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Weekly Taxol group

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Comments

  • seq24
    seq24 Member Posts: 451
    edited February 2017

    TeamCookie--I am not sure if this helps at all but I had the same type of cancer as you. Mine started out as grade 2 then after surgery changed to grade 3. I had AC and Taxol. My MO told me this was the most effective and strongest form of chemo there is for this type of cancer. I just wanted to get rid of the cancer so I did it. Taxol was very easy compared to the AC. 3 1/3 weeks PFC now and I feel great. Started radiation yesterday.

  • TeamCookie
    TeamCookie Member Posts: 3
    edited February 2017

    seq24-

    I have just heard horror stories of Taxol so hearing your experience wasn't bad does help. I will have 2nd AC treatment on Friday. I'm not sure exactly what to do when it comes to Taxol. Ugh!

  • rlk58
    rlk58 Member Posts: 150
    edited February 2017

    I have weekly Taxol-not bad at all.I ice my fingers and toes so my nails aregood.

    Rhond

  • seq24
    seq24 Member Posts: 451
    edited February 2017

    TeamCookie--if you are getting through AC you will have no problems with Taxol. I tolerated AC well with few side effects. When I got my first Taxol treatment, except for being sleepy from the Benadryl they give, it felt like I didn't even have chemo. It was great. They start out with a large dose of Benadryl in case of an allergic reaction and if there is none they can reduce it. I went from 50 mg to 6.25 mg. Taxol effects are cumulative, but even towards the end the worst thing I had was some leg, hip and back aches for a couple days each week. I took Claritin throughout the whole 12 weeks of Taxol and that helped some and Tylenol or Iboprofen helped with the rest. I felt good the whole time. Not even much fatigue. If you have any specific questions, let me know. I'd be happy to answer. Good luck!

  • bravepoint
    bravepoint Member Posts: 232
    edited February 2017

    Teamcookie, I also have a similar dx and found Taxol not nearly as bad as AC. My experience was pretty much the same as seq24. I was achy and tired but nothing that Tylenol didn't help. I don't take Claritin but get Benadryl before every chemo treatment. My taste buds are gone and the end of my tongue feels as if I burned it on hot coffee which is annoying. I have done 7 of 12 weekly treatments.

  • trishyla
    trishyla Member Posts: 698
    edited February 2017

    Had Taxol #11 on Tuesday. Last one next Tuesday. Whoohoo! I'm with the other posters. Taxol is much easier than A/C. Some peripheral neuropathy, funky tastebuds, and achy, tired legs were my main issues. Mostly minor annoyances.

    That being said, after five long months, I'll be happy happy, happy to be finished with chemo.

    Trish

  • seq24
    seq24 Member Posts: 451
    edited February 2017

    Trishyla--Congratulations! Almost done!! Good luck with the last one. I finished on Jan 20. I didn't even notice the leg aches after the last one. I was too excited knowing that I was done!! Things pretty much got back to normal within a week.

  • trishyla
    trishyla Member Posts: 698
    edited February 2017

    Thanks seq24. Im counting down the hours until I finish. I'm so ready for my body to start getting back to normal. The steriods have finally started to affect me. I feel like I've blown up like a balloon. I just want these chemicals out of my system.

    Trish

  • daisy777
    daisy777 Member Posts: 11
    edited February 2017

    Hi All. I have been reading through your posts and so excited for you ladies that are so close to being done! I dream of that day. I was to have #5 Taxol today, but it was cancelled because I have been having chest pain and shortness of breath. I have had a cold, so oncologist is not sure if symptoms are from the chemo or from my cold. The shortness of breath is even at rest at times. If the chest pain and shortness of breath do not go away, chemo may be stopped so I am freaking out a bit. Has anyone had this side effect?..or known anyone that has had to stop chemo?….I am having an ALND in early May as the 2 sentinel nodes they took had extracapsular extension. I really feel I need all the chemo I can get.


  • Connie1230
    Connie1230 Member Posts: 45
    edited February 2017

    Has anyone else had numbness in fingertips and toes that comes and goes? I am using the cold mittens and booties to prevent neuropathy but I'm sure that's what this is. It seems to get worse towards evening....gone in the morning and slowly comes back during the day. It's not bad even at it's worst but I still have 6 more treatments to go

  • seq24
    seq24 Member Posts: 451
    edited February 2017

    Connie--My oncologist told me that neuropathy can come and go. That it isn't always constant. I had the start of it in a couple of my toes for a few days towards the beginning of my Taxol treatments and it would also come and go throughout the day. I mentioned it to the nurse one day and she said the Taxol was definitely affecting my nerves. She suggested drinking a glass of tonic water every day and that should help. I just thought that sounded like a weird remedy but I did it anyway. Within 2 days that feeling was completely gone. The next week a different nurse asked me if I had numbness and tingling. I told her I had it the week before and before I could even finish she said that I should drink tonic water. So I continued to drink a glass of it every day throughout all of taxol and for about a week following the last treatment. The stuff tastes awful, but I found adding a couple slices of fresh lemon or a little Crystal Light helped some. I think it still sounds like a strange thing to do but it worked for me.

  • Connie1230
    Connie1230 Member Posts: 45
    edited February 2017

    Thanks seq24. I'll have to try that. I'm not sure I can choke it down; I tried it once before when it was recommended for leg cramps years ago. That didn't go so well. Maybe with the lemon or crystal light, it will go better. I think I have the gag reflexes of a child, which is quite irritating

  • seq24
    seq24 Member Posts: 451
    edited February 2017

    Connie, one other thing I found out with the tonic water is that the colder I could get it the better. That kind of helped kill the taste too. I always bought the diet tonic water. Maybe the regular tastes better. I choked down a large glass of it every day for 9 or 10 weeks. It scared me enough when I had the tingling in a couple of toes I would have drank 5 glasses a day if I would have had to. Good luck. Let me know if that works. The at my cancer center nurses swore by it.

  • highhopes
    highhopes Member Posts: 51
    edited February 2017

    Thanks for the info about drinking tonic water for neuropathy. I have it my feet and fingers. The feet are the worst. In the beginning of the week after the Taxol infusion, it appears that the neuropathy is diminishing but toward the end of the week, it appears to get worse. I, too, bought the diet tonic water as the regular tonic water has a lot of sugar, If I'm going to consume a lot of sugar, I like it to be more appetizing. Will give an update after I've drank it for a while.

  • seq24
    seq24 Member Posts: 451
    edited February 2017

    Highhopes--Good luck with the tonic water. Please let me know if it works for you. I had good luck with it and the nurses swore by it so there must be something to it. And I agree, if I'm going to consume sugar it has to be something better tasting than tonic water. That stuff is awful.

  • trishyla
    trishyla Member Posts: 698
    edited February 2017

    Hello all

    I just wanted to chime in on the neuropathy. One of the best thngs to prevent/alleviate neuropathy is L-Glutamine. Many of the large cancer centers recommend it for their Taxol patients. I've been taking 30 grams per day during my entire course of treatment. I have minor issues in my feet, and a couple of fingers, but so far nothing worse. My father in law had chemo a couple of years ago, and had been struggling with loss of sensation in his fingers. He couldn't even button his own shirts. I sent him some L-glutamine right after Christmas, and his improvement has been slow but steady. He's thrilled to be able to feel his fingertips again.

    L-glutamine is an essential amino acid made by your body to help muscle recover from exertion. It's completely safe, with no side effects. You can find it at health food stores or online. The usual dose is two teaspoons mixed into juice three times a day. (30 grams total) It's chalky but flavorless. My oncologist had no problem with me taking it. Hope it helps.

    Trish

  • shelabela
    shelabela Member Posts: 327
    edited February 2017

    I can't remember who recommended Claritin but thank you! Helps a lot!

  • seq24
    seq24 Member Posts: 451
    edited February 2017

    shelabela--Claritin was a life saver to me all through chemo. I took it for several days after each Neulasta injection I had with AC, then I took it continually all though Taxol. I just read something the other day that a lot of doctors recommend taking it daily with hormone blocking drugs and that it is the only antihistamine that can be taking long term. I will be starting those in about a month. I will be asking my MO about this.

  • aterry
    aterry Member Posts: 142
    edited February 2017

    Trishyla, thanks for sharing your experience with L-Glutamine. How many grams are in a teaspoon? How many teaspoons do you take to get to 30 grams? Do you take it in several doses spread out during the day?

  • shelabela
    shelabela Member Posts: 327
    edited February 2017

    seq24, I plan to talk to my MO tomorrow about this. I am doing Taxol weekly right now, with Herceptin, and Prejeta every 3 weeks.

    Let me know what your MO tells you. I will also be taking hormone blocking drug after all is done

  • trishyla
    trishyla Member Posts: 698
    edited February 2017

    aterry,

    Just edited my original post. The powder is 5 grams per teaspoon, so you need 6 teaspoons per day. I spread it over three servings, 2 teaspoons each. Mix it with juice. It helps!

    Trish

  • Novbaby
    Novbaby Member Posts: 28
    edited February 2017

    hello! This is my first time here.. had no 9 of taxol. No 9 was harder for me, out of breath even at rest (i see someone has this too, anybody else, is this a common se?)

    Seq24, were u taking claritin for bone pain? N if so,u really did not have any bone pain?. I am having this pain in my back ( upper back) it cones n goes.. also numbness in face, mastectomy area n d upper back too.. just wondered if this is a normal se..I also have severe reflux n bloatingThanks everybody.. i have read some of your post n see that im not alone..

  • seq24
    seq24 Member Posts: 451
    edited February 2017

    Novbaby--Almost done with Taxol! That's great! I know #9 seemed to be my hardest one too, even though I had no terrible effects from it. I think I was just more tired after this one. I took Claritin every day throughout Taxol and for a week or so afterwards. It didn't completely eliminate all of the pain but it helped and Tylenol or Ibuprofen took care of the rest. About the middle of Taxol I started having an achiness in my lower back, hips and legs from my hips to my knees. If I didn't take tylenol or ibuprofen it would keep me awake at night. It usually started on day 3 or 4 and lasted 2 days. It was not fun, but it was tolerable and as soon as the last Taxol was finished I never got it again. I have heard that numbness in the face is a SE as well as the reflux. I did not experience this, but know that others have. In some people the Taxol can cause severe stomach issues. Please reach out if there is anything I can help you with. Do you have to do radiation yet? I just started mine. This will be week 2 or 6 for me. Take care! Hug

  • Novbaby
    Novbaby Member Posts: 28
    edited February 2017

    seq24, thanks for your response.. yes i have to do radiation after this.. i had mastectomy but did not have a clear imargin, thus i have to have radiation. Whats your se witth radiation? My friend had severe fatigue.

    Hope everybody had a good week n not so severe se..


  • shelabela
    shelabela Member Posts: 327
    edited February 2017

    A question for those getting just Taxol. I just had my 3rd treatment. When did you ladies lose your hair? I know I'm shedding so I guess this is the start

  • bravepoint
    bravepoint Member Posts: 232
    edited February 2017

    I lost my hair on AC. It has started growing back on Taxol.

  • AbbyG
    AbbyG Member Posts: 12
    edited February 2017

    I started shedding big time after the first, but I had one taxotere/carboplatin infusion prior (they changed me to taxol only, system couldn't handle the original plan). Currently sporting 'peachfuzz'

  • seq24
    seq24 Member Posts: 451
    edited February 2017

    bravepoint--same here. I lost most of my hair on AC and a little more of what was left on Taxol. It started growing back about the 5th or 6th round of Taxol. It's about a half inch long now, but very sparse and patchy and definitely not my normal color.

  • Reina_de_los_changos
    Reina_de_los_changos Member Posts: 8
    edited February 2017

    Hi Blessed,

    Your post caught my eye because I asked my onc if I could stop after 10. Like you, I'm done with this shit! ;) He said there's no evidence to show that 12 would be much better than 10, since I've had a mastectomy to remove the tumors. So I'm stopping at 10. How did things turn out for yoy

  • bravepoint
    bravepoint Member Posts: 232
    edited February 2017

    seq24, My hair is almost 1/2" now and white! It was brownish blonde before it all fell out. My DH tells me that i can color it when it comes in. We'll see.....

    KB870, Thanks for making me smile this morning with your comment about your coach! My family is in to swimming so I know all about "shaving down".

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