Come join others currently navigating treatment in our weekly Zoom Meetup! Register here: Tuesdays, 1pm ET.
Take our poll: Caregivers, what do you find most difficult about caregiving?
Weigh in: What are the best and worst gifts for people with breast cancer?

Weekly Taxol group

1…319320322324325…426

Comments

  • JackyR
    JackyR Member Posts: 39
    edited July 2018

    A couple days later and I've been having vision problems and feel disoriented. Anyone experience that? Fortunately, I have my appetite back. Hope everyone had a great 4th

  • Frog-on-the-lilypad
    Frog-on-the-lilypad Member Posts: 159
    edited July 2018

    Hello ladies,

    I go in for Taxol 7 on monday. Did any of you have swelling on your finger pads? I have sore nail beds and my finger pads are swollen like little bulbs. They have gone down since, but still.

    I have had neuropathy for the first time after Taxol 6. Until now my main SE was aches, sore nailbeds and the fatigue that hits you suddenly.

    Wishing all us bearable SEs.

  • lg10
    lg10 Member Posts: 37
    edited July 2018

    frogonthelilypad-- I have 4 taxol treatments left. I feel like my fingertips are more wrinkly than before. Almost like I've been in a pool too long. They aren't really swollen, but my hands do get red very easily. It's strange.

  • moth
    moth Member Posts: 3,293
    edited July 2018

    Yay, I did #10 today. Only two more to go!

    Today was my first time icing. Did both feet and hands using our gel icepacks and our homemade MacGyver'd booties & mitts. Booties were my dh's giant stretchy hiking socks, and my mitts were a pair of new oven mitts. Dh swapped out my packs every 30-40 min. It was annoying not being able to hold anything or use my ipad and he had to set everything up for me and keep adjusting things and moving my drink to me etc. but if it keeps the neuropathy at bay, it will be worth it.

    I came armed with 2 articles from 2017 indicating benefit from icing during paclitaxel to prevent neuropathy, just in case I got pushback from the nurses but I lucked out and got nurses who were cheerfully positive about it. If anyone is interested in the studies, they're here:

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6007752/pdf/djx178.pdf

    http://www.sciedu.ca/journal/index.php/jst/article/viewFile/9340/5863


    I also was given a quilt to keep today by the cancer center volunteer group. A local quilting guild donates them and they can't reuse them among patients because of infection control so you get one to keep and take home. Today with all the icing I was getting extra blankets because I was cold and the volunteer explained she could give me a quilt to keep and brought one for me. It's really nice and warm and made me feel loved.

  • moth
    moth Member Posts: 3,293
    edited July 2018

    A question for those taking alpha lipoic acid, b6 and l-glutamine :

    do you take those every day, including the day of the chemo treatment or do you take that day off or????


  • moth
    moth Member Posts: 3,293
    edited July 2018

    I was reading an article today which mentioned that peripheral neuropathy can affect urinary sphincter control and then I thought....

    "wait, do I have to ice my lady garden too???? Cause no, nope, nah ah..." Singing

    Happy

  • ingerp
    ingerp Member Posts: 1,515
    edited July 2018

    moth—congrats on only having two left and thanks for the mental image of you sitting in a bowl of ice during tx.

  • Egads007
    Egads007 Member Posts: 474
    edited July 2018

    For Ingerp....and all. Moth congrats on 2 more...almost done! :

    image

    image



  • ingerp
    ingerp Member Posts: 1,515
    edited July 2018

    Egads thanks as always for the weekly pick-me-up. I'm not *quite* as chippers these days as I was early on. It occurred to me this cough I've had for several weeks isn't going to go away for another month or so. And I feel about as sexy as. . . well. . . something that's the opposite of sexy. Still--it could be worse. SEs are <relatively> minor. I know many women are going through *much* worse. I am counting down the days to the end of this interminable month, though. August 2nd is the magic Last Taxol. Cheers to everyone getting tx today. And a big hang-in-there to those just starting, or in the middle, or with more than, like, one left. Good times ahead!!

  • Egads007
    Egads007 Member Posts: 474
    edited July 2018

    A woman that owns a tiara is ALWAYS sexy...a woman going thru chemo...even sexier!

    Thoughts to all

  • PatinMN
    PatinMN Member Posts: 784
    edited July 2018

    moth - I took B6 every day. I used l-glutamine the day of treatment and the subsequent 3 days, so 4 days a week. This is what the chemo nurses recommended. I did not take alpha lipoic acid. Be sure to continue with the supplements after your final taxol. My chemo nurse told me to do that but I had run out of l-glutamine and didn’t want to buy any more. Then about three weeks PFC my big toe went numb. It eventually went back to normal, but probably continuing the l-glutamine would have prevented it. For anyone considering l-glutamine, be sure to use 30 grams a day (which is a lot), divided into two or three servings. I did 15 grams morning and night, mixed in Crystal Light. It worked for me.

  • moth
    moth Member Posts: 3,293
    edited July 2018

    Pat, thank you for that!

  • moth
    moth Member Posts: 3,293
    edited July 2018

    Ugh, so tired today - the steroid crash I guess. You'd think I'd be used to it after 10 doses but it still caught me by surprise.

    And get this: I think I have blepharitis. Just one one eye but both upper &lower lids are red and and swollen and unhappy and hurt. Only good thing from this is that I peered at it super close & had my dd check it out as well & I have some teeny tiny lashes starting to grow! If it was in just one spot I'd think it was an ingrown lash but it's too diffuse. Of course not much I can do on a Sat night other than smear a bit of antibiotic skin ointment and maybe I'll try a chamomile tea compress later.

    I was also running a tiny 37.5C fever earlier - because yeah, why not give me something else to worry about.

    Seriously, this is a marathon, not a sprint, and these last 2 weeks seem like they'll take an eternity.

    How is everyone else doing? Hope you're all hanging in there.

  • Magnolia-mom
    Magnolia-mom Member Posts: 14
    edited July 2018

    I'm a week out from my last Taxol- whoo hoo! The skin around my eyes is very inflamed and irritated. I'm calling the nurse tomorrow. But any ideas for relief in the meanwhile

  • moth
    moth Member Posts: 3,293
    edited July 2018

    Ugh, what is it with us and our eyes magnolia-mom? I tried putting on a tiny bit of polysporin, not too close to the eye itself. I applied with a q-tip. Not sure it helped tons but mine doesn't seem to be getting worse right now. Have you tried an organic chamomile tea compress? (warm, not too hot)

  • Magnolia-mom
    Magnolia-mom Member Posts: 14
    edited July 2018

    Moth- I haven’t tried a anything yet. I happen to have chamomile tea, so I’ll try it. Thank you for the suggestions

  • ingerp
    ingerp Member Posts: 1,515
    edited July 2018

    Re: eye issues, not sure if this will help but many years ago I had super red/inflamed eyelids and called an ophthalmologist friend. He said they were dry and to put something like aquaphor on them. It worked great. So maybe some kind of super moisturizer??

  • nellabella
    nellabella Member Posts: 74
    edited July 2018
    • Hi all,
    • I’m off to my last taxol tomorrow. I can’t believe it’s the last one. I’ll still have to go in next week and then every 3 weeks for H&P but hoping that H&P hasn’t been the cause of my SE’s. Although I did read that Herceptin and projeta do cause neuropathy and diarrhea which have been a horror for me. I can’t go anywhere because I’m always pooping excuse my French. Nothing seems to control it except eating Matza. I remembered my Jewish friend complaining of constipation during Passover due to matza so during one of my taxol infusions I bought a matza ball soup and to my surprise I didn’t poop right after the taxol. But I have to keep eating matza and I make matza ball soup. But when I stop it comes back full force. So I have to eat it constantly and keep taking Imodium for added security. Had to give up coffee because that’s makes instantly discharge. Maybe those will with that problem can try matza.
    • THE Eyes problem is a huge issue for me also. Red watery swollen and have like blisters around my eyes. It’s horrible and I can’t hardly see. I tried everything but haven’t found a solution yet.

    Neuropathy : well my feet are numb and thingly and the skin is peeling. My left hand is worse, pinky I don’t feel at all. Rest of the hand feels asleep all the time. Walking is painful and can’t by any means have closed shoes. This better go away cause I won’t have it lol.
    Extreme dizziness started two weeks ago and that is so scary. Everything spins and it brings on hot flashes. Idk seriously this all just stinks. Bloody nose also daily. End of taxol but a long way to go. Meet with plastic surgeon Thursday and get a mammo too. Then on 25th meet with surgeon to set surgery date to say goodbye to lefty. I can’t believe I won’t have a breast. Gonna tell them I refuse to wake up without a breast replacement. I am sure that will be my breaking point. But I need radiation so they don’t like to do recon when radiation is to follow.
    So long road ahead and like chemobthis too shall pass I keep telling myself. My depression has lessened and I’m just going with the flow. But I still ignore well wishers. What choice do we have.
    Hair: well my hair started growing about a month ago and it’s all gray with a little underlying what looks like black. My hair was brown, but ok. But seeing bald spots. They say to shave it but I refuse. No eyebrows. Today I will put temporary tattoo ones in thatvare suppose to last 2 weeks. This alien look has to go. Eyelashes I have I think I can’t tell if they are growing back or shortened. I just wanna look norm my silly BFF said I love look aweful that I look like a cancer patient. Says i am pale and sort of yellow. Yellow ? Well I love you too best friend. She don’t mean any harm. Then she says I look great. Ok it was a good laugh. Make up your mind.
    Another SE is this chest heaviness, lack of strength and oxegen. Get winded so quickly that I can’t hardly speak at times. I miss my energy, miss going out,Miss feeling normal. Miss being me.
    Sorry for the rambling but who else would understand but my pink sisters here.
    I’ve always been a proper lady of sorts. But when this is all over and done with I plan on doing things I never would’ve thought of. Like tattoos, I’m gonna get like 3 of them so far. Ha lol.

    Fishing I wanna catch a fish and cook it in an open fire. I wanna buy a Vespa and I wanna get drunk. Get drunk oh how I’d love to get a little tips and just giggle with my friends. I know recurrence will always be an issue. But in the meanwhile I’m gonna have fun. Off to play some video games now. I found its good for the neuropathy in My hands.

    Be well my friend


  • Calee65
    Calee65 Member Posts: 41
    edited July 2018

    Idkidk... I’m excited for you to be finishing Taxol! I only did 8 rounds of Taxol and 1 of Abraxane and Dr said she thought it was time to quit..that chemo was doing more harm than good..I have horrible neuropathy in my chest/mastectomy area and lesser in my feet and legs. So I’m right there with you on hoping it all goes away now that the Taxol is done!!! Thanks for the info on Matza...I may have to try some as well. And HAIR..hahaha mine is coming in in patches, the back is about 1/4 inch and sides and top are just white fuzz starting...so I’ll definitely have to trim/shave it to even it out...eventually

    My next adventure is Radiation...I have a meeting to discuss with RO..not sure I’ll do it since I already have so much pain in that area...she’ll have to have some really good odds to convince me...hard decision coming up!

    Good luck on your last Taxol!!!

  • nellabella
    nellabella Member Posts: 74
    edited July 2018

    Did it DONE DONE DONE with CHEMO !!!!!!!!!!!!!!!!

    Pray never to have to go through this again. I’ll leave it at that along with the negative thoughts I can’t stop going through my head. Can’t help it . But keeping it positive and as a victory !

    Carlee I’m so sorry you couldn’t continue with chemo and that you’re suffering. I do believe it will get better because the nerves are resilient.

    Hair oh hair wow you have amazing courage to buzz it. You’re right to do that. But I’m enjoying playing with it and seeing this gray fuzz top and just can’t vrung myself to buzz again.

    Matza yep does the job. Straight matza, I put butter on it and just eat it.

    Tomorrow I go see the plastic surgeon. And get a mammo. Will see what it reveals. Although with dense breads I did voice better testing but it don’t natter I guess because they’re gonna take it anyway.

    WARRIORS WE TRULY ARE !! PLEASE KEEP US UP TO DATE WITH YOUR SE’s. Praying for you, me and everyone.

    Gentle hug

  • llupp
    llupp Member Posts: 11
    edited July 2018

    Starting Taxol on July 17th for 12 weeks the oncologist gave me a month off after the AC . My hair just start coming in and it's red my hubby and I laugh because I had a dark brown and gray hair before. My friend said to enjoy being a ginger before I start the Taxol and lose it. Can't wait to be done with chemo.


  • moth
    moth Member Posts: 3,293
    edited July 2018

    llupp, my hair started to grow while on taxol (i've done 9/12 and have a lot of visible fuzz) so it's possible yours won't fall out again. My eyebrows and eyelashes fell out during it though.

  • moth
    moth Member Posts: 3,293
    edited July 2018

    idkidk - Congratulations! You did it, girl! You did it!!!

    Today in the afternoon I'm scheduled for my 11th taxol.

    I'm seeing my family doc in the morning for a bunch of other things but one thing is I have had an increasingly bad cough. I'm not sure what she'll do. I wouldn't be surprised if she ordered a stat chest xray. I've been running a low grade fever (37.1-37.8 for days now).

    My bloodwork is showing lymphocytopenia. Lymphocytes are part of the immune system that 'remember' previous illnesses and viruses you were exposed to and things you were immunized against. I'm losing all that it seems. Anyone else have lymphocytopenia during chemo? I read a study that showed some people even 9 months later didn't get this back and thus stay immuno-compromised unless you revaccinate for the things you can. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC47273...

    I've been super tired and limp since taxol 10. I've lost all my ooooomph & go go go

    On the plus side, the icing we started on #10 seems to be helping - neuropathy is milder than the previous week.

  • murfy
    murfy Member Posts: 259
    edited July 2018

    Moth, did you find that article a little bit scary? I think that we want our bodies to help combat the cancer (ie, natural killer cells et al), but that chemo prevents the body from helping itself. 'Devil if you do, devil if you don't', I guess. Both lymphocytes and neutrophils were dramatically reduced during my chemo. At my 3-month post-chemo checkup, only neutrophils still remained low.

    Good luck with #11! Be sure your doc is aware of the cough. With each taxol Rx it can get exponentially worse and become pneumonitis, requiring huge steroid doses and possible hospital stay. In retrospect, I would have delayed or skipped my last taxol dose. It took months for my lungs to recover.

  • nellabella
    nellabella Member Posts: 74
    edited July 2018

    Moth thank you !!

    You’re almost done thank god. Glad to hear icing is helping. About your article wow I’m praying that’s not your case.

    I just came back from seeing the plastic surgeon who assumed the breast surgeon discussed with me that recon is not an option AT ALL !! She’s said just like this “With all that you have going on we consulted and with very high risk of recurrence recon isn’t not an option”. I cried and cried. What all going on Jesus ? She stopped there and said maybe in a year DIEP shoulder. In shock and confused. She also said I’d have dog ear there. Why I don’t know, the rest was a blur. Why stage 3C nodes all clumped all the way to subpectoral. Most of the skin all cancerous. I wonder what they and I don’t even know where this breast cancer is lurking like a devil.


  • Egads007
    Egads007 Member Posts: 474
    edited July 2018

    For Ingerp……..and all

    image

    image

  • ingerp
    ingerp Member Posts: 1,515
    edited July 2018

    Egads--I'll take that ice cream but will tuck it away in my freezer until this afternoon.

    Moth--hang in there. I have #9 today and am actually going to mention the cough that I've had for several weeks. I'd give about 2-3 fingers for a a good night of sleep. Just seems to add insult to injury taking away my sleep. (Egads I know I just posted that I slept later than hubs this morning but that was after being up one billion times through the night coughing.) I feel like I'm sounding pretty whiny but I also can't swear I'm 100% awake.

    Ennyhoo. I am waiting for the next three weeks to pass so I can finally be done with this crap. (<--ooo that sounded cranky)

  • Egads007
    Egads007 Member Posts: 474
    edited July 2018

    You don’t sound whiny...you sound like you’re doing the chemo thing sunshine...it’s good to vent, hang in almost there

  • ingerp
    ingerp Member Posts: 1,515
    edited July 2018

    I know. Thanks as always for the support. I'm already feeling better--the wonders of caffeine. ;-)

  • Downdoggie
    Downdoggie Member Posts: 51
    edited July 2018

    Hi Warrior Women,

    I'm now 6 weeks since last chemo. My hair is growing back, but my brows and lashes fell out over the last couple weeks. So weird to see the difference in skin color where my brows were.

    During chemo my lungs felt compromised and whenever I got tired, I would feel a discomfort in my chest like I was hiking in high altitude or getting bronchitis. I'm happy to share that is gone! I'm also losing the steroid weight gain

    The neuropathy is still present in my feet. No pain, just numbness in heels and toes. I've cut back on the supplements (Alpha-lipoid acid, L- Carnitine, Glutamine) and need to put more energy into epsom salt soaks, massage and acupuncture because the combination was really helping. The self-care required is very time consuming and I have been doing radiation daily, but today I finished radiation. Yay!

    Wishing you all wellness.

Categories

Join Us on Zoom: Upcoming virtual meetups. Read more...
Give your account some personality! Add a profile photo.