Weekly Taxol for Stage 4
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moth- I started 2 days ago. Even though arw treatment is slightly different as is our Mets I also have more fatigue this time around and am not sure if it's from chemo or the immuno.
So far fatigue and some mild nausea are my side effects but I've only done 1 treatment.
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I've been reading older parts of the thread & I'm so amazed at how many of you managed such long times on taxol! I'm struggling
In 2018 I also struggled to get through chemo.Now I'm back on taxol + immunotherapy. I should have had 9 taxols by now but only have had 7 - one was cancelled because I had a UTI and fever, the last one was cancelled because I've had so much fatigue - like stuck in bed for 2-3 days/week type of fatigue. I've had one dose reduction already & the MO is thinking of one more reduction which I'm hoping we don't have to do.
I have sore nails & neuropathy developing in my fingers too I brought icepacks for my hands right from treatment 1 but maybe I'm not holding them right. The cancer center has covid bans on accompanying family/friends so I have to manage on my own & I wonder if I've just been doing a shoddy job of keeping the icepacks on.
The clinical trial I'm in requires scans every 8 weeks and my first scan showed that I was stable. I had some shrinkage in some tumours and a bit of growth in another one but when it was all added up, I was categorized as stable. So this treatment is working!You guys who manage long term - esp if you have liver mets - do you eat something special? Special supplements? How do you manage this? I read some people mention fatigue but it seemed like "need a nap" not "bedridden for 2-3 days"
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Hi Moth...
I was on Taxol for 17 months, and it worked very well for my extensive liver mets. I developed a bone met and since my liver mets were stable, my MO agreed to a IV chemo break and now I’m giving Faslodex/Ibrance a try.
I’m so sorry to hear you are suffering. From what I had read on this thread it seems random as to who struggles with Taxol and who seems to tolerate it well. I was fortunate to be one of the lucky ones who tolerated it well.
I drove to the infusion center alone and was able to manage with the ice packs. I iced hands/feet from the very first treatment. On my hands I held a frozen water bottle with both hands. On my feet I bought the ice packs and socks combo from Amazon.
I don’t know that I eat anything special, but just do my best to eat as healthy as I can, and I’m not always very successful with that : ) I think what helped me the most with my fatigue was exercise. Keep in mind I’ve never been an avid exerciser. But my goal everyday was to keep myself moving. I have a Fitbit and tried my best everyday to make it to 10,000 steps (and I wasn’t always successful at that). I set small goals throughout the day to reach that daily goal. Sometimes all I could manage was 500 steps at a time of a slow walk around my house. But if you keep moving those steps add up. I found in time the more I moved, the less fatigued I felt. For me exercise was key, to avoiding digestive issues with Taxol, sleeping better especially on those steroid high nights, and mentally I felt better.
So glad Taxol is working for you. I’m so very thankful that it worked for me for as long as it did. This thread is usually pretty quiet, and though I’m not on Taxol anymore, I’m here. If you have any other questions, please feel free to ask.
PB
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My onc. is thinking of switching me to weekly Taxol for 12 weeks, in response to a perceived progression in my primary tumor. It's not very big on the scan and he left it up to me to decide if I want to switch from the Ibrance/Faslodex I'm on now. (He said "we're failing slowly.") The mets to bone and lung seem stable and unchanged.
I'm not in favor of that right now, but I was wondering, as someone who has not had IV chemo yet, which is worse: weekly Taxol in the summer vs. winter. If you could choose, which would you rather have? (Our seasons here are not very extreme, but we do get ice and snow every year and also very hot days.)
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I’d pick summer. I was on weekly taxol for over a years found it to be very tolerable.
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I’d also pick summer. If you plan on icing hands/feet to help prevent neuropathy, it was easier to do that in the summer over winter. It gets pretty cold to ice in the winter.
I too was on weekly taxol for over a year and found it very tolerable
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Im doing it now and I say ditto for summer. Not only the icing during treatment, but I also get muscle and bone pain plus a tiny bit of neuropathy from taxol and all are aggravated by cold and relieved by warmth.
Btw, though i had a rough start and way too much pain and fatigue (& that might have been due to the immumotherapy or my experimental drug or my falling Hgb and not due to taxol) i'm feeling good now and expect to continue on the treatment as I've had a regression of my mets per last scan
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Thank you for the answers. I had almost forgot about the joint and muscle pain; now that it's warm they haven't been bothering me so much. I will come back and post if/when I decide to switch to weekly Taxol. I tell you, I am not very thrilled about the thought of starting IV chemo during a pandemic. No one to talk to, no one to come with me the first time, no one to drive me. It feels so alien and so lonely. I couldn't even think of any of my friends I could call and talk to about this. They're all overwhelmed on their own accounts, or too self-absorbed to take in anything I tell them.
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nine twelve, if you decide to go with taxol check that you will be allowed to drive after treatment. I was given phenergen to prevent anaphylaxis before taxol and advised not to drive. This may not be the case but best to check than get stuck at Centre. Best wishes.
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Thanks, helenlouise. My treatment center is only five miles from where I live. Taking a cab is an option, if I need it.
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how are peoples taste buds during long term taxol?
I had #14 (3 weeks on/1 week off schedule) last week and the last couple weeks my mouth doesn't feel right at all. I had sores and thrush which are gone now but taste is also gone.
I was blaming the magic mouthwash but now I'm wondering if it's just taxol finally getting to my taste buds? Last time the AC took my tastebuds and I think it actually got better on taxol.
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Moth...
Taxol definitely affected my tastebuds after awhile. My tastebuds started to go the day after infusion and would be gone a few days. It would slowly start to return as the week passed. By day 6 or 7 it would almost return to normal, but then infusion day would come again, and then the cycle would repeat itself.
PB
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oh poop. That sucks. I'm nothing even close to a foodie but I'm not liking this. I keep eating and craving things but nothing "hits the spot" - probably because I can't properly taste it 😆
Oh well.
I might start chewing on ice during tx - maybe it will help with the sores and the taste.
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It does suck! I generally try to eat healthy, but the day before infusion was definitely my “cheat" day as it was usually the only day of the week I could taste food and have it taste mostly normal.
I chewed/sucked on ice chips from the very beginning of my Taxol chemo. I was lucky to not have any mouth sores. And I think it probably did help my taste buds.
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i will be joining the weekly taxol group as soon as I get my port put back in. I thought I had taxol before but my onc says it was taxotere. I lost my hair on AC but it started growing back on taxotere. It seems that most people lose all of it on Taxol. Is this accurate?
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Hi pianolady, I'm doing taxol 3 week on/1 week off since mid-March. I lost my hair but it started growing back in July & hasn't started falling out again yet so I'm not sure what will happen. My MO assured me that hair loss or regrowth are not signs of how well Taxol is working (I had a dose reduction so was concerned about it) but she said some people don't have a full hair loss at all.
I'm also on Tecentriq which can also cause alopecia so I don't know which one made my hair fall out in the first place.0 -
I went completely bald on taxol. I did not shave my head, I let it fall out on its own and it happened gradually. For me it took a few weeks (maybe 8) to start falling out.
Hope it kicks cancers ass for ladies who are starting
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Hello All,
After 10 months on Xeloda, which has now failed big time, I'll be starting weekly Taxol in two weeks after my washout period. I'm in my 5th year of treatment for MBC the last two years with liver mets. I've been through heavy-duty IV chemo before (AC in late 2015/early 2016), so this won't be my first rodeo (and hopefully not my last), but I know I'll learn a lot about managing Taxol on this thread. I'll provide more details about what kind of progression my scan yesterday showed later - the news is still percolating, but I will mention that my cancer has neuroendocrine elements which makes effective treatment ever more difficult.
I hope you all have a good holiday weekend. I'm a pretty chill and very realistic (but not negative) person who is more of an under-reactor than over, so I'm looking forward to spending the next couple of weeks reading some good books and having a few stiff gin and tonics!
Cheers!
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For those on Taxol already or starting Taxol, I'd like to chime in with some tips about how I managed the side effects (I apologize for duplication, if this has already been mentioned earlier).
I used ice packs on my head (Paxman cooling system or similar will work too), iced socks on my feet and iced gloves on my hand from 30 minutes before treatment to 30 minutes after infusion. I would like to think that this prevented major neuropathy in my fingers and toes. My hair thinned but I did not become bald.
I bought the double lined icing gloves and socks from Amazon.
Sucking on ice Popsicle helped minimize the taste issues and also reduced the mouth sores.
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S3K5, thanks very much for the tips! I already have some neuropathy in the fingers and toes from Xeloda, so I have to closely monitor it!
Katty
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I'm getting my 18th taxol for stage IV (3 weeks on/ 1week off) tomorrow.
I had to skip 2 early on in treatment - one due to a UTI and fever & one due to crazy high liver enzymes. I've been on a reduced dose ever since & tolerating it well. Dropping from 80mg/m^2 to 65mg/m^2 doesn't appear to be changing effectiveness for me and it's much more tolerable.
I was getting a bit of neuropathy but I believe I have stopped or even reversed it a bit. It happened when we accidentally discovered that our stand alone freezer has a Fast Freeze setting which drops the freezer temp much lower & makes my ice packs really, really cold. We turn it on overnight before treatment & I bring the packs in a hard sided cooler. I don't use the gloves or socks - only regular rectangular gel ice packs, held in place by giant wool socks. They're so cold I almost want to cry and usually I have to take my feet out at least once because I feel I'm getting frostbite. I had sore finger nails and tingling in the hands but now it's much better. Feet are just a bit sensitive to cold. Have to wear socks even in summer heat & use a heating footpad at night.
I haven't been sucking on ice or popsicles because my hands are in ice packs. I can't figure out how I'd do it...I want to as I do have some issues with mouth sores and loss of taste.
Overall, right now I'm finding this treatment super easy. I was whining about taxol early on but I don't know if it was the taxol or the atezo or the large mets in my liver. My Hgb was bottoming out, I had cycling fevers and I was exhausted. Now I'm all perky & energetic ---- and my mets are all shrinking & ultimately that's the whole point so I'm super happy to be on this treatment now.
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moth,
I am currently on weekly Abraxane and Tecentriq. What was your PD-L 1 expression? Mine was 30%. I got sick after a month on Abraxane and had a ct scan that showed “measurable decrease in nodules “. Currently my tnbc is in my lymph nodes and I had cancer cells in my plural cavity but no solid tumors. I am just curious about the PD-L 1 because my onc said she has never had one so high. I am wondering if that’s a good thing
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Stillhavehope, I don't know the % of my PD-L1.
I was sooooo distressed at my metastatic dx that for months and months I was very passive about my condition and treatment. Never even asked how many mets I had in the liver, never got copies of my medical reports. Totally unlike 1st time. I'm just now starting to wake out of this stupor and be a more active participant.
I will remember to ask. Or maybe I'll just finally be a grown up and get my records.0 -
Hello Ladies!
I was on Taxol and carbo but just recently switched from Taxol to Abraxane because of rhe the reaction i was having to Taxol. I have completed 5 treatments. No sign of lump or swollen lymph node and liver enzymes are perfect after 2 treatments. Thank you Lord! I have had no side effects except for hair loss. Feel great and go to work everyday. I feel blessed. I have cat scans on October 5th to check on tnings. I hate scan anxiety!
Prayers for you all!
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hello all!
Stillhavehope- I'm on the same combo my PD-L was 5%. My onc just told me it's more likely to react positively to the immunotherapy and chemo combo.
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I just had my first infusion Iof Taxol yesterday- 10 minutes of pre-meds, with Dex plus an antiemetic- then an hour infusion. It was easy peasy;I didn't have a reaction and I'm feeling really good this morning.
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Kattysmith, yay! Hope you continue to feel good! & taxol kicks mets to the curb.
Are you icing? Oh and protect / dont stress your liver. Those seem to be the two issues with which get people dose reduced or taken off. (I'm.dose reduced )
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I didn't ice this week but probably will next Friday. I already have some neuropathy from xeloda so I need to keep a close eye on any deterioration!
Losing my hair is really the last thing I worry about, but I am curious, have most of you lost your hair? If yes I will probably get mine cut really really short next week to avoid clumps of hair falling out. I lost all of my hair with AC back in late 2015 or early 2016 then had thinning summer of 2019 after a short course of Gezmar.
What about your RBC WBC counts? Any major problems with low levels?
Thanks, ladies!
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i lost my hair and then it started coming back. I have short thin baby hair now. It's very dorky. Eyelashes and eyebrows are still gone.
I had low rbcs and needed transfusing a bunch of times early on but that was probably because of my liver mets rather than taxol. Once the mets started shrinking, my Hgb settled.
I need grastofil shots as even on a reduced dose, I tend to neutropenia. I had this prob in 2018 too. I think most people do fine with taxol and wbc
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My WBC stayed normal on Taxol. The only problem I had was my hemoglobin going down and making me very fatigued. I didn’t get to transfusion levels, but it was noticeable in terms of fatigue.
My hemoglobin normally is just under normal because of a hereditary condition and Taxol lowered it further
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