Weekly Taxol for Stage 4
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Hi ShazzaKelly, I've been on taxol since Jan 2013. I've lost count of how many rounds I've had as I originally was on a six weeks on/two off cycle, then two weeks on/two weeks off and now once every three weeks (one week on/two off). I think I've had about 32 doses. Hugs
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wow aoibheann that's pretty impressive. It's funny all the different protocols they have for these different chemos. I've been on taxol since Sept 2013 but do it every week no break so I'm around the 30 mark as well. There has never been any mention to me in New Zealand of doing it any other way. Has your plan changed over time to manage SEs. Part of me likes the idea of a week off between cycles but the other part of me worries that my cancer will progress if I don't get every dose possible.
The last time I saw my Onc a couple of weeks ago was the first time they mentioned the possibility of a chemo break, but only if needed and not anytime soon.
I am lucky that as of yet I haven't had neuropathy on taxol and the only real side effect I get is fatigue. Having said that I'm still able to work 30 hours a week so it's not terrible.
I'm hoping taxol and I have a long and happy relationship.
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Hi Shazza, my onc.'s preferred protocol is six weeks on two weeks off but, you're right, the plan changed because of SEs. He wants to continue with taxol until he's 'squeezed the last drop out of it'! I'm finding the fatigue difficult to cope with and my neuropathy is gradually getting worse. There are days I cannnot move but, on the other hand, taxol is keeping me stable. It's a balancing game. I'm also taking painkillers which may exercabate my fatigue.
I meet another woman at my onc day centre and she has been on taxol a year longer than me and has had minor SE's. She's been working a three day week and living a relatively normal life. She is now on 2 wks on/2 wks off cycle and is feeling great. She has liver mets and they've virtually disappeared.
My hair has grown back too - it was a shock to see myself with grey hair! I foolishly went to the hairdresser (where I got my wig) and got it dyed. I went blonde, bad mistake. It's now starting to fall out again, it must be a reaction to the chemicals in the dye. Aaagh...
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This is my first post in the weekly taxol forum. I have just been reading through all your posts and picked up some really good tips. Great forum.
I was initially diagnosed in 2009 stage 2B, standard treatment surgery, chemo & radiation kept me clear for four years and then 2012 I had a five cm tumour on my femur. After the hip replacement it was looking good. All the doctors chirping decades with only bone tumours AND then January i had a 8cm tumour on my knee. With that news I was made redundant from my job. I could have sued them but decided I did not care for the fight and took a good redundancy package and left. Next week I found out that the cancer had spread to my lungs, liver, ribs and right femur. So my oncologist promptly put me on weekly Paclitaxel and the tone became serious. So far I have had my fourth treatment yesterday. It is going okay.. the shock of it all - big changes but I am in a good place mentally. Glad to be out of work, have started working on my own projects which are much more satisfying. I have had a nose bleed for three weeks now - anyone else experienced that? And also found the weekly rhythm that you all speak off. Day four being the worst for me, and learning to pace myself and say no to activity that is too exhausting. I also get acupuncture twice a week - which really helps. and oh yes I have lost 25 percent of the hair on my head - but it hurts in the roots and I am hoping that the rest go soon. I have really nice wig that looks just like my own hair so most people cannot see the difference.
my motto through all this is : Now is all you have!
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Hi tigre45, welcome to our little group. I definitely have the nose bleed problem. Mostly in the mornings but it seemed to ease of as the weeks go by. I gave up on my wig a couple of weeks ago at work and it's so liberating. I couldn't stand wearing it.
I hope you have a great response to taxol. It's certainly helped keep me stable, although I've only been on it for 6 months. I hope to continue with it for some time to come as I find it quite doable.
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Well, lots of news here ... first, good luck to you, Clare. Hope you get a long run out of femara. I loved femara, was so easy for me. Welcome tigre & Aoibheann! I'm shocked, Aoibheann, that you can actually be on the same chemo for so long, wow!! Loving it!! Could you explain a little more? Like what s/e you've had (any nail issues, chemo brain, neuropathy, swelling?) Curious, as I like to compare notes. I'm 3 weeks on/1 off (started end of Sept., #21 coming up this Monday). I would like to understand when they change the regime how they dose. I was recently offered 2on/2off; but wasn't sure if that meant I would be getting a higher dose for 2 weeks or a lower dose, so I was afraid to change. I'm on 125mg/weekly. Which regime was the easiest for you? I've heard the higher doses with more time off are the hardest to deal with in terms of side effects. Also, Aoibheann, how do you handle the fatigue? I've had such a hard time with it. I also hate the swelling I get in my ankles/calves & don't understand why it's worse on my week off!! Makes no sense. Regardless, just hope the scans say it still working. Next scan is in May.
Shazza - so sorry about your nails. I've been worried about that myself. My daughter getting married this summer and I want to be able to have my nails, not to speak of the pain it must bring with nails falling off!! I've been icing my nails each infusion and keeping dark polish on the day of (read somewhere it's the light that also does something to the nails in addition to the chemo). So far no issues, but I know that can change in a second! Could you send me some of that beautiful hair!! I'm jealous!! Gives me hope, though. I miss my hair so much!
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SyrMom
A couple of years ago our 1st son got married, I was on Taxol and wore a wig, eyelashes, press on nails, the works. Just be there, ok?
Anita
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ADJ, lol, I hear you! I thought about the eyelashes, too. One of my eyes runs a lot, waters, etc. (another chemo s/e I forget to mention); so concerned the darn eyelash might fall off!! Did you have watery eyes?
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Syrmom use the lashes they put lash by lash the glue is better and if your eyes water use a tissue but do not rub. They look nice and natural. My son's graduation is on the 24th of may and i have had the same problem with ACT before and now with carbo gemzar now. But be at the wedding beautiful and happy.
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Thanks woodylb. Didn't know they had such a thing, lash by lash. Where did you get yours done? How long do they usually last?
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Completed #21 yesterday. 3 more & then another scan. Worried cause markers went up, first time since having taxol. Hope this has not failed me already.
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SyrMom sorry to hear your markers went up. Hopefully it's not a trend and your scans show stable. Markers are no good for me. They have never been raised and never change. So my Onc doesn't rely on them for me. We just wait round for the 3 monthly scans. I've just finished cycle 10 and all seems to be going well. They doesn't feel there is any real need to give me a break between cycles at this stage.
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Thanks shazza, I hope it was a fluke. Early on my markers seemed unreliable. However, the more progression I got, that changed. Time will tell ... Glad you are remaining stable.
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Hi Shazza, I think I'm on the same low dose of taxol as I was from the beginning. At least that's what I assumed but I must check that out next tues. I've become very passive as onc doesn't react well to questions. I'm amazed at you, taking taxol for so long without a break! I simply couldn't hack it weekly and that's why my dosage has been stretched out.
As for SEs... I'll bore you to death but you did ask... neuropathy in both hands but worse in my right (dominant) hand. Pins n needles and spongy fingertips, nails are tightening and contracting. I paint them with Sally Hansen 'Miracle Cure' and a dark nail varnish on top and use an acetone-free varnish remover. (I also have lymphodema in my right arm and hand.) Toes and ball of feet esp the left one are becoming increasingly numb. Dripping nose (delightful) because of hair loss. Nausea and crash on third day after treatment. Intermittant nausea, sometimes dairy makes it worse. Fatigue wise some days are better than others. It really frustrates me as I can't do a fraction of what I want to do and it's hard to plan. I try to go for a walk most days and meet a friend for coffee/chat, I fall asleep nearly every afternoon. On bad days I crawl from bed to recliner. DH does most of the shopping and cooking. I loved cooking and baking but can't do it now. No gardening either. I am aware that some of the women here take ritalin or another drug that begins with a 'c' for fatigue but my onc won't prescribe it as he feels the SEs create other problems. Chemo brain makes me more forgetful, duller and repetitive - at least that's my excuse.
I've a bone scan next mon and ct on Tues. I'm getting worried as my markers were up last treatment. However onc doesn't rely on markers, he prefers scans. It's scary as I don't know what's next and they say taxol is one of the easier chemos!
Hope you are doing well. Take care
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Wow Aoibheann you have had a rough time on it. The chemo nurse reminded me yesterday how easy I seem to have it compared to most. I think it's to make up for the extreme reaction I had to Xeloda. But I do count my blessings that I've coped so well so far and that taxol is keeping me stable.
Good luck for your scans next week.
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Thank you for the welcome.
I have an appointment with an ENT specialist as the nose bleeds are constant now for 3 weeks. My oncologist wants the bleeds cauterised - Has anybody had any experience with this much nose bleeds?
But it is a beautiful sunny day and I look forward to sitting in the park with my lunch in between doctors appointments.
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So I saw my oncologist yesterday and found out that she will not put me back on anti hormonal meds after Taxol as I seem to have become resistant. So instead it will be one chemo after the other.. She keeps using phrases "enjoy yourself" "quality of life" "do what you like to do" etc. It almost feels like she has given up on me. I feel disheartened. I mean there has got to be some other approach or am I just in denial? it is still sunny today, but I don't feel that optimistic.
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I saw my oncologist yesterday to get the results of my PET/CT scan. The results were great. No new spots...most of previous mets were not seen or "sclerotic" ??... She basically said taxol was working for me and I am scheduled to do 3 new cycles of taxol.
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patsback, wonderful news, Congratulations! Kathy
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Patsback, that's great news. I'm delighted for you!!
Tigre, I can empathise with you re feeling your onc has kind of given up on you. I was stage iv from the gates and onc reassured me it was a chronic disease with good life expectancy and prescribed faslodex and aromisan. Four months later scans showed progression and he decided to put me on taxol and suddenly he's talking about a timeline of 5 years and no hormonals, just chemo after chemo. And I've only ever been on the aforementioned hormonals so I never understood why he didn't try others before he started chemo. I'm curious about what hormonal therapies you have tried. Is it common for stage iv people to go back on hormonals after chemo?
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my Onc is concerned about tamoxifen resistance with me as I have had 10years of it with my other 2 breast cancers so we have started with chemo. I know that he is wanting to try tamoxifen again or another hormonal at some stage down the track. I don't think he expected me to respond so well to taxol and now wants to stick with it as long as possible.
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Patsback congratulations on the good news.
Aoibheann I only was 3 years on Tamoxifen, then Letrozole for a year and finally on Exemestane. Oh yes and between a few months I was in a clinical trial called IRIS which added something to an anti-hormonal that makes the anti hormonal work longer - side effects were so debilitating and it did not work. So here I am. But you are also ER positive so why dont you ask your onc about other anti-hormonals. I know letrozole is quite effective for years on many people.
ShazzaKelly great that you got ten years out of tamoxifen. It does sound like your onc knows what he is doing. I can help wondering why mine did not put me on chemo earlier, since my tumours have been growing fast and furious over the last 2 years.. but hey better not look back eh. Great with the Taxol doing its job. I have just finished my 5th yesterday and taking a break over Easter which I am looking forward to.
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hello ladies
I had my first round today ab
nd tonight im feeling quezy to my stomach is this common .just wondering ,they gave me steroids and benedryl also ..just wanted to get some input
thank you chris
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Hi Chris,
My onc sent me home with a script for Compazine just in case. I did have to take it for the first few infusions, but now I am good to go with just the premeds. Did they give you a premed for nausea?
I would ask your onc for something to take at home.
Euro
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hi Chris1959. I had no 31 today. Apart from the drip premeds my Onc prescribes domperidone. I take 1 before chemo and then 4 hourly on day one for nausea. I can take it other days but don't seem to need it. I'm in New Zealand and different countries do things differently. Hope things get sorted soon.
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thank you everyone I didn't get a premed for nausea but I will ask for one .I do have some sick pills and I took one but it didn't seem to help much .I feel fine today .so I will defineately ask to have a pre med for nausea and im going to ask mo to give me something different for nausea because I have had to use these before and they just don't seem to help much . thanks again love chris
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#22 infusion completed today, uneventful. Most aggravating side effect lately is swollen ankles & calves; hope I don't end up with lymphedema of the lower extremities! Scans in 3 weeks.
The premeds I receive are via IV before infusion: decadron, Benadryl & zantac.
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no 32 for me today done in record time. SyrMom have you been given any explanation for the swelling? The skin on my face is awful at the moment which I think must be chemo or premed related. An horrible rash around my mouth and chin. Just revolting looking.
I think we get different premeds But I have chemo brain after a long work shift and apart from dex I can't remember the names of them.
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Shazza, make sure your onc sees the rash and/or dermatologist. There's a syndrome I think is called Steven Johnson (chemo brain at work here too) that you can get with taxol - should be treated. No explanation for swelling. Some nurses say they see it in patients, others not. Not much feedback from onc. Planning to touch base with my primary. They gave me diuretic that I can't tolerate as it drops my blood pressure and makes me too dizzy. The premed I'm on are steroid, antihistamine and antinausea.
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Hi:
I was wondering if anyone had been on Taxol when after three rounds and markers going down, (gradually) they had blood work done at the third round on the fourth week; which is the week you do not get Taxol. I had the best blood marker sample going down to 164 from 235 and then this week I went back to have my chemo and found I had gone up 24points to 188. I am on second week of chemo so blood work would represent last weeks chemo and not the week off chemo. Could it be the chemo affecting my liver ( I believe it is hard on the liver) and not the Taxol starting to be ineffective?
Thanks for any advice0
