Weekly Taxol group
Comments
-
Joining this thread because I found out yesterday that I'll start Taxol + Herceptin next Friday. I'm really nervous about it! I'm a mom of 4 (the youngest is 4) and worried about being able to care for them. Oh, and COVID-19. Worst time for chemo!
moth: Sorry you're going through this again. I was told to start glutamine but nothing was mentioned about B6. Also, nothing was mentioned about iceing (is it iceing or icing like a cake?) either. I guess I'll learn about that at my first infusion.
0 -
moth, I’m so sorry you are dealing with stage 4. Back in 2012 when I did weekly taxol, I used B6 (100 mg per day) and l-glutamine (30 grams per day, divided into two or three “servings” and mixed with the liquid of your choice). I did the l-glutamine for four days of each weekly cycle—the day of chemo and three subsequent days. I took B6 every day. It seemed to work for me. No one was icing back then that I was aware of. There is no way I would have iced, because I was doing cold caps to save my hair and that was enough freezing for me!
0 -
ARMom - not all centers are utd on icing feet and toes. In 2018 mine said "oh that's just for taxotere not taxol and it's only for hands to protect your nails! "I was the only person doing it for neuropathy at my center afaik. Somewhere i have 2 published small rct showing it was effective for neuropathy prevention on taxol. I'll have to look for them.
Even the expert podcast on neuropathy in the main chemo page here on bc.org is kind of wiffly about recommending it. So don't be surprised if nobody mentions it and if you decide to do it, it will be all on your own initiative.
PatinMN, thank you for sharing your dosages! That helps get me started!
0 -
moth.. I iced my hands and feet the whole time with the AC and T chemo and I have had no neuropathy, or nail bed changes or lifting. I had my 12th and last Taxol Monday so I'm done. Then nurses at the infusion center didn't even know about iceing. I also thought about cold capping but that is a lot of work and doesn't always work, so I gave up on that idea. The most important thing Is drinking water. Every infusion day I would drink at least 2lt of water before infusion and eight oz of water every hour once I got home till bed time. I never had any major SE, I really fell the water was the key. On the 3rd day I would do a episom salt soak for at least 45 min to an hour. Read up what it does it helps to detoxify the cells in your body.
Be strong everyone and stay safe....
0 -
Well, had my first infusion today of Taxol + Herceptin. I had a reaction to the Emend (nausea meds). So they switched to another. The Hercpetin went fine. Then came the Taxol. Had a reaction so they stopped it and flushed the lines. Then gave me more steroids. Once I recovered from the reaction we started the Taxol again, this time very very slowly. Luckily no reaction. So, what was supposed to take 3 hours ended up taking 6 hours. And I couldn't even finish because they were closing! The nurse said I should expect each infusion to be this long. What a crazy day!
0 -
Moth, you said on another thread that you were crying a lot. There is plenty to cry about. But I did want to mention that the pre-med steroids can mess with a person's emotions. When I had been on taxol for a while, I started having crying jags. There would be something that upset me and then I could not stop crying. So if you think the dexa is affecting you this way you can see if your onc thinks it would be safe to lower the dose and/or use an alternative med. Or maybe just knowing what is going on will help you cope.
0 -
I've also had a couple crying episodes. My emotions are all over the place.
I wanted to ask you all about your mouth side effects. The roof of my mouth feels really sensitive/sore. There's a bunch of tiny bumps but they're not like open sores. It hurts a little when I swallow but not my throat. I know mouth sores are a side effect but this isn't sores. Anybody have this?
0 -
ARmom4 - I'm from Arkansas, also! I finished T last May. I still have horrible neuropathy in my hands and feet and have to take meds for the pain. My MO acted like icing was weird and would not help anything so I didn't ice. Ice!! Do what ever you can to keep from getting neuropathy, If I can help in anyway, I would be glad to. Do you have any help at home? This is an amazing place! So many people to help you through this.
As for your mouth, I used Colgate Peroxyl. It helped so much. Please let me know how you are.
Annie
0 -
Greetings all the steroids they give you for the Taxol are nothing nice. They would give me IV Predisone before the Taxol and by week 3 it had built up so much in my system that I too would have the emotional swings. Mine were not so much as crying but anger. I really do believe in roid-rage now. The day after infusion my hubbie would ask me a question and sometimes I would just go off on him, to the point where he would just go hide out in his work shed, to keep away from me. He knew it wasn't my fault but he would still go hide. I'd feel bad about yelling at him I just could not help it. It was always worst the day after infusion. Hopefully that's all behind me now.
For the mouth sores I was told the salt and baking soda rinse works well. I know it's hard but try to get more water down. My MO believes that was the key to me not getting the worst SE's.
My MO also did not say anything about icing, I found out about it from all the research I did. They all can't know everything. Sometimes you have to be proactive.
Blessings to all
0 -
ARmom4- it seems like most places don’t know or push the icing of hands & feet. I learned about it from a friend and it made all the difference. I had no neuropathy. I also chewed ice during the taxol infusion. This helps reduce mouth sores and also rinsing with baking soda & water a few times a day. As for the emotional/crying, I believe it is a combo of steroids and taxol. I had to take oral prednisone for a few days after infusion day because of a rash I would get.
I hope all of you are holding up in this crazy time. It will be my one year since diagnosis on Friday. Not sure how emotional I will be...anyway much love and best wishes to you all.0 -
Annie: Hi fellow Arkansan! I do have my husband and 4 kids at home to help. Plus my mom whenever I need her. Thanks for askin! I've been taking glutamine for neuropathy. As for mouth pain, not too bad today but I'm brushing a lot and gargling salt water.
RadQueen: I've been really angry too. It's not helping that I'm actively quitting smoking. I'm down to 2 cigarettes a day and I'm pretty pissed most of the time. I know it will pass once the cravings subside. So that's not helping the roid-rage at all!
ByUmom2: Do I need to ice and chew ice during the infusion? Can it wait til I get home afterwards?
0 -
ARmom4 - I chewed on ice during the entire infusion of taxol. I started the ice on hands & feet starting 15 minutes before taxol. 15 minutes on ice and 15 minutes off throughout the infusion. I placed hand in disposable gloves then inside ziplock bags that had frozen chiropractic gel pack. Would just lay my hands on them. For my feet I would put a thin pair of socks on then wrap a gel pack around my toes/feet and then put a very stretchy sock over that to hold in place. My mom would place on my feet for me. She was a enormous help! It is rough...but definitely worth it. The first 15 minutes is the worst. I usually did 3 times of ice on over the 60 minute infusion. Did one or two more 15 minute icings the first couple of weeks when my infusion time was slower. Hope this info helps. Glad to relay any info I can. Let me know if you have any other questions I might help with.0 -
ARmom if you're going to ice it has to be during the treatment. Ideally start a few minutes early - during premeds for ex.- and end a bit later. I just wait for the flush to end and stop. The idea is to cool the skin a bit during the treatment so the blood vessels there contract and the taxol doesn't quite get there. That prevents damage to the little tendrils of nerves which end there (and which are fed by that blood supply) by not exposing them to as much taxol. Cold capping works the same - reduced blood flow to the follicle protects it. Icing later won't help prevent neuropathy.
everyone, thx for sharing about the steroids and emotions! Helps me very much!
I'm icing toes now essentially same as ByUmom2 but with a tweak. First time in 2018 I had dh help wrestle the oversocks on but now no helpers/visitors allowed so I needed to adapt so I thought I'd share this.
We cut off a men's gym sock at about the arch and folded the rectangular icepacks inside them. I wear thin socks, wiggle my feet into this toe sock+icepack , in beteeen the 2 layers of the ice pack, and then put the big oversock on. Without the "toe sock" step I was struggling to keep the icepacks in place properly while putting on the oversocks and they kept slipping out of place. Now I easily do it solo.
0 -
So, I had a reaction to Taxol again today. This one was worse than last time. My MO said no more. We're going to try Taxotere next time. If I have a reaction to that, we'll just do Herceptin only. Does anybody here have experience with Taxotere? Also, I read that the brand name Taxol, Abraxane, doesn't cause a reaction nearly as much. My insurance probably wouldn't pay for it because its way more expensive but maybe they would since we tried Taxol first. Anyone have similar experiences?
0 -
oh bummer, too bad ARmom4
Hope you're ok & it wasn't too scary for you!
I've not had any rxns to taxol but yes, it's true that Abraxane is known to cause less reactions. Definitely bring it up with your doctor and given that you cannot take taxol, it should be an alternative for you!0 -
Hey everyone!
I am currently on my 3rd of 12 weekly Taxol treatments The first infusion went perfect, no issues or reactions. The second infusion, I had a pretty severe reaction.....saw stars, vision went in and out, felt like an elephant was sitting on my chest, and blood pressure skyrocketed. It was pretty scary! They doubled up on Benadryl and more steroids, waited half and hour, then began the infusion again on a slower drip. After half an hour, they brought the drip back up to normal. No further issues.
At the third infusion, it happened again. Same reaction. They did the same process and again, no further issues.
My oncologist told me that on my next infusion, they will do the slowest drip possible, so 3 hours instead of 1. She hopes that doing it that way, will prevent another reaction. The downside is that I will have to ice my hands and feet for three hours!!! Good Lord, 1 hour is hard enough, I can hardly imagine doing it for 3!
Anyway, I was wondering if anyone else had a similar experience?? Any advice or tips?0 -
Hi! I’m 43 years old, Stage 3. I just had my first ever chemo day on Thursday (April 2)— 1st of 12 weekly Taxol infusions (4 cycles split into 12 sessions). I had dexamethasone (steroid) and benadryl for my pre-meds. I didn’t have any reactions and felt pretty good during and afterwards!
I didn’t do any icing (hands, feet or head) because my oncologist felt that it would be unlikely I would get neuropathy, other than a tingling feeling in my fingers later on in the cycle that would probably go away on its own. This forum made me feel kinda nervous about it, but well, there I was just showing up for chemo totally unprepared! Honestly, while part of me wants to read up on tips and do my own research, I am cutting myself some slack because it’s a little overwhelming right now- kind of a stressful period with everything that’s going on. It’s also very frustrating to read about something and want to get it, but then it’s impossible to find because of the state-wide lockdown and lack of available goods due to the Coronavirus crisis. I had to have a family member from another state mail me a few medical-grade masks and Tylenol, and two other people track down some cleaning products and sanitizer for me because everything has been impossible to find in stores or order online since early March in my city.
It was lonely in the treatment center (no visitors due to COVID-19) but my nurse was awesome and only had two others patients so he was able to spend a lot of time with me. It was nice to get to know him because he’ll probably be taking care of me every time, which was super comforting to find out.
Today is Day 3 and I still feel ok! Barely slept the first night (heard the steroids keep you up), but otherwise, I’m eating and sleeping ok now. A little tired, a little bloated, I feel heavy, and my neck is pretty sore (maybe lymph node tenderness?), but that’s it. Wanted to leave this post here as an example of mild-to-no side effects, and to offer some hope to newbies that the beginning of chemo might not be that bad! Who knows what the future will bring, but I’m taking it day by day, and today was basically a good day.
0 -
jelloello - I first did taxol in 2018 and didn't start getting tingling till about dose 6 & then started icing. Too many people here reported their neuropathy was permanent. I got scared. Mine didn't progress after I started icing and a couple months later was gone.
All this to say that you could choose to wait till later to start icing if that's what ends up working better for you. And many don't ice at all and are fine . So hard to tell who will have what symptoms
0 -
etnasgrl- I had bad reactions to taxol. I took lorazepam before I left home and was given more at the center. It helps with muscle spasms. My whole body felt like it was in spasm. This really helped
0 -
jelloelliello- it is 1:00 in the morning and I can’t sleep because the neuropathy in my feet is so bad- burning and hurting like someone has my toes in the grip of a hot vice. I didn’t ice - my MO thought it was silly. I would ice if I could do it over. It will be a year in May since my last taxol treatment. This is miserable.
0 -
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6498091/ Annie60, I’ve linked an article about the effects of acetyl l carnitine on neuropathy. I developed a numb big toe shortly after finishing weekly taxol. It eventually improved, then came back. I researched and then started taking acetyl l carnitine. It has stopped any further neuropathy, whether it’s caused by the taxol or by the big bunion on that foot. I get it at Amazon and take three 500 mg capsules a day. It doesn’t work instantaneously—if you decide to try it, give it a couple months to see if it helps
0 -
ARmom4- sorry to hear you had another reaction. Must be so frustrating. Think you should push for the Abraxane. Keep us posted and good luck!
etnasgrl- Wow, I sure hope things get better. I can only imagine how hard it is going to be to ice for 3 hours! Ouch!! I struggled doing the ice for a one hour infusion. Please keep us posted. Take care!
jelloelloello- I think you will have to decide what is best for you regarding icing. I did it, and am so glad I did. It isn’t easy, but didn’t want any neuropathy if I could help it. I also painted my nails with a clear nail hardener to try to minimize nails coming off. They did get sensitive towards the end of twelve weeks. I had a toenail that partially lifted off nail bed. But the nail was in poor shape to begin with. Actually happened after I had completed all the Taxol. I am sorry you are having to sit thru infusions alone. We are already struggling with so many emotions and to have to go in by yourself makes it that much tougher. I have gone in by myself for my past two Herceptin infusions. I was spoiled having my husband with me. I am glad that my Herceptin only runs for 30 minutes so I am usually in there alone for about an hour. Good Luck and take care!0 -
ByUmom2: My insurance will only cover Abraxane for Mets. We'll try Taxotere next week. I will take premeds the day before and the day of. The pharmacist was telling me about a method they might try where they dilute it more when they infuse it so it's tolerated better. We shall see...
0 -
ARmom4 - what premeds will you be taking? I'm so sorry. How slow are they running the drip? What part of the state - north, southwest..... do you live? I'm sure your MO is going to take it slow and help you through this. Hang in there! We are praying!
Annie
0 -
Annie60: They infused the Taxol as slow as the machine would let them and I still reacted. For the Taxotere I have to take Dexamethasone tomorrow, Friday (day of infusion) and Saturday. We didn't start last week because he wants me taking it the day before chemo. We think I might react to the Taxotere too because it uses the same solvent as Emend (which I also had a reaction to). Hopefully not though.
I live 30mins northeast of Little Rock, which is right in the middle of the state. My MO is great. He's working with the pharmacist to come up with a plan to avoid a reaction. They mentioned something about infusing it with more saline to dilute it and trick my body into accepting it. If I react to that, he wants to just go with Herceptin alone. I don't really know how I feel about that.
0 -
If any of you have friends in the medical field or a lab. The bags they use for specimens are great for icing. They have a zip-lock part with a open pocket on the front. If you fill them with ice you can slip the pocket part right over your feet, and your hands slide right in. If you don't have connections, ask the phlebotomist where you get your blood drawn. They might give you 4. I used them for all of my Taxol treatments and I had no neuropathy, no nail lifting or nail discoloration. Also I would make them let my husband in just long enough to set me up with ice and then he would have to go. I'm sure the nurses would have done it but it was just easier for him to do it as he knew what he had to do and was quick. I found that a lot of the nurses did not even know about icing. He wore a mask and only interacted with me. Also on my last day of Chemo they weren't going to let him in. OH NO he was going to see me ring that BELL !!! He has been with me all through this and my support system. He was going to see me ring that bell. Guess what they let him in. The only sad part was that I was not able to hug the nurses, they were truly great through all of this.
Keep the faith ladies.
0 -
ARmom4 - I am about an hour southwest of Little Rock. I sure hope they can work this out. I'm glad you have a good MO. I really like mine. Let me know how you are. I know how frustrating it is to need something but that something feels like it's trying to kill you. My MO called me the poster child for SE's. I had a reaction to Perjeta, also, which shocked everyone. The nurses had never seen a reaction to P. The slower drip and lorazepam helped. Taking lorazepam before I got there, then being given more while I was there, I slept through the entire treatment and do not even remember leaving the facility. I am so glad my husband could be with me.
Annie
0 -
Annie60: I'm up in Beebe. Strange about reactions. I've never been allergic or had reactions to things. It's like it came out of nowhere.
No reaction to the Taxotere! Woo hoo! Everything went well Friday and SEs have been mild. Mostly just tired and my body's sore. More heartburn than nausea. Overall, not too bad.
Does chemo or Herceptin cause breakouts? I'm breaking out all around my nose for some reason.
0 -
Hi, all. I'll be joining the weekly Taxol club 3 weeks from today. Trying to read through past posts to know what to expect, and am alternately reassured and terrified. Goes with the way I've been feeling -- alternately resigned and freaking out. Trying especially to piece together all of the advice about icing hands and feet. I rot at DIY projects even in good circumstances. Bought a couple of large and a couple of smaller cryomax pads, which seem to be the least messy way to keep very cold? Have been told the ice machine at the infusion center has been decommissioned due to COVID. If you have/had a successful routine, would love to know about it, along with anything else you wish you had known or done before starting.
0 -
Welcome Unreal TarHeel--I'm a Hoo!! I have no tips for you re: icing--I didn't bother. I took myself to all of my chemo appointments and wanted my hands free to read/play on my phone/. . . The one thing I did do was dress pretty coolly--always open-toed shoes and light clothing--and said no thank you to the warming blankets that were offered. I figured if the point of icing was to keep the limbs cool, I could do a bit of that just with the way I dressed. I had minimal neuropathy--just a bit on the bottoms of my feet, which has all resolved at this point.
0
