Weekly Taxol group
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Volleyballmom
I had leg cramps from the steroids, so it was usually the first night for me. Infusion on Mondays, Tuesday and Wednesday felt pretty good, then Thursday didn’t feel as great, Friday was a sleep/rest all day, didn’t have any energy, didn’t feel great, but then Saturday was moving back up and feeling better each day till next infusion.
Also had diarrhea thru all of Taxol..no matter what I ate...Imodium was my friend. Good luck
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Good morning ladies,
I came back here to find my friends who I started with from the beginning. Don’t like that we’re at different stages of this journey now. But difficult leaving you guys behind.
Thank you Hairry for the lotion tip, I will definitely follow what you said.
Moth I had my last taxol July 11th and I’m just starting to get my taste buds and sense of smell back. Feels good to taste some things.
The sweets well that urge for constant sweets went away and I’m losing weight which is good because I gained during taxol. I am not a sweet eater so that was weird for others to see me has a sugar monster.
Had my left mastectomy with axillary direction on the 10th. It’s a relief to have had it done, but also feels surreal. The pain is controlled with oxy, but I am trying not to take it. They gave me some other non narcotic pain Med so I’m sticking now to that mostly. The drains are a big pai. And I can’t wait to get them out and feel free. 21st I go for follow up and get my pathology report. That’s atvyhe top of my mind now and then rads start in 6 weeks.
Ingerp I thought you’d be finished with chemo. Maybe you are unless I missed that post. Hope your neuropathy has improved greatly.
Hang in there ladies. Surprisingly now that the surgery is done it’s sort of a relief. The pain isn’t that bad, although I have a high threshold for pain, I’d say it’s doable. The numbness is strange. Can touch but can’t feel any touch on chest and down underarm.
Can’t believe how fast the months have past.
Good luck and I’ll be back
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Hello idkidk! Yes--my last Taxol was 8/3. Had my first Herceptin only 8/10 and will start rads 8/20. I've never had much neuropathy--just a little on my feet and I expect it'll get slowly better over time. Glad to hear the sweets craving went away. I'm *trying* to get back to the diet/gym schedule I was on before tx, but it's really only been a couple of days. Wishing you speedy healing!!
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idkidk - glad you checked in & the surgery went well. Happy to hear you're managing your pain ok and not in too much discomfort. Fingers crossed for clean patho & smooth sailing from here on.
I'm well -starting rads today so I'll be yakking on the Aug rads thread. My sense of taste & smell continue to improve, as does my energy level. I'm out of shape (I discovered this while trying to do a Zumba song with lots of squats yesterday) but that's just a matter of some time and sweat.
My hair is growing lots. It's fine & thin & a lot of it is white so lots of scalp showing still but it's getting long - a centimeter maybe already. It's just getting to the stage where I can sort of smooth it down rather than it all sticking straight out of my head lol0 -
Volleyballmom2008 , sorry to hear it's been rough! I can't speak to the leg cramps, but I have had digestive problems. It took me a little while to realize I'd become lactose intolerant on the Taxol, and recognizing that solved a lot of issues -- heartburn and stomach pain and an array of gross bodily processes. Also helpful: bananas and oatmeal.
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4 more to go! Woo Hoo!
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Hang in there, JackyR. You will get through it!
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Thanks Ingerp! I had my first appointment with my RO so I'm glad to moving forward and away from chemo.
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Volleyball - I saw this question from a few weeks back - My MO (NYU/Perlmutter) also does Taxol before AC - apparently there is some evidence suggesting it might be a good idea ointing in that direction and the whole of the NYU practice now does it this way.
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Thank you, pcranky. So far today was my 3rd taxol. Feeling great. Only week 1 had a few issues. Only problem I see is when I get home from my treatment on a Thursday I can not stop eating. Omg. I have cleaned the fridge out again. I guess it is the steriods?
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Volleyballmom that's definitely the steroids, although I found after the first couple of Taxols that I didn't notice the side effects of the steroids any more--wasn't overly hungry, could sleep, . . . . It's like my body got used to it.
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Hi ,
Zometa causes bone pain. Lasttime I had it with Taxol i took advil 4x that day and the next only 200mg.as I have liver mets. I am going for Zometa only next week so I can take advil. I had chemo on wednesday and can´t being tking advil along with having nausea and week stomah. Would rather make an extra trip and have blood work first then just Zometa.
Raven
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Volleyballmom2008 Ha, yes, I was hungry while they were adding the steroids. But they stopped them, and the benedryl, after the second round. I've had a very easy time except for the week my blood cell counts got really low, and then a bunch of other side effects cropped up until the cell counts rose again. So don't be dismayed if you get a few more side effects in a week or two, they may well be temporary.
Also, on just one single morning, it looked like someone had filled in the semi-circles under my eyes with a magenta highlighter. Like a really, really bad fashion statement.
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Thank you all for your responses. They haven't said how long for steroids. I am doing 12 rounds weekly of taxol then 4 rounds of a/c every other week. Every morning I feel I wake up looking for something new, but I thank God so far, all though only 3 rounds so far and feel good.
I hear a lot about issues w hands and feet. Is there anyway to help with that or try to prolong it, as far as adding walking to my exercise.
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My steroid & antihistamine stayed the same for all 12 treatments but some MOs drop the steroid. (btw, during AC my protocol had way more steroids so the steroid effect & the subsequent crash were much more evident during AC than Taxol)
To prevent neuropathy in hands and feet from Taxol you would need to ice during treatment. Here are 2 recent studies showing a benefit to cold therapy during paclitaxel. I waited until I started feeling the faintest numbness and tingling and started icing then (I think it was #7 IIRC), but some people ice from the start.https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6007752/pdf/djx178.pdf
http://www.sciedu.ca/journal/index.php/jst/article/viewFile/9340/5863
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I started icing with Taxol #1. I just had #4 yesterday and I've had a very slight tingling in both feet the night of my Tx all 4 times. I did start using Biofreeze on my feet those nights. No problems in my hands yet (fingers crossed, LOL!) I'm also taking 100mg B6 daily, but the MO said it could be B6 or B Complex.
I'm using these products to ice hands and feet during infusions:
NatraCure Cold Therapy Socks - bought extra inserts to switch out @ 30 minutes.
CryoMax Cold Pack - it has a velcro strap that I use to make a muff to stick my hands into. I bought cotton gloves to wear because the first week it was way TOO cold on my hands.
As for the steroids, I had way worse steroid effect and crash with AC. Rash included. Not so much with Taxol, although I don't drink any coffee the day of and day after Tx because I'm so wide awake!
Good luck, @volleyballmom2008!
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It's all so varied. I am on Taxol #9, and no neuropathy despite no precautions -- but I have to take bio-K everyday to digest anything at all. I'm glad they've developed this medicine, yet I still feel a bit like we are all guinea pigs.
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I made a point to wear sandals to tx and didn’t use any blankets. I figured I’d just try to keep my body cool, particularly my hands and feet. I’m three weeks out from my last Taxol and have a tiny bit of numbness on the bottom of my feet but that’s it. Never had any problems with my hands
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Hi all. I'm new here. Still in the disbelief fog. So it's taken a lot for me to even register on this site. I'm sure I did not do the signature correctly.... But hopefully you get the gist! If not, pasting it here:
Dx 6/20/2018, DCIS/IDC, Left, 7mmx5mm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2+ Surgery 7/20/2018 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 9/5/2018 Taxol
I start 12 weeks of taxol on 9/5. My main questions are:
> Will I be able to go through all this without it being obvious to the outside world? I work from home, so that helps. I just really hate to be felt sorry for, and hate to be the center of attention, and so do not want my friends setting up meal trains and who knows what. I just want to get past it and put it behind me. Basically, I want my life to stay the same. Crazy, I know. Doing the cold cap, so hopefully that works.
> Am I going to be laying in bed all the time, gaining weight, feeling awful? It's so hard because I feel GREAT, and here I am going in for treatments that will make me feel awful. I never get sick, I'm super type-a, I have two middle school boys that have tons of places they need to be outside of school hours. I'm fit, active.... will this help me be able to keep up with all this? Or it's going to take me down, no matter what?
I'm terrified, mostly of trying to hide it from friends, and if I will be able to keep up. SOS.
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umakemehappy
I wouldn’t try to hide it...you’re going to want help with running your kids to activities or a meal for them when you don’t feel like cooking. It doesn’t mean you’re weak..it just means you’re letting family and friends show their love for you by being able to help...don’t deny them that opportunity. The first 5 weeks I felt pretty good, 2 days of needing to rest and do nothing each week, but it’s cumulative so week 6 forward was harder and more days of not functioning...BUT everyone is different! Good luck
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Umakemehapp
I know how you feel. I always take care of everyone. I just finish my 6 Taxol and I am starting to feel like I am running out of steam. I pick up my grandson from school every day. I work from home also . I have lost my sense of taste and the leg and bone pain is driving me crazy. I am not used to asking for help but I am needing it. My hubby bless his heart said to tell everyone I'm done. But I just cant throw in the towel.
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I’m actually on Abraxane, which is a taxable, weekly. Am wondering if anyone had their doctor lower their dose and still had a good reaction on their cancer?
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llup
Let yourself rest, right now you have to concentrate on you! After chemo is done you will get your energy back! my doctor changed me to Abraxane at dose 9, then stopped it altogether due to the neuropathy pain in my surgery area. After a couple weeks I had some energy back and started to think life could be livable again, if only the pain would go away! And I’m working on that! Even started babysitting my 5 mo old grandson 2 days a week! Take care of you right now, and be sure to tell your MO how bad your bone pain is, maybe they can give you something different to help!
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Hi, umakemehappy - it varies a lot, but I've worked nearly full time through week 9 of Taxol (#9 was yesterday). I haven't gained weight and am still going to the gym on my good weeks, and taken my dog to play frisbee even on my worst days. Though I do have to be careful not to overdo it.
I have lost most of my hair (I'm doing AC after taxol, so cold capping didn't seem worth while). But people really don't seem to take that in... to give you some idea, I have worn a hat or scarf to the office for the last 6 weeks. Yesterday I wore a wig for the first time, and several people asked me if I had cut my hair. Too, too funny. But yes, it's possible it will only be obvious to people you are close to!That said, it's good to talk to your friends. And to get help when you need it. You would probably want to know and offer help if one of them was ill, and there were easy things you could do to make their life easier, y'know? Just having someone come to the infusions and chat is a really nice reminder of the fact normal life is still out there, and you'll be going back to it.
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Hi Yellowb,
I'm starting in September andI see you are at Perlmutter and I'm starting AC-T at Perlmutter on the fourth (or as they do it at NYU T-AC)
I am trying to figure out what to bring with me and what they are likely to have there (eg., i was going to buy ice packs for my hands and feet but my MO mentioned at my last appt that they would be icing my hands and feet). I want to make sure i'm adequately prepared but I don't want to buy and show up with a whole bunch of stuff they already have on hand. Any guidance you can give me will be greatly appreciated.
Also, I'm super glad to see someone else going there. I really like them!
Your posts are giving me hope that at least the first 12 weeks will be doable.
Thanks
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pcranky - I suggest you ask for a tour of the chemo area. Things to look for -
Do they help, encourage, or discourage icing? Do you want to do it if they do? My center never gave us that option although I don't think I would have done it.
Will you be in a private or semi-private area or a large ward-type setting. Mine was pretty wide open. Plus is that nurses are more on top of what's going on. With a private room, bringing a support person will be easier and they will be more comfortable. Icing will also be easier. I have a friend who always had several friends come in and bring her lunch. Wouldn't have worked where I was.
What is available in the way of food and drink? Some places provide lunch/healthy snacks and some just machine junk food. I always took a bottle of water and a snack (fruit and an energy bar).
How long should my treatment take each week? Some places do blood draws ahead. Mine didn't and it probably added another 30 minutes to my time there. They don't order the drugs until they have seen your blood work. I also saw either my MO or her PA every time I went which added to the time an infusion took.
What is the temperature of the room? Does the center provide pillows and blankets or do you need to bring your own. I always took a zip-up sweat shirt and wore sweat pants.
Do you need/want a port? I am very glad I got one. I'm a relatively hard stick and the port was used for blood draws as well as accessing chemo. If you are just doing taxol, no port may be OK but if also herceptin, at least think about it. If you are getting a port, I strongly recommend that there be at least week between port insertion and first chemo.
What do people do to stay distracted? The benedryl may make you sleepy or the steroids may make you a little hyper so plan to take something to do. Most centers now have wi-fi for your devices. I always took my kindle and could tune things out. Others bring headphones to listen/watch music or movies. Some bring laptops and are able to do a little work. My biggest complaint about the large room setting is that they had several TV's on all the time. I got very tired of hearing how to "flip a house."
Stay close to the people here. "We've been there and done that!"
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Thank you Taco!
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Hey, pcranky! So glad you find my posts encouraging! If you end up going on Friday afternoons, we'll have to stumble around the ward looking for each other, by pseudonymous handles, IV's in tow.
I get my infusions on the 5th floor, and if you are there, they have: a little kitchen with some minor snacks and hot and cold drinks; heated blankets; short therapuetic massages; and nutritionist available to answer questions. There are individual tvs. It's not a room with multiple patients, as I've heard about elsewhere; there are individual curtained rooms. You can have someone come with you. It's also pretty fast, at least for my particular treatments -- I think the longest I've been there was about 2 hours, and that was the first time when there were a lot of additional medications (benedryl and steroids and pepcid). Now I just get the pepcid, and I'm sometimes in and out in an hour. Also, I really like my nurses.
I hope that helps! Let me know if you have other specific questions.
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Hey, pcranky! So glad you find my posts encouraging! If you end up going on Friday afternoons, we'll have to stumble around the ward looking for each other, by pseudonymous handles, IV's in tow.
I get my infusions on the 5th floor, and if you are there, they have: a little kitchen with some minor snacks and hot and cold drinks; heated blankets; short therapuetic massages; and nutritionist available to answer questions. There are individual tvs. It's not a room with multiple patients, as I've heard about elsewhere; there are individual curtained rooms. You can have someone come with you. It's also pretty fast, at least for my particular treatments -- I think the longest I've been there was about 2 hours, and that was the first time when there were a lot of additional medications (benedryl and steroids and pepcid). Now I just get the pepcid, and I'm sometimes in and out in an hour. Also, I really like my nurses.
I hope that helps! Let me know if you have other specific questions.
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Thank you so much yellowb
They generally think of everything it seems. I've been happy with all my docs so far.
I think i'll be on 6, on Tuesday, but if i'm ever in on Friday I'll wander down.
Just one more.. they mentioned I would be doing hand and foot icing, I assume this means that they provide it (i know that other people have had to bring their own icing stuff to other places)?
Thanks so much for your help - and I really do find your posts encouraging. Plus its nice to find someone else where I am.!
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