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Weekly Taxol group

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Comments

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

    Ugh, moth. Fingers crossed it turns out to be nothing.

    While I have everyone, I was just texting my DIL, who is about to become a registered dietitian. She knows I've been pushing the protein through tx, but she was just studying something on biologic value, which is a measure of the quality of protein. Eggs are 100, meaning 100% of the nitrogen is absorbed and retained. I'm going to go from one egg a day to two.

  • PatinMN
    PatinMN Member Posts: 784
    edited June 2018

    Moth, I’m sorry youhave to wait so long for the ultrasound - more time to imagine bad thIngs. I had something questionable at the five year mark, but lucky for me they took me right to the ultrasound room and I learned it was just a cyst before I left. Hope yours is something benign as well.

  • Vslush
    Vslush Member Posts: 117
    edited June 2018

    Moth,

    Hopefully the 9th will get here soon with good results.

    Vickki

  • Egads007
    Egads007 Member Posts: 474
    edited June 2018

    For Ingerp and all......first bite goes to Moth this week, my fingers are crossed hoping it's all good..

    image

    image


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

    Heck, moth—take two bites.

    Thanks to egads for the support and sweets. I meet with my MO today—first time since #1. All my questions are schedule-related. I plan on coming home and planning all of my fun trips for the next nine months. Happy

  • Egads007
    Egads007 Member Posts: 474
    edited June 2018

    Ingerp - ohhhhhhh fun trips!! Anywhere in particular?? Btw, another one down today...go you!!!

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

    Oh YUMMMMMMMMMMM! Thanks egads for the sweets & Ingerp for sharing

    hey, I actually have a vegan chocolate ice cream sandwich dessert in the freezer; thanks for the reminder!

    Thanks everyone for the kind comments & encouragement. I saw the spot on the mammo. It's a rod like calcification with smooth edges. I'm thinking she's worried it's DCIS but I don't quite get why she wants an u/s because I thought u/s doesn't visualize calcifications well. Ah well, it is what it is, and whatever it is we'll just deal with it.

    Taxol #9 went fine yesterday. MO kept me on a reduced dose even though my counts went up a bit. I meet with him today so I'll see what he's thinking for the next 3.

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

    Sorry, moth, but everything in me wants to tell you to GO GET SOME FREAKIN’ BEN AND JERRY’S.

    Egads—trying to drag hubs to WDW. I took a trip with each kid back in the day cuz amusement parks are not his thing and they were SO much fun—I get an endorphin rush just thinking about the place. We’ll probably do something next spring when I’m done done—not sure where but pretty sure it’ll require a passport. ;-)

    Had a really good visit with my MO. She said usually the patients she never hears from are the ones who are doing the best. She said I’m the only patient she’s seen who’s actually making blood. (Ray rah extra protein!) We talked about the new Herceptin study. She’s going to an ASCO conference in August, will look at the data, and decide then if she’s going to cut her patients back to six months. I told her I figure we have until November to figure it out. And I should walk out of here with an appt with my MO. Also got my H only schedule. This has been a really good infusion!

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

    Oh we're good - Ben & Jerry's comes in vegan! https://www.benjerry.com/flavors/non-dairy

    The vegan revolution is here :D

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

    P. S. I also found out I'll start anastrozole two weeks after rads.

    And BTW—getting a hand massage *while* getting IV Benadryl is pretty good! Might have to keep this up every Friday for the rest of my life. .

  • Egads007
    Egads007 Member Posts: 474
    edited June 2018

    There’s a vegan revolution?!?!? Looks like the paleo kids gotta’ rumble...Sharks & Jets style!


  • MuddlingThrough
    MuddlingThrough Member Posts: 655
    edited June 2018

    Ingerp, I sure miss that weekly IV Benadryl! I go for bloodwork about once a month now and jokingly ask the nurse for Benadryl before she finishes with my port but she has to say no, darn it. ☺

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

    We can rumble - but we fight dirty Winking
    Gentle, but dirty. We'll make you cry.



  • chef47
    chef47 Member Posts: 58
    edited June 2018
    hi everyone:) not sure if stage 4 girls are getting on here or if it matters but anyway, I just had my 5th taxol out of who knows? So this morning my jaw was very stiff when I woke up. And had an ache about it. Has that happened to anyone. I’ve taken my pain meds and it did help but since I’ve never had that happen I’m wondering whats caused it. I did have my first zometa 2-3 weeks ago also. So could it be taxol or zometa or the bone mets?
  • SAW66
    SAW66 Member Posts: 8
    edited June 2018

    Chef47- are you taking nausea meds? I was taking compazine and got the same side effect.

  • nellabella
    nellabella Member Posts: 74
    edited June 2018

    Hope you’re welcome. Praying you feel better very soon metastatic to bones yes I recall.

    Moth try and it worry. I know it’s difficult but try and not think about it.

    Ingerp an egg a day interesting ty for sharing.

    Chef yes the jaw I had that at the beginning of taxol to the point that even my teeth hurt. Then it went away. Seems taxol aches travel wherever it wants to. A different place each time. Take Tylenol or claritan helped a lot for bone pains.

    Well I have 2 more taxols to go. I can’t believe it now it seems like it went so fast. I will continue IV herceptin and Projeta then every 3 weeks.

    About surgery.... anyone having a masectomy after Chemo ? Then rads ? Any thoughts on what type of recon ? I’m not a candidate for immediate recon and truthfully can’t see me volunteering to have another surgery for recon which I hear are all so painful and come with risks. But I know I won’t be able to deal with staying flat. I want cleavage. I never showed or appreciated mine, but now I love my cleavage and I want one again. Decisions decisions.

    I can’t believe how strong we are.

  • Hariry
    Hariry Member Posts: 100
    edited June 2018

    Dear friends,

    It's one month since my last taxol. I managed to cut down the extra weight I put on during the 12weeks. The tingling and "walking on pebbles" was worst a week ago and slowly reduced by now. But my hands started to become stiff especially in the morning. So stiff that I find it difficult to grasp. Hair and brows started to grow longer I'm glad.

    When I was doing the 3-4th taxol I thought this was so difficult I'd never complete. But here I'm now. And so will you.

    Hang on there!


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

    Hariry—thanks for checking in. I’m curious how your hair is doing? From what I’ve read here we might see some new growth about a month PFC? Have you noticed anything?

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

    Oh, I'm starting to get really worried about the neuropathy. Previous 2 weeks it was just a tiny bit of numbness all week and more significant numbness and a bit of pain on Tues/Wed (following a Thurs treatment), which would then almost dissipate on Wed night.

    This week (after #9) I had uncomfortable numbness in feet Sat overnight & this morning it continues. My hands feel stiff and swollen. I can type and pick things up but they don't feel right at all. My feet ached this morning on my walk.

    If only we could be sure this is temporary. Having this be permanent scares me. Otoh, this stupid cancer scares me too.

    I'm already on a reduced dose so no more dose reductions are possible.

    Ugh. I'm in the dumps about this. There are things I really don't care about - my hair, eyebrows, breasts - I literally don't care; I don't care if my hair doesn't ever come back, I don't care if they want to lop off my breasts. I don't need them. But I really want my hands and feet to work right.

    Hariry - is the neuropathy & hand stiffness affecting your work? This neuropathy could totally derail my career plans :(



  • MuddlingThrough
    MuddlingThrough Member Posts: 655
    edited July 2018

    Moth, I hear you. My right hand...and I'm right handed...so much pain...can't use it for much...little finger totally numb...I grieve for my hand. It was already getting bad before my dx and maybe my taxol made it a little worse but it doesn't seem to improve at all. I'm about 13 weeks post-taxol so I don't know whether to ever expect any improvement. I hope yours gets better.

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

    So after being in the dumps all day, I remembered to dance while I can and cheered myself up.

    Aaaand found this study: https://www.ncbi.nlm.nih.gov/pubmed/29243164

    I'll try to login to my university database tomorrow & see if I can access the full article but "Exercise appears to reduce CIPN symptoms in patients receiving taxane-, platinum-, or vinca alkaloid-based chemotherapy. Clinicians should consider prescribing exercise for these patients."

    So yeah, crank up the tunes & let's dance :)

  • Djohn
    Djohn Member Posts: 9
    edited July 2018

    I completed chemo a year ago and had the worse reaction to Taxol - searing pins and needles and burning sensation in feet, legs, hands, arms and torso. It got so bad that I icould not walk a block without my feet feeling as if they were on fire. My skin even stung when I applied certain lotions or even olive oil. My medical team told me my symptoms were unusual. Sorry you experienced similar reactions but you are doing the right thing by switching. I completed two rounds of Taxol, but should have stopped after the first one when symptoms started to appear. Luckily symptoms went away within a few weeks after I stopped but I am now dealing with neuropathic pain in my neck, head and face. I hope your new med will be much kinder to you. Good luck

  • nellabella
    nellabella Member Posts: 74
    edited July 2018

    Hariry first time I heard anyone else put it as I have. Like walking on pebbles yes it’s horrible. I’m so happy to hear that yours in improving and good job in the weight loss.

    Moth we have to believe it will go away. Am I wrong or are those ahead of us doing better and side affects went away. Most ?? Yeah most, the majority. Well I hope so because I can’t stand the feeling of walking in pebbles and the hand stiffness and tingling.


  • Djohn
    Djohn Member Posts: 9
    edited July 2018

    Moth - Sorry you’re experiencing those side effects. I experienced severe neuropathic pain in hands, arms, feet, legs and torso during Taxol treatment. My integrative doctor recommended something called marble therapy which helped to detoxify the nerve endings and speed up healing. It was basically the following:

    Place in a foot bath or other soaking container

    3 Liters of warm water

    3 tbsps of Epsom salt

    Marbles

    I would soak my hands and feet in this solution for 20 minutes daily, and play with the marbles to get the circulation going. I also did acupuncture once per week and walked as much as I could. My pain resolved pretty quickly after I ended the Taxol treatment. I didn’t experience any numbness so I’m not sure if this will be helpful for that side effect, but it’s worth a try.

    Good luck to you.

  • Egads007
    Egads007 Member Posts: 474
    edited July 2018

    The fine motor skills/dexterity in my fingertips (and hand weakness) specifically while doing up buttons or picking up small objects, kicked in largely toward the end of chemo. Very frustrating. I thought it was permanent as it was still there 6 months post treatment. I was wrong, it slooooooowly dissipated and was back to normal by month 9 or 10. Don’t let it get you down Moth, it’s probably just a matter of time. In the meantime keep your fingers limber and grip strength by squeezing a tennis ball or stress ball several times a day. Every little bit helps.

  • Taco1946
    Taco1946 Member Posts: 630
    edited July 2018

    My very painful neuropathy went away after I stopped - after 8th taxol. I have no regrets about that decision. Gaberpentin gives some people relief. If MO prescribes it, make certain you are taking enough. My MO only prescribed 300 and my neurologist upped it to 1200 per day.

  • MuddlingThrough
    MuddlingThrough Member Posts: 655
    edited July 2018

    Egads007, your post gives me hope for my hand. Thirteen weeks out I've thought it was permanent too. It might be but I need to give it much more time before I give up.


  • Hariry
    Hariry Member Posts: 100
    edited July 2018

    Hi ladies,

    6weeks PFC now and the stiffness peaks. Not only my hands but everywhere. Pain to even pull myself up from the couch or the bed in the morning. I used to have trigger fingers and they hurt more now. Can't open the bottle cap. Very clumsy when turning door knobs. Luckily all these get easier after my body warms up. And luckily no problem to tab on keyboard and mouse.

    Ingerp, some pathetic hair grow during taxol, after AC. Isolated... look like minions :p

    And now I see the"lawn". They spurt together. I'm happy and can't wait to throw away my wig.


  • Egads007
    Egads007 Member Posts: 474
    edited July 2018

    Muddling - Never say die or lose hope lol! Can't recommend the stress/tennis ball enough....if anything you'll have 'fit' hands :)))

    Hariry - I forgot about the door knobs and bottle caps! (it's been a while for me) At the time it was frustrating. Thinking hard about it I would say that my thumb joints are still a wee (like tiny) bit funkly, but only when overused....and I'm convinced it's the tamoxifen more than long term chemo SE. Hope you get to throw that wig out soon!

  • JackyR
    JackyR Member Posts: 39
    edited July 2018

    Just finished second taxol and feeling good after a 3 week break. I'm hoping many of you get relief soon. I'm trying to stay optimistic but the sound of neuropathy sounds horrible and I can't imagine things being worse than what I had with AC.

    I like reading your posts though. We are fighters here!

    image

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