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Weekly Taxol group

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Comments

  • vlh
    vlh Member Posts: 773
    edited August 2016

    Thanks, Bird-of-Light! I'll check those out.

  • Ctay
    Ctay Member Posts: 2
    edited August 2016

    Thank you so much, I guess I should be happy that it is not the herceptin since I have to have that for the next year. Two more taxol infusions! Just hope my poor arms can hold up.

  • vlh
    vlh Member Posts: 773
    edited August 2016

    Sorry to hear about the rash, Clay. That must be miserable, but at least the Taxol will be done soon.

    Fireheart, YIKES on the 10-month ordeal! Give those red blood cells a pep talk. ;-) Re: the frozen grapes, I recall the MO saying to avoid most raw produce. Does freezing the grapes kill bacteria like cooking would? I MUST hit the salad bar at Jason's Deli before chemo starts.

  • MJS1266
    MJS1266 Member Posts: 159
    edited August 2016

    lindzanne,  I participated in an icing study for Taxol.  Researchers believe that it is effective at reducing and preventing neuropathy.  I did get mild neuropathy and it is still hanging on no pain but mild tingling and numbness.  The research staff told me that very few of the women in the study got neuropathy, bummer that I was an exception.  I wonder how bad it could have been if I wasn't icing.  Icing is also supposed to help you keep your nails.  For your nails, you can also paint them a dark color to protect them from the sun and light which apparently contributes to discoloring.  Also, you can use tea tree oil on your nails it is a natural anti-bacterial.  I had some discoloration and a little separation in my big toes but did not loose any nails.  The color has finally, after about a year, returned to normal on my big toenails apparently the big toenails are super slow growing.  All the best, MJ

  • Katjadvm
    Katjadvm Member Posts: 117
    edited August 2016

    fire heart: I think it is so cool that you are doing art therapy during chemo. They don't offer that at my center. I must discuss this with them. Wonder if I can help get a program started there.

  • labscientistmom
    labscientistmom Member Posts: 63
    edited August 2016
      • so I usually post on June chemo most often, but just finished 12 weeks of taxol...I have been using OPI Avoplex and nail strengthener.I got it from Amazon. Fingernails are doing good some splitting of the layers. one big toenail discolored and other big toe gets sore but nail is ok.
  • SerenitySTAT
    SerenitySTAT Member Posts: 3,534
    edited August 2016

    Hi!

    I had my 12th Taxol last week on Tuesday. I had intermittent neuropathy in my feet between #9 and #11 (burning/stabbing pain). After taking Reactine and sublingual B12, I had no neuropathy before my last treatment, but when I stopped the Reactine and B12, the neuropathy came back. Please continue whatever supplements you take to prevent neuropathy. I've read that it can present months after chemo treatments end. Was told by a lymphedema specialist that chemo remains in your body for about 2 months. Planning on supplementing for at least that time.

    My Taxol recommendations are still dark nail polish, icing, and vitamin B12 to prevent nail and neuropathy problems. I always supplement magnesium. The medications we receive during chemo deplete B12 and magnesium. I added a B complex vitamin after treatment ended.

    VLH - If I had to do this again, I would buy more of those flexible gel packs with wraps. I only had one, but it was big enough to use for both hands at the same time. Haven't had any problems with my hands so far. If I had one wrap for each hand, it would have been easier to use my smartphone without taking my hand off the ice. Instead, I alternated hands. We had access to an ice machine, so I brought ziplock bags instead of the gel packs. Also, I had my port surgery with only local anesthesia in the morning with my first chemo infusion later that day. Easy compared to other things we undergo.

    Ctay - Sorry to hear about the rash. If additional allergy meds don't work, you may need another steroid. I took Reactine for my neuropathy in my feet that started as itching followed by burning/stabbing pain.

    fireheart - I've had the same reaction to people coughing at the cancer center. There was one guy who didn't even cover his mouth! I moved out of his line of fire.

    Good luck with your remaining treatments!

  • Eleanora23
    Eleanora23 Member Posts: 39
    edited August 2016

    Question! About whether or not oncologist stops treatment when mild neuropathy sets in on the tAXOL x12 regimen - and if they usually continue to do full 12 treatments. I reported mild but persistant numbness, very light, in my toes and hands during the week after TAXOL treatment no 9. Oncologist said to stop for the week. Also said that is I were to "make up" the missed tx at a later date, that would be up to me. Seemed to not have any opinion on it (as I know what is best!). I understand that the regimen of Taxol x12 plus Herceptin is now pretty standard for Stage 1 HER2+ but that there isn't much research, but I asked: "Will this cause a problem in the treatment plan being effective" Didn't quite expect the onc answer of "I haven't the least idea/ no way to know" Just wondering if anyone stopped early or skipped a treatment?

  • fireheart438
    fireheart438 Member Posts: 85
    edited August 2016

    VLH - My MO was fine with my eating raw fruits and veggies as long as I wash them thoroughly. I counseled with two Nutritionists (one at the hospital where I had my BMX and one at the local cancer center where I'm doing my treatments); both encouraged me to eat as I usually do. While I'm not a vegetarian, I base my diet on produce, beans, and grains and use most meats as side dishes. The only diet restrictions were no sushi (hate it anyway), no raw meat, no buffets. Other than that I was counseled to eat as I normally do and make any adjustments based on SEs IF they occur. And, yeah, the hives sucked.

    MJS - Thanks for sharing your info about icing. I appreciate hearing from folks who have experience and data to share.

    Katjadvm - Art therapy is the best...and I'm the least artistic person I've ever met. Last week was very therapy oriented. This week I painted a little keepsake rock and we mostly chatted about all kind of things. It was relaxing. We talked about doing some more drawing next time. It's really making me look forward to Fridays.

    Labscientist & Serenity - HOORAY ON FINISHING YOUR TAXOL!!! WOOHOO!!! Are either of you doing anything to celebrate? 


  • Katjadvm
    Katjadvm Member Posts: 117
    edited August 2016

    Eleanora: my oncologist decreased my dose of taxol but continued with weekly dosing. I had very intermittent tingling in feet and hands from the get go, but became daily after dose nine. I am a veterinarian and do surgeries, so the thought was to kick cancers ass and protect my hands. Hope this helps. Kelly

  • labscientistmom
    labscientistmom Member Posts: 63
    edited August 2016

    fireheart: thank you, appreciate the huzzah! I have 4 infusions of A/C to do, and have been sick with bronchitis the past couple weeks so havn't felt much like celebrating, honestly. Just want to get it all done. Hoping the neuropathy in my feet and fingers (yes I iced and continue to take glutamine) starts improving soon.

  • Bird-of-light
    Bird-of-light Member Posts: 143
    edited August 2016

    Wow, tons of posts since this morning. You ladies rock! It is awesome that we have a way to help one another. Sending love and hope to you all!

    Bird

  • vlh
    vlh Member Posts: 773
    edited August 2016

    SerenityStat, do you mean something like this?

    https://smile.amazon.com/ACE-Compress-Multi-Purpos...=sr_1_24?ie=UTF8&qid=1471699761&sr=8-24-spons&keywords=Gel+packs+cold&psc=1

    I looked at the gel mitts. I can see why they're easier than Ziploc bags of ice, but look quite awkward.

    Does anyone know why some MOs use Taxol first, then AC, while others do the reverse?

  • Houston2016
    Houston2016 Member Posts: 248
    edited August 2016

    Cris's8325, does your insurance cover the genetic testing? Do you have to meet certain criteria? My dad has prostate cancer in his late 60 but all my mom's side are all cleared. I have two teen daughters and would like to know if they are being affected. Thanks.

  • Houston2016
    Houston2016 Member Posts: 248
    edited August 2016

    Here I am in the 10th week of Taxol, was doing well since the 5th week up to now, suddenly, my WBC goes down from 3+ to 2.1 so my OC ordered the Neupogen shot the day after. Today I feel kinda stiff but not so bad. Does anyone experience bone pain or something similar? Hope to eat more meat and protein to bring it up so I don't have to take it next time.

  • Lindzanne
    Lindzanne Member Posts: 32
    edited August 2016

    Thanks for all the good advice folks! The nurses at the infusion center are discouraging icing for taxol. They said there are some chemo drugs it works for, some it doesnt, and taxol is one of them that it doesnt. They may not be up on the most current studies though, if you participated in that trial, MJS. So I am not sure if I will just bring my own stuff for icing or not. I do have L glutamine, vitamin B6 but looks like I should get a B12 too, although I have a high potency B Complex so I wonder if getting both is overkill. I also got some biotin for nails, I read about a few people using it and having great success with keeping nails healthy. I've also purchased some alpha lipoid acid for neuropathy. So sounds like tea tree is good to have around, dark nail polish, and maybe some polish that strengthens nails.

    Someone asked about icing with AC, I just completed my 4th and last round of that, with no icing and no neuropathy. I have not heard of anyone else having neuropathy as a symptom either. I did drink very cold ice filled water during the infusions to minimize mouth sores and each round would end up with one sore that would resolve quickly and some tounge/taste bud sensitivity that also resolved quicly. I rinsed religiously 4 times a day with salt water.

    Again thanks for all the helpful suggestions, I wish none of us had to be here but what a supportive group. I'm glad to have this resource as I move into Taxol!

    Lindsay




  • labscientistmom
    labscientistmom Member Posts: 63
    edited August 2016

    My oncologist said that @City of Hope (I am at the Mission Hills annex) they use taxol first for triple negative BCA like mine because it is more sensative to the weekly taxol. they want to hit it with that first, feel its more effective. Lindzanne: its weird that they say its not for taxol, thats not what I read, and I have to say my feet and hands HURT much worse on the weeks at first that I didn't remember to ice. I don't like the achy/ numbness but MUCH better than red, sore feet and fingers that feel like i slammed them in a door. FYI, I am done with my 12 weekly taxol, moving on this week to A/C. blessings, A

  • roofcat59
    roofcat59 Member Posts: 33
    edited August 2016

    Hi everyone, hope you are having a good Saturday. My, my this has been a BUSY discussion board since I visited last.

    VLH: I wouldn't be too concerned about the unusual occurrence I had with my port after the 3 Taxol infusions. I noticed the problem because it would get red and mottled and really painful in a straight line along the cannula just below my collar bone, lasting 4-5 days. But, lo & behold THIS time it didn't happen after the 4th infusion. Of course not, right? because I had the whole dye study thing to rule out a port problem :) !

    Since the previous times it was like a delayed rxn after steroids wore off, I'm going to attribute it to a process sort of like "radiation recall" whereby the taxane poison triggers a re-inflammation of previously damaged tissue, only in my case it was surgical damage. I'm just glad it didn't happen again.

    Today my husband & I are spending this 90 degree late summer day at our camp on the Finger Lakes. Nothing like a little lake therapy. Here's a shot from the deck of our peaceful vista.image

    Tomorrow starts my renewed energy period for walking and qi gong. Healing and light to you all.

    ((💗))

  • vlh
    vlh Member Posts: 773
    edited August 2016

    That looks lovely, RoofCat!

    Fireheart, of course you didn't have port "cooties" this time. :-) I think I recall the instructions were to only eat well washed raw produce with peels or skins due to concerns about Listeria, salmonella, e. coli, etc. No prepared salads or fruit cut in-store. I cringed when she said no fresh salsa at restaurants. As far as I'm concerned, Tex-Mex is one of major food groups. I could at least still have jarred salsa. I pretty much quit cooking when my herniated disc went undiagnosed fort months & can't get back into meal planning, prep, cleanup, etc., vs. pooping a frozen meal in the microwave.

    Interesting, LabScientistMom. I've typically seen the reverse for triple negative.

    Other than post-operative nausea, I'm not overly worried about the port. It does, however, freak me out that my chemo class handout says Adrriamycin is a vesicant, a chemical that causes extensive tissue damage & blistering if it escapes from the vein. That really brings home that I'll be poisoned in a quest to survive. Shocked


  • fireheart438
    fireheart438 Member Posts: 85
    edited August 2016

    Roofcat - That looks amazing. I'm sitting in my hammock on the back porch now. No lake, but tons of swallow tails on our butterfly bush and two of our house rabbits blinking up a storm of joy and expectations of their dinner salads. Since you asked to see the before and after Mohawk pics, here you go:


    image

    image

    VLH - Maybe what I really need is a servant to peel my frozen grapes during infusion. Hmm... Probably not going to happen, so I'd better just wash them well. I wasn't told about restaurant salsa and would never have thought of it. It's funny how each of us gets some of the same info from our docs and then some very different things. Like your love of Tex Mex, I have an affinity for olive medleys. I almost cried walking past the olive bar at the grocery store today knowing that I can't buy myself a big heap to put on my salad tonight.

    Sent hubby to a gathering himself tonight because it will be food setting out on someone's counter and kids everywhere. That's a recipe for infection disaster. I actually didn't want to go, so it's kind of nice to have an out that I don't have to explain too much, though I'm not sure the hostess truly understood when I said I'm avoiding crowds that I don't have to be in.

    Hoping everyone has a wonderful SE-free weekend.

  • Katjadvm
    Katjadvm Member Posts: 117
    edited August 2016

    Love the Mohawk fire heart.

  • vlh
    vlh Member Posts: 773
    edited August 2016

    Hand peeled grapes fed us while we're icing. That's the ticket, Fireheart!

  • roofcat59
    roofcat59 Member Posts: 33
    edited August 2016

    fireheart: your Mohawk is great; love the trendy look! Also love your stuffed bunny chemo comrade and the little terry robe. Hope the rabbits enjoyed their dinner salads :).

  • fireheart438
    fireheart438 Member Posts: 85
    edited August 2016

    Thanks everyone for the compliments on my new "do". I didn't have good product to really make the look right. Got some sculpting wax today. Going to have fun with this while I can. Today I just let it dry flat, and I actually kind of like that too. Sometimes I look at really trendy cuts and think they're so cute but would never have the guts to try them. Heck, after being bald I think I'll be up for anything.

    Roofcat - That stuffed bunny is Nurse Shortie. She was a gift from 5 friends on the west coast who got together and went to Build a Bear to make her. They each put a stuffed heart in her so I'd know that I'm in their hearts. I take her along to my infusions as a reminder of all the people who are part of my support network. She's got bunny slippers to go with her pink robe.

  • cris8325
    cris8325 Member Posts: 28
    edited August 2016

    Houston2016: My oncologist scheduled my genetic testing. When i met with the genetic counselor she said I did not qualify through my insurance but I qualified nationally. Not sure what that means but she said the most I would have to pay is 100.00. They are suppose to send a bill.

  • cris8325
    cris8325 Member Posts: 28
    edited August 2016

    Had my 4th taxol last Wednesday. Been having pains in the heels of my feet. It comes and goes. Also have noticed some bruising around my neck. Anybody else notice this?

  • labscientistmom
    labscientistmom Member Posts: 63
    edited August 2016

    VLH: RE: your comment about the fearsomeness of Adriamycin, I do think they dilute it before infusion, but wow, scary stuff. Did they tell you that the Cytoxan that you usually get with it is made from mustard gas? like WWI mustard gas. YUCK!! My lymphoedema physical therapist had an interesting comment: she said that your body doesn't know the difference between the trauma of being stabbed and having surgery to take out your appendix or some such. The recovery process depends on your mental health and response to what happened to you. Breast cancer has such a traumatic mental part, that its important to focus on our mental outlook of what's being done to us, the chemo is my friend, it is killing all the stray cancer cells so they NEVER come back.

  • Katjadvm
    Katjadvm Member Posts: 117
    edited August 2016

    Has anyone else noted burning in their breast with the tumor. It seems like it burns a couple of days after chemo. Could also be that I am going crazy. After four months of chemo, I feel like I am losing it. I have three little girls and I could just not stand the million questions, dramatic tears and screaming this afternoon. Thank god my husband took over and gave me some time off. I need my patience back!!


    Love the bunny, fireheart

  • fireheart438
    fireheart438 Member Posts: 85
    edited August 2016

    I was having a tough night and just feeling down. Thanks for sharing that perspective on the chemo, labscientistmom. It's helped me refocus.

  • labscientistmom
    labscientistmom Member Posts: 63
    edited August 2016

    this cancer thing is scary and hard. I don't feel brave but I have to be brave. I am very glad that I could help someone else be braver too, cause its helping my perspective. I want my mental state to be as supportive of my body as possible. You are most welcome. Be sttong and courageous fireheart, blessings and ((hugs)) -A

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