Topic: Weekly Taxol group

Mar 21, 2020 03:57PM ARmom4 wrote:

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.

Mar 21, 2020 05:20PM moth wrote:

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!

Mar 27, 2020 08:59PM ARmom4 wrote:

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!

Mar 31, 2020 01:39PM ARmom4 wrote:

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?

Apr 1, 2020 07:20AM RadQueen wrote:

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

Apr 1, 2020 08:09PM ARmom4 wrote:

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?

Apr 1, 2020 11:34PM moth wrote:

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.

Apr 3, 2020 06:00PM moth wrote:

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!

Apr 4, 2020 11:59PM jelloelloello wrote:

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.

Apr 7, 2020 01:49AM Annie60 wrote:

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

Apr 7, 2020 08:56AM PatinMN wrote:

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

Apr 12, 2020 12:10AM ARmom4 wrote:

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...

Apr 15, 2020 03:48PM ARmom4 wrote:

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.

Apr 20, 2020 02:01PM Annie60 wrote:

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

Apr 21, 2020 04:14PM UnrealTarHeel wrote:

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.