Weekly Taxol for Stage 4
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I didn't see my onc this week but asked the nurse about Benadryl. They had me down to 12 so I asked if I could to up and she increased it to 25. So far, I'm not shivering and no fevers. Course the fevers usually kick in at night so we'll see what happens tonight but I really feel better today than I usually do on a Thursday. Thanks Jen!!! Now if I can just get rid of this neuropathy so I can get shoes on and walk, is be all set. Everyone says how easy this chemo has been and I guess considering what could be happening it has been somewhat easy. However, this has been the worst treatment I have has so far. Can't walk, stuck with either flashes of heat or shivering cold...no middle,there is no part of my day that feels somewhat normal. Sorry for the mini rant.
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Frapp - I hope you have a blissful night tonight.
Today was my last weekly Taxol, for now. TMs had elevated to 120 (high last year was 2,600, low 3 months ago was 50), so it seemed time to try an anti-hormonal, after having developed mets while on Arimidex and had a fast progression while on Tamoxifen.
I've been moved on to Faslodex, so I'll join that thread. I will tell you, the shots were a breeze.
I'll miss you guys, so - of course - I'll keep poking my nose in.
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So I have been on weekly taxol since Nov 4, 2011. 3 weeks on, 1 week off - had to go on chemo because of liver mets showing up. I have had clear scans for over a year. Last scans were in February, next scan is scheduled mid-June. I am getting pretty tired of being chained to chemo! I do miss a week here or there if I have traveling I need to do. But . . . I am thinking about asking the doctor in June about adjusting the schedule to give me a little more freedom - 3 weeks on/2 weeks off, 2 weeks on/2 weeks off - I know that the clinical trial results indicated that the low dose with 3 weeks on/1 week off was best for stage iv breast cancer. I am scared to go off chemo completely, If it is still working, I want to get as much time out of it as possible - Anyone on taxol with a modified schedule?
Now that I am retired, I am really wanting to be able to go and visit my girls, etc. without having to worry about missing too much chemo.
Becky
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rkt: I wish I could have tried that, but when I went to 3 on/1 off, that's when my TMs started floating up, about 10 -20 points each cycle. We tried going back to every week, and they slowed down, but still trending up. So, off to Faslodex I go.
Frapp: How was your night?
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My doc actually suggested 3 weeks on and 3 weeks off but I am afraid to go that far. I'm going to go 3 weeks on 2 weeks off for a while and see how that works. I have been 3 on and 1 off since December.
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I was able to sleep all night. However I woke to 101.3 temp. At least I'm not having the temperature swings. We'll miss you Jen. Good luck on the faslodex.
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Maybe push for more Benadryl? Standard is 50 mg. Unless you are a bitty little thing. So glad you slept well!
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blaine jenni...i am going to miss your informative posts!!! hope you do well on anti hormone drugs. gotta question, isn't there anymore chemos you can try???? i am hormone refractory. no can do those anymore. i have been on 5 different treatments like a lot of the ladies here. how many options are out there that you know of
good luck !!!!!!!
susan
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frapp...I had loads of trouble with feet a couple of treatments ago...i found my best option was uggs. slippers, usually with bare feet. was able to walk only in them. feel for you, happy those days are behind me right now..wasn't fun
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Susan3,
Taxol was my first Stage 4 chemo, so there are many chemos left. I'm doing the Faslodex, cause anti-hormonals are slightly easier than chemo, and my TMs were rising on Taxol. Fingers crossed!
Hoping everyone is doing well this gorgeous Monday,
Jennifer
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Hi Girls
I will be starting Taxol next week and just wanted to drop by and introduce myself. I am coming off of Navelbine due to slight progression in 3 lymph nodes and TM's that are now over 1500. Only got 4 months out of my last 2 chemos so I am hoping that Taxol will give me a nice long run. I did it when I got sick originally in 1999, and suffered thru 4 cycles of it. Hopefully, weekly will be kinder!
Hugs!
Robin
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Robin,
Weekly will be MUCH kinder. You might get hair loss, and some neuropathy still, so ask your team about anti-neuropathy measures (like Gapapentin).
Sorry about your progression, but it seems like your medical team is very observant. When you get started, let us know how it is going.
Jennifer
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Thanks for the welcome Jennifer. I have a small amount of Neuropathy from the Navelbine, so thanks for the heads up about the Taxol.
Robin
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I have been on taxol since January - 6 weeks on two weeks off. My onc was originally going to give me 24 doses of taxol and then put me on to a hormonal treatment. However I've been finding it increasingly difficult to cope with se, neuropathy in my fingers, extreme fatigue for two or three days, nausea, vomiting etc. Last week when I should have been having my eighteenth dose my onc decided to cancel taxol for two weeks and has put me on a week on week off regime indefinitely. I was shocked as he was keen the previous week to continue with the six week cycle. I am terrified that the cancer will progress. I had scans at the 11 week mark which showed that while the tumors hadn't grown or the spots disappeared, they were stable. I had myself psyched up to finish the course of chemo, hoped that the cancer would stablise and could be held on hormonal treatment (as onc had suggested). Instead the goalposts have been moved without explanation and i don't know where I am and I'm so frightened. Also will I be fatigued and bald forever? Sorry about the whinge, I'm having a bad day..
Take care
Aoibheann x
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Aoibheann,
Pretty please, tell me how to pronounce your name. I thought I was familiar with Irish pronunciation, having mastered Siobahn, but your name is new to me.
Are you on any medications to mitigate the side effects? If not, talk to your Onc about Gabapentin for the neuropathy. That stuff works! What anti-emetics have they been giving you for the nausea. Personally, I did better on Compazine than Zofran, and it was cheaper to boot.
How are they in the UK about prescribing Ritalin for fatigue? Some Oncs here are good about dispensing it for fatigue, and others act like we are going to go sell it in the schoolyard. If you can get your primary physician or your Onc to prescribe it for you, grab it and run. It really does help with the chemo fatigue. I would not have made it through 44 treatments without it.
If you are bald now, you may grow some Taxol fuzz, or your hair could try to come limping back. I've been bald, eyebrowless and lashless for a year now, and it does get old.
This is whinging central. Feel free. And, it is really whining if you are complaining about something that actually sucks? I'm thinking that's just accurate reporting.
Go get you some drugs, girl. And let us know how you are doing.
Jennifer
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I'm having a good run on taxol starting in dec. 2012 ... Minimal SE's and hair thinning but no loss yet. Last scan showed stable boy was my friend!! Hope to be on it a long, long time. Neuropathy and diarrhea are my main SE's. neurontin and immodium are my friends. Whining is totally acceptable here!! Welcome Robin and Aoibheann. Hugs to all.
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Hi Glenna...thanks for the welcome. Congrats on Stable Boy....I hope your relationship with him is very long term.
Can anyone please tell me how long to expect the treatments to last? I was sorta spoiled with the 90 minutes with the Navelbine!
Thanks
Robin
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You'll get to 90 minutes, but they'll start with slow drips at first to monitor you for adverse reactions. By my 4th infusion, we were rocketing along at 90 minutes, pre-meds and all. There was barely time to nap. But, the first infusion took about 3 hours. Bring reading!
Jennifer
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Thanks Jennifer. The pre-med steroids have me a bit nervous. I have to be up at 5:30am for work the next morning.
Where in NY are you.?0 -
I've tried lots of ways to try to keep my sleep cycles normal after the Benadryl and steroids before taxol. Found that what works the best is NO NAP after I get home and then take a couple of clonazepams about 30 minutes before bedtime. If I absolutely can't stay awake, I make sure it is a very short nap or I will be up ALL night on my decadron high. So glad I am retired ... Don't know if I could work after being up all night. Good luck, robin! I agree with Jennifer on the timing.
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Robin,
I'm in Ithaca, and get my treatment here too. You'll have no trouble (I think) getting up the next morning. The pre-med steroids can make you very hyper for two days after the infusion. Crash day - for me - came two days after. I had chemo on Thursday, and was super-tired on Saturday.
Glenna is right. If you can avoid napping on chemo day, and make sure you get to bed at your regular time, the crash fatigue is much less. Now, getting to bed may take some medical help as you will be jazzed from the steroids. I used to take two benadryls, and that did the trick. Oh, and a nice hot bath.
Are you the one in NYC with Dr. Vahdat? Dr. Moore was my primary Oncologist when I was first diagnosed with bc. If you are, I hope they've fixed up the infusion room at Iris Kantor. It was cramped and depressing.
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Hi Jennifer
Thanks for the welcome and advice. My name is pronounced 'eve-een'
. Re meds I take 100mg of Lyrica twice a day for nerve pain but it doesn't seem to do anything for my neuropathy. I have an appt. with my onc. on the 20th so I'll ask him about the Gabapentin. I had asked him about taking vitamin B which I read helps with neuropathy and he said it would affect the taxol. However he seems to work only with treating the cancer and refers pain to the palliative care team so maybe this will be a question for them. I also have a 75mg duragesic patch and I take 15mg oxynorm for break through pain.
Re nausea I take stematil, valoid and, more recently, zofran. I've developed vertigo in the last few weeks and I take stematil for that too. The vertigo mainly affects me getting up from a lying down position i.e. getting up in the morning so the stematil doesn't seem to have affected that. Has anyone else had this as a se of anything??
The attitude to fatigue here is that it is a se that has to be borne. I've never heard of anyone being prescribed ritalin other than for ADHD so I'll run that by him as well. Other than the immediate day or two after chemo when the steroids are still in my system I spend my time lying around feeling exhausted so it would be great to find something to energise me. I haven't been able to work or walk in the hills since initial diagnosis. It's all so depressing.. (sorry for being such a moan
).Thanks again for the advice and positive thoughts
Aoibheann x
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Hi aoibheann
Are you sure that the vertigo you get when standing up isn't caused by low blood pressure? Because if it is then it is easily fixable, but not with anti nausea meds. Just a thought to check out...0 -
thanks for the advice ladies. Jennifer, I am 12 milesSouth of Buffalo and do my treatments at Roswell Park which is downtown Buffalo.
I am seriously thinking of retiring in September....the energy levels are dwindling! lol
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Aoibhhean, I visited your beautiful country in November for 8 days. My DH and I had a wonderful time touring the countryside on our own time. I wish I had planned a longer trip. What part of Ireland do you live in?
You mentioned that your onc said vitamin b can affect the taxol. I need to check that out because I have been taking vitamin B. thanks for bringing that to my attention. I do have to sit on the side of the bed before standing up because of some slight dizziness. I find if I take my time, I'm okay. Not sure what causes the dizziness and I haven't even thought to mention it to my oncologist.
Robin, heading up your way in a couple of weeks with my sister and niece, and 3 of my sister's granddaughters. We're going to Niagra falls and Stratford to see where Justin bieber grew up and have tickets to Romeo and Juliet t the Shakespeare festival. Looking forward to a great trip. Luckily it is my off week from chemo. Well,have taken my clonazepam so hope to have heavy eyes soon. Take care, taxol buddies!0 -
Glenna....the Stratford Arts Festival is one of the true gems in the area. You will love it....and of course, Niagara Falls is so impressive...especially the Canadian side where you will see so many beautiful flowers. If you are in the area at night, they turn lights on the Falls.
Aoibheann....welcome to the group. I am still officially "lurking" as my first injection isn't till Monday. I did take this drug back in 1999, the first time around, and did ok on it except it attacked my joints. I hope the lesser dose will be kinder to my knees.
Hugs,
Robin
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Hoibheann,
After 6 rounds of Taxol (2 weeks on and 1 wk off) the tingling of my fingers and toes was very bad, so my onc stop the treatment and was on Herceptin alone for 4 months, disease progression noted, changed treatment to navelbine for 3 months without success, then changed to xoleda since feb/13, in May/13 CT scan showed tumor shrinkage, feeling dizzy and fatigue most of the time during the day, no sleep deprive, just feeling the SE of the meds.
Keeping marching on, we are fighters.
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I can't believe I called my onc today to ask to NOT have my break next week. I had two breaks in May and I think that was too much as I was feeling progression. My fevers were getting worse along with coughing and just needing much more breakthrough pain meds when I wasn't using it at all before. I have been feeling a bit better after 3wks of chemo and don't want to lose the momentum with a break next week. I have scans scheduled for the 26th so well see how things are going. I'm afraid there may be some progression I've been feeling pain in my liver area. I didn't think that liver tumors were suppose to cause pain but I have this almost constant ache in that area just at the base of my ribs on my right side that the oxycodone doesn't help with. I'm trying not to think about the upcoming scans. ((Big sigh))
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Hi frapp - wishing you the best and sorry you are having these side effects. I have been on taxol for 9 weeks (with a bit of carboplatin thrown in). If it makes you feel any better, I have a relatively constant dull ache in the liver area and was also worried about liver mets but ct scan showed that liver was clear and not even enlarged(i have lung mets)I do have raised liver enzymes but this I think is due to carbo and no break between chemos.
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Thanks Gab, that makes me feel a bit better. I had liver mets but they were kicked out with xeloda when I developed lung mets. I'm hoping the liver mets aren't back.
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