Weekly Taxol group
Comments
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My MO said he prefers dose dense (at least for me), but didn't really offer an explanation - didn't press him, since I had assumed all along I'd be doing DD, since that's what I had for AC.
I have a reddish rash across the back of both hands and around my thumbs that started the day after infusion (Taxol #1). Starting to disappear now. Not terribly itchy, but warm to touch. No bumps.
YWheels, has your bone pain subsided? Day 5 for me and I think it's a bit better. Finally took some pain meds yesterday and that seemed to help.0 -
Soteria: So far the DD Taxol is better than DD AC. I hope I feel the same through numbers 2-4.
Caitlin: It is day 6 today (Monday) and the pain is gone. It was better on day 5. I would say later afternoon Friday (day 3) and most of Saturday (day 4) were the worse. It's like a zinging pain, mostly in my legs that comes and goes. The fatigue was also there on days 3 and 4. Better on Sunday and a bit better today. I did not take any pain meds, just alternated between Tylenol and Advil. The pain didn't totally go away but I never reached a point where I needed the vicadin. At least for round 1. Praying it doesn't get worse in rounds 2-4. Hope you continue to do well!
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Taxol #2 right now... Counts are up a bit so yay!!!!
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You wrote <<Well now they are constantly sore under the nails but also a little numb feeling on the tips. Does that sound like neurothopy?>> Yep. That is exactly how I would describe mine. My fingers are not sore if they are not touching anything, but they are super sensitive if I touch things (like typing!) and trying to zip up my pants/tie my shoes is really tricky.
For me, the neuropathy peaks about a week after my infusion and then slowly subsides. At least that was the pattern for Taxol 1 - 3. Fingers crossed that it holds for the final round too!
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JayjayC - It didn't take long for my Taxol side effects to clear up. They were 90% gone, within 2 months. Now I'm 7 months past the end of Taxol and my ONLY symptom is some VERY mild neuropathy on some days. I'm wishing you some relief as you go through radiation - which is much better than chemo!
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Hi everyone, I am at the infusion center waiting for my first taxol. Met my MO in the morning and he didn't suggest me to take any vitamin supplements. I guess I will wait and see what the SEs are like for me.
Does any of you take anti nausea med after Taxol? I have zofran but I don't know whether I should just take it regularly or take it when needed.
Wishing everyone minimal SEs!0 -
Hoping you have a smooth treatment bcfree2013! I only had very mild nausea with Taxol and didn't need any meds for it. Mostly, it just made me really tired for the rest of the day and the next day.
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PatinMN - My MO was not talking about actually dosages most likely. She was just stating that if I had to stop DD, then I would have to do three weekly treatments for every DD that I had not done. 5thSib I agree that it is probably a matter of the doctor's preference. My MO offered both options but probably woud have recommended weekly. I was very determined to do DD, so she let me. I do love a doctor that listens to the patient!
YWheels - You'll knock the rest of them out of the park, so don't worry. You survived AC, so you can survive this.
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BCfree: I took Zofran the night of tx, two the following day and one the next day. My stomach felt a bit off (not really nauseness) but I wimped out and took the med just to be safe. I had no issues and my stomach settled down. I do still have a mild case of thrush, which probably doesn't hellp and my mouth tasted like ass days 2-4, which also didn't help my stomach. I just decided to get ahead of it in case it got worse and my nurse told me to take them anyway. She said why suffer if you don't have to. That was my first Taxol. We will see how 2-4 go.
Zorina: thank you for your words of encouragement! I have felt so defeated and just tired of this that I am getting myself worried about 2-4. I feel so close but so far away!!!!
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Does anyone know if there is a dose dense taxol forum. I started taxol today and I get it every two weeks. What are your worst symptoms on taxol? As of now I feel fine just a little tired. Definitely feel better then I did after my treatment of adriamycin and cytoxen. I go for my nulesta shot tomorrow but they lowered my dose and last time I did much better. Three more treatments to go!!
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Imcclure: I don't know if there is a DD taxol group but a few of us on here are doing DD. I had my first of four last Wednesday. Friday and Saturday were aches and pains kind of like zing in your major muscles and joints. I noticed it most in my upper legs. Sunday a bit better and today better. I had slight quesy stomach so I took some Zofran Thursday and Friday but that was it. I am a wimp about my stomach so the second it feels even slightly off, I take an anti-nausea med and my nurse has always encouraged me to do so. Her motto is why suffer when you don't have to. As of now, it is easier than AC, which I did DDx4. I hope 2-4 Taxol are about the same. If they are, it will be very managable. There are some on here who are done and have said that DD taxol is far better than AC. Good luck!
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Great! That is great news ywheels 22! It sounds like we have the same treatment schedule. So far I am doing well for my day of treatment. I can actually function! Did you get any neuropathy? That is what I worry most about. Are u also doing the nulesta shot?
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Imcclure: I answered your private message before I saw this. As of now, I do not need the nuelasta shot during Taxol. I did have it during AC and it hit me hard. I had to take pain meds to get through it. I am praying I do not need it at all during Taxol. My MO said I shouldn't because my counts were through the roof during AC. Fingers crossed because I did not do well with that shot.
I have not experienced any signs of neuropathy but it is only my first treatment. I take vitamins B6 and 12 throughout taxol treatment. I also take 30 grams of l-glutamine powder on treatment day and two days after. Also somone on here suggested diet tonic water so I am doing that too. I worry about neuropathy as it seems many have gotten it to some extent. I keep rubbing my fingers, making myself paranoid!
Is there anyone who did not have neuropathy or very little?
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Back from Taxol #1. I feel tired and it seems that i lost tastebud. But so far so good.
My MO prescribed Dexan so that I can take the tablets one day before and see whether I am allergic to it. Starting from next week, Dexan will be in the IV pre-med.
Mariasnow and ywheels, thanks for sharing the anti nausea med info with me.
Everyone, have a great night!0 -
politicomama, I began to feel better in a week, but improvement was very slow. That Taxol needles and pins and squeezing in shoulders and hips didn’t stop for a month. No appetite. But it’s 6 weeks out now. Had two weeks of rads and I’m waking up feeling good. More energy and appetite. Be good to yourself.
Mariasnow No nosebleeds, but water running out occasionally. I understand it’s because of the loss of thehairs.
EmilysMom Finished 12 on Feb 20. It was cumulative, but mostly just fatigue and bad taste in mouth. Joint aches, but not pain. It’s a long slog, but doable—and I’m 75. I didn’t exercise. Just getting up and dressing and going out for lunch took most of my energy. When I needed to walk or was in a place like a big box store and wanted exercise, I took a walker so I could sit down when needed which was frequently. We were in TN in Feb where the weather was bad. Taxol was over, but had little energy.
Soteria205 I have 4 black middle toe nails which may come off. Put ice on my hand nails during A/C, but nottoes. No pbm with handsl.
jayjayc Wonderful to be done with Taxol. I nearly froze during the hour of radiation mapping. Had 14 rads so far and no SE yet. Not pink, and fatigue seems to be going and waking up not feeling good seems to be gone. Hooray. Think it was the chemo.PatinMN The rads people know how to run an office. I go in the front door and straight to the dressing room. Off with shirt and bra, and almost immediately the tech sticks her head in the door. On the table, quick prep and placement and I mentally hum three songs and they help me up. I dress right there. Once I was in and out of the building in 11 minutes.
Consult with Dr. every Monday, and xrays on Wed. take about 15 minutes more. Very pleasnt. Not at all like the poor scheduling and waits at chemo.
Emilysmom, Wow, You had kids to take care of. Who took care of you. Superwoman.
ywheels22 Eye lashes went, but I think they are coming back.
5thSib You sound a lot like me, but no headache.
ywheels22 No, no, no, don’t stop. You can do this. Hugs.
mareluna I think there was a trial that showed that 12 Taxol was better by a little with fewer SE. Just takes longer.
Had 14 rads of 33 today. Much easier than chemo except write off mornings 5 days a week.
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To those doing dose dense, there seem to be just as many people here doing DD as weekly, so I would look to this forum.
Someone mentioned about neulasta... I will tell u that it is a great shot for MOST people, but for me it caused problems. I will suffice it to say that there are alternative shots that you can get, primarily, the. NUPAGEN sot which is a daily injection that you can eat at their office or have them teach u to give it in your arm thigh or stomach. I was fortunate to have a rue come to the house daily for six weeks to give it to me. Since I have epilepsy,, they couldn't give me the neulasta shot, as it caused issues for me neurologically. If it causes issues for ou in any way, feel free I ask about NUPAGEN.
I might to be spelling it right but it is close.
It does the same thing and I never had all the side effects. Only very mild.
Someone also mentioned that it is great that the doctors offer options...
As women, we need to remember that. Think back to the time when the docs wanted US to make decisions about how we wanted them to take the cancer out... Lumpectomies, mastectomy, both, one, reconstruction, or wait, etc.....
They supposedly wanted to empower US to make that decision.l.l
The decisions we have before us today are less impacting, yet they take away the power, in SOME cases. I have spent time with my doctor listening and understanding nd asking about information that this seasoned doctor might to have been familiar with.
It is our right to do so.
It IS OUR CHOICE to decide. And we are the ones living with the side effects, and it is THER job to help us cope with that.
Keep in mind asking about supplements. Take the nausea meds if you need them... Whatever they are. Like YWHELS said about her nurs, why be uncomfortable if u don't have to be, my MOs office seems to have that theory it it took them a awhile to get to it with me due to some major neurological factors that they had to skate around to rule out what was causing certain side effects. Now I do feel empowered to speak up for myself.... Especially after enduring the AC meds for all those weeks and feeling SOOOO very sick to the point of being locked on my ass in bed or the couch for ten weeks. I could not care for my 8 yr old daughter and I am a single parent, so.... I am very glad to be doing taxol now, which truly is less intense than AC.
About nausea meds, ask the docs about the patch... There are several. They are generally weekly patches, made specifically for chemo patients. Mine is called SANCUSO. Without it, I cold not move without needing to do zoo ran .(which never worked for me.) or compazine. My MO did not want me vomiting and they have strict relations about it. Most people I spoke woTh about taxol here and other places have reported (weekly and DD) that the nausea has hardly been an issue or not at all.
Today I did my second of 12 weekly treatments. It went ok. I am home being tired and firing up to fight hard to gain some more of the energy from when I was on the AC.
Ask for what you need. Be your own best advocate if u do not have one. It is our right.
It is OUR right. Let them help you by letting them know what ou learned and ask what ideas they have for prevention of pain and nausea.
Keep on fighting....
We are ALL survivors, even if we didn't get to a certain mark yet.
Sometimes the biggest step to crossing the finish line is taking the FIRST step.
Ok, sermon done. Sleep well with minimal side effects. I am sure I will have my own questions in the morning.
Advocate, advocate, advocate. YOU DESERVE IT,!!After all, we are fighting for our lives.
Peace and hugs,
Colleen, Emily's mom in Grand Rapids, michigan
Sorry to ramble on...l I think the steroids kicked in.... LOL0 -
ywheels - I did dose dense taxol and it was fine - although I did get the dose reduced because I was paranoid about getting neuropathy. I did get neulasta throughout and it is quite unpleasant, but I never ever got sick throughout my whole chemo. I would have been happy not to have the neulasta - but my MO convinced me to go with it - so I did. I am 5 weeks out from last taxol, and I just lost my eyebrows this past week and a few eye lashes are coming out now - not happy about this - but what can I do?
Imcclure447 - the worst side effects of taxol for me was the stabbing pains that came on out of the blue - esepcially at night, I felt like a human target - it felt like pieces of concrete being thrown at me - it was awful - even lying in bed hurt. I managed the pain with 2 extra strength tylenol and 1 extra strength ibuprofen - this worked very well. This pain lasted about 4-5 days. I also got pain underneath my thumb nails but only after the first treatment.
I sure appreciated only having 4 treatments instead of 12 - but as someone mentioned, I think it is doctor's preference or the protocol of the particular cancer agency.
Hang in there everyone on taxol. It will be over soon.
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Taxol#2 yesterday. It seems my body wants to close off my port. I had some excessive fibrous tissue at the end of the catheter. So a nice big shot of heparin to dissolve it and we waited about 20 minutes and wham! That did the trick. My counts were up to 2.4 and I almost jumped up and hugged her. Its been hovering around the 1.1 range with AC and I was starting to get worried that it was not bouncing back. So, I can only hope it continues to climb. That made me very happy. Then she gave me my 50mg of benedryl and holy shit was I a mess... totally hammered. She they giggled at me for a bit then she pushed the 25mg of dex. (no wonder why I cant sleep on Monday nights now). So, I haven't had an allergic reaction to taxol which makes my nurse happy. She still runs it slow for a few minutes just to be sure. Anyway, It was a shorter day. We got there at 9 and we left at 12:30. That I can handle. No more 5 and 6 hr days at the infusion center.
Still loading up on the water and broth for my liquids. Taking all my vitamins and my protein shake. Now, I need to get my ass back to the gym. I was going to go this morning and I was too tired. I will try again tomorrow.
All and all I feel WAY better on Taxol than I did on AC. Thank god, I can see the light at the end of this very long tunnel...
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I haven't had any pre-meds since my #2 Taxol. I don't take any meds at all except Xanax sometimes to sleep ( .5mg) and vitamins & Tylenol. I haven't had any problems. I'm so glad to be done with Benadryl & steroids.
I have so much work to do here at home. I just wish I had more energy.
So far, after 6 taxol, my SEs haven't changed at all. I still lose tastebuds late on day 3, but they're back by day 5. Joint pain is minimal and comes & goes for a day or so. No nail issues yet, very minimal neuropathy, no stomach issues.
Now, if I can just maintain my WBC, I'll be happy.
Blessings
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Adagio: 5 weeks after you're done they came back? Ohh that is so crappy! How can that be!? Crap! Right now I do not get the Nuelasta shot on Taxol. As long as my counts stay good, my MO said I won't need it. I had it on all 4 AC tx's and it kicked my ass. I had no option for a smaller dose and I have no option for smaller Taxol doses. I wonder why some of you can get a smaller dose? My MO says no way!
Cindi: Thanks. I know I can't stop and I won't. Just tired already!
My pain were days 3-5. I took Tyelnol but sleeping has been a bit tough. I tried Unisom but did not like the way it made me feel the next day. I wonder if I should ask for an RX of something? I think I just need a little bit, nothing too strong.
Best to all!
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Hi girls,
I am new here. Skigirl72, I am almost on same schedule as you. I am doing taxol #2 tomorrow. I have been kinda achy last two days, especially today, and get to go for second dose tomorrow YAY, wish se's from first round were cleared up before I do next dose. Guess it is still better than ac and dose dense. My nails are streaking and feel sore at times. Just hoping they dont fall off. Hope all of you are doing okay. take care.0 -
lmcclure447 I have completed three DD taxol, and it is considerably easier than A/C. My SEs for Taxol have mostly been fatigue and muscle aches. Muscle aches only last a few days and ibuprofen helps considerable--hot baths are amazing right before going to bed. Neuropathy is bound to happen, that is the nature of the drug. For the first treatment, it totally disappeared before TX#2. While not as strong as it was right after TX#2, the neuropathy in my feet never totally went away. TX#3 has given me a bit in my fingers for the first time. Thankfully, I have only one more to go.
My pain after TX#3 was significantly less...the only thing I did differently was drink Tonic water. I am not sure if it really helped, but I am more than willing to spend a buck on some tonic water for my next treatment. It will be interesting to hear if others notice a difference.
I do get the Neulasta shot. I don't experience any significant side effects, and I had too much trouble with my white cell counts during A/C that I don't want to risk it when I am so close to the finish line.
p.s. I am getting a fairly distinct layer of peach fuzz on my head. It may not be growing a lot, but at least it isn't falling out anymore!
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Zorina: how often and when do you drink the tonic water? Do you think diet would be ok? You are so lucky the Nuelasta shot doesn't bother you. I'm glad I don't have to have it during Taxol. Kicked my butt!
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My tx is on Mondays and my best days are sat and Sunday. I actually felt really good today (Tuesday) so who knows if that will continue next week too. I had aches and pains on wed last week and I was really tired on Thursday and Friday. I am glad it is all pretty mild in comparison to the roller coaster of AC. I hate tonic water but I will try anything if it relieves pain somewhere... I've just had to take advil for anything pain related. I am not normal though, I have a freakishly high threshold for pain. Or maybe I can contribute that to my stubbornness
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Skigirl -- I admire you if you can make it to the gym. It seems that if I do anything extra that I pay for it with severe muscle pain a little later in the day. I love to exercise and have my own little gym. My normal routine was up at 4:30 am to work out. I have really missed that as I've done nothing since starting chemo. Well I've done a little yoga since being on Taxol but even that seems to make my back hurt.
This week after #11has been my worst week on Taxol. I have felt pretty bad all week, but tomorrow is the last one. I have an appointment with my RO on Monday. Looking forward to getting a start and end date for this last leg of treatment.
Hope everyone has a good day.0 -
Tonic water has a pain reliever in it that diet tonic water does not. quinine <sp>
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Didn't know that about tonic water - do our oncologists know about this? They should!!
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Thanks Mareluna: Guess I will have to take the calories!
I am day 8 of Taxol #1 of 4. I felt good yesterday. I went to work today for 7 hours and my plan was to go to the gym after but I just couldn't do it. I came home and I am going to take a nap. I still have some aches that come and go. I'll have none at all and feel fine and then they will just come from nowhere for no apparent reason. I did run yesterday but I don't have that kind of ache. Is this normal with Taxol? Will it get worse with each tx? Thanks!
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ywheels - yes, that is the way it is with taxol - at least for me - the pains and aches were so random and came at the oddest moments. It didn't get progressively worse for me with each treatment - it got easier. Hang in there. Rest when you need it. It is quite the journey!!
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Ywheels, right behind you on Day 7 of #1. Felt better yesterday, then had flare up of leg pain in the evening. So far so good today. You actually went for a run? Man, I can't even seem to make myself go for a walk, but maybe it's time to push it a bit - definitely more of a possibility today than it was yesterday - felt like my knees were buckling last night.
Adagio, so relieved to hear that it gets easier!
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