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Weekly Taxol for Stage 4

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  • rkt
    rkt Member Posts: 8
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    Hi, Frapp,

    Best advice I can give is to try l-glutamine as soon as you start to have any numbness in your toes/feet/hands.  I started with 500 mg a day (1 pill) and every time my toes started to get numb again, i would add another 500 mg pill.  Now at 9 pills a day - but no neuropathy at all.  doctor ok'd it and I found clinical trials where it had been used to combat neuropathy with high dose taxol (adminstered once every 3 weeks, rather than weekly).  I also take B-complex. 

    Had to move to taxol (in November 2011, because of mets to liver.  I just got back from Houston last week and my scan was still clean - NED. (3 weeks on , 1 week off).   So get to continue on weekly taxol - will go back in June (4 month interval this time) for next round of scans.

    I didn't completely lose my hair but did get a pretty good case of essentially male pattern baldness :)  But hair started growing back end of April, so now I keep it short and use mousse!  I have found taxol ok - I am just really tired on days 3, 4, and 5. 

    Becky

  • kjones13
    kjones13 Member Posts: 662
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    Frapp--I just finished 18 weeks of taxol. Looking at what some of the other women have endured, it seems taxol, especially weekly taxol is fairly tolerable. It's the only chemo I've had, so I have nothing to compare it to. I am 34 and I was in descent shape when diagnosed in sept. was a college athlete. The first couple weeks seemed like a breeze. I did lose my hair...well it's really thin so i shaved it. When it became cold outside, I stopped walking which in turn made the fatigue really bad. I would advise to take b6 and glutimine to stay on top of neuropathy. I have some numbness in fingers and toes. I never threw up, but I had pretty severe diarrhea. Controlled with lomotil. Nosebleeds throughout. I was pretty wiped out at about week 15 and had to take a week off. Taxol also made my white blood counts low so i had neupogen shots for three days after treatment. Everyone tolerates it differently and cancers are genetically different and respond differently. I had my scans yesterday and see the doc tomorrow morning to see how I responded to the taxol. Prayers to you in that taxol treats you well and knocks the cancer down!!

  • Anko66
    Anko66 Member Posts: 30
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    I had a scan and a liver biospy yesterday and I just lost it whilst lying there.   The radiologist had  to sedate me so he could finish the procedure (the liver biopsy has got to be the most horrible experience I have had since been diagnosed).   I then cried for about 2 hours after just lying in the surveillance room.  I was just so desperate to know if Taxol is working for me second time around (I did 16 weeks last year and got to NED).  Well, eventualy I found out that my liver tumours are shrinking.  It makes all the rubbish, the nose bleeds, the fatigue, the diarrhea, etc. worth it.

    Just wanted to spread some hope around.

    Anne

  • blainejennifer
    blainejennifer Member Posts: 441
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    Guys -

    Just got a recent set of scans, and all my rib lesions are not present. I have one arm lesion that had evaded imaging before, so it's not new, just new to us. The only lesions still lighting up are on the cervical spine and pelvic iliac crests, but they are much reduced. TMs have been in the low 40s for the last 6 weeks. I started at 2,600 in July, 2012, and the decrease has been steady.

    I guess this Taxol stuff is working, huh?

    My blood counts have remained stable since the beginning of treatment. My hair is white and so thin, with male pattern baldness, that I shave it quite short and bulk it up with white powder. My eyelashes are struggling to re-appear, but look kind of stunted and weird. No eyebrows yet. I miss those. They really help with facial expressions.

    I have fatigue on day three and four. Thanks to Ritalin, I can still function pretty well on those days, though I do get a lot of knitting done in front of the TV.

    According to MO, I'm looking at three more months of Taxol. He loves how it cleared up the rib lesions, and would like to see it do the same thing for the other bone lesions. I have no bone pain At All now, and only take an Oxycontin 10 morning and night to mask the effects of the neuropathy (tongue soreness, burning feet, some shooting nerve pain down the legs). Well, I might have bone pain that's not making it through the Oxy veil.

    Anko - I so understand about the procedure fear. Firstly, they are dehumanizing. Secondly, they are uncomfortable. Thirdly, they don't exist in void as they are a huge reminder of our disease process. So, I make sure I have a healthy dose of Ativan on board so that I don't blub my way through the entire thing. Otherwise, I start crying in the waiting area, and don't stop till I'm in the car, on the way home. I so very much dislike Doctors and Needles and Gowns. How did I end up with this sort of disease?!?!?

    Emergency hot cocoa infusion, STAT.

  • kjones13
    kjones13 Member Posts: 662
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    Just thought i would let you all know my scan results...NO cancer in my breast, chest wall, or lymph nodes! This is amazing because the MRI in sept showed the cancer consuming my breast from chest wall to nipple (12cm). My 3 spots on my liver have shrunk even more! The spot on my spine is stable. My doc is presenting my case next week to a university team to get ideas about next steps for treating the liver. I'm so very excited! It does make all the side effects worth it! YAY!

  • susan3
    susan3 Member Posts: 2,631
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    congrats EVERYONE on great scan results. I too have had good scan results. yeah taxol

  • GatorGal
    GatorGal Member Posts: 750
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    Okay, now I'm looking forward to my next scans .... Second week of march! You gals have had wonderful results. Congratulations. So far I have to say taxol has been a breeze for me. Hope I get to be on it for a long, long time. Diahrrhea and neuropathy and fatigue I can handle if I have results as good as I'm hearing from you all. Yeah!!

  • justjudie
    justjudie Member Posts: 196
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    After my last chemo (Abraxane) I had to have three Neupogen shots. That was quite miserable, .pt of bone pain and feeling generally unwell. hope I never have to have that many again. I didn't know bout the possibility of leukemia from Neupogen. One more thing to worry about.

  • GatorGal
    GatorGal Member Posts: 750
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    Dang, I never heard neupogen could cause leukemia. We're damned if we do and damned if we don't. I've never had neupogen. How about neulasta?

  • Bostonian18
    Bostonian18 Member Posts: 1
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    Hi,

    My wife has started on weekly taxol again after getting it in 2010, after dx, with herceptin. She had lung mets in 2012 jan, was diagnosed triple negative now. Was on carboplatin and xeloda for 6 month. All this was in india. We came to Boston last June and the onc at Dana Farber changed to navelbine followed by 8 cycles of Halaven. She also had bone mets and got radiation in legs and zometa too.

    In last scan ovaries and liver is also showing mets, so shifted her to taxol again.

    The main problem is that she is having lots of gas and her stomach is like 9 months pregnant. Is anyone else also having this?

    Suggestions on what to do welcome.

  • GatorGal
    GatorGal Member Posts: 750
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    Bostonian,

    The good news is that your wife is being treated at a great place! Sounds like she is having a terrible time, though, with the taxol. I'm not having any of those problems, so can't really help you there. I'm sure someone will be along soon to answer your questions. My best to you both!

  • blainejennifer
    blainejennifer Member Posts: 441
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    Bostonian,

    I had the same problem, and it turned out that the Taxol had caused me to become completely lactose intolerant. And, to make matters worse, I had been eating a lot of dairy foods for the calcium, as I have bone mets.

    What does her medical team say? Bloating is also associated with ovarian metastases, so those little buggers could be the source of the problem.

    Hoping your wife feels better soon,

    Jennifer

  • Latte
    Latte Member Posts: 141
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    In the end, my onc cancelled her earlier thought about Xeloda and wants to do taxol and carboplatin, on a three-weekly cycle. I'm going to give femara a go first to see if it stops the bone met progression, and if not then I think I will go with taxol and carbo...

  • blainejennifer
    blainejennifer Member Posts: 441
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    Latte,

    Here's to Femara and it's cancer busting properties!

  • GatorGal
    GatorGal Member Posts: 750
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    Started a new cycle of taxol today and got CT scan results - no progression, stable, YEAH! The Benadryl knocked me out cold! Next time I will take someone to drive me home! No problems with the treatment .... Yet!



  • Latte
    Latte Member Posts: 141
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    Yay Glenna!!

  • susan3
    susan3 Member Posts: 2,631
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    dont know if anyone is interested, but i have "never been used" scarves and some hats. i will mail them to anyone who wants them. pm me if you want them :)

    susan

  • GatorGal
    GatorGal Member Posts: 750
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    Susan, I'm sure you'll get takers on the scarves and hats. I have a ton. Before I retired my school had a tea party for me and all my teacher friends brought hats for me. It was awesome. I have a hat to match every outfit. Of course, my hair hasn't fallen out from the taxol but it is thinning. I'm sure I'll be needing those hats soon!

  • Frapp
    Frapp Member Posts: 343
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    Hello all, I am a new taxol member. I just had my 4 th round. My onc at Dana Farber doesn't want to give me a break until I need it. I started with one dose of doxil but ended up in the hospital so onc switched me to taxol. She said its easier to manage since its once a week. I hope to get a lot of advice from you ladies. So far this seems like a fairly easy chemo. I have one foot that feels sore around the outside of my heel. I also get incredibly tired at 3:00 every afternoon and end up dropping off to sleep for a couple of hours every day.

  • Z28Femme
    Z28Femme Member Posts: 9
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    I currently just started my chemo treatments on 3/7. My cycle is every 21 days with Taxol also on day 8 of each cycle. I have noticed an acne rash all over my chest, neck, back and it's creeping up on my face. My nose has started bleeding (started yesterday). I am also experiencing severe stomach cramping and I've been glued to the bathroom the past 2 days. I already have constipation issues and take stool softeners and miralax, so I'm finding it difficult to find an "in between." I haven't noticed much fatigue as of yet...

  • SPAMgirl
    SPAMgirl Member Posts: 137
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    My onc. Prescribed Lyrica for the neuropathy and it worked really well. After awhile, I did have to increase to a pill in the morning and one at night as the cumulation took effect.

  • GatorGal
    GatorGal Member Posts: 750
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    Welcome, Frapp. Hope taxol is as good for you as it has been (knock on wood) for me. Last ct scan was great .... No progression! TM's down. My major SE is the neuropathy and I take gabapentin which helps a lot but does make me tired. I do have stomach cramps and bathroom issues but bearable. Z28, make sure you tell your onc about the rash and nose bleeds. They always ask me about nosebleeds so it must be something they look for. Best to all taxol friends!

  • Frapp
    Frapp Member Posts: 343
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    Thanks Glenna. I'm on gabapentin also, I just didn't know what it was for. I spent some time in the hospital after my first doxil infusion and came home with so many meds I have to keep list so I don't forget any. Prior to that I was only taking 1 pill and a couple of vitamins. Now I have many pills to take morning noon and night. I'm not sure which one is the culprit but I can't stay awake past 3:00 every afternoon. I don't think it's the gabapentin cause I take that at night.

  • blainejennifer
    blainejennifer Member Posts: 441
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    For those of us that are trying to find the Goldilocks point for bowel management: try a soluble fiber supplement. I use Fiber Choice tablets. That way, if you are experiencing the big D, the fiber will bulk up your stool and slow passage down. If you are, ummm, "pellet pooping", the soluble fiber will soften things up. It's really the best of both worlds. Years of irritable bowel have educated me.

    I'm looking at - at least - three more months of weekly Taxol, as some of my bone mets are still hanging in there. I've been doing it for almost a year now, and it has resolved about 65% of my bone mets completely, in that you can't even see them on a scan. And, MO can't quite tell if the others are healiing or still making trouble. TMs are 40 (from 2,600).

    And yet, I keep waiting for the other shoe to drop. I know I'm going to have to face progression at some point, and I'm having a little trouble mentally with that. I'll be having a perfectly lovely day, and then that thought will creep in at the corners. Just another day in Cancerland, right?

    Crazy Alert: You know what it is? My hair is trying to come back, so I'm convinced that if the Taxol is no longer battering my hair follicles, then it is no longer working. This has no basis in reality, according to the Onc Nurses, but my foggy brain is telling me otherwise. And, I was driving home from school drop-off, listening to the radio, and NPR was having a really macabre morning. The highlights included anticipation for a segment on a baby dying of Tay-Sachs (I can't wait to hear all about the Suffering!), and another segment on a dude dying of cancer (Tell me more!).

    So I'm going to find a web site with nothing but kittens, puppies and ponies. If you need me, leave a message at the beep, cause I'll be playing with my unicorn today.

  • Frapp
    Frapp Member Posts: 343
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    Today seems to be a great day for brining out the unicorns. Do you mind if we join you?

  • MamaWoods
    MamaWoods Member Posts: 1
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    Hello Ladies and family of Ladies,



    I have completed 6 sessions of Taxol with the 3/1 routine. I have found this to be much much easier than AC dose dense. I had a PET scan last week and the cancer in all areas including lung, liver, bones, spine, ribs and other places has all but gone! There is no hypermetabolic activity anywhere and primary lung tumor is by there.

    My doctor said it was the best response to chemo in his 30 years of practice. And he smiled and was happy which was odd as he is all business.

    So I will continue with Taxol I guess forever, or until it stops working or I get too buzzy finger and toes.

    Right now I am looking into a medical retirement since it is hard to go to work when the chemo wipes me out for 2 days.

    I thought I was going to die when I received the diagnosis in January. But this website has kept me positive, and prayers from hundreds of people I know and don't know have been my saving grace.

    It was a miracle when we saw the PET scan and report. Taxol has been a perfect drug for me, except the bald part, but fuzz is coming back. I read from another lady the concern of nuepugen causing luekemia so I will be investigating that next as I get two tummy shots following chemotherapy to boost the count back up.

    I pray for all of us Stage IV ladies that life gives us gifts of love, laughter and happiness while we continue to fight for a cure.

    Hugs to all

    Maylene

  • blainejennifer
    blainejennifer Member Posts: 441
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    Welcome to the Taxol club. It's lovely that it is working so well for you! Talk to your Doc about Neurontin if the neuropathy starts bothering you. 400 mgs has kept mine at bay.

    In communal baldness,

    Jennifer

  • GatorGal
    GatorGal Member Posts: 750
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    Wow! Marylene, that is just awesome news! I just did the 2nd treatment of my 4th round of taxol and am having good results, too. My CT scan last week showed major tumor stable and one small thingie (brain fart, can't think of what it's called) disappeared completely. I'm hoping to be able to stay on it FOREVER as the SE's aren't too awful (yet). I haven't lost my hair but it is thinning. I was going to shave it off but didn't and now I'm glad. Did lose it with taxotere last year (or was it the year before?). Had a benadryl nap today and now on a decadron high. Figure I'll be up for hours! I take neurontin as well for the neuropathy and it helps a lot but makes me feel tired. I try to nap and can't, but my eyes are heavy all the time. My neuropathy seems to affect my left foot and hand more than the right side. Does anyone else have that? Jennifer, I'm going to try the Fiber Choice tablets. I have the D problem every morning after I eat something which makes me not want to eat if I'm going out. And I do like to go out!!



    Marylene, I did go on medical retirement when the chemo was causing me to take too much time off. I haven't regretted it for a moment.

  • susan3
    susan3 Member Posts: 2,631
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    congrats mamawoods great news. i have just finished 5th round of 3/1 and having great results also.....Yeah to us and chemo fuzzy hair, for those who have hair left. Happy Easter All

  • blainejennifer
    blainejennifer Member Posts: 441
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    I'm closing in on a year now, and my TMs floated up (started at 2,600, got to 40, recently started going up to 90). Did a PET scan on Wednesday which show everything is stable.

    So, it could have been due to a tummy virus we all had, or reflects what the PET can't see yet. I am hoping for the former, but even if it is the latter, there are other chemos. Taxol is my first.

    Hope every one is doing well, and looking forward to Spring.

    Fuzzy headed (in more than one way) Jennifer