Weekly Taxol group
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Hello everyone, I had my first Taxol infusion yesterday, went well with no side effects so far, I am sure something will come along tho. I am so glad to have found this forum will spend some time reading back over the posts. This is my first chemo , I was on Letrozole and Kisqali for just over 2 years till it failed and now things have really ramped up. I have mets in my lungs which the dr said is spreading like mushrooms but thinks this chemo will get it under control just going to take a bit and some in bone but over the past 2-3 months i have developed breathing problems and am currenty in hospital trying to get things sorted out. Not to sure what to expect for side effects and any input into how to handle things will be greatly appreciated.
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snowycrocus, hope you're tolerating your taxol well & have gotten your breathing issues under control. There's a thread for Stage IV taxol as well which you might find helpful https://community.breastcancer.org/forum/8/topics/... Update us when you can!
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Hi All, I am new. I just had my 6th Taxol infusion (with premeds) . Halfway done of weekly taxol. Herceptin every 3 weeks
It is 3:00 am in California. I do not sleep very much until Thursday night. Friday and Saturday are my worst days with flu like symptoms. I have facial acne at 54 and rashes . I have a sore on my lip too.
I shaved my head at week 3 but still have stubble, not sure if it will all go. It was very thin, painful and itchy. T-gel shampoo helps.
Thank you to all of you for stories of personal journey. It has meant the world to me. Traci
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Good Morning. I start the Taxol / Herceptin the end of this month. Terrified.
Does anyone have any good experiences they can share?
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Finally out of the hospital after a couple of scary weeks. There was a time I might not be making it out of there but I did and am home, on home oxygen and slowly tapering off the steroids, I hope my breathing will return to the point I no longer need oxygen. I have had 3 weekly Taxol with 1 carboplatin which will be my treatment for the foreseeable future. All treatments were given in hospital so on a slower infusion, first one as a out patient will be next Tuesday at the clinic, I wonder if when it is given faster if I will notice any difference, Only side effect so far is constant terrible pain in my knees, hopefully I will find something soon that will give me some relief. My hair is starting to shed, will probably shave it this weekend after our Thanksgiving.
Thank you all for sharing your stories , It really helps to see I am not alone.
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hi, don’t be afraid. Everything has been manageable. Take 1 day at a time and it goes fast❤️Trac
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hi ivyskymax66. I just finished #6 Taxol the 10/6. I have been feeling very good. My major side affect has been facial and arm rash. It really looks bad but I can handle it. I also had stubble after head shave and got folliculitis induced by Taxol. it’s slowly leaving. I have been really blessed not having any pain or nausea. I get Kanjinti every 3 weeks also and will get it along with Taxol 10/15. It’s so good to know I am now on the downside of Taxol.
Eucalyptia. Do not be afraid. I’m 69 and said I didn’t want chemo. My MO is very encouraging and said I can do this. So here I am. Doing it and doing much better than I ever thought possible. I know some have harder time than others as we are all different. Keep positive and let you MO know of any problems as they have seen all of them. You can do this
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Hello!
First post, but I lurk on occasion and read posts (I find it hard to follow convos with the way the this board is set up).
I’ve finished AC (x4) and will be starting Taxol (x12) on 25th October. To say I’m nervous is an understatement. I’m afraid of the CIPN, the potential for an allergic reaction (I’ve had anaphylaxis from another drug; I know I will get pre-meds for Taxol), etc.For those that have done cryotherapy, what set up has worked well for you to keep hands/feet cold through out the infusion? Also, has it worked thus far?
Any other preventative strategies to decrease the chance of neuropathy? Has anyone been recommended vitamin B6? If so, what dose were you told to take?Thanks so much in advance!
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I use 100 mg of B6 once a day.
For ice packs, I use gel ice packs. 4.5 x 10.5 inch. fold in half, put on toes and fingers. Very very thin socks and gloves to prevent frostbite, then icepack, then something to insulate it. Feet are covered with giant sized stretchy wooly oversocks to insulate; for hands, oven mitts over top. Yes it's very silly looking but it works. I start about 10 min before the infusion and keep doing it for about 10 min after. Swap packs out about every 20-30 minutes. If I don't feel like crying about having the stuff on my feet and hands, I know it's time to swap lol. There are times it hurts so much I have to take my feet out of the ice packs and let them warm up a bit. My hands pop out more frequently as I can't have dh help me in the chemo room due to covid so I need my hands for my ipad and headphones, grabbing a sip of drink etc. I also use the fast freeze setting on my deep freeze the night before I need the packs so they get super cold, then pack them just before leaving in a cooler packed with additional hard icepacks.
I'm on taxol indefinitely and my MO told me neuropathy was the prime reason she takes people off so I'm *super* motivated to make this work as long as possible. So far so good. I've had 21 taxols so far in 2020 with only minimal tenderness in the fingertips and some mild cold sensitivity in my feet.
hth
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moth: thanks so much for the detailed info!
I think I saw somewhere in this thread that you also take l-glutamine. What dose do you take? I looked for it at my local health food store and didn’t see the powder. Are the capsules just as good? I’ll check with my MO, but dont see her until next week, so want to start looking now as I’ll start Taxol the following week
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I took l-glutamine in 2018 but this time around, I was having lots of problems with fluctuating liver enzymes and I stopped taking it. Technically it's supposed to help the liver but I just needed to limit possible confounders. I was taking 30 g/day divided into two doses. I don't know how capsules would work - I think to get that big a dose you'd have to take an awful lot of pills. Amazon sells it online if that helps.
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moth: thanks, really appreciate your insights
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Eucalyptia, I go for round 6 of Taxol today, and I am about to go downstairs and run my ass off on the treadmill. So...it's not the end of the world. Good luck to you!
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@Eucalypta: I completed 12 weeks of Taxol at the end of July and will be receiving Herceptin every three weeks until the end of the month. Taxol wasn't fun, but it wasn't awful, either. I continued to work (remotely), to exercise, to eat just fine--and odds are in your favor that you will, too. Chemo defies pretty much every instinct we have. For me, after the first 3 or 4 weeks, it just felt like being on the verge of having the flu for 3 or 4 months. Be as kind to yourself as you can be; lean on all the supports you have from your medical center, your family and friends, and this space. Get a big calendar and cross of the appointments one by one with a big X. Hang in there.
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@UnrealTarHeel thank you- I think the fear of the unknown and wide range of the side effects are what are throwing me off. I went today to "see" the chemo floor. I suppose I just wanted to know what to expect. I hope to have my final cocktail plan this week and a start date to work towards. Im 3 weeks post surgery today...feeling so much better physically but also...I might have overdone it today forcing myself to feel normal (to be normal). None of this is normal.
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Hello,
I am new to the boards and thought I would drop in. I appreciate all the different stories and experiences discussed here.
I will be having my first Taxol treatment on Thursday, Oct 22nd. Had a DMX 5 weeks ago and thought I would just be doing radiation but once they got in there they discovered that my lymphoids were still infected and detected cancer cells in 13 of the 14 noids removed. I did a CT and Bone scan and all clear there but my Doctors are recommending chemo to make sure no stray cells got away. This was a huge hit because we did not think I would have to do chemo at all.
So here is a break-down of my upcoming week from hell:
- Monday - port placement
- Tuesday - first tissue expansion
- Wednesday - CT scan, Chemo Teach and Lymphedema Physical Therapy
- Thursday - First chemo treatment (Taxol)
On top of that my TE are literally killing me and I haven't even started the expansion process (that starts next week too). I am constantly uncomfortable and am dreading getting my first fill on Tuesday.
Any words of wisdom or support would be greatly appreciated. I am just hoping to make it through my week without loosing it!!!!
Also, please let me know if there is anything I should get that will help with the weekly treatments.
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Moonique, sounds indeed like a very difficult week and hoping that others chime in. We're here for you, and please keep us up to date on how it is going. 0 -
To those just starting, please know you will get through this. I never found the treatments awful--I think the pre-meds worked well for me. I'd get Taxol on Friday, have a good Friday, Saturday, and most of Sunday (thank you steroids!!), start to flag a little late Sunday, was low energy Monday, but by Tuesday was already starting to bounce back. I never did feel bad/sick/. . . ? It was more like there was extra gravity on my body that made me want to stay put. Despite never feeling nauseous, I took the Zofran Fridays and Saturday, because they helped me sleep (some women have sleep issues from the steroid). I worked full-time throughout. I also didn't have a port--did fine with IVs. And I'd read about increasing protein but I REALLY REALLY upped my protein intake. Had red meat probably 4-5 times a week, plus protein shakes, plus eggs every day. I also firmly believe you should treat yourself during those 12 weeks. Many women feel that sweets are some of the things that taste pretty normal. My body apparently craved ice cream, which is normally not my go-to treat. I had Ben & Jerry's Chocolate Chip Cookie Dough every single day.
Losing hair is no fun but I can also report, keeping in line with what I'd read here on BCO, two years out my hair really is back to normal. I am down to only the AI, which honestly I don't think about any more. Exercise really helps with those SEs, but they also tend to subside over time.
Treatment days were definitely put-on-your-big-girl-panties-let's-do-this days. I think a positive attitude really does help.
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Moonique- Just read your post. All I want to say is "You've got this." I had a similar story to yours....chemo was not what I had planned at all!
It freaked me out but I made it through. This too shall pass. I actually recorded my experience into a limited series podcast, www.chemostories.com My intention is that it provides some hope. Sending all good energy your way. -Tina
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Hello! I officially start on Wednesday with Taxol and Herceptin/ cold capping with Paxman.
I just got my port...I'm in terrible pain. My neck, my chest, my person. Someone please tell me this gets better.
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Hi everyone! I've read almost every page in this thread and wanted to finally introduce myself.
I'm a 40 yr old mom, wife, teacher with self-found mass in my left breast. I ended up having one lymph node with cancer, too. So, Stage IIB. But all other scans, blood tests, and genetic tests have been negative or clean, thank goodness. I'm doing 12 weeks of weekly Taxol, then 4 biweekly treatments of AC, followed by breast conserving surgery (hopefully), and then radiation. I just finished round 2 of Taxol (pre-meds of dexa, benadryl, and pepcid). Very mild side effects so far (dexa makes me wide awake and jittery for days, tiny amounts of numbness in my hands). Getting anxious about upcoming weeks getting worse, though.
I'm grateful my school is letting me teach remotely while my students are in-class with a long term sub. It's a wild way to teach, but it's working. Looking forward to making friends here and being a support to others.
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Hello Everyone,
I survived my week from hell although i did end up moving my first TE fill to this week. I just couldn't face it after the port placement on Monday.
I am glad I have my first chemo treatment over. It was like the first day of school and I was the new kid in town. No real side effects except for being totally wired from the the steriods for a couple days which was weird because I haven't wanted to do anything for weeks and then I was ready to take on re-organizing the house. Tried to take advantage of the extra energy and got a few things done.
I am all set-up for the next 11 weekly treatments of Taxol and then will move on to the bi-weekly AC (but not trying to get ahead of myself).
I really appreciate the words to encouragement and hope everyone has a good week, hang in there!
M
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Hi Moonique! Looks like we're on a similar routine: Taxol then AC. Glad to "know" someone else doing this option. I've finished round 2 of 12.
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PolishWonder et al.--I think I posted above that despite not ever feeling nauseous I took Zofran for a couple of days after every Taxol. I think it helped me sleep after the steroid pre-med.
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Ingerp - oh, I'll try that! Thanks for the idea.
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Hello Everyone, I am 4 treatments in (this week is #5) and it has been a pretty bad couple weeks. My hair starting failing out two week ago, cut it really short last week and last night shaved my head. It was very emotional and sad. My husband insisted on shaving his head as well which is really sweet (even though I didn't want him to).
I hope everyone is doing well and staying safe. I am also hoping that I will start feeling better about being bald but will see how long that takes. All along I kept saying I wasn't worried about it happening but when it did, it real hit me hard.
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I did AC treatments prior to starting Taxol so already lost my hair with those. For me personally, I have gotten more used to it over time. It doesn't really bother me. Weird thing is I just finished my 8th Taxol and have very noticeable peach fuzz growing. Not sure if it will continue to grow from here on out but I certainly wasn't expecting it!
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Praying everyone has a safe and Happy Thanksgiving. I finished 9 rounds of Taxol. Last dose 10/27/20.
Glad to say all side effects have gone away except for mild mouth sores. Waiting on hair to restart growing. I am on Kanjinti infusions every3 weeks and starting anastrozole this week. Everyone hang in there.
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Hi All, I have been trying to read through as many of these many pages of posts on taxol treatments as I can. I am about to have my 4th DD AC treatment, then I am scheduled to start 4 DD Taxol treatments (every other week like the AC). It seems that most people have weekly taxol for like 8-12 weeks as I read through these posts. I guess I should ask my oncologist why the 4 DD Taxol for me? I wonder if it is just the preference of the individual doctor, or is treatment-driven by the type/extent of the cancer? I am a little scared about the allergic reactions they have told me can occur. I already have some anxiety issues, and I am going to be a little freaked out if I have trouble breathing! I have been told taxol is easier on the GI tract than the AC has been. After round three of AC I also really noticed the weak in the knees feeling.
Thank you in advance for any info on why the difference in the way the taxol is administered (weekly vs. DD every other week).
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Hello everyone. New to this thread. I had my first of 12 weekly Taxol/Kanjinti treatments last Monday. My next will be Wednesday of next week. My first treatment wasn't too bad, although when they speeded up the Taxol drip, my throat started swelling. They stopped it for about an hour while I got more steroids IV. When they restarted the Taxol, I was fine. The day after, I had some diarrhea, but was able to use an otc medicine for that. Hopefully, any other side effects will be as easy to deal with. Hope everyone had a nice Thanksgiving.
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