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Weekly Taxol group

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Comments

  • Madelyn
    Madelyn Member Posts: 24
    edited August 2012

    Thanks Sissydi,

    I just finished 4 AC and I was looking for a Taxol thread...thanks for starting this.  I'm looking forward to no more yucky taste and less fatigue.  How are you doing? 

  • MandalaB
    MandalaB Member Posts: 52
    edited August 2012

    Taxol #6 today....HALFWAYS DONE!

    On cloud 9 since the main breast tumor (there are 4 total) SHRUNK! It had shrunk some with the AC- and then stayed stable through the taxol- axilla always staying the same too- never shrinkage there-

    but the main tumor shrunk!
    My guess- and I would like it to be true - I have been taking powdered organic turkey tail mushrooms since Taxol #3. I read about a woman whose son is all into medicinal mushrooms- a very good authority on them - his mom was 86, stage IV BC and took the tukey tail with taxol (as well as herceptin) and they haven't found a trace of cancer in her body for 3 years.
    Google "Stamets Turkey Tail"
    It also could just be chemo, or the countless blessed artifacts people have touched me with, the prayers, the love- what have you- but shrinkage happened and it was significant today. I thought it had disappeared altogether since I couldn't find it for 2 days before the weekly appt. It was very all of a sudden.

    srff- i had the same timeline of symptoms as your mom so far-
    it gets more on an even keel as you go-

    Glutamine does help. as does b6. and CoQ10 has helped with the bone pain. B6 is what my oncologist and RN stressed for the neuropathy.

    Theres a vitamin powder with all that stuff in it to add to your glass of water that comes in a yellow box at the health food store- I wish I knew the brand. ugh. Makes it taste orangey and kinda like tang.

     steroid high is from dexamethasone here. i do not like it- but they have been gradually bringing down my dose every week.

    good job everyone so far! 

  • Elizabeth_D
    Elizabeth_D Member Posts: 20
    edited August 2012

    Mandala hoping you are better, maybe a virus?  I would love to know how you are feeling.   

     Jpmomof3, were you on dose dense every 2 weeks or weekly?  I am on dose dense and I notice most are on weekly.  

    I go in today to find out what happens with my last dose. As some of you may have read, they did not want to give me Taxol last Tuesday, which would have been my last, due to intense neuropathy issues.  I go back in one hour to get a reduced dose or none at all. Will let you know

     Thanks for everyone's sisterhood and support.  I have never blogged in my life, but this thing rocks!

  • MandalaB
    MandalaB Member Posts: 52
    edited August 2012

    I think it was just dumb eating raw cookie dough.
    I got yelled at by my RN for doing it. lol- it was kind of just afterthought after i ate it- whoops. I learned my lesson.

    ps- in addition to my turkey tail testimony- I compared my blood tests and my numbers are slowly creeping back UP. (it boosts immunity too)

    yay!

  • teeballmom
    teeballmom Member Posts: 56
    edited August 2012

    Hi Girls.

    Next week I begin weekly taxol (with Herceptin every 3 weeks) for 12 weeks.  I'm really nervous, even though it's supposed to be less harsh than the AC I had.  Hoping for the best.

    MandalaB:  I just started taking Turkey Tail on the advice of my pharmacist/herbalist.  Supposed to be great for the immune system I heard.  Hoping so.

    My ONC has me on Alpha Lipoic Acid for neuropathy (to help lessen the SE).  Anyone else taking this?  I'm getting some great information from all of you.  Appreciate it.  Still scared, though, but maybe because it's something "new".  

    Take care.

  • Elizabeth_D
    Elizabeth_D Member Posts: 20
    edited August 2012

    teeballmom and mandalab what brand of turkey tail are you taking?  

  • teeballmom
    teeballmom Member Posts: 56
    edited August 2012

    The brand I use is Host Defense. 

  • MandalaB
    MandalaB Member Posts: 52
    edited August 2012

    My turkey tail comes from the Herb Shop in Grants Pass, Oregon- its plain straight up raw organic powdered fungus. It says "nano" - but i don;t know what nano exactly means. My friend told me that it gets into the bloodstream faster when it's nano powdered.

    I looked on their website but can't find it.
    (My friend works for them and sent it to me)
    http://www.bulkherbshop.com/How_to_Contact_Us.html

    contact info on getting it should be in the web page :)  I think they would be able to help :)

  • nkb
    nkb Member Posts: 1,561
    edited August 2012

    I am 2 weeks past my last taxol of weekly dose x 12. I took glutamine 10 grams 3 times per day for the day before, day of infusion and day after to help prevent neuropathy. A recent study confirmed it could be helpful.

    Symptoms for me seemed to jump all over the place- different with each infusion, but , generally mild. I got some muscle aches with # 10 and very tight muscles for the last 2 weeks, that has improved over the last 2 days. ( steroids may have masked that symptom)

    I am also now tired and could sleep 10 hours per day, with work my exercise tolerance is improving. I walked 5 miles per day throughout all the chemo- but, at times very slowly.



    90% of my hair came out with AC it started to grow back in on taxol #2 and then began to shed at taxol #6 or 7. I still have fair coverage of white hair about 1/2 inch long, but losing at least 50 hairs per day. I expect new hair to start growing in a few more weeks ( hopefully on my head and not just face, legs and armpits lol!)

    Eyebrows and lashes left at taxol #2 or about 6 weeks after done with AC. they have partially regrown and fallen out again since then. Are very scraggly and mostly white.



    Fingernails and toenails are yucky and painful. Feels best not to get them wet ( ie no dishes) and careful with certain nail injuring tasks. None have fallen off ( my onco says he has seen far worse. ) I paint the toenails so can't really see the day to day progression. Soak my fingernails in an olive oil tea tree oil combo which seems to help.



    Neuropathy is mild and seems to be improving. Was told it takes 3-6 months to resolve. I can button things, toes feel like walking on puffs and are worse after sitting or sleeping. Crossing my legs and some other positions seem to make it worse. No pain just a feeling of numbness



    Good luck everyone- rads next for me and really hoping that I am killing a lot of cancer!

  • jpmomof3
    jpmomof3 Member Posts: 198
    edited August 2012

    Elizabeth I was on taxol weekly.  My MO prefers it due to a lower severity of side effects for most.  Its all just preference though.  Fight on ladies!

  • teeballmom
    teeballmom Member Posts: 56
    edited August 2012

    Nkb:  My nails hurt somewhat, too, so I'm having to be really careful about hitting them. 

    So yesterday I spoke with an acupuncturist my oncologist referred me to for a free accupuncture and massage session next Friday and I'm feeling better about my SE fears.  His experience shows that accupuncture has helped many of his patients with neuropathy (which is my biggest fear) and I'm just so glad I can have this experience to see if it will be any help with SE's from Taxol.  I'm so hesitant to believe that I will not experience any SE's like my ONC says.  I'm hoping, but still really hesitant. 

    Take care and have a great weekend everyone!

  • ladyfighter
    ladyfighter Member Posts: 57
    edited September 2012

    Hi all!! I'm 4 weeks PFC from 12 weekly taxol/herceptin. I had my first herceptin yesterday for every 3 weeks for a year. I'm feeling really great. The longer PFC from Taxol, the better I feel! More like human!!! It is doable!



    My hair is growing and growing. I braved myself to go topless so far 2 weeks! No more hat or scarfs I got sick of them already! Still barley eyebrows or eyelashes boooo! I use fake eyelashes.



    For newcomers: I lost my hair 2nd week in AC, and grew back in 2nd taxol, lost my brows and lashes in 3rd taxol. My worse SE in taxol is only dizzy/vertigo comes and goes, once UTI, and a week long of low grade fever (possible from virus). That is all, it was a breeze compared to nightmare from AC dose dense! I never had to take neupogen with taxol, only with AC.



    I hope sissydi and jpmom are doing good with longer PFC. ? I have appt next Thursday to meet new radiologist to talk about radiation. Anything I should know? I'm a little nervous about that. My MO thinks I should do radiation because of HER2+....oy fey



    Xoxox's to all





  • Sissydi
    Sissydi Member Posts: 183
    edited September 2012

    Hi ladies! So glad to read your all moving on and feeling better. I still have some fatigue, especially since stopping the decadron........it pumped me full of energy, now it's gone! I am working out on the treadmill at the gym; 30-40 minutes three times a week.



    My rad onc has me seeing a lymphadema specialist; I don't have it, but he's big on prevention! So I will get fitted with a light compression sleeve next week to wear during certain strenuous activities....anybody else seeing a physical therapist for prevention?

  • Toastiecat
    Toastiecat Member Posts: 13
    edited September 2012

    Hi there,

    Are any ladies on the board just doing weekly taxol and herceptin (no prior chemo)?  I am starting next week, and just hoping to find out some more about how far in I'll lose my hair, etc.

    Did anyone go through it all without a port?

    Thanks to all of you for sharing your stories!

  • nkb
    nkb Member Posts: 1,561
    edited September 2012

    Toastie- I did all my chemo without a port. My hair fell out with AC , but, the hair on my head started to grow back during taxol. It started to shed a lot about taxol # 7, but, still grew. I never had herceptin so can't help you there.

  • gonegirl
    gonegirl Member Posts: 1,022
    edited September 2012

    Toastie. I started with Taxol and Herceptin and have a port. I started losing my hair I think about a month in. I lost most of my hair but not all.



    My side effects were muscle spasms, constipation, indigestion, and extreme exhaustion. Taxol is very effective with Her2+ cancer.



    Hang in. You'll make it.



    Susan

  • mgdsmc
    mgdsmc Member Posts: 28
    edited September 2012

    Hello ladies



    I have a question. I hear everyone talk about the steroids and SE. I'm on weekly taxol and only take 2 steroid pills the night before treatment. The only thing that happens is I wake up around 2am every Tuesday before treatment. Are you guys taking steroids more often or by IV?

  • nkb
    nkb Member Posts: 1,561
    edited September 2012

    Mgdsmc-I got IV decadron and IV hydrocortisone with each taxol. The decadron was oral for me with the AC, but IV with the taxol. I was also given the hydrocortisone because I had an allergic reaction with the first dose. I was also given oral Zyrtec and IV Pepcid with each dose of taxol.

    I never slept the night of the infusion due to the steroids. I learned to make a list and get a lot done. The next night I slept like a baby.

    You may be getting some IV "pre-meds"

    Hope it is going well for you

  • mgdsmc
    mgdsmc Member Posts: 28
    edited September 2012

    Interesting I got IV decadrone with my AC. I take 2 decadrone pills the night before but that's it. I get Benadryl and pepcid IV before each taxol. I'm an RN so I'm aware of the SE of steroids. I gained weight with AC and hated it.

    Since I started taxol I have been watching what I eat and had been walking 3 miles 6 days a week within 45 minutes. I increased that to 4 miles in 52 minutes. I don't wear anything on my head the peach fuzz helps me stay cooler :)

  • nkb
    nkb Member Posts: 1,561
    edited September 2012

    I felt like no matter what I did I gained ~ a pound per week with The taxol/ steroid combo. I exercised a lot and watched what I ate and it still happened. I am 2.5 weeks post taxol and have lost about 5 pounds so far. I am still exercising a lot, although the last few taxols really affected my muscles and my exercise tolerance. That is getting better now.

  • mgdsmc
    mgdsmc Member Posts: 28
    edited September 2012

    I understand how you feel. As much walking as I do and watch what I eat don't really see a difference. I refuse to weigh myself because if I haven't lost weight I wil get frustrated and give up. I feel lighter and my clothes aren't tight anymore. People always say how much better they feel afterward wish I felt that way.

  • jpmomof3
    jpmomof3 Member Posts: 198
    edited September 2012

    Hi ladies, I am 10 weeks pfc taxol now. I did AC too so can't answer the questions about when the hair comes out with taxol but it seems to happen with the nadir period for most chemo medicines and for taxol it is 15 to 20 days. I think the hair loss is more variable with taxol than some. Mine was mostly gone from the AC and I started to get the peach fuzz at about 6-7 treatment of taxol.



    Hi ladyfighter! You look great! Isn't it great being done! My energy is basically back to normal, the surgeries knocked me down a bit since it was hard to find a comfortable position to sleep but the taxol wore off pretty quickly...



    Sissy, I am starting rads next 1-2 weeks. I have big x's in sharpie on me now and have my next planning appointment this Friday and the third planning one next Monday. I am not looking forward to getting my energy zapped again but I have heard that most people going through chemo aren't that bothered by the fatigue. I guess it's all relative.

  • nkb
    nkb Member Posts: 1,561
    edited September 2012

    Mgdsmc- how are you not feeling good? How many taxols do you have left?



    I weighed myself to keep track and now finally am watching it go down.

  • Lauren423
    Lauren423 Member Posts: 19
    edited September 2012

    Toastie - I am doing Taxol/Herceptin only with no prior chemo.  I started to lose a significant amount of hair at around day 20 or so.  We buzzed it to about an inch, then a little shorter, now there are blad spots, but not totally gone.  I might shave it soon as the little pricklies that remain are uncomfortable.  I still have my eyelashes and brows.  I do have a port...it wasn't even presented as an option to me.  I'm glad I have it - seems to make things very easy when I get treatment.  I have 5/12 Taxol/Herceptin to go, then Herceptin every 3 weeks for 9 months.  Side effects have been extremely minimal - I get TX on Friday AM and feel tired on Sundays, but that's about it.  No nausea, mouth sores, fatigue, etc.  Please PM me if you have any other questions!

  • mgdsmc
    mgdsmc Member Posts: 28
    edited September 2012

    Tomorrow is number 8. I'm feeling ok. I was talking about how people say exercise make them feel better, elevates moods and gives them energy. For me my mood and energy stays the same when I'm done.

    Everybody thinks I should weigh myself. I know if after all the walking and watching what I eat for the last 6 weeks if I only lost 5 pounds I would quit. The month I was diagnosed I had lost 30 pounds on weight watchers

    (4 months)without excercising. I gained about 20 of it back on AC.

    The only thing I like about excercising is when I'm done.

  • nkb
    nkb Member Posts: 1,561
    edited September 2012

    Mgdsmc- you are 2/3 done which is so great! I think that although you may not be getting that endorphin high etc, you are keeping your muscles strong and mitigating the many side effects of chemo. Exercise is also very important to prevent recurrence and it lowers blood sugar which seems to have a role in breast cancer.

    I understand your frustration and I think if you keep up your good eating habits and exercise the weight will come off after you are finished with chemo/ steroids. A lot of the weight is third spaced fluid.

    There are so many opinions re weighing oneself- for me it keeps me committed to good eating and exercise- I have to say it was very discouraging to watch it rise without getting to eat the calories! But, it is going down steadily and that is great also. I still feel stuffed into my jeans tho.

  • ashley2
    ashley2 Member Posts: 24
    edited September 2012

    helloToastie, I'm doing taxol/herceptin weekly ( actually I did finish the taxol last week, will start the 6th of sept herceptin alone). but before that I had 4xAC. no port for me and I was ok, any problem because of that. I lost all my hair on AC, did start to grow on taxol, but not remember exactly when. 

    good luck ........... 

  • Toastiecat
    Toastiecat Member Posts: 13
    edited September 2012

    Thanks so much to everyone who replied. I'm glad that now I have a bit of a time frame for hair loss, and very glad to hear about those of you who did it port free. The PA thinks I will be okay, but it was something I was nervous about. Have a great week everyone, be well.

    xoxo

  • Sissydi
    Sissydi Member Posts: 183
    edited September 2012

    I' m four weeks now pfc, and still tire easily. This weekend, I slept for 12 hours! Feeling better today, counts are good; just not feeling back to normal quite yet. I know how you guys feel about exercising; my weight stays the same, and I get very discouraged because I hate it!

  • gonegirl
    gonegirl Member Posts: 1,022
    edited September 2012

    Sissy; I am a 2 months out of chemo and still not up to full speed, but much better.  It took about 6 weeks for the water weight to start coming off.  Now I'm down 8 pounds and that mostly from peeing it out. :-)

    I was exhausted on Taxol.  Everyone is different.  I took baby steps to start getting my strength back.  Was just starting to move toward going to restorative yoga and then I fell down my g-d front stoop and sprained my ankle. Going to call the yoga place to find out more about restorative yoga to see if I could do it with a sprained ankle.  It's frustrating and I have to remind myself where I was just a month ago to keep my chin up.  Sometimes I feel like bang things with that chin in my frustration

    Susan

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