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Weekly Taxol for Stage 4

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  • blainejennifer
    blainejennifer Member Posts: 441
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    Glenna: I was suffering with the runs as well, but found that I had turned totally lactose-intolerant. Once I avoided dairy, no more power pooping. I have the lactose-free milk in my morning coffee with no ill effects.

    Susan: I'm entering month 8. I have one fingernail that likes to lift a little and ache, but that's about it. I've increased my Neurontin dose to 400 mg, and am doing L-Glutamine 500 mg 3x daily. I'm an obsessed knitter, so the fingers have to stay obedient. It does seem to help to keep the nails coated with thick nail polish to keep UV off of the nail beds. I also have to keep sunscreen on my hands, or I get a weird photosensitive dermatitis. What is is with the hip pain? I get it too.

    And, I have no hair, but do have the Taxol fuzz. But, my TMs have gone down to 53 from 2,600. MO has promised that if I hold them on or under the 50s for the next 2 months, we are going to try stronger anti-hormonals. Momma needs hair!

    Take care, everyone.

  • SPAMgirl
    SPAMgirl Member Posts: 137
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    Blainejennifer, for a minute, I thought you were going to say you get a pizza party. Whenever we meet a goal in my workplace, we get a pizza party. Maybe you can have a pizza (lactose free cheese) and a stronger anti-hormonal :)

  • GatorGal
    GatorGal Member Posts: 750
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    My counts are remaining stable. No need for neulasta or nupegen. Yeah!

  • susan3
    susan3 Member Posts: 2,631
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    Blainejennifer, I knit too...I am real bad and finishing my projects but great at starting them.  lol.  I am only on the taxol right now, dont know what the other things are yet. stopped asking doc questions, needed to give my brain a rest:)  so reassuring that you are entering your 8th month....good luck with your counts and your "hair"

    stay warm everyone and have a great day. I have a friend taking me away for the weekend to a spa....my friends are spoiling me right now!!!!!!!

    God Bless

    Susan

  • rkt
    rkt Member Posts: 8
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    I crochet - my doctor said that she will know that it is time for me to come off taxol when I can no longer crochet :)  I just finished round 17 this week (so that is 3 *17 - 1 or 2 treatments that I skipped = almost 50 taxol treatments).  Hair started to grow back in April/May 2012, now I have plenty - about 2 inches all over - needs mousse to keep it from sticking straight up :)  Still have my fingernails, and don't really have problems with neuropathy - I am now taking 4.5 g of l-glutamine a day, a B-complex supplement along with lots of other things (multi-vitamin, vitamin D, calcium, Co-Q10).  The l-glutamine I started of 0.5 g per day last January, and have upped 0.5 g every time my toes start to have numbness. 

    My husband and I have worked in the same department, side by side for > 25 years.  Last week, he looked at me (on full medical leave now) and said 'you just aren't interested in work anymore, are you?' I told him, I could just crochet all day every day and be perfectly happy :)  so I crochet and cross-stitch in between naps, trying to stitch my way out of the multitude of bins with yarn and projects partially completed over the years.  Right now, I have 25 crocheted baby blankets (my girls have said 'Mom,  you can stop, we aren't going to have that many babies'), and about 10 cross-stitch projects ready to be framed.  Still have two big storage bins of cross-stitch kits to be finished, cross stitch towels/bread clothes/fabric to be made into finished projects, and three huge bins of yarn to crochet into something.  Hopefully I will get through most of it, so my husband won't ever know how much crafty stuff I have accumulated over the years :) 

    Hang in there with taxol - my local oncologist said he had one lady who stayed on it for 72 months!!  I would be thrilled to get to 72 months!

    Becky

  • GatorGal
    GatorGal Member Posts: 750
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    Oh, wow, I would love 72 months, too! That is awesome! Becky, you could start a craft business with all the blankets you're making!!

  • blainejennifer
    blainejennifer Member Posts: 441
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    Becky's got hair?!?! Oooh, I envy that more than all the cool yarn. Though, the yarn is awfully enticing too.

    For some reason, I can't get the knack of crocheting. My husband's gran tried to teach me, but we concluded that a monkey would have picked it up faster.

    My current project count is: one pair of socks for my favorite chemo nurse, one blanket (10 stitch pattern), and a pair of leg warmers for me as DH accidentally felted my best pair (he has now been talked through the ins and outs of washing woolens). I'll be moving on to a beret, and trying to figure out what to do with a stash of liberty yarn and noro yarn. I'm thinking shawl and blanket.

  • rkt
    rkt Member Posts: 8
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    I have never been able to figure out how to knit - two needles just perplexes me, so hats off to those of you who knit!  My mom tried for years to teach my sisters and me how to knit and crochet - none of us ever learned from her.  I finally found a slipper pattern (all single crochet) and taught myself to crochet when I was in college.  That pattern still gets raves at christmas time when everyone gets their new pair of slippers for the new year (also helped me start to use up some of the yarn this year - I think I made 15 pair of slippers).  I also found a hat pattern book - some really quick patterns for caps - great way to use up yarn - I have made three for the oncologist's office already - I don't wear them, but these take about 1.5 hours to make, start to finish - very fast pattern.

    Redheart.com and caron.com (simply soft yarn) and bernet.com have loads of free patterns for crochet and for knit, at all different levels (easy, medium, hard).  I get most of my patterns from these three sites.

    Becky

    Becky

  • susan3
    susan3 Member Posts: 2,631
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    72 months!!!!! now that is exciting :)  I am knitting a sweater for myself. almost done. I get together with friends first wednesday of the month and we knitt. Its fun. They knit soooo many things. I knit really fast in the beginning then i lose interest and it takes me forever to finish. Meeting monthly helps :)

    Happy super bowl Sunday to all !!!!!

  • SPAMgirl
    SPAMgirl Member Posts: 137
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    A friend asked me what the difference was between knitting and crouching. He's about my age and I knew he didn't really care, so I told him that more people die in movies from knitting needles than crochet hooks,

  • susan3
    susan3 Member Posts: 2,631
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    that would be correct spamgirl  lol

  • Carolben
    Carolben Member Posts: 265
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    Hi there, I'm new on this thread, dx dcis triple neg stage 1 gr2 in May 2013 - at first 3 month checkup they found mets in both lungs. Am still trying to get my head around it all.

    Starting 6 months of weekly Taxol tomorrow - have taken hope from what's been posted here about it being very do-able.  I also had a port put in yesterday, the last chemo did my veins in.  Will have another CT scan after 3 months to see if it's working (please God!)

    Sounds like hair loss will happen, dammit, I just grew back some amazingly curly and thick hair!

    Thanks for being there,

    Love

  • GatorGal
    GatorGal Member Posts: 750
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    Carolben, I'm getting low dose taxol 3 Wednesdays on, one off. I haven't lost my hair. Slight thinning in the back and in my "private" area but nothing else. I was told 50-50, so don't assume and go shaving it off. Wait and see!! Hope it is as good for you as it has been for me!

  • kjones13
    kjones13 Member Posts: 662
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    Caroline--next week will be my last week of taxol (18 weekly treatments)! I did have hair loss about 3 weeks in...I call it the taxol fuzz. My main se has been the loss of energy...for me day 3 and 4. My nose bleeds were worse in the beginning. Take b6 and glutamine! My neuropathy really snuck up on me around week 12 and got worse. Had to take a week off of taxol and take my vitamins to get back on track...foods don't really taste the same and i have the big d...but I'm also on herceptin and pertuzumab. I can see that this is not your first time on chemo. I hope you find it much more tolerable than what you've been through! Best of luck!

  • puffins
    puffins Member Posts: 9
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    Carolben and all my wonder-full taxol sisters,

    I'm encouraging you on and sending each of you loving, healing energy! I finished 16 weeks of 3 on and 1 off of taxol several weeks ago. For me, it was doable and I did not need a port (this time around). Just had my 3rd "stable" CT scan, although blood tumor markers are beginning to rise again. I'm thankful for however long this season lasts, as I'm finally starting to feel better after the chemo. Still have lots of fatigue-"naps with cats" are my best friend and make everything else doable. Hair is beginning to grow back and feet are still mostly numb. Tried the B vitamins and it seems to have helped the feet a little.

    We're all hanging in there with you! 

    Gentle hugs,

    Shoshanna

  • blainejennifer
    blainejennifer Member Posts: 441
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    Had my 28th infusion on Thursday. TMs have been 40/43 for the last 6 weeks (from a high of 2,600).

    No neuropathy, thanks to Neurontin. I do get a little tired on the week-end. MO says that if scans this week look good, we are going to try a anti-hormonal. Yippee. I'm looking forward to hair and toenails!

    Best to everyone.

  • susan3
    susan3 Member Posts: 2,631
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    good news blainejenni!!!!!! keep "down" those counts :) good luck with your scan this week,,let us know how it went.

  • blainejennifer
    blainejennifer Member Posts: 441
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    Thanks, Susan. Trust me, you guys will be the first to know. I mean, besides me and the MO :)

  • GatorGal
    GatorGal Member Posts: 750
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    I just re-read some of the posts on this thread. Blainejennifer, I think I'm going to have to try the neurontin. The neuropathy has worsened this week and I'm feeling the need to put a stop to that!! I had started taking B12 as I read somewhere that that would help but haven't noticed a difference. My hair has really started to thin. I was hoping that I wasn't going to lose my hair but I'm starting to have trouble covering the bald spots so don't think it will be too long before I'm bald again. I really want to stay on taxol for a long time. Will scan in mid-march and will be hoping for NED or stable boy! Blainejennifer, don't forget to report back to us on your scans! Here's to GOOD news!!

  • blainejennifer
    blainejennifer Member Posts: 441
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    Glenna,

    The Neurontin truly works. It stopped my neuropathy cold. I stated with 300 mg, and have recently moved up to 400.

    As to the scans: No new lesions (a lesion that had escaped being imaged previously showed up, but MO thinks it was there all along). But, MO wants me to stay the course with Taxol for the next three months, as my TMs have been 40ish for a only 6 weeks. He'd like to see a longer run of low TMs before moving on to another therapy.

    Waaah. I want hair. But, I'm used to this routine and am tolerating Taxol well. And, it's working. So, no more whining and back to the infusion chair.

    How are you holding up?

    Jennifer

  • susan3
    susan3 Member Posts: 2,631
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    blainejennifer, glad to hear game plan hasnt changed. I like that when I can stay on a course of treatment for awhile. i am with you girls, hope to stay on taxol for a long time. just ending 4th month this wednesday. SE's are ok for me on taxol. so here's to Taxol!!!!!! yeah

    Good luck everyone...sweet dreams

    susan

  • GatorGal
    GatorGal Member Posts: 750
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    Jennifer, I'll definitely be asking for the neurontin when I see the onc. I think he had me on it when I did taxotere but when I changed chemos and ran out I stopped taking it. I'm tolerating the taxol very well and hope to have a long run. My biggest problem is the big D and I can control that pretty well with Imodium. I know my TM's are going down but can't remember what they are .... Chemo brain?? I think you should definitely stay on taxol if your markers are going down!! That is terrific. Glad you do not have a new lesion! You said you've had 28 Infusions. Is that 28 low dose every week or every three weeks?



    Susan, hope taxol continues to be good for you! I agree, a long run is preferable to changing chemos! I'm finishing my 3rd month this Wednesday.



    Best to all taxol gals!

  • blainejennifer
    blainejennifer Member Posts: 441
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    Glenna - I'm on a 3week on/1 week off schedule now. It used to be every week.

    It's sunny out today, so I'm a lot less grumpy. Aren't we all longing for Spring?

  • GatorGal
    GatorGal Member Posts: 750
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    Same schedule I'm on. Tomorrow is #3 and I'm looking forward to the week off. May go to the beach this weekend and hoping for some spring like weather!! Was your first cancer in 1961 or am I reading that wrong??

  • blainejennifer
    blainejennifer Member Posts: 441
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    Giiggle. I was born in 1961. Was trying to give an idea as to my age, without having to go and change it each birthday. Too confusing?

  • Latte
    Latte Member Posts: 141
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    Just found this thread and was wondering if anyone is doing taxol for stage four after they already did it earlier? I did 12 weeks taxol two years ago, and have just been dx stage four. My onc is talking about Xeloda, and I was just wondering if there is a reason not to try taxol again.

    And in answer to Jen's original question, I have a friend who is not on the boards, but she is stage four and has been doing weekly taxol for over two years now and is doing well on it. And she didn't lose her hair, it just thinned.

  • blainejennifer
    blainejennifer Member Posts: 441
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    Latte,

    I think a lot of us did Taxol for our original treatment, except for those who were dxed Stage 4 at the starting gate. I did it in 2006, dose dense. So, you can probably use it again - just another arrow in your quiver, right?

  • GatorGal
    GatorGal Member Posts: 750
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    Jennifer ... You are a youngster! LOL! I was thinking wow, first diagnosed in 1961 .... Thanks for clearing that up for me!!

  • susan3
    susan3 Member Posts: 2,631
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    hi girls,

    jennifer, I was born in 1960....birthday in 2 weeks !!!!! get to see my daughter..yeah. she is 4th year in college

    i was never on taxol before. 11 yrs ago i was on the "red devil"

    I am 3 on 1 off too. tomorrow i my 3rd one in my 4th month. still feeling strong :)

    night night everone.. sweet dreams :)

  • Frapp
    Frapp Member Posts: 343
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    Hello all,

    Newbie to taxol here. I have just had my second infusion yesterday. Would love any and all information/suggestions you have. This is really my first chemo infusion. I had one infusion of Doxil prior to this that did not go well so my onc thought it best to switch to a weekly chemo which she felt is better controlled than the monthly.