Weekly Taxol for Stage 4
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When I did taxotere, I did take B6 & B12. My nails actually got stronger & did not blacken or lift. It helped me with neuropathy as well.
Terri
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Hi Terri, I asked him about taking B6 and he said it interferes with the effects of taxol. He's against taking any supplements so I'm afraid to take anything...
Aoibheann
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Hi all,
Looks like neuropathy is a problem for all of us. When I went for chemo on Wednesday I told my onc that my neuropathy was getting worse. He cancelled my chemo immediately and said he would present my case to the tumor board to figure out what my next step is. Of course I was upset that I had told him anything because I WANT MY CHEMO!! He sent me for a ct scan and I will meet with him next Wednesday to discuss results and the future .... The neuropathy has gone from just affecting my fingers to affecting my entire hand and same in my feet .... Mostly the left side but some on the right as well. I will keep checking in here with you all and let you know what I'm doing and to see how you are all doing!! Hugs, glenna0 -
Hi all, just had my scan after 6 months of Taxol and it shows that all the nodules in my lungs have grown very slightly and there are some small new ones. So the Taxol made them shrink in the first 3 months and then they grew back to slightly bigger than their original size and there are more little ones. So there's been slight progression overall.
So it's goodbye to Taxol, I'm taking a 2 month break and then we'll scan again and decide what treatment to do.
Hope Taxol will be the silver bullet for all here!
Love and courage
After a mastectomy you would think they'd give you mammograms at half price?
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I GOT GOOD news today. The CT scan showed NO progression and a clean liver! I will start my new chemo next Wednesday. It's an old treatment that I also had in 1987 - CMF (cytoxan, methotrexate and 5 FU), two weeks on, 4 weeks off. When I had it in 1987 I also had adriamycin and vincristine. I'm happy I'm going to have the 4 weeks off every cycle! Will check in occasionally to see how all my taxol peeps are doing!! Best to you all!! Hope you get a good run. It obviously worked wonders on my tumors!!
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Great news Glenna!!!! So happy for you. Good luck with the new chemo!
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Hi. i'm DD taxol, 4 treatments total, have completed three. (TNBC) I've noticed that 5 of my fingernails have turned yellow and you can see that they are now half way off. i'm not experiencing any pain with this (yet) but have a feeling that will completely lose the nails within the next 2 weeks. Then what? Gloves all the time?
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Glenna,
Best wishes on the new chemo.
Terri
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Lorili,
Rumor has it that if you keep your nail covered with thick nail polish, they are less likely to come off. The theory is that the Taxol causes the nail beds to become photosensitive, and that is why our nails start lifting off.
I went whole hog for the girly polish, and never lost a nail, though three lifted off halfway before I started painting.
If nothing else, the polish hides the funny look of a nail half on, and it keeps one from staring and obsessing over it (at least, it did me - most of the time).
If they do come off, I've had friends that just put a tinted band-aid over the nailbed.
Jennifer
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I need some advice from the wise women on weekly Taxol.
I've had four weeks of Taxol and I'm struggling with fatigue.
My onc said this was an easy chemo and I wouldn't notice I was on it. The nurses reckoned I wouldn't have a crash day and I would be able to work right through it.
I'm not finding that at all and wondered if others had the same experience or is it me.
The first week I had vomiting and diarrhoea and my onc reduced the dose by 20% and that stopped. But I'm having at lest two days around the middle of the week when I'm just flat out exhausted and only want to lie in bed.
I don't want my onc to stop taxol if it working on my mets and we haven't scanned yet so I don't know.
Any advice or others who had the same reaction. I think I would feel better if I knew it had happened to others.
My onc is talking about doing 12-16 weeks and then returning to a hormonal all going well.
Moira
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Bump.
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Hi Moira
I was on weekly taxol for four months, then wk on/wk off and just recently once every three weeks. In the beginning, as the weeks went on, the fatigue increased, my haemoglobin and neutrophils dropped, and I had to have a blood transfusion and injections. Also I developed periperal neuropathy - this is a common SE of taxol. Now I've just started on a once every 3 weeks dose because the neuropathy continued to get worse and I couldn't hack the fatigue. I still get tired most days and the fatigue hits for a couple of days (where I am stuck to my bed) but not every week so if this regime works its doable. My cancer markers are still down and I'm stable.
One of the ladies on the site suggested ritalin for fatigue, it's prescribed in the States for fatigue in cancer patients, but my onc. wouldn't agree to it. Also vitamin B6 & 12 for neuropathy but again over here the onc was against it. It's worth mentioning to your onc.
We are all so unique in our reaction to these drugs. I was talking to another lady in the onc. day ward today and she's been on weekly taxol for over a year and has had no SEs. She's working, feeling good and her tumors have disappeared!
Take care xx
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Thank you for your advice.
I want to be that lady who has no SEs!!! I know we are all unique and I have been extremely fortunate that other treatments have been easy for me.
I have only done 4 doses so as yet no neuropathy but each week I seem to have different responses.
I see my onc tomorrow so it will be interesting to see if he thinks I should just continue or change the pattern of doses. If it works I will persist and just cope with being in bed for three days each week but it does make life challenging.
Can't see my onc agreeing to ritalin either but must check with him about what I might be able to take to help my body cope.
Thanks again.
Moira
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Moira, as you said, we are all different. I did 9 months if taxol and did not want to stop it but onc insisted because the neuropathy was worsening. Other than that, and diarrhea, I didn't know I was on chemo. And my cancer was stable as a result. Now on cmf and not liking it as much! Hope your body adjusts and the SE's lessen! Taxol is good stuff!
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Hi ladies,
I am new to this thread. I am starting taxol on Monday the 23rd. Kadcyla didnt work for me and we are assuming my new growth is probably HER-. I did do 12 weeks of taxol last year and I also have doen Taxotere back in 2009/2010.
When everyone talks about the thick nail polish, what kind or brand. I lost both big toenails from chemo last year. I assume it was the Taxol. I did AC too.
My worst side effects were horrible mouthsores. I did magic mouth rinse and another new one and it was bad. They even had me skip a treatment because they were so bad.
My onc said we will do another 12 weeks, treatment each week and then scan again (unless I feel the node in my neck is bigger again) then he said I would be on Xeloda as a maintenance drug.
I hate dam cancer
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Hi Allison,
Re your question about nails, I keep mine short, use Sally Hansen 'Miracle Cure' as a base coat, any brand dark coloured varnish on top and acetone free nail polish remover. I still have my nails but my fingernails have gradually begun to feel very tight and uncomfortable so I couldn't swear that this is working.
I haven't had any mouth sores (touch wood), I use a mouthwash called Bioxtra and an anti-fungal suspension called Mycostatin, as instructed by my onc.
Take care and best of luck with your treatment
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hi everyone, I am starting Taxol tomorrow morning. I did do it last year for 12 weeks and had a complete response to all my nodes. I went on Herceptin until I got a huge lymph node in my neck this June. We thought it could still be HER2+ but the FISH test came back negative. I had been on Kadcyla/TDM1 since july 8th and I knew the node was getter bigger but they wanted to do 3 treatments. Had my PET scan last week and my node in my neck doubled in size. It is 4.3cm and my mediastinal nodes are all bigger and I had 2 new ones. I dont have a copy of the report yet but my onc said all are more active too. there is also a spot on my liver but I dont have the size yet.
My onc said if this goes well for me he will put me on Xeloda for a maintence drug?? I would rather stay on Taxol I think but I will cross that bridge when the time comes.
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Thanks for the tip about the nail polish. I have the miracle cure stuff already and probably have some kind of dark polish. My nails were so bad last year.
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I will begin weekly Taxol for bone mets. If I remember from the first time is was not too bad. Praying everyone does well. Kathy
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I just finished chemo #20. I see the doc next friday. My cancer came back 18 months ago, and for a year did the arimedex. Then it showed up in more nodes , spine, and pelvis. I take taxol for 3 weeks, then off a week. I am having alot of issues with neuropathy in hands and feet, now my nails are dead and coming off. I absolutely hate it, but i have a ten year old, that my goal is to see graduate high school. I am still working, but usually day 3 after I feel like I was hit by a truck. I miss on average 1 1/2 days a week. I just kêep telling myself it has to get better. I wonder sometimes if its worth it. I never will be cancer free, and just getting aroound gets harder every day. I amglad i found this board to vent too!!!!!
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thinking of you Loukygal. Praying for a better week for you. Kathy
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I'm on the 3 weeks on, 1 week off Taxol tx. I originally did Taxol over 3 years ago when I was dx with IIb bc. So yes you can do Taxol again after doing it once.
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I will probably be starting weekly taxol soon (unless I change my mind again and try fulvestrant first). If I can I want to schedule my infusions to avoid having to delay treatments or having strongest SE on Thanksgiving & Christmas, and otherwise to feel pretty decent on Sundays for church. The rest of my schedule I can adjust around the treatments. I see the original poster and some others who have commented say the effects are most strongly felt on Day 3, but I don't know if day 1 is the day of the infusion, or the day after. Can someone clarify that for me?0 -
Day 1 is infusion day. I used to get mine on Thursday, and would start feeling it on Saturday. By Sunday evening, I was over the hump.
Best of luck!0 -
I did it--called the onc and scheduled taxol starting next Wednesday. Does "over the hump" mean you then felt OK from Sunday evening after the prior treatment, until the following Friday (i.e. the day after the next treatment)? Did you find that side effects like fatigue and so on were cumulative over the time you were taking taxol, or did you always feel the effects mainly on Saturday & Sunday? I did CMF initially and it was pretty easy the first few months but after that the fatigue really built up and by the end of the six months I was pretty wretched. Not looking forward to going there again but right now chemo seems like the best bet to stop progression. The anti-hormonals have just not done the job.
Also, how long did it take the fatigue and stuff to go away once you stopped taxol? I ended up in the hospital for a week with a toxic reaction to one of the meds. When I got out, I was as weak as a kitten, but at the same time I felt so much better than the last part of the chemo. I was only weak, but no longer being slowly poisoned, I guess. Did taxol make you feel poisoned?0 -
Yes - I did feel OK starting Sunday night and lasting till the next Friday evening/Saturday morning. The side effects were cumulative, but not horribly so. I did about 11 months of weekly Taxol and can't say that the last week was much worse than the first week. Especially sicne I learned how to cope with the side effects. I took a sleeping aid on the nights that the steroids tried to disrupt my circadian pattern, and I learned that I had to eat a low carb diet to maintain energy.
Taxol did not make me feel poisoned. Stage 4 treatment uses lower doses than earlier stage treatment, so you won't get hit by the massive fatigue that you experienced with CMF. I bounced back pretty much a week after stopping Taxol.
The trick to surviving any cytoxic treatment is to keep moving - even when you don't really feel like it. Just do what you can. Walking was/is my exercise of choice, and when the weather got too rough, I bought a treadmill. TV plus treadmill works for me. Also, eating bunches of simple carbs, while fun, will leave you feeling weak as a kitten. Learned that one the hard way last Christmas, when it took me two weeks to recover from carby Christmas goodness. I'm a sucker for fruitcake. Keep a tight rein on your blood sugar, as the steroids will cause it to elevate, and wacky sugar counts will keep you mentally and physically down. Please don't think I'm a diet and fitness freak. I'm a fifty-two year old obese female, who has to make like the Red Queen just to keep from getting fatter.
You are grade 2, so your prognosis has more time built in to it than we grade threes. There's a lady on the list (Pearlady, I think) who has been doing mets for 12 years now and is a grade 2.
And, should you have any worrisome side effects, scream like a siren to your team. Don't worry about being a "whiner" or "high needs". They need to know everything that you are feeling, and can adjust your treatment to alleviate the bad stuff.
I'll be thinking of you Wednesday! When I started Taxol, my TMs were 2,600. By the end of treatment, they were 54. So, when it works, it really works.0 -
Did weekly taxol make your hair fall out? My only previous chemo is CMF, so I did not lose my hair. I am dreading being bald on the taxol. I have made myself two chemo hats already. If you lost your hair, how many chemo hats did you have or did you wear the same one most of the time?0 -
curveball--I can only speak from my experience which was 18 weeks of weekly taxol. It started out ok, but my side effects were cumulative. I had to skip one treatment because of neuropathy, around week 15, if I had not had that break, I don't know if I would have made it to the end. I know my chemo started October 17th and by Halloween I had shaved it because it was falling out. We all react differently so I hope you have a good long run with it! Taxol worked for me. Complete resolve in breast and shrinkage and stability in liver and spine. As much as I hated it, I would do it again if needed. Best of luck.0 -
shaved my hair...0 -
Curveball,
My hair pretty much disappeared by week four of Taxol. I had "fuzz" which I kept buzzed down. My hair is grey/white, and so was the fuzz, so I just put some white face powder on it to hide the scalp and went about the day. Hats make me look like a pinhead, and wigs itch too much. In winter, I wore a beret, as that seemed to look better than a watch cap style. Some women look really good in a scarf; I looked like an escapee from a bad production of "Fiddler on the Roof".
On Faslodex, I have hair again, but it's a real pain after not having to fuss with it for a year. I plan to keep it very short, as I'm sure I'll be losing it again in the future.
Thinking of you,
Jennifer0
