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Weekly Taxol group

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Comments

  • jenwith4kids
    jenwith4kids Member Posts: 216
    edited June 2014

    my cheeks are red too; someone asked me today if I have rosacea ... nope, just chemo!

    Have you all heard of Diva for a Day?  You need to check it out and have someone nominate you.  www.divaforaday.org.  do it even if your state isnt listed. It is fairly new but they look for spas where and when they get nominees. ...  I did it today. So relaxing! 

    Taxol #6 tomorrow.  Steroid induced insomnia tonight. 

  • jenwith4kids
    jenwith4kids Member Posts: 216
    edited June 2014

    oh, yes, I am considering removing my ovaries even though I am brca negative. I am 100% er and pr positive.   Going on Friday to consult with a gyno oncologist.   I will report back!

  • Sinsin
    Sinsin Member Posts: 200
    edited June 2014

    Jhodro, my WBC counts always go low so I always get the shot the following day. It's not a biggie just seem to always forget to go in. LOL Sorry about the acne! I thankfully don't seem to get that but this redness is weird. It's only my face and it doesn't itch or burn. I'm just red. 

  • Sinsin
    Sinsin Member Posts: 200
    edited June 2014

    Cmp, what's pertuzamab? And sounds like this redness is just yet another strange chemo effect. Yippee skippy! 

    Jenw4kids, yeah I really want to have mine out too even though I'm still considered young. I'm ER+/PR+ too. I know there is a study that should have results done and released probably at the end of the year in regards to premenopausal and postmenopausal women and Tamoxifen efficacy. I should probably wait for that and just have my ovaries shutdown with drugs until the study is done but part of me just wants it all done and over with. My gyno is worried about my bones but I could take Boniva. 

  • jenwith4kids
    jenwith4kids Member Posts: 216
    edited June 2014

    sinsin, do u have a link to that study?

  • cmp106
    cmp106 Member Posts: 26
    edited June 2014

    Sinsin- My onc and nurses always referred to it as Pertuzamab, but you've probably heard it called Perjeta. It's a targeted therapy for HER2 positivity, like Herceptin. 

    Jenwith4kids- I've also thought about having my ovaries removed, or in my case, ovary. I had my left ovary removed in 2001 due to a bad case of endometriosis. So, I only have the right one. I'm BRCA 1 & 2 negative and mildly ER/PR positive. Still, I figure, maybe I should have it out? 

    While on the topic of ER/PR positivity, has anyone come across this situation: my initial biopsy (to diagnose) and my breast surgery were done at two different places. My initial biopsy came back that I was ER+/PR- and HER2+. The final pathology for my surgery (4 weeks later) came back that I was ER-/PR+ and HER2+. The ER/PR was reversed. Both my BS and Onc said this can happen because different parts of the tumor can be made up of different receptors. I thought it was weird, but they weren't concerned since they said that a positive marker for either ER or PR would mean the same treatment for me (tamoxifen).  When people ask, I just tell them I'm hormone receptor positive since depending on the lab, I'm either mildly ER+ or mildly PR+!

  • Sinsin
    Sinsin Member Posts: 200
    edited June 2014

    Jen, they're called the TEXT and SOFT trials.

  • Jules_NY
    Jules_NY Member Posts: 74
    edited June 2014

    Anyone else have completely different symptoms from week to week? Overall I'm  ok and can function normally but I can't seem to figure out what to expect or if half of the crap that I'm feeling is even related to chemo!!! This week I'm nauseous ALL week brand freakin new SE on taxol for me. I am so done!

  • MameMe
    MameMe Member Posts: 215
    edited June 2014

    Jules, I was thinking the exact same thing today. Usually I perk up and feel some energy and get things done the day after chemo, but I am so dragging today, its yucky.

    Nausea does come and go, I would take an ondansetron really soon, and as prscribed, every six hours, for a day or two, and th see what's up. Nausea makes me want to shoot myself. Its so draining and miserable.

    Good luck with that, J. 

    Mame

  • Sinsin
    Sinsin Member Posts: 200
    edited June 2014

    It's the fatigue for me. Some weeks I do great, and others, like this week have me dragging ass really bad. I don't get how it varies. LOL But I'm done with it for sure!!

  • jhodro
    jhodro Member Posts: 80
    edited June 2014

    Sinsin - - I'm really dragging with the fatigue. Mame - - I've been so lucky to avoid the nausea. Sorry you have to fight that one.

    I also really miss my brain. I lost one of my favorite hat/scarf things. I cannot find it anywhere, yet it must be in this house, because the furthest I go outside bald is to the mailbox. But, I have yet to find it. I bet I find it in a few months. :)

  • Jules_NY
    Jules_NY Member Posts: 74
    edited June 2014

    OMG jhodro I did exactly the same thing with a brand new scarf I got today!!!!! My brain is fried!!!

  • Jules_NY
    Jules_NY Member Posts: 74
    edited June 2014

    TY for the love mame starting to feel a little better, right in time for tax tomorrow morning!!

  • jenwith4kids
    jenwith4kids Member Posts: 216
    edited June 2014

    Sinsin... I think those results have been published....  see here: http://www.nejm.org/doi/full/10.1056/NEJMoa140403...

    I also miss my brain!!!!  I can't find words....  I lost my favorite spring-weight zipper hoodie - the one that matches all the t-shirts I bought to fit over my frigging TE's....  I can't imagine it's anywhere other than in my house.  ARGH!

  • Doughboy
    Doughboy Member Posts: 27
    edited June 2014

    Hi everybody.  I haven't posted forever on here.  I got way behind on reading posts and am finally all caught up.  This is so wonderful to have a site to come and see how everybody else is doing and what they are doing on this roller coaster we call "life as we know it",  right now.

    I just had my 8th Taxol yesterday.  I too am having strange side effects.  This sounds like I am complaining, but I am really not.  There are people out there that have things a lot worse that I do, whether it is cancer or something else.  It has just been so long since I have been on here I have a lot of catching up to do and a lot of questions. 

    For me AC was a breeze.  I didn't have any side effects at all, well maybe a little tired, but not bad at all.  Taxol on the other hand is kicking my behind. 

    I have lost 26 pounds in the last three weeks as I can't taste anything.  I can eat a couple of bites and kind of taste it depending on where it is at on my tongue, but after the couple of bites the texture gets me and I just can't eat.  My doctor scolded me for not eating and told me to each a little something 6-8 times a day.  He said that by the time the food starts getting to me, I will have eaten it.  I am taking yogurt, string cheese, hard boiled eggs and stuff like that with me to work starting tomorrow.  My husband is now fixing me protein drinks to drink (and if I don't drink them he threatens to call my mother and niece, as he knows they will nag me, all in fun).  Is anybody else having this issue?  I have noticed that I am drinking a lot less as water is tasting funny too. Could that be the problem with the food since I am not getting everything flushed out of my body like I should?

    Fingernails is another thing.  I look like I have the fingernails of an 80 year old man that has worked in a car garage and smoked 5 packs of cigarettes a day all his life.  They are a nasty brown/yellow and are lifting up.  They hurt for a while, but that has passed, now they just look gross. 

    Lost my bottom eye lashes and my eye brows have thinned, but still no peach fuzz on the head for me. 

    I have chemo on Thursdays and my rough days are Sunday and Monday and Tuesday is starting to join that party.  Once again I wonder if it has something to do with the amount of fluid intake I have.

    I did have the bladder problems like somebody mentioned.  I was at work and felt like I had to go and wow, glad it was the end of the day and I wore black because the flood gates opened, it wasn't a lot, but still very embarrassing.  I had never had that happen before, but that has passed for me. 

    I have 4 more treatment (27 days) and am already planning my final infusion.  There is a bakery a couple towns over that is just incredible.  I am going to take a big tray of cookies and some sparkling grape juice and disposable plastic wine glasses and have a toast with the nurses to celebrate.  I have noticed people talk about ringing a bell.  I haven't seen a bell, I hope they have one because it sounds like a great way to celebrate too!

    Hugs and prayers and great thoughts to everybody on our roller coast ride.

  • MomMom
    MomMom Member Posts: 334
    edited June 2014

    Doughby, Sorry to hear you are having these issues with eating. I am also one of the lucky ones who didn't have any serious issues with AC, and so far (also had #8 Taxol yesterday), Taxol is fine too.  Lost my taste buds with AC but when I ate meals, was so hungry I scarfed every meal like a starved man. Really had my husband who's an excellent cook scrambling to make something appealing. Keep experimenting with food to find something you like. Maybe cottage cheese mixed with jam, baked potato with sour cream, morning smoothies with frozen fruit and ice cubes for chilly consistency, with vanilla or flavored whey powder, almond milk, kale (you won't taste the kale if you have enough frozen and/or fruit), almond butter gives nice taste too. Just some ideas of what worked for me.  I'm an avid daily exerciser also, which may have contribued, but I lost 6-7 lbs on A C, and have gained a few lbs back on Taxol. I'm told that my exercise has probably contributed to being able to tolerate the chemo OK.

    Thrush contributes to your taste buds being off.  I was given Difculan twice while on AC and it helped.  When I noticed return somewhat of off taste buds this week, I was told to use Miracle Mouthwash which is also prescription. It's good stuff and clears up mouth sores too, which really helped me about a week after finishing AC.  I also had to force myself to drink water on AC, but now I can't drink enough on Taxol.

     I also had several instances of urgent need to pee. I was going to tell MO because it could be a UTI, but it went away. You may want to have that checked out. 

    I had to have a big toe nail removed and the other one is loaded with fungus toward the end of AC, which is unusual. Usually Taxol causes nail discoloration, fungus, lifting of nails - also neuropathy. To prevent this, I'm icing with 2 sets of Elastogel gloves and booties during infusions.I tried homemade ice packs, but they were a pain and way too cold. With MO approval, also take Biotin, B6, and Glutamine for nails. Tea Tree oil also recommended - put on nails with cotton ball.

    Hope the taste buds return soon. I'm already dreaming of my last Taxol less than 4 weeks from now. I have an excellent baker who does awesome cookies, so I was thinking the same thing.  I love your idea of sparkling juice!  Take care.

  • Sinsin
    Sinsin Member Posts: 200
    edited June 2014

    Doughboy, welcome back! I hear you on the food! I complain about the fatigue but I think the worst SE for me is the fact that everything has lost it's taste for. It's like there's a big bland spot in the middle of my tongue. Now I just eat what I can tolerate the best. I use to love cheese and now it tastes absolutely horrible! The only thing I can remotely taste is sweet things. Go figure! As to fatigue, I have my infusions on Monday, so the steroids keep me pumped and then by Wednesday I'm starting to feel the fatigue and Thursday and Friday are my worst days. I took an hour nap yesterday and then went to bed at 8:30! Sorry about the bladder problems! Yikes! I seem to have the opposite problem. I apparently don't completely empty my bladder so I wound up going more often. As to your nails, try icing them during infusions. I do and so far my nails are just brittle and have white lines through them. They lift easier like when I accidentally bend a nail back but they're still a healthy color.

  • mareluna
    mareluna Member Posts: 275
    edited June 2014


    Hi,

     When I did taxol everything tasted crummy. It all tasted the same just different textures. The only thing I really liked was cinnabon cream of wheat. I did like eggs and bacon and home fries and pan cakes too.  Cinnamon  was really my favorite. And I sort of could eat vegetables.  Meat tasted bad, sweets too, breads were bad. It took about 2 months after chemo for my taste buds to work. And some things I no longer enjoy as much.

  • jenwith4kids
    jenwith4kids Member Posts: 216
    edited June 2014

    have had no problems with food...I've gained 10 lbs since this all started.....ugh

  • Doughboy
    Doughboy Member Posts: 27
    edited June 2014

    I was wondering how long those little taste buds would take to come back.  

    It is so interesting to me how thing are so different person to person.  

    Sending hugs and good thoughts to you all!

  • Funclassygal
    Funclassygal Member Posts: 27
    edited June 2014

    Hi Jules, I am in Bayside and am with the ProHealth Group - Dr. Dwight DeRissi and Dr. Marc Citron.  Did you take every pill that they gave you?  I just read them and I am terrified.  Never took pills!  I heard the pill Emend really helps with nausea? Thanks, VeraAnn

  • MameMe
    MameMe Member Posts: 215
    edited June 2014

    Fun, Isn't that the truth?! I never took meds like I do now, but am hoping its sorta temporary. The nausea and heartburn ones really help, I found out. One famotadine daily, keeps heartburn away, and a very occasional ondansteron if needed for nausea. I used that last one more in the beginning. Whatever they prescribe is probably fine, and whatever costs less might be good, too!

  • Jules_NY
    Jules_NY Member Posts: 74
    edited June 2014

    I second that! Meds for nausea and heartburn were key for me!!!!! Not a big pill popper myself prior to BC but have no problem taking them now. 

  • brigadoonbenson
    brigadoonbenson Member Posts: 198
    edited June 2014

    I couldn't eat much when I was on Xeloda.  Got by on scrambled eggs, pork sausage, spinach, dill pickles and olives.  I drank apple cider and orange juice.  Oh, and I snacked on Good and Plenty candy.  Everything else tasted like it came from the barn floor. 

    I have another UTI and terrible cramping from gas or whatever.  Tired of speculating.

     I still have hair cover but it is VERY thin and I can no longer give the illusion of a full head of hair. When did you who have cut it off decide it was time?  Mine is just thin all over not in patches.  I actually wore my wig the other night when we went out because I didn't have time to try to arrange my hair so that it didn't look so thin..

    Lovin all the dog love.

  • Sinsin
    Sinsin Member Posts: 200
    edited June 2014

    Brigadoon, I shaved mine before I even got to the point you did. I was just making such a mess and losing so much hair that I couldn't take it anymore and let my hubby shave it. You just have to decided what works for you. Some people never shave it and just let it all fall out. It's up to you. 

  • jhodro
    jhodro Member Posts: 80
    edited June 2014

    Uh -oh. What does the neuropathy feel like? Is it numbness in your feet, or like pins and needles in your skin? Or, could it be that my sandals just rubbed my skin the wrong way, because when I'm not standing, it's fine. I just had my MO appointment Friday and he was happy to hear no neuropathy. Ugh. I am leaving for vacation this Saturday...

  • brigadoonbenson
    brigadoonbenson Member Posts: 198
    edited June 2014

    jhodro - it can be all of the above.  Mine comes and goes and is sometimes needles and pins or a burning sensation.  Sometimes it is as if my toes are just clown's feet - flap, flap, flap with no real feeling.  One of the women in my chemo group had it just in her fingertips.

     I do find that some of the shoes I wear, like sandals that have a band across the bone in the top of my foot bring it on more.  Also some of the chairs I sit in put pressure on my nerve that make it seem like neuropathy. 

    This disease keeps one guessing.

  • jhodro
    jhodro Member Posts: 80
    edited June 2014

    Thanks Brigadoon. I just returned to work last week and up until then hadn't really been wearing these particular shoes, more running shoes than anything. I've been walking fairly regularly, so I was surprised today when it felt like I could barely walk, like blisters on both feet, but no blisters. I guess I'll see how it goes.

  • Sinsin
    Sinsin Member Posts: 200
    edited June 2014

    Sorry to hear Jhodro! Hopefully it's not neuropathy and it stops! Have fun on your vacay! Boy, I could use one of those! LOL

  • MameMe
    MameMe Member Posts: 215
    edited June 2014

    Jo, I get small signs of neuropathy that come and go, nothing that sticks. Today's feature was a lump under my let foot that felt like chewing gum stuck to my sole. Only there wasn't. Its better now. My husband hiked a ton the last few years, and his whole sole area felt lumpy and numb from slamming his feet down while walking fast and carrying a pack. T least that is what the podiatrist said it was. He is a little better, too, but not totally. TMI....

    Brigadoon, We will have to have our own little pity party for our dwindling tresses. I am loathe to shave it,  as some hair is better than none, but that could change, I suppose. How did the wig work out, comfort, appearance? Eager to hear. I keep putting off actually wearing the wig, but boy, not much longer, as I have that same issue of trying to arrange the hair to create coverage, when it doesn't really want to do that anymore. I do hate this part of treatment, really, I do. : (

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