Weekly Taxol for Stage 4
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I'm hoping that I don't develop any mouth sores because I had them with AC years ago and they were about the most miserable thing that I could imagine. And I hate magic mouthwash! Did any of you start swishing with a baking soda rinse before you got mouth sores as a preventative or did you wait until he started showing signs of getting them?
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I didn’t have any problem with mouse sores at all.
I was supposed to be put on Taxotere before they knew I was Stage IV and for that I was advised to get Biotene mouthwash because dryness could be a problem.
But I wound up on Taxol instead and my nurse told me the mouth issues would be less of a problem.
Taxotere tends be harsher than Taxol in several ways, the mouth problems being one of them
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Thanks!
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I got mouth sores
around month 5 Could be i was sloppy on prevention. I'm a snacker...
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Hi ladies ,
while I am not on Taxol but instead Eribulin...I am posting here bc I "Think" I may have the start of neuropathy
I tried to do a search for a thread just on that but didn't see one? I do Ice 15 prior to treatment and 15 min after but my infusion itself is only 15 min . I am experiencing some pins and needles that come and go...it literally just started last night....the reason why I am NOT sure it's that is bc I just found out last month that I have mets to C7 and they asked if I ever have tingling and numbness or pain there and I didn't.... I will admit, and I don't know if this can contribute to neuropathy I have been taking alot of hot baths to relax....can the heat to it or cause it?PS: Katy I didn't know you moved on from Xeloda...
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Nicole, I have never heard of hot baths contributing to neuropathy. I think a good physio, ortho specialist or registered massage therapist can work out if your tingling is caused by C7 impinging a nerve or neuropathy. I think classic C7 impingement is tingling in palm, index or middle. There's a different nerve for the pinkies and ring. Is it both hands or one?
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Well I read on line that HOT baths are a NO NO and can contribute to it or make it worse..and I stopped the bath and sauna and it stopped now? But who knows...bc this past week was my off week...so that could be why it subsided I just had my infusion today...
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Nicole,
I iced 30 minutes prior to and 30 minutes post infusion. After almost a year of Taxol, I started to get the pins and needle feeling in my feet and when it first began it would come and go. I even iced at home post infusion. I believe the cold prevents the blood from pooling in the feet/hands. I think that’s what contributes to the Taxol damaging the nerves in the hands and feet. So while I don’t know if the hot baths will make it better or worse, it might be possible that the heat will cause your blood/chemo to linger in your hands/feet longer contributing to nerve damage? This is purely speculation on my part though, but I figure this is why icing is suggested to help prevent neuropathy?
As I continued Taxol I started to have some numb areas on my feet, but thankfully it does not interfere with my walking/running. I stopped Taxol 8 months ago, after 17 months on it, and I’m sad to say that the neuropathy has not gotten better at all, but has remained the same. I’m thankful it doesn’t stop me from being able to walk/run but I’m sad that it’s just another thing I have to learn to live with.
You mentioned mets the the C7 area, so is it your hand/hands that are affected? Or your feet too?
PB
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Interesting! I've only heard of being careful with heat and neuropathy because people can't feel that they're damaging their skin
Maybe it was just a fluke symptom for you and has gone away for good. Hope so!0 -
Moth...maybe yea...I am not sure...
Pboi...it was my fingers and feet..
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I have Taxol for three weeks and then one week off. I’ve had 6 infusions and this is my week off. I was expecting to feel great this week but I don’t. Yesterday I spent the entire day cleaning the house and felt fine until the evening. Today I still feel lousy, slightly nauseous and feeling like I’m sick. Has anyone felt awful on their week off? Thanks!
Denis
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Denis, I did feel lousy at the beginning; super hard fatigue, no nausea tho. I think cycle 3 & 4 were my worst but I'm not 100% sure if it was taxol or my liver mets and tanking Hgb. I was whining about it at that time on this thread as I couldn't imagine staying on it for an extended time when I felt so shitty.
I did end up with a dose reduction because of the fatigue, elevated liver enzymes and falling WBCs. I've been feeling so much better now. Cycle 8 starts this Thursday. I just got back from a week long camping trip 500 km from home. I'm nowhere near my pre cancer energy or fitness but way better than a few months ago.
Hope things improve for you
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I've only had two Taxol infusions and so far my only problems have been some constipation , which I've gotten under control, and feeling like my feet are on fire, much like the hand foot syndrome on xeloda. I already have neuropathy from the xeloda so I'm keeping an eye on that too. I just ordered some socks with frozen gel packs and gloves with frozen packs for chemo days. I had a high level of fatigue and muscle aches while on xeloda so I don't know if it's amplified by the taxol yet or not. . My appetite is fair but I do have to push myself to eat enough, so I won't keep losing weight . In spite of this laundry list everything has been manageable so far
Hopefully that will be the case in the coming weeks but mainly I hope Taxol is getting her done and kicking some tumor ass!
Wishing everyone well this week!
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I couldn't take my third infusion yesterday because my WBC was too low, boo.
And I'm getting mouth sores...
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Kattysmith, I need grastofil to keep my WBCs up. I am doing 3 days of shots after my taxols and now preloading with 1 during my week off taxol because my counts were still low even during the break. And I'm on a reduced taxol! I like to think that this just means it's working super hard on me.
Hope you get a mouth rinse to fix the sores asap. Mine seem to be random. Last cycle I had none. But I keep a fresh bottle of the rinse in the fridge all the time now just in case
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I got some magic mouthwash from my sister-in-law who was using it for a bad canker sore she had and will get my prescription filled on Monday. I'm rinsing with baking soda numerous times a day, too.
I'm hoping that my WBC is back up next Friday!
Thanks Moth!
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I just had my first infusion today. I was not told that I should ice my hands and feet. I did have taxol in 2016 with my original diagnosis and I dont remember having issues. I am hoping this treatment will kick back the cancer. This is my fourth treatment since diagnosed mbc in June 2019. All other treatments failed with a little progression. So here's hoping for a long stint on taxol!
When should I expect hair loss. I heard after three treatments and I heard after three cycles. I want to be prepared with a wig. I know I shouldn't care but I hate when people can tell you have cancer. I went through that when first diagnosed. They just treat you so differently. Any wig advice?
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HI JJZN,
I just had my 4th infusion yesterday and I have to admit I have not started icing my hands or feet although I did buy some icing gloves and footies with ice pads. I plan to start using them next week, but we'll have to see how long I'm going to keep them on depending on comfort level. I already have some neuropathy from my 9 months on xeloda. I'm going to start taking some low doses of B vitamins (not sure how much yet) doing toe and finger exercises too.
I'm sorry to say that my hair loss started pretty quickly- between my second and third infusion. I got my hair buzzed really short in the hopes that maybe I could keep a light buzz, but apparently that ain't happening! I've lost my hair completely before and although I bought one wig at that time, they just aren't for me, so I'm sticking with scarves and caps.
I haven't had any nausea or diarrhea in fact I've had to stay ahead of constipation which is normal for me during chemo. My appetite and energy level have been low for quite some time but I haven't noticed any worsening. I just have to remind myself to eat little bits throughout the day to keep my weight stable.
After my second infusion my WBC dropped a little too low so I had to skip a week before I started back up on a slightly reduced dose and that seems to be working well.
All in all I'm finding taxol pretty easy to deal with and I hope you do too! Most of all I'm keeping my fingers crossed that it will work well for us all!
Keep us posted,
Katty
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JJZN - here are a couple of wig tips.
- Find out if your insurance covers a wig, then get a prescription from your MO for a “scalp prosthesis". You can then treat yourself to a fitting and a good wig at a shop...there are some shops that specialize in medical wigs that will help with insurance claims.
- I had past-shoulder length hair and I like long hair so I started before my hair fell out with a 3/4 longish wig (3/4 wig - formerly known as a fall...leaves the front of your hair uncovered) and headband. Inexpensive one. As my hair thinned, I put a folded bandana at the front as a headband to cover the hair line.
- Human hair wigs can be very beautiful and natural looking but they are expensive and can be hard to care for. You can get a human/synthetic blend or a very natural looking synthetic for less and it will withstand more washings and wearing without knotting up. I kept wearing wigs because I can't get used to short hair. I like less expensive wigs by Forever Young, Noriko etc because I don't feel bad if I wear them 8 or ten times then throw them away. Costs about what cut and color would cost.
- If you like watching YouTube videos, online wig store Cysterwigs reviews all the wigs she sells, this can give you great insights into styles and colors. Another good channel is Chaz's Wig Closet. Cysterwigs says they can provide what you need for insurance claims, too...I didn't use them but it's an option, especially in COVID times
I had (and still have) great fun with my wigs! Everyone said they didn't know I was wearing a wig...even my daughter in law thought I went to the salon for a cut, color and blow out when I changed wigs on vacation last year 😂Hoping Taxol treats you well and that you find a hair solution that works for you
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JJZN
Some reputable online wig vendors that I have ordered from are cysterwigs.com, wigstudio1.com and wigs.com. They all have different return policies, so look for their policies on their websites.
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Speaking of hair, mine started growing back about 16 weeks in! It's soft and thin very light - totally like my baby hair but it's growing back. MO reassured me it had nothing to do with effectiveness of the taxol (I'm dose reduced) & that some people just respond this way. It's about a centimeter long now - enough that I can't just totally ignore it and once in a while have to wet an area that has decided to stick up.
I have 2 wigs but haven't worn them this time around & only a handful of times last time. I might when it starts getting cold. I remember them being cozy and warm lol
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Last night I was watching an old PBS episode of Agatha Christie's Miss Marple series. A wealthy old man was murdered when someone loaded up his tea with poisonous Yew Tree leaves.
The coroner mentioned how poisonous the taxine found in the leaves and bark of the tree were.
That got me to thinking, and I went down the rabbit hole. The IV chemo that I started taking in September is known as a taxane, so I wondered if it had been originally derived from the Yew Tree and indeed it was! I read a fascinating article that I found about the history, development , clinical trials and uses in chemotherapy. Researchers here had to stop using the bark , because they were destroying too many trees , and began using the Yew leaves as they did in Europe instead .On top of that, the Yew Tree has enormous significance in Celtic lore, symbolizing longevity, rejuvenation, death and resurrection. It is often found planted in old graveyards in Great Britain.
Some of you probably already knew all of this, but if anyone is interested I will post the link to the article about the development of Yews into chemotherapy. Pharmacognosy has always been fascinating to me !
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Agree, Kattysmith, the development of the taxane chemos is fascinating! I like to say “I had natural, plant-based treatment” especially when I want to tweak someone who extols alternative treatment to me. 😂 But it is the truth...Taxol is plant derived.
The development was part of a huge project to test hundreds of plants to determine their use as medicine and, if I remember correctly, they found few (or no) other viable treatments. But, Taxol was a winner. A great innovation for those of us who have needed it.
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Well, now it's all synthesized anyway - so we're no longer killing trees for it. Oh & it's not just the bark vs needle difference, it was 2 different trees in play - the Pacific Yew and the European Yew.
It's fascinating and one of those things that makes me think about all the plants and fungi around the world, not even identified or classified yet, some already going or gone extinct. What great treatments are hiding in them? The Pacific Yew tree populations are still decreasing - it's "near threatened" Makes me want to go plant one, to say thanks for this drug.
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It is an amazing tree and I've spent the morning reading up on folklore surrounding it! Thankfully as you mentioned, they now synthesize it. A few years ago I took Etopocide, which is derived from the May Apple plant. It is commonly considered a weed which is a four-letter word in my vocabulary. I don't believe in weeds. : )
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I had my first taxol today. I had it in 2014 too, with no real problems. I was crocheting away, ten minutes into the drug,, when I started coughing and couldn't breathe. My O2sat went from 99 to 83 in less than a minute. I was beet red and just gasping for air. I was terrified. They put me on oxygen, gave me more steroids, and of course stopped the Taxol. Has this happened to anyone else? They started it up again at half speed but my oxygen went down again, not as much, but they stopped it for good. What a day!
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Yikes, that must have scared you to death! I have had four infusions so far, and before the first one I was cautioned that reactions are common, so the nurse stayed in the room with me until she was sure all was okay.
I'm glad that it went better and hope that you don't have any further problems.
Katty
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I’ll be joining y’all next week. I had a good run on ibrance and xeloda. Years! Failed piqray two weeks in and just failed A/A combo. Progression.
Guess I’ll be rocking the Aunt Fester look for winter. I had AC for the summer of 2013. I need to hunt up the icing gloves. So glad you said something. Neither MO or nurse mentioned this. Says it’s mild. No premeds. No nausea, no diarrhea, no mouth sores, no constipation, thin hair only, no drop in WBC. Wonder if we’re even talking the same meds. She makes it sound like a walk in the park.
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Zillsnot4me, I have dexamethasone, benadryl and either ranitidine or famotidine as premeds. They take about 50 mins to run. Then the taxol. I ice both hands and feet. I also take B6. Hair fell out but then started growing back. I hope taxol sends your cancer to the curb and is easy on you.
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Hi Zill,
Welcome. I am a newbie and have had four infusions so far. I have infusions every Friday without a break.
Here's how it's gone. The first two weeks weren't awful but I did have some side effects. I don't get diarrhea with chemo, but I do have to stay ahead of constipation. I had a lot of deep muscle aches including an inexplicit pain in my right heel, the one foot that was always Ground Zero for problems when I was on xeloda. I did develop mouth sores but they cleared up within 5 days and have not reappeared; I do have some magic mouthwash on hand if I need it. By the end of the second week I was already losing my hair big time and got a chopped off to about 3/4three quarters of an inch most of which is now gone. My husband says like I look like a baby bird and I say I look like a parrot that has been plucking out all of its feathers! I've lost my hair twice before so I have plenty of scarves and caps etcetera already.
When I went for my third infusion my WBC was on the low side, so my MO decided I should skip that one and I had a week off. He also decided to lower my dosage by 10%. My third and fourth infusions have gone smoothly, no more muscle pains no more foot pain no more mouth sores, so this was a good strategy.
I have only 15 minutes of pre meds a low dose of dex. I think it first they were giving me an anti nausea but after I told them that I was having zero problems with nausea, I believe they eliminated it, because yesterday the nurse only mentioned giving me dexamethasone. After 15 minutes of pre meds my Taxol infusion is 1 hour.
I already have some neuropathy in my fingers and toes from Xeloda, but I just started using the iced footies yesterday. I have the icing gloves too but haven't quite figured out how to use them and still be able to be on my phone etc.
Everyone's reactions are different, but I hope that Taxol all is easy on you and most of all that it is effective! I think my first scans will be in early December so I am wishing and hoping for great results!
Thanks for sitting through my lengthy taxol diary I hope it helped!
Katty
A suggestion. If they refuse to agree to pre-meds, (!) be sure that you have some Ondesentron or other anti nausea med that you can take as soon as you get home. As I'm sure you already know staying ahead of nausea before it starts is key!
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