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Weekly Taxol group

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Comments

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

    Thanks for the info Amelia! Good thing I asked - I didn't realize that you could just get extra ice packs for it.

    Just FYI fish oil and essential fatty acid supplements is the only thing in my supplements list that was forbidden by my oncology pharmacist during chemo. Apparently some study showed fish oil can make tumors chemo resistant...

  • Amelia01
    Amelia01 Member Posts: 178
    edited April 2018

    Yes, moth, I believe the fish oil is not for platinum based chemo drugs. Good to point out. - https://www.mskcc.org/cancer-care/integrative-medi...

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3459710/

    From the link above:

    Paclitaxel-induced peripheral neuropathy in the study groups

    Peripheral neuropathy
    NormalMildModerateSevereTotal
    Omega- 3 supplemented group21(70%)4(13.3%)5(16.7%)0%30(100%)
    Placebo received group11(40.7%)10(37%)5(18.5%)1(3.7%)27(100%)
  • nonahope
    nonahope Member Posts: 695
    edited April 2018

    Moth...Those are the exact cold socks I have. I didn't wear them during infusions. But, I'm wearing them now a couple times a day. My neuropathy is really bad...more so, on the right side for some reason. My infusions were only 1-1/4 hours.

    Amelia...I was told NO Fish Oil with Taxol. Vitamin B12 was highly recommended.

    Hope

  • Amelia01
    Amelia01 Member Posts: 178
    edited April 2018

    Nonahope --- and I was told no B vitamins - not surprising to get conflicting info. Are you doing platinum based chemo? Maybe that's why.


  • LisaCincy
    LisaCincy Member Posts: 316
    edited April 2018

    I used B vitamins during Taxol. My MO was ok with it. I'm sure they all have their own rationale.

  • nonahope
    nonahope Member Posts: 695
    edited April 2018

    Amelia...I don't think Taxol is platinum based, but not sure. But, I know there is no interaction between B12 and Taxol. I was told by both my onco and NP. I also asked the pharmacist. I was told to take it to help with the neuropathy caused by Taxol.

    Hope

  • NoteRed
    NoteRed Member Posts: 59
    edited April 2018

    hello to all- I have started my weekly taxol treatment on March 26th. So far I had 2 treatments and except of the pain fatigue and constipation especiallyon days 2-3 I m doing ok. Third treatment is on Tuesday...

    2 Questions:

    - did yo worked through the whole treatment?

    - did someone had ONLY 12 weeks taxol as chemo and not other treatment?


  • nonahope
    nonahope Member Posts: 695
    edited April 2018

    NoteRed...I am retired so work was not an issue. I have metastatic breast cancer so I was on Taxol only...I had 15 rounds. Was supposed to have 18 infusions, but the neuropathy is too bad to continue. I wish you well. Other than the neuropathy (which didn't start until later), I had no bad side effects. I wish you well. Keep us posted.

    Hope

  • Kanona7795
    Kanona7795 Member Posts: 29
    edited April 2018

    Hi NoteRed it looks like we are on the same treatment cycle. I started my weekly taxol treatments on March 28. I'm doing 12 weekly taxol with 4 rounds of Keytruda on week 1,4,8,12. Then a break and start again every 3 weeks. I'm part of the I-Spy 2 trial. The second week has been so much easier then the first. I don't have much fatigue or bone pain like I did during the first round. I have had a good mixture of constipation & and then not constipated.

    I have tried to work thru my treatments then best I can. I work Mon, Tue, treatments Wed, work Thur and Friday has been depending on how I feel. I'm so blessed that my job has been so understanding and flexible with me.

    My biggest worry right now is when will my hair fall out. I was so anxious to start treatments and now I'm anxious again about my hair. It has always been long and I finally cut it chin length. But every morning I wake up and check my pillow.

    Good luck to all who are going thru treatment and dealing with SE and anxiety!!

  • NoteRed
    NoteRed Member Posts: 59
    edited April 2018

    thank you for your answers Hope. I will also ask my onc on Tuesday if I going to have another drung also.

    You know things at work are not easy especially for my psychology - its not that I am unable to work...

    wishing you the best - warm hug sent from Athens Greece

  • NoteRed
    NoteRed Member Posts: 59
    edited April 2018

    hello Kanona,

    The weird thing is that my onc hasn't mentioned any other drug during or after my weekly taxol treatment- I will ask him on Tuesday that I ll have my 3# taxol treatment

    At work so far I can manage but its not a "healthy " environment.. in fact I kept looking for a job before all that.. so its much more difficult now...i m trying though because my only income is from there:

  • NoteRed
    NoteRed Member Posts: 59
    edited April 2018

    and don't worry about the hair - it's just a different loo

  • Taco1946
    Taco1946 Member Posts: 630
    edited April 2018

    NoteRed - Because I'm HER2 positive, I also had Herceptin with the Taxol. I was scheduled for 12 weeks but quit at 8 due to painful neuropathy. MO was supportive but said that if I had had positive nodes she would have encouraged me to continue all 12.

    RE: constipation - I found I felt much better if I was "cleaned out" before chemo day. See what you need. I have taken a probiotic for years. During chemo I added mirolax daily. I never had a BM daily and a couple weeks, I added a laxative the day before.

    Most us lose body hair everywhere although there is a thread for people who choose to cold cap. By week 4, I got a buzz cut and shaved it completely by week 6. And then it comes back - often curlier for some reason. I was comfortable with scarves but I am also retired and was very open about my diagnosis. Both I'm certain added to my comfort being bald. In fact, I liked that better than the growing in phase.

    My advice for those of you who are new on the Taxol journey, hydrate, hydrate, hydrate and exercise as much as you can. Both do make a positive difference for most of us.

  • Amelia01
    Amelia01 Member Posts: 178
    edited April 2018

    NoteRed - I am also doing only Taxol (weekly) and had 3rd round yesterday. I think the drug that Kanona is on is for HER+ so you will probably only do the Taxol. How are you feeling so far? I have few complains ... just a little bit of bone pain and my mouth is a bit raw (and the insatiable thirst!). I hope I pull through these next 9 without any troubles! I'll be in Athens in October - I'm hoping that all this treatment will be a distant memory ....


    Taco - Did your hair grow back while on Taxol? I am cold capping but my head is looking pretty grim at the moment from the harsh EC and I'm going to continue with the Taxol with the hopes that I can save the salvageable.




  • Motherofall6
    Motherofall6 Member Posts: 25
    edited April 2018

    here is what I'm using to prevent nail issues and neuropathy, I just had 7/12 taxol today and so far my se is bone pain and anxiety

    Nature made hair skin nails gummies

    Nature made 100mg B6

    Applying nailtiques protein2to finger nails

    Tea tree oil on toe nails

  • Taco1946
    Taco1946 Member Posts: 630
    edited April 2018

    Amelia - I'm sorry to tell you that not only did my hair not come back during taxol but took awhile after. And it seems to have come back faster everywhere else. Many who have had other chemo prior to taxol do report some regrowth but that didn't happen for me. My center did not encourage icing or cold capping and the layout of the facility didn't seem conducive to it. In hindsight, would I have tried it? Probably not, although I did have painful neuropathy in the end. I missed my eyebrows the most! I am a real klutz with makeup. I did get gel nails throughout and didn't have any trouble with the fingers although I lost two toenails. Many consider Taxol "chemo light" and do better on it than on EC. Good luck.

  • NoteRed
    NoteRed Member Posts: 59
    edited April 2018

    Hello to all of you. on Tuesday I had my 3rd Taxol. So far I'm doing fine, you know I have fatigue a little pain and constipation (but the onc told me that constipation is mostly due the anti nausea pils). I 've also learned that AFTER 12 rounds of taxol I'll have and 4 rounds of FEC and that made me a little upset and sad

    How are you doing these days? Amelia I will be happy to meet you when you will be in Athens :) and all of you of course.

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

    for icing, is it important to cool the soles of the feet and the palms, or should I just focus on the toes and tips of fingers?

  • Lolotte19
    Lolotte19 Member Posts: 122
    edited April 2018

    good question moth. I will look forward to reading the answer as I am starting weekly taxol next week.

  • Amelia01
    Amelia01 Member Posts: 178
    edited April 2018

    Moth - I've heard of doing finger tips and toes -- or really whatever part you can stand!

    I just finished round 4 on Monday and my only complaint is that food isn't tasting just right and my tongue is a bit raw. Happily not complaining about anything else and fingers crossed for the next 8!

    Is anyone else just running on adrenaline? I'm so ready to get this over with that I am just about climbing walls. Just when I thought I was about done with chemo, I realize that as of today I've done 8 and still have 8 more to go! I can't seem to look at it as 4 months in with only 2 more to go.

    While being stir crazy during session 4 I had the clinic esthetician come give me a pedicure (ah yes, lovely service they have!). She told me that the reason behind nail beds lifting during Taxol is due to the keratin build up under the nail that accumulates thus pushing the nail up and away. She suggested a hand and foot cream with 5% urea and told me to massage it into my nails and keep them in socks for 20 minutes here and there. I'm guessing the trick is to keep them moist and sloughing off the excess keratin. I had never heard of that aspect before. Worth a try, I suppose.

  • nonahope
    nonahope Member Posts: 695
    edited April 2018

    Amelia...Interesting about the Keratin. My big toe on my right foot is a mess. I haven't lost the nail...yet.

    I'm finished with Taxol and now on oral chemo -- Ibrance/Letrozole , but still fighting the horrible neuropathy from the Taxol. I barely sleep at night and it's very difficult to walk as my toes are numb and there is a constant burning pain on the top of my feet. Taking Gabapentin and hoping it kicks in before long.

    Hope

  • alwaysbepositive
    alwaysbepositive Member Posts: 28
    edited April 2018

    Hello everyone,

    I was put on TCHP and had 2 treatments and got deathly sick and was hospitalized with a WBC of .7, fever, and chemo induced c.diff. After I got out, my MO changed my treatment to weekly Taxol with H and P. I tolerated that much much better and they told me that weekly Taxol is just as effective as Taxotere. I had weekly infusions from Sept - Dec. I lost all hair, everywhere, but most of my brows and lashes fell out the week after I finished Taxol. My head hair is growing in fast and thick, lashes and brows are slow. I need to try some of the suggestions here, like caster oil. My place didn't even offer a cool cap. My nails are pretty bad, dented and very very thin and brittle, I keep them very short. My big toe nails are black and humped up, they look awful. I almost lost one of them, it got infected in the middle of the toenail and was draining pus, lovely I know. I kept soaking it in peroxide and it finally got better and hasn't fallen off. I had a lot of fatigue with all the chemo I took, and am just now starting to get my stamina back. I have had diarrhea most of the time, since the beginning, but I'm on so many drugs, injections, and supplements that I'm not sure the cause. I also had extremely dry skin with Taxol, I had to use hydrating body wash and immediately after every shower use a lot of Eucerin cream. My ears and face were also very dry and I used gentle face cleanser in the shower and then a good hydrating moisturizer right after shower. I also got neuropathy while on Taxol and my MO put me on high dose B6 after about 3 weeks and it greatly reduced it. I still take it daily along with a B Complex and my neuropathy is gone completely. Now I am on Herceptin, Perjeta, Arimidex, and Xgeva. I won't have to do another chemo unless my mets progress.

  • mdevroy
    mdevroy Member Posts: 5
    edited April 2018

    I started Taxol on April 12 along with Herceptin and perjeta. I will be on the Taxol for 12 weeks have my second treatment tomorrow. I will need to Do Herceptin and Perjeta every three weeks until April 2019. Have not had surgery yet the hopping to shrink the mass. Then Ill have lumpectomy or mastectomy depending on my genetics results. Might need radiation or more chemo depends on what they find and what I do. I am 51 with a 21 year old son. I truly am a single mom my ex-husband was killed in a car accented 4 years ago this June. All of this scares me but I am trying to stay positve, My work has been great I will work the days I can. So far I feel good a little tired and some aches and pains still have my hair I know this all will change.

  • Taco1946
    Taco1946 Member Posts: 630
    edited April 2018

    Hi mdevoy - How great to have a work place that will work with you. I just did T & H but would have found it hard to go to work some days. Thurs. isn't a bad day to have chemo as many of us report most discomfort on days 3 & 4. Depending on your "pre chemo cocktail" you may not sleep much Thursday night because of the steroids. I was still wired the next day but then crashed. Hydrate as much as you can and try to do a little walking. I also found it helpful to make certain I didn't go into chemo with full bowels. I continued my probiotic and took miralax (mixed with diet lemonade) the whole time and took a laxative the day before the day if I needed it. That cut down on both the constitpation and the subsequent diarrhea. I also realized that I wasn't really nauseous, just having heartburn and was helped by nexium rather than the anti-nausea medicine MO gave me. For reasons I still fail to understand, many of us are helped by taking generic claritin (not D).

    Reach out to friends and don't try to shelter your son. Rides to chemo, a meal chemo night, etc. I even had a friend who offered to come to chemo and watch me sleep. My experience is that people want to help but don't know how unless we say "this is what I need."

    Stay close and stay hydrated.


  • paisley2916
    paisley2916 Member Posts: 55
    edited April 2018

    hello! I just had my 5th taxol today and the bottoms of my feet feel tingly like they are numb or asleep. This is a first for me. Should I contact the doctor or just tell them at my next appointment? Is there anything I should be doing to get it to go away - or will it go away on its own? Thanks

  • Taco1946
    Taco1946 Member Posts: 630
    edited April 2018

    Paisley - If your feet don't get painful, you probably can wait but you could put in a call to your PA so you don't stress about it all weekend. Do be careful you don't fall, especially getting out of bed. Probably won't get better until after Taxol and MO may want to change doseage next time. Mine got very painful and she gave me gabapentin (Don 't think I'm spelling that right) and MO stopped Taxol after 8 but I don't think she would have if I had lymph node involvement.

  • PhoenixCruiser
    PhoenixCruiser Member Posts: 57
    edited April 2018

    Before I started Taxol I read about icing your finger and toenails to avoid lifting, nail loss and neuropathy so I purchased some CyroMax Cold Pack on Amazon. I highly recommend this for those starting Taxol.

  • nonahope
    nonahope Member Posts: 695
    edited April 2018

    Alwaysbepos....How many Taxol infusions did you have? I will have to try the B6. How much do you take? I do take B12. My neuropathy is horrible...can barely walk.

    Mdevroy....I wish you well on your journey. It's not easy under any circumstance. It's especialy difficult when you are a single mom. I do hope your son is there to support you, as well as other family members. I live alone - my kids are grown. I'm fortunate to have a sister who lives a few doors away and a daughter a few streets away. Hang in there!

    Paisley...Tell you doctor about the tingling. That's the start of neuropathy. Mine didn't start until around the 11th infusion. I didn't speak up soon enough. I had a total of 15 infusions -- was supposed to have 18. Your doctor will probably drop the dosage of Taxol. My neuropathy is horrible and I wouldn't wish it on anybody. I am taking Gabapentin, hoping it kicks in soon.

    Hope

  • mjb1018
    mjb1018 Member Posts: 151
    edited April 2018

    Going on #8 of 12 Taxol + Herceptin treatments tomorrow. Over half way done, and I've finally figured out my SE cycle! Friday (infusion day), I feel good, then sleep off the Benedryl. Saturday I feel good from the pre-med steroid, Sunday & Monday a little achy, but generally feel decent. Then it's downhill T, W and Thursday...to start over on Friday! I am getting radiation daily, as well, so I'm sure that is contributing to the crappy feelings in between.

    Amelia01, I had terrible issues with mouth/throat irritation and sores during AC. It got a little better when that was done. Since I've started Taxol, the top of my tongue feels like I've burned it. Super annoying! It does make it difficult to eat sometimes. Treatment is definitely a long road! In my mind, I've tried to break it down in to small chunks and one treatment at a time. First, 4 AC. Then surgery. Then radiation (6 weeks, daily) and 12 Taxol+Herceptin....then every 3 weeks Herceptin for 7 more months! I found my lump the end of October 2017, diagnosed mid November and it's been a roller coaster ever since! It helps to take one thing at a time and not look too far ahead.

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

    Dear ladies--I'll officially join the group in a couple of weeks. I have an appt for patient education on Monday. In the meantime I have a bunch of questions, and while I could scour BCO and come up with a lot of answers, I thought I'd just post here. Most relate specifically to the first infusion.

    (1) What did you eat the night before your first infusion? Big fun meal in a great restaurant? Or something light so as not to have a lot of food in your tummy through the infusion?

    (2) Did you eat morning of? I've been intermittent fasting for quite a while so I don't normally eat breakfast. Is going in with an empty tummy a bad idea?

    (3) What clothes do you typically wear? I'm a little torn between thinking I'll want to be like a kid and go in my jammies with a teddy bear, and wanting to put on some decent clothes and walk in with a bit of an attitude. Is a short-sleeved shirt required (I will not have a port)?

    (4) I've read about water water water. Do you pre-hydrate the day before? I assume taking a pee during infusion is okay? How long after do you keep drinking a lot of water?

    (5) Talk to me about Claritin and mouthwash.

    (6) I have a weird fear of (or maybe distaste for) the big D. I've been surprised to read about so many women dealing with constipation. Specifically for Taxol + Herceptin, did you have any bowel effects? Anybody prophylactically take Imodium before infusion?

    (7) I know exercise is important and will do my best to keep up with my routine, but is it weird to exercise the same day as an infusion? The place I'll go is across the street from a gym I belong to and in my head, at least after the first one, I plan to hit the gym for a bit before going for tx. Any reason this is a bad idea?

    (8) I think I'm pretty good on what people actually do during the infusion but welcome suggestions. My MO pointed out they "have *great* wifi". She said some people actually bring laptops and work. I'm thinking maybe just an iPad to watch some Netflix or whatever? And maybe the newspaper? How much can you move an arm with an IV in it? I've only ever had them for surgeries and was always super careful not to move that arm much, but my guess is you can actually be more cavalier about it.

    I know this was long, and will definitely ask these questions during my education session, but I'd also welcome any responses over the weekend. TIA!!