Weekly Taxol group
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Thanks Nayda! I kind of feel like I fell off of the train awhile ago and am now in the middle of a demolition derby!!! It just HAS to be over with!!!
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lol@ demolition derby....you hit that on the nose...lol
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Decided to visit this page tonight since the weather is yucky in SC. It wasn't too long ago that I was reading all the post about weekly Taxol in that I had to start that journey. Bilateral in March, started Taxol/Herceptin in April. Finished the treatment side in July, had exchange surgery in August. During the 12 weeks of chemo, I truly believe I was who was spared the potential side effects of Taxol. The only real issue I dealt with was chronic visits to the bathroom. Minimal fatigue, no backaches, headaches or anything else that could have happened. Wasn't till about treatment eight that I truly lost most of my hair. It is now January and I have about three to four inches back. Was frustrating in the beginning because it took several weeks to see any evidence of hair on my head PFC. I want you all to know that you can do this and you are not alone. I think about you all, even though I don't know you. It is not easy, the mental aspect, the physical changes and the fear of it showing up again. Stay strong through your treatments and they will be over before you know it. Be selective about your friends....I found the ones I thought I could depend on went MIA. Good luck and keep fighting!!!!!
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Thanks for the encouragement, chapagonzo.
I'm on day 5 of my first round of Taxol. Taxol has been easier than AC, so far, but for the first few days I had a weird sensation of disconnectedness. I felt a little spacey, but w/o the fun one usually associates with that term; I haven't read any other mentions of that sensation. Also I have constipation for the first time since starting chemo, even though everything I eat has fiber. I did, at my MO's suggestion, start L-Glutamine (only 1 gram a day). I think that could be contributing to the constipation so I'll back off until things are moving again.
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Hi all, just had # 15-so far so good and scan showing bone mets on hips are shrinking.Doc asked if I wanted to keep going and I said yes. I also get that feeling of being "out of it" but I blamed it on the steroids keeping me awake. I had really bad itchy feet and I finally resorted to athletes foot cream and it seemed to help. I only had the itchiness for about 2 weeks around week 8, but haven't had it since. Most of the side effects I have, in the late stages of this treatment seem to be just plain tiredness and zero energy. My hair falls out in spurts-and then grows back-then falls out again. I keep it short so it's not all over my pillow. Lint brush is good for that. Very dry skin and no matter what lotion I use it always feels like it's not enough. Nails ok but also get dry and split a bit, I rub Vaseline into them when I think of it. Heartburn and indigestion, but if I watch what I eat, not so bad. All in all, since I've had so many treatments, I have to say from about week 8 to week 15, side effects have tapered off and/or stayed the same. I haven't really had anything surprising happen. Also, white blood cells still staying within range.
Good luck to all and be kind to yourselves
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tsu - Great news! I was really tired from not sleeping well with the steroids.
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KB870--I have had the same thing with my eyes. It happens about once a week or so. Usually the aura in my eyes means a migraine is coming on but I never get a headache. The aura usually lasts about 30 minutes or so and goes away. I have mentioned it to nurses, MO and NP and they do not seem to be concerned, nor can they give a reason why it's happening. When I got it during AC they blamed it on the Aloxi or the Cytoxan. But it has continued on Taxol too. The only common thing that has been given during both has been the steroids so maybe that's what it is. If you find out what is causing this, please let me know. I have 2 more Taxol treatments to go and cannot wait to be finished!!! This has gone on plenty long enough as I am sure everyone who has been through it will agree!
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Tsu, 15 weeks is a lot. I'm glad the SEs haven't been too daunting.
I've had an aura and visual disturbances leading to a horrible migraine, but not related to Taxol. That must be disconcerting.
Has anyone else had trouble with their teeth hurting? I don't know if it's related to chemo or the fact that the heater has been running almost constantly and my nose is stuffy. I'm on Day 6 after my 2nd Taxol treatment so have been surprised at the nasty pain in my encapsulated shoulder / LE arm, knees, wrist & herniated disc today. Last week, Day 3 was the tough one.
Lyn
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KB870 and seq24, thanks for mentioning about the visual auras. I had that today. In my "normal" life I sometimes get dizzy spells that are preceded by auras--I thought I was on the verge of that. I didn't connect it to an SE. I don't know why I didn't connect it since it seems almost any SE can pop up.
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My heart rate is elevated since last week which might be caused by Taxol. It used to be around 90 per min now it is 95~105 per min. Should I worry about it? Thank!
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I'm having my sixth of twelve Taxol tomorrow. Only six more yo go. Woo hoo! Then on to surgery and rads.
My teeth ache almost all the time on Taxol, VLH. It makes it really hard to eat. I had some issues with bone pain during A/C, but taking Claritin seemed to help. Not so with Taxol.
Aterry, you might want to talk to your MO about upping your dosage of L-Glutamine. The standard dosage for preventing neuropathy in chemo patients is about 30 grams per day. I don't think it causes constipation, but the Taxol certainly does. I've found that having a couple of fig newton's as a snack really helps to get things moving. Between that and raisin bran cereal, I haven't needed any laxatives or stool softeners at all. A magnesium supplement can help as well.
One thing I'm noticing is swelling in my hands, ankles and feet. Anyone else having problems with swelling?
Trish
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Hi Trish....I also had swelling in feet, hands and ankles...my nurse told me to soak my feet in Epson salt...which I did in my foot spa and it worked...my hands got real bad..they would hurt when I bent my fingers...my MO had to lower my dosage of the Taxol b/c of that...since he has done that my hands haven't swelled back up.
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Thanks for the tips, Nayda. I'll try the Epson salts. I'm switching oncologists, and I don't see the new one until Friday. I'll ask her about thereduced dosage.
Trish
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Because my labs were low this morning, my oncologist said I could have a booster shot today and Friday, and still have chemo tomorrow. However, my previous oncologist said that he doesn't give the booster, and instead I would miss chemo this week. I'm wondering what others have experienced when counts are low.
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Hi Reina
I had low blood counts the previous week after an infection. They gave me a shot and waited for 2 hours. Then they re-run the blood test and the counts came back quite good so they started with taxol. By the way it happened also during AC treatment.
I hope you will be just fine...
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Thanks for the reply, Trish. My MO had also mentioned that the Claritin was unlikely to help with Taxol-related bone pain as it does with Neulasta. Luckily, the tooth pain isn't constant. I almost passed out in the Costco parking lot yesterday (shortness of breath, racing heart) so that was no fun. :-p
Lyn
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I hope there won't be an issue moving forward, KB870. No one wants chemo, but if we must, we want to get it done! My chemo has been delayed three times already and that's made it drag on interminably.
Lyn
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I am currently getting my last Taxol!!!!
Yay!!!
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i wish I was having my last! Good for you! I had my first yesterday. It went well. Hiccups started an hour ago. I believe they are a SE, not sure how long this will go on?
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Thank you KB and DBear!!!
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Congratulations Nayda!!!!! How have you been feeling throughout the last treatments?
I had #11 today. Last one next Friday!!! I have had NO effect from the Taxol. Only a little fatigue and some leg/hip pain. And my hair started coming back after #5. Can you believe we made it through!!?? I remember talking to you in the beginning when both of us were scared out of our minds to start this process. Do you have to have radiation? I start mine 2/13--one month from today.
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Thank you Seq!!!
I have been doing okay thru the treatments.... I have been very tired alot...hands and feet are black and my nails on both are completely black.... They were at first swelling up after infusion.... But after Onc decreased dosage no more swelling.. Thank God.
To answer your question... No I can't believe it that we made it thru this fast..I am glad your hair is growing back.. I know you were worried about that..... My hair is also growing back.. But slowly it's taking its time... I want my hair now.. Lol
I don't think I am having radiation b/c I am getting a mastectomy on both breasts... I am gonna have to confirm that my onc next Friday.... I know will be put on a pill for I think hormone or estrogen blocker... You are right we were scared to death in the beginning lady....now I am afraid of surgery...a new unknown for me... I pray you do good on your rads lady!
Can't wait to congratulate you on Friday for your final Taxol!!!
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Aww!! Thanks Nayda! Good luck with your next oncologist visit. Let me know how it goes. I have to take hormone blockers too. I found out yesterday I will have to have extensive blood work done to determine which one I have to be on. I'm scared of the unknown with radiation and the hormone blockers too. I've heard awful stories about both, but I also heard horror stories about AC/Taxol. It has definitely not been a picnic for me, actually it's been the worst experience of my life, but it could have been a lot, lot worse than it was. I love saying that it WAS because that means it's (almost) over!!! Yippee!!!!
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I wonder if they are going to do blood work on me to determine which hormone blocker to put me on also...I have also read awful stories about the them also...so I pray which ever one I start on don't disagree with my body...I read awful stories about the radiation also...I hope that my insurance will approve me to get a double mastectomy...I want both of my breast taken off...I was told I wouldn't have to do radiation if get the double mastectomy..i hope that is true...I am so ready to be done with this whole thing...at least I can say "I WAS on chemo"...lol!
but pls let me know how your experience is with the hormone blocker and radiation lady.
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YAY, Nayda!
Almost there, Seq!
DBear, how long did the pesky hiccups last?
Lyn
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Hi everyone,
Does anyone have any info. On doing 10 Taxol tx's rather than 12? I just had #9 on Monday and its hit me hard this week. Usually i am good after treatment and on Tuesday but Wed. It hits me, the muscle and bone pains and the general malaise feeling. By Friday it starts to go away and i am better by the weekend. Well weekend is here and still feel like crap. I hate to complain because it hasn't been so bad for me these last 4 months. I think im just getting tired of this shit and want to be done already. Usually I am very positive but this has me all worked up and I feel like a woos for lack of a better word. The PA said there's no study to show benefit of 12 versus 10 weeks, just larger type studies like weeks 6 versus week 12. Do I make sense. I feel like im loosing my marbles too. Ugggg.
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Blessed2016--I just finished #11 of 12 Taxol treatments. As far as the pain, in my experience I had the most with #9 and 10. Effects of Taxol are cumulative and I didn't start really feeling it until #9. For me early on, the aches (usually in legs, hips and back) started on the third day and only lasted a day or so. The more treatments I have had the sooner the pain starts and the longer it lasts. This past week the pain didn't go away until the day of my next treatment. My oncologist confirmed on Thursday that this was definitely the effects of the Taxol. We're both almost done. We can make it!! I don't have any input on 10 treatments vs. 12. I was never given the option. I did ask yesterday during chemo how it is determined how many treatments we need. The nurse told me that it is based on years of studies and trials as to what is the most effective and what isn't. That was the only answer I got.
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Nayda--My oncologist told me on Thursday that the hormone blocking drug that is prescribed for us is based on if we are pre menopausal or post menopausal. It sounded to me that she prescribes pre menopausal women with Tamoxifen. Post menopausal women get Letrozole or Anastrazol . I have to have the blood work to check my estrogen levels (among other things) to determine which category I am in because I am right in between the two. I think I am more nervous about the effects of these hormone blocking drugs than even the chemo. Chemo is short term compared to the amount of time we have to be on these drugs. I've heard that usually our bodies adjust to these drugs but also that they never do. I would love to hear from people who are currently taking these drugs to find out what their experiences have been.
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Seq24,
Thank you for the encouragement! Yes the leg, hip and some back pain has been an issue here too since about week 3 or so. I get a sciatica type pain running down my legs and it defenitely gets worse each week as expected however, the general bad feeling has hit far worse this week which seems to be the same week you said it got worse for you. As far as the 10 or 12 week difference, I wasn't given the option but in speaking to the PA for my MO she said alot of women don't get to 12 because of neuropathy. I have a little bit on my fingers despite taking l glutamine, b-6 and icing. The reason we talked about it in my case was because i have had an issue with mouth sores and just got worse this week. I hate to just do 10 if 12 was what was ordered and researched, you know but, at the same time, if the next 3 are going to make me prone to infection because of the sores, increased miserableness and just a flat out my body is tired of this mess, then im not sure. I keep going back and forth with it this week. I have a friend here that did 10 because she had to go back to work but she said she was really done by that point. Anyway, Im just blabbing now 😒. I go tomorow for #10 and we will see what my MO says. I just need to say "I will continue to get through this by the grace of God" and move on. 😉
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Blessed2016--You have some great points there. I am so sorry you are having some bad effects from the Taxol. Its side effects vary so much between different people. I hope your infusion today went well and that it will be your last one. I am gearing up for my last one on Friday. Trying to rest up this week from #11. Pain hasn't been too bad this time, but it's only Monday. Definitely feeling more fatigue today though. I have been lucky enough to escape neuropathy. I also ice during infusion, take b complex and b 6. A couple of the nurses over the past few weeks have told me that drinking tonic water also helps prevent or cure neuropathy. It somehow helps the nerves. I drink a glass every day now too and even though it tastes awful I have had no sign of neuropathy. I don't know if its one single thing that is preventing it or the combination of everything. Or there is always the worry that the chemo isn't working because I've had no horrible side effects. The doctor is going to get tired of me asking that same question. After 20 weeks of chemo, something better be working! LOL.
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