol on Tuesday.



    First off I had no nausea with the taxol - yeah! Some constipation but not too bad. Eating/Drinking isn't a problem, although I can't taste much for about 5-7 days. But that doesn't bother me. I've some neuropathy, taking L-Glutamine powder to help with that. It's feels weird but I'm going with it. The worst SE I had was the bone pain. For me it was all over throbbing pain. The first time it was bad, this time it hurts still but I'm not in tears like before. I've been taking hot showers and taking Motrin and using a heating pad. My doc says I had the worst of it and it tends to get easier with each treatment. I think she was right :)



    Hope that helps. And good luck.

  • morwenna
    morwenna Member Posts: 204
    edited June 2013

    I get the impression that the bone pain is a much greater issue with the dose-dense taxol (every two weeks) than for those of us who are weekly, I presume because we get the lower dose.



    I have experienced fleeting, shock-like jabs of pain, but not had to resort to analgesics. I can't take nsaids anyway as I'm on heparin. These last couple of doses, I am getting some muscle pains in my legs, arms and trunk, like stiffness, a few days after each treatment.



    It's not terrible, but actually I did pop a tylenol before going out to sing tonight.

  • bestock
    bestock Member Posts: 186
    edited June 2013

    ggtexss

    I have had 18 mos of chemo with ovarian cancer, and taxol for mets to my liver for breast cancer, this year. Both times, It has taken three weeks for the hair to start falling, then I shave because of the huge mess around the house. I got a wig and hats to be prepared, unless you are like a lot of these brave ladies on this post with their lovely baldness showing..I admire them

  • LeslieVilla
    LeslieVilla Member Posts: 57
    edited June 2013

    I started chemo 3 weeks agao with a 3x dose of Carboplatin Taxotere and Herceptin, with a neulasta shot on day 2. Nearly killed me.  Wasn't sure which drug was causing me so much touble, thought it might be the Nuelasta, so two days ago switched me to  a weekly dose of  Carboplatin Taxol and Herceptin and i woudl not need the neulasta. So its been just as bad but with out all the joint pain and bone aching from neulasta.   Doc said if this time was unbearable they woud take out the carboplatin.  They say i need a total of 18 rounds, and I've now had 4 of the 18. I don't feel like i can survive this.  It's so incredibly horrible.   I've been in bed for 2 days canat digest anything. Miralax isn't working I have horrible heartburn migranes, chills hot flashes. and feel like barfing.  I'm seriously shocked that people survive this treatment.  

    Sealed

  • lpc
    lpc Member Posts: 39
    edited June 2013

    I just completed what I call my lost weekend #4 following ac on Thursday. I just cant make myself move day 3 and 4. Should I expect the same with taxol.? How much b6. B12. And l glusaamine should I take to ward off side effects? Thanks for your help

  • PatinMN
    PatinMN Member Posts: 784
    edited June 2013

    LeslieVilla, I am so sorry you are having such terrible side effects.  I did not have carboplatin, just taxol and Herceptin, weekly for 12 weeks.  I did not have bad side effects, and I hope things settle down for you.  I was already taking prescription Omeprazole for heartburn; I continued that and had to occasionally take some extra Pepcid.  I tried various things for constipation; what seemed to work well for me was Sennokot pills, or Smooth Move Tea (which you can get at the grocery store).  Ask your oncologist (or the nurses) what you can take for your migraines.  I was given the OK to take Excedrin if needed, although my headaches weren't migraine-bad.  Taxol is not known for causing nausea, so maybe that's the Carboplatin.  I hope they have prescribed some anti-nausea meds for you.

    lpc, I took 100 mg of Vitamin B6 per day (every day), and 30 grams of glutamine per day (day of treatment and 3 following days) during my weekly taxol.  I didn't start taking the B6 and glutamine until I started having some twinges of neuropathy, which was about 3 weeks into my 12 weeks.  Some people never get neuropathy from taxol, so the chemo nurses suggested I wait on the supplements until the symptoms showed up.  It seemed to work for me.  I did not have AC, so I can't give you any insight on the differences, but most people say that taxol is much easier to get through than AC.

  • davick92
    davick92 Member Posts: 3
    edited June 2013

    lpc - The AC is very hard on the body. By the time I finished #4, I was so uncomfortable and didn't want to start on the Taxol. But, I was given a 3 week break, and the Onc told me Taxol is generally much safer and less traumatic on the body. I did really well with the Taxol in the beginning. However, chemo is chemo, and there ARE side effects. I started getting Neuropathy about half way through and extreme fatigue a couple days after each treatment. But, everyone reacts a little differently, and I hope your treatments go well. I wish I had known about the Vitamin B supplements before now. That may have helped.

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

    ipc~~I finished taxol 5 weeks ago this coming Friday. It is SO MUCH EASIER than AC!



    Are you getting the 12 weekly infusions? I felt like AC was out to kill me. Incredible fatigue. I could barely walk from the car to the front door (about 20 feet), I felt faint all the time, my tastebuds felt like I had scalded my tongue on scorched coffee, I had chemo fog, my vision was fuzzy, and I developed dvt (blood clot in my leg) from AC.



    With taxol, my tastebuds were a little off for about 36 hours, but nothing like with AC. I had a couple of nose bleeds, had some minimal neuropathy in the toes on my right foot, and was fatigued. Friday I will be 5 weeks pfc. I'm getting stronger everyday.



    I took B12, B6, twice daily, and 30 grams of powdered L-Glutamine. I mixed 15 grams in a little grape juice twice daily. About half through taxol I quit using it. I would just forget. I don't think I would have had any neuropathy at all if I had continued it.



    I did nothing at all to protect my nails. I was very blessed to have no nail issues. I did lose the 2 big ones, but they had been subject to fungus for years, so I was glad to have them go. Now I can get at the root of the problem.



    Blessings

    Paula

  • morwenna
    morwenna Member Posts: 204
    edited June 2013

    I've been trying to puzzle out what pfc stands for......



    Best I can come up with is post-f@#&ing-chemo?!



    I have one more week of Taxol, next Weds, then I am done. I will be SO done!!

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