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Weekly Taxol group

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Comments

  • Sinsin
    Sinsin Member Posts: 200
    edited July 2014

    Jenwith4kid and HomeMom, I have never been able to gain weight. I have always weighed the same since high school but suddenly these past few weeks I gained 10lbs and it's all in my stomach. I look 3 months pregnant. LOL And it's all due to being in menopause from chemo. Sorry ladies, but gaining weight is certainly a high possibility unfortunately. LOL

  • Tinkerbells
    Tinkerbells Member Posts: 53
    edited July 2014

    I have gained weight- the total lack of exercise might be it, was a regular gym goer before. TCHP has been kinder to me than dose dense AC. Sooo happy for you who have finished. Looking at 6 more has me down- I think 2 more and I will begin to see the light at the end of the tunnel.

    My case will be presented to the tumor board because it is so unusual- my positive node was intrammamary and excised . The question is to radiate or not. I want it- if will give me a 3-4% benefit in recurrence rates. Not a lot, I know, but a lot to me personally. I have small children and want to be around as long as I can to see them grow up. Not all of my medical team is on board. I'm apparently the one crazy person who wants rads.

    I know this much- if it comes back and I have not thrown everything at it, I will never forgive myself.

    Wishing you all minimal SE's and success stories all around.

    Sabdra

  • homemom
    homemom Member Posts: 842
    edited July 2014

    I was walking about 3-4 miles per day - three to four days a week and was making progress. I have never had weight issues either, but the last year all I did was work and not exercise so I gained almost 20 lbs. I need to work on my arms too. My mother is overweight and has been for at least 30 years, so my sister and I have always made sure we stayed in those size 4's!

  • Tinkerbells
    Tinkerbells Member Posts: 53
    edited July 2014

    when we are done we will start an exercise group in the board!

  • jhodro
    jhodro Member Posts: 80
    edited July 2014

    i love that idea. Maybe we can get some realistic nutrition advice too--not the avoid all sugar and red meat variety!! :)

  • homemom
    homemom Member Posts: 842
    edited July 2014

    I was a little anemic at my last visit. The nurse told me to eat more red meat! lol oy

  • mmtagirl
    mmtagirl Member Posts: 325
    edited July 2014

    I was doing ok on keeping the weight stable on AC but have gained 5 lbs since starting weekly taxol on July 1. I am exercising a few days a week but used to be hard core 4/5 days. I would enjoy the extra motivation. 

    On another front, face and tongue are weirdly numb or loss of sensation with tongue tingles. Not sure how to describe it. Light nosebleed this morning. On the positive side I have more energy. Haven't taken a nap in two days. Gearing up for my weekly mood slide to start tomorrow...

  • Sinsin
    Sinsin Member Posts: 200
    edited July 2014

    I love the idea of an exercise group! Great idea! I think I am having a delayed side effect with the steroids. All of a sudde these past few weeks my intake of food has increased big time. For instance, I treated myself to half a big candy bar of an almond Hershey bar and then inhaled an entire bag of Haribo gummy bears and now want some Chinese food. My hubby even offered to go out and get me some but I would t let him. But I could seriously put away some egg rolls and lo mein and even some egg drop soup. Mmmm . . . That sounds SO good! See? I have a problem! LOL

  • homemom
    homemom Member Posts: 842
    edited July 2014

    On Taxol, does you taste buds get affected like they do on A/C? For a week after I have not been able to enjoy food. Today, 9 days after my last A/C, my taste buds returned and it was wonderful!

  • brigadoonbenson
    brigadoonbenson Member Posts: 198
    edited July 2014

    I had no tastebuds on Xgeva but everything tastes great on Taxol.  Hope it is the same for you, HomeMom.

  • Sinsin
    Sinsin Member Posts: 200
    edited July 2014

    HomeMom, Taxol ruined my taste buds and I can no longer eat cheese and bread as it has such a horrific bland taste. 😔 I'm hoping I can enjoy them again soon now that I am done with it.

  • MomMom
    MomMom Member Posts: 334
    edited July 2014

    Homemom,  After a 3 week break post AC, my taste buds returned when beginning Taxol. However over the months of Taxol, taste buds shot again.  With only one more Taxol to go, I got my Magic Mouthwash and Fluconazole for thrush refilled this weekend and it has really helped. 

  • mmtagirl
    mmtagirl Member Posts: 325
    edited July 2014

    I lost my taste buds on the one round of Taxotere but they came back on AC.  So far on taxol I have kept them and have an increased appetite although my tongue has been feeling really weird so I wonder if that all is changing soon.  Round 4 tomorrow.

  • linzer
    linzer Member Posts: 50
    edited July 2014

    Just wanted to chime in on Taxol and taste buds. I will be doing #7 this week and so far I'm doing okay regarding my mouth. I had one or two weeks that taste was wonky but that seems to have resolved. I have been using the Biotene toothpaste and mouthwash 3x per day religiously and I make sure I gently brush my tongue. Also, just after infusion on Wed/Thur/Fri I use the baking soda / salt gargle and I've been doing fine. I do find that things are off - one week salt is overpowering another pepper (even the smallest amount) but no major changes otherwise. I've had a couple of weeks when I thought for sure I was going to get mouth or throat sores, but then I amped up the salt/baking soda and kept it at bay. Some days I'm doing it four or five times... but so far so good. 

    Also, I wanted to share another thing that I discovered (I think someone mentioned it on one of these threads) - the L glutamine powder. Not only is it supposed to ward off neuropathy, it also has cured the big D for me amazingly so! I was on Immodium but getting the most horrible double over cramps every time I had to go. I'm also on Herceptin and Perjeta so I'm not sure if TH or P are the culprit - or all three! After one day of using the powder I was feeling huge relief. I found a study from Dana Farber that supported using up to 30g per day. I have been using about 18g (3 tsp of 3g each in morning and then again at night)  because I can't stand swallowing that much mixed into juice (it's kind of gritty). If you put it in a smoothie it wouldn't be as bad. I bought the Pure Encapsulations brand because it is known to be pure and not loaded with stuff. It isn't cheap but so worth it. Prior to the l-glutamine I hadn't had neuropathy beyond some mild tingling in my right hand/arm. I still have that, but it comes and goes and hasn't gotten worse. It's worth it for the tummy piece alone. Just thought I'd share :) Linda

  • homemom
    homemom Member Posts: 842
    edited July 2014

    Wow thanks guys for all the responses.  I have the Biotene mouth wash, but maybe I should get the toothpaste too. I have not had any sores in my mouth with the four rounds of A/C, so hopefully I won't have that issue here. I have the glutamine powder and will try the smoothie idea since I'm not a big fan of orange juice.  Although Simply Orange is pretty good.

    Seems it will be crap shoot on the taste buds. My buds are back as of yesterday so I am really enjoying food again. I might get Mickey D fries today....yum.  Thank again!

  • Sinsin
    Sinsin Member Posts: 200
    edited July 2014

    It just goes to show that just like every person's cancer is unique, so are our reactions and side effects to treatment! ;)

  • jhodro
    jhodro Member Posts: 80
    edited July 2014

    I am not sure how AC affects things, but with Taxol I didn't have 'normal' taste. One week I was craving salt and nothing had enough, another week everything tasted super salty. One week of Taxol I did not religiously use the salt water mixture and the biotene, and I did end up with sores in my mouth. That was week 8, I believe. I just am about to go for week 12 and haven't had mouth problems (knock on wood) since, but I'm rinsing with salt water, using Biotene and bruising with biotene very frequently. Good luck!!

  • Deana
    Deana Member Posts: 2
    edited July 2014

    Sinsin the redness is nicknamed "chemo glow". It is from the steroids used during treatment.

  • MomMom
    MomMom Member Posts: 334
    edited July 2014


    More on the mouth issues...Since the beginning of the AC and now Taxol I've religiously brushed with prescription Crest with no glycerin and gargled with salt & baking soda mixture, brushed my tongue and added Biotene mw.  But until I went back on the Magic Mouthwash (one of the ingredients is lidocaine & it temporarily literally numbs your mouth) & the Fluconazole, my mouth taste was disgusting.  A week after the AC finished, my mouth was so sore, it was difficult to eat & the only thing that helped was the Magic Mouthwash.  I'm hoping that I can get ahead of that now and not have a similar experience post Taxol.  It's funny though, through all the ups & downs of what's appealing foodwise, ice cream has never failed me!  Right now, I look forward to my nightly treat of Trader Joe's vanilla bars covered in dark chocolate.  Yum!! 

    Pre chemo I have always been religious about flossing.  Soon into the AC, flossing made my gums bleed and the PA at the onc's office said no flossing.  I guess that's because with lowered blood counts, that would be an easy avenue for infection. 

  • belleb
    belleb Member Posts: 4
    edited July 2014

    I had the tingling tongue on Taxol, but everything tasted normal thankfully. I'm six weeks out from my last Taxol infusion and slowly my eyebrows and lashes and coming in and the hair on my head is too. Taxol was so much easier for me than A/C!

  • homemom
    homemom Member Posts: 842
    edited July 2014

    Edes Frozen Yogurt - cappuccino chip - has not let me down either. I also like the Outshine frozen fruit popsicles  too.

    Those of you that lost your eyebrows/lashes, did you lose them before or during Taxol? I still have mine, nothing has fallen out (knock on wood). The nurses said my hair may start coming back in now that I'm done with A/C. Fingers crossed.

  • Xrayalli
    Xrayalli Member Posts: 61
    edited July 2014

    I didn't lose my eyebrows or lashes until I started AC, I did Taxol first which is when the hair on my hair and body fell out.  My taste was off with the first 8 Taxol but it was fine after that and into the AC.

  • jenwith4kids
    jenwith4kids Member Posts: 216
    edited July 2014

     Taxol #10 was today.

    I lost my eye brows/lashes on taxol but the hair on my head is growing nicely.  The nurse told me today that it might fall out again, but when I whipped off my scarf she concurred that it probable won't go anywhere...even the color is coming back (though I'm normally pretty gray I have/had very thick hair).

    I have had no mouth sores to speak of and my taste buds haven't suffered at all. I've gained 11 lbs.

    L glutamine...I found the NOW brand from amazon to be the cheapest and it is also pure. Two teaspoons twice a day in orange juice.  No neuropathy whatsoever.  I hadnt thought about the D connection...but maybe that's why I have avoided that issue for the most part as well.

    I am however, swollen, gassy, cranky and exhausted.  I'm not sleeping very well. Ativan doesn't do it for me anymore.  NP said to increase the dose but she also gave me a script for ambien extended release.  I think I will try the extra Ativan tonight .... I hope it works. Last night and tonight it competes with the steroids.  I'm prepared to crash big time tomorrow afternoon.

    Hair but no eyebrows, red chipmunk cheeks.

    image

  • SyrMom
    SyrMom Member Posts: 575
    edited July 2014

    Completed #32 infusion today.  Regarding taste buds, it really varies from week to week.  Sometimes day 2 through 4 not much taste, but that can vary in intensity and sometimes doesn't happen.  I'm trying an experiment to see if drinking more fluids after the infusion helps to ward it off.  Regarding mouth in general, so far no issues; I suck on ice chips during the infusion and ice hand/feet.

    Thanks for the L Glutamine reminder, need to get back on track with that.  Glad to hear Dana Farber supports it as I've heard it can be controversial & I've been inconsistent taking it. 

  • clarrn
    clarrn Member Posts: 160
    edited July 2014

    Grrr... Taxol #7 was last Wednesday, by Thursday night my fever was 38.9 and off to the hospital for me. 15 hours on a stretcher, 15 IV attempts, 1 PICC line, 1 ECHO, 1 ECG, 2 chest xrays, 1 bilateral arm ultrasound, 1 breast ultrasound, 3 sets of blood cultures, numerous blood draws = severe sepsis, a breast seroma, a urinary tract infection, 6 weeks of IV antibiotics, 2 weeks delayed chemo, and a mommy/wife who feels very alone in this hospital room. 

    The nights are the hardest.   

    Just needed to write it down to justify that it is perfectly normal to feel like this sucks because it does.   Royally.  It is a lot to handle. Tonight I don't feel brave or happy or strong.  And that is okay.  Letting myself actually feel and admit how it feels is a victory for me.  And I hope... for so many things and am glad that this terrible disease has not yet taken that.

  • Sinsin
    Sinsin Member Posts: 200
    edited July 2014

    Mommom, Ice cream has been the ONLY thing I have been able to taste and enjoy through this whole mess as well! LOL And my gums have been a bleeding mess too. It's so gross!!

    Thanks Deanna about the "chemo glow." Makes sense as my cheeks are always red now. I'm done with chemo (it was so strange not going in today for an infusion) and I'm still red. LOL

    HomeMom, I had 3 doses of Epirubicin and Cytoxan (which is MUCH harder than Taxol) before the Taxol and I only started to lose my lashes and brows on the Taxol. I am done now and currently have 3 bottom lashes on my right and 5 bottom lashes on my left. What's odd is I have more left on the top lashes, LOL, with having more lashes on the left eye. So weird! Also odd is I didn't lose all of my hair on my head, just most of it, and what I didn't lose started to to very slowly grow while on Taxol. SO strange considering I lost eyelashes and brows. LOL

    JenWith4Kids, you look great!! I have the red cheeks too. Makes it so I don't need to worry about blush when I go out. ;) As for sleep, ask about Seroquel. My psychiatrist said docs love to prescribe it for sleep as it's NOT habit forming and has minimal side effects. In fact, it's side effect is making fall asleep. LOL Ativan, Xanax, Ambien, etc all of those do not work for me but the Seroquel does every time.The drus is an antipsychotic for bipolar, etc but it works double for me as a sleep agent and to help turn my damn brain off. My brain is always going and always thinking so I was taking a different antipsychotic until I complained about sleep. Now I just take Seroquel and it works for both. I love using it for sleep. It works great!!! And I don't have to worry about any weirdness like with Ambien and I don't have to worry about getting addicted to it either.

    Clarrn, you poor thing!! Vent it out woman!! Let it all out! You are perfectly fine to feel how you want to feel and well, don't want to feel too. You are definitely going through a hard time!! When I was in the hospital after my surgery (which I hated being in the hospital over night) I tried to think of it as a getaway and a break from the busyness that was my life. Try to look at it from that point of view where you have people to wait on you hand and foot (the nurses), control of the tv remote for a change, and no children that you need to chase. I know, it's hard, but try and hopefully it will get you through until you're on you're way home! In the meantime, vent to us as much as you want!! That's what we're here for!! And I hope you told those nurses that even your husband had to take you out to dinner before he could stick you even once, let alone 15 times! ;p (Hope that made you crack a smile at least!)

  • MomMom
    MomMom Member Posts: 334
    edited July 2014

    Clarn,  My heart goes out to you!  Thinking of you daily and hoping you will soon get some relief from these horrendous side effects.  You vent all you want! Prayers and huge gentle hugs to you.

    Jen, Can't believe your hair growth.  It's awesome - I'm so jealous!

    My MO's off calls it the Decadron rash.  My red cheeks hang around only day before & day of, when I take the drug. 

    Sinsin, thank God for ice cream!  I look forward to that nightly treat SO much. These days it takes very little to make me happy.  We gotta grab hold of our moments of bliss however we can.

  • jhodro
    jhodro Member Posts: 80
    edited July 2014

    Clarrn, I hope today is a better day for you. I can't imagine how difficult it would be to be away from family. You will definitely be in my thoughts this week.

    Sinsin: Thank God for ice cream. Dark chocolate with peanut butter for me - - it's got some nutritional value, right? It's one of the few things that actually taste good for me throughout treatment. My belly doesn't always appreciate it, but what can you do? And that's what I said to the surgeon the day of my first surgery, that at least my husband took me out to dinner before all that touching! :) 

    Jenwith4kids: I've also lost eyebrows and eyelashes in the last couple weeks, but noticed today going into treatment 12, I'm regrowing hair on my head in a normal, non-male-pattern baldness way (it used to mildly grow in like the horseshoe so I'd shave it), and hair on my legs, etc. too. And I'm with Sinsin, Ambien, Ativan, etc. never worked for me. I resolved just to endure it since I was getting close to the end. I was/am tired of so many drugs. 

    And, that's right. Today is treatment 12. MY LAST CHEMO day. I'm so excited. I can't wait to get there and get it over with. Then onward, Herceptin for a year and rads. But today, it's MY LAST CHEMO day. 

    I'm celebrating. I hope each of you can too!!! 

  • SyrMom
    SyrMom Member Posts: 575
    edited July 2014

    clarrn ... hang in there & feel free to vent anytime!!  That is a lot to go through!!  Wow!!  Sepsis is so serious & luckily you got to the hospital when you did and are now on the road to recovery - Wow!!  It's real hard being in the hospital, especially with kids at home.  Are they old enough to visit you?  You may be able to go home to finish the 6 weeks of IV antibiotics there, not sure how they do it in your area; or come back daily for it.  Take care ...

    Red cheeks?  Oh, yes, day following chemo, from Decadron, don't need any extra coloring today, look like Rudolph!  The plus is I have a small amt of normal energy from it too!! Yeah!SillyHeart


     

  • MomMom
    MomMom Member Posts: 334
    edited July 2014

    Jhodro,  HUGE congratulations to you!!!!!  Yay last chemo! You did it!!  I'll be there too on Thursday.  Can't wait, its such positive milestone.

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