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Weekly Taxol group

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Comments

  • adagio
    adagio Member Posts: 713
    edited February 2013

    Soteria - I never got the pain in the legs or feet from AC. You mention about peeing out the steriods on day 7 - do they really stay in the system that long? Wow!! 

    I have had 2 taxol treatments and go for my third on Saturday - I am dreading it especially since I had an allergic reaction to #2 which was quite terrifying for me - although the oncologist didn't seem too alarmed about it when I saw her today. She has simply upped the dexamethasone (not thrilled about this). 

  • 5thSib
    5thSib Member Posts: 119
    edited February 2013

    Paula -- sounds like fluid retension. AC was horrid for me but Taxol is much better. Had my treatment yesterday and planning to go to work today.



    Eric - welcome. It's great that you are helping your wife. Maybe after you share what you are learning she will feel comfortable reading herself. Also check out the Calling All TNS board. It is specifically for triple negative. It has been going for a long time so just skip toward the end and ask any questions you have. Everyone will be happy to answer.

  • Skigirl72
    Skigirl72 Member Posts: 180
    edited February 2013

    How long does a singe TX take for Taxol? I am at the cancer center for 5 hours with AC (accessing port to packing up). I was thinking it would be a shorter time because its only one drug. I am trying to time the TX around our schedules. So how are long are you there for Taxol days?

  • ridergirl
    ridergirl Member Posts: 94
    edited February 2013

    I think the Taxol infusion is about 45 min but there are also the pre-meds and they may keep you for 1/2 hr after your first one to make sure you don't have a reactoin.  Thats what they did with me and I think the whole thing took about 2 - 2 1/2 hrs.  Hard to remember cause sometimes I get pamidronate the same day and thats also about 45 min but i think the 2 - 2 1/2 was just Taxol. Also I don't have a port so add on whatever extra time that takes over having an iv started. Good luck to you.

  • gr8flmama21
    gr8flmama21 Member Posts: 5
    edited February 2013

    Mine takes about 1-1.5 hours just for taxol. Nurses say its thick stuff.

  • Dakota212
    Dakota212 Member Posts: 104
    edited February 2013

    Hi my taxol was 3 hours. Every other week. For taxol alone.

  • Mama23
    Mama23 Member Posts: 6
    edited February 2013

    I have taxol now too, I have a port but I don't get it numbed, numbing takes 20 minutes. 3 meds before the taxol, I'm in there for 2-1/2 hours but I also get Herceptin to. Hope that helps!

  • mfml
    mfml Member Posts: 14
    edited February 2013

    I'm in about 3 hours for my taxol - my third one went a little faster - I guess they speed it up if you aren't having any reactions.

    I have an odd side effect I haven't read of yet - wondering if anyone else experiencing this.  In addition to hand numbness - I am having numbness and tingling on my face - around lips and chin.  No visible drooping or anything (yet) - just a very strange sensation.  MO says this is unusual - thinking of changing me to every 2 weeks for remainder if this gets worse.  Hard for me to imagine how this higher dose would help!  In addition to B6 and glutamine - I have now started magnesium now for this too (MO said it is unlikely that magnesium deficiency the problem but said can't hurt).   I really am tolerating quite well other than that - what a "treat" almost after AC.  I did have a horrible time sleeping last night - likely from the premed steroids - nothing I took (and I tried many things) seemed to break through the steroid hyperness.  Finally collapsed at 4 AM - and actually feel good today.

    Hope everyone else is having a mild SE day...  take care

    Mia

  • PatinMN
    PatinMN Member Posts: 784
    edited February 2013

    After the first few taxols I asked the nurse to put it on a pump to get it done within an hour. Without the pump it would take 1-1/2 to 2 hours, even though the intent was for 1 hour.

  • mareluna
    mareluna Member Posts: 275
    edited February 2013

    Mama

    Don't you apply lidocaine before you go to chemo? I had to and the stick would still hurt.

  • nicole503
    nicole503 Member Posts: 99
    edited February 2013

    Skigirl72 ~ I am starting taxol on Thursday. I'm continuing my dose dense (every 2 week) schedule rather than the weekly schedule that some on this thread are doing. My MO told me there are both 1 hour and 3 hour administrations and she recommended the 3 hour for me because she thought it was better tolerated.  I'm not sure what the difference is but if there is an easier road to any of this chemo stuff, I'll take it!  3 hour for me!

    mfml ~ I am really happy to hear you describe taxol as "what a treat" after AC.  I am really ready for a kinder, gentler chemo experience!

    Be well, everyone!

  • adagio
    adagio Member Posts: 713
    edited February 2013

    Mia - I get the numbness in my face and my tongue gets pins and needles occasionally. I even get nerve pain in my ear lobes - I didn't even mention these to my oncologist because I have read that this is quite usual with taxol and it is not long lasting. I take L-gluatmine and B6, B12 and a B complex and I take 300mgms of magnesium every night before bedtime. The good thing about taxol is that eating is much more enjoyable - however, the pains and aches are not pleasant at all. My legs feel like lead for about 5 days afterwards.

    I had taxol #3 today and I was there for over 6 hours because they ran it really slowly because I had an allergic reaction after taxol #2. Fortunately today went very smoothly for me, and now I am high on steroids and sleep will not come, but my body would probably benefit from it. Oh well - this too shall pass.

  • adagio
    adagio Member Posts: 713
    edited February 2013

    Dakota - do you have to take a neulast shot after your final taxol treatment?

  • ridergirl
    ridergirl Member Posts: 94
    edited February 2013

    Adagio glad this treatment went well after the experience of last time.

  • PeggySull
    PeggySull Member Posts: 368
    edited February 2013

    The taxol does not cause me nausea. Yeah!!!



    I've done two dose dense and have two more to go. No Neulasta at all with taxol here.



    Main SE s are bone pain for about 5 days and accumulating peripheral neuropathy in my hands and now my feet. A friend of mine is 3 months post taxol and time is very gradually wearing away the neuropathy.



    Now I'm clumsy with my hands and drop things a lot. I have been taking B6 and L-Glutamine. Maybe I'll add B12 if the onc agrees. There are some supplements (I don't know which) that encourage cell division, the exact opposite of what chemo is attempting to do, So I'm bait paranoid about taking anything without his approval.



    I have another week until next taxol. Should finish March 11. It is so much better to me than the AC! I'm grateful.



    Peggy

  • Mama23
    Mama23 Member Posts: 6
    edited February 2013

    Mareluna~

    I had them numb my port the first couple treatments but it's just faster to go in and have them stick me. It does hurt but only for a minute, and I get fluids twice a week through my port as well so I guess I've just gotten used to the "pinching". I have 3 small children so the less time I'm at the hospital the happier every one is.

  • adagio
    adagio Member Posts: 713
    edited February 2013

    peggy - no neulasta even on dose dense taxol!!  Isn't it interesting all the different protocols even with the same drugs - my MO wants me to take neulasta even after my last taxol and I am wondering what her rationale is! I am planning on discussing this further with her.

    Sorry to hear about your neuropathy - I take L gluatamine, B6, B12 and and a Bcomplex and 300 mgms of magnesium daily and have very slight tingling of hands and feet only. I also ice during infusions.

  • cthynsh
    cthynsh Member Posts: 11
    edited February 2013

    Hi Mia - you are the only other person I have read that has the numbness around the mouth and chin!! Mine started right after the first taxol. My chin went numb and it gradually moved around my mouth. It has been with me since that treatment. I am going for my final Taxol on Wednesday and then hopefully after a few weeks things will start to feel "normal". My MO seemed to think it was all part of the taxol. Feels weird.



    BIG HUGS for an easy journey.

    Cathy

  • mareluna
    mareluna Member Posts: 275
    edited February 2013

    Hi,

    I had tingling around lip area after first ac chemo treatment. It went away. I have neuropathy in hands and feet from taxol. I really find it uncomfortable. I went to have toe nails clipped on Friday. My feet were jumping as Jackie was doing them. Was not up for A soak. Still sore from mx and recon.

  • politicomama
    politicomama Member Posts: 52
    edited February 2013

    Mama23, welcome to the too young to be here group, though aren't we all too young.  I was dx in October at 32.  I have two kid, a son who is a year a half, and a daughter who is almost 10.  Some of the urinary stuff I had issues with on AC.  MY gyn reminded me that all cells are being destroyed and the balance of things down there is comprimised.  She recommended Luvena, it is a probiotic that is safe to use until chemo is over.  She is my friend too, so I trust her immensely, and I think she actually gets it unlike the ONC sometimes.  

    I have been MIA.  I switched Taxol to Wednesday last week, so I go could go to Prof. Dev. for work and ending up coming down with the stomach flu on Friday morning.  The baby had it last Saturday, and the girl had it Thursday, so I knew it was a matter of time.  I was only actively sick once, but I was down for about 48 hours.    Yuck!  

    Has anyone else noticed when they are sick that there arm they had ALND in aches a little more.  I was seeing a PT for cords which have cleared, but this darn arm has me paranoid!  

    Hope everyone else is doing well. 

  • Mama23
    Mama23 Member Posts: 6
    edited February 2013

    Politicomama~ thanks for the info! I was seriously thinking I was going crazy, until I joined this chat and found out another person had some urinary discomfort too. It's just upsetting to me when my ONCO and every other doctor I've seen for this issue has "no idea". I'm sorry to hear that you and your kids were sick. Mine have had awful coughs, which of course I wasn't able to dodge that bullet! I feel like since I get chemo every week I cant fight this cough off. I only have two more taxols, I still have Herceptin until December though.



    I hope your arm pain goes away soon! I don't have surgery until April.

  • Cindi74
    Cindi74 Member Posts: 69
    edited February 2013

    <areluna.  Lidocaine one hour before chemo.  Thick enough not to see port skin.  Cover with saran wrap.  I feel nothing.  Nurse  could be standing on the other side of the room.

  • mareluna
    mareluna Member Posts: 275
    edited February 2013

    Cindi,

    That is what I did too. I also took Ativan on chemo day. I finished chemo 7 weeks ago. Port is gone now. I had it out on feb 5. I had bmx too and direct to implants. So glad that is behind me.

  • ywheels22
    ywheels22 Member Posts: 74
    edited February 2013

    Mareluna: Great that you are done!!! It cannot come fast enough for me. I have round 2 of AC (with Nuelasta shot next day) tomorrow. 4 AC then I start 4 Taxol. My last treatment is May 15. The AC was okay for me but the shot did me in. Pain and aches were bad so for #2 I got some percoset pain meds. I hope that helps.

    How was the Taxol? How are you doing now? You must be so happy to have it behind you!

  • mareluna
    mareluna Member Posts: 275
    edited February 2013

    Hi ywheels,

    Ac was rough. I don't think neulasta shot was too bad. But I don't know. I felt bad for about 10 days on ac. Taxol was easier. I had 12 of them. They did get harder to do. I am still dealing with the neuropathy. I am also dealing with surgery recovery. I have been sleeping a lot for the past 3 days.

    I wish you the best with your treatments.





  • ridergirl
    ridergirl Member Posts: 94
    edited February 2013

    Have Taxol #2 this wed here's hoping the neuropathy doesn't get any worse its driving me nuts!!!!

  • jayjayc
    jayjayc Member Posts: 31
    edited February 2013

    Hi all,



    I have #6 of 12 weekly taxol/herceptin tomorrow....... I'm sooo excited to be half way through.... but I'm dreading the stick...... I didn't get a port because I wanted to avoid 2 more surgeries and all the other possible complications but now I'm starting to wonder if I messed up..... the last two treatments it's taken 3 tries to get a good vein..... I know part of the problem now is that I tense up but really how do you not..... does anyone have any tricks, can I ask to have the area numbed first??



    I also hate to whine about the fatigue (especially since I just did the weekly taxol) but man #5 kicked me in the butt..... I was super tried thursday-sunday, I'm only feeling somewhat human today..... I hate the thought that it will just continue to get worse... I have managed to keep working (close to fulltime) and do general errands for myself.. but I'm looking forward to the steriod high (and how sick is that)..



    hope you all have good days, and no SE's

  • [Deleted User]
    [Deleted User] Member Posts: 942
    edited February 2013

    jayjayc~I have a 24 year old son who's been a Type I Diabetic since age 6. He takes 4 insulin injections daily, and has had to have blood draws and IVs hundreds of times over the years.



    A couple of things that will help them get the vein the first time they try.

    1. Be very hydrated. Dehydration causes the veins to be more difficult to find.

    2. Place a warm damp cloth on the area a few minutes before the stick will help.



    I'm surprised at the many nurses who never tell their patients this. It would make things easier for the patient as well as the nurse.



    I hope your next stick is much easier, and that they get it on the first try.



    Blessings

    Paula

  • CelineFlower
    CelineFlower Member Posts: 145
    edited February 2013

    i have 3 of 16 taxol left...

    neuropathy is only a bit of a bother...

    but i am... awreck... feels like i weigh a ton... my legs hips are so sore... headaches are still not going away..

    i want off this toxic trip

  • ywheels22
    ywheels22 Member Posts: 74
    edited February 2013

    Ridergirl & Mareluna: Thanks for sharing. Most say AC is rougher than Taxol. I had about 4 bad days then started feeling better. By day 7 I was feeling pretty normal, just tired on and off. I am praying that rounds 2-4 are about the same, with less pain (or at least the pain meds work some!) Did either of you feel it got worse, better or same with each AC treatment? 

    I have round 2 tomorrow. The Nuelasta shot really did me in so here's hoping the pain meds help. I have taxol rounds 5-8, every other week. I have heard about the neuropathy. I heard taking B12 and L-Glutamine can help so I am going to be trying that. Have you tried that or heard anything about it?

    Good luck everyone!

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