Weekly Taxol for Stage 4
I was wondering if there were any other Stage 4s doing weekly taxol. I know there is a group in the chemo forum, but most of them are doing for the 12 week cycle as part of primary treatment. According to my onc, I'll be doing weekly taxol until something changes, if you know what I mean . . . .
Jennifer
Edited 5/11/14: I stopped weekly Taxol last May, 2013, as my markers were creeping up. It was a very doable protocol. Ended up having done about 44 weekly treatments. It only took about a week after ending Taxol to get most of my energy back. I'd do it again in an instant.
Edited 7/1/17: Just made the post shorter, to make the reading experience for the entire thread easier.
Comments
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Hi Jennifer - I have bone and lung mets and I had 20 weekly treatments of Taxol. My schedule was 3 weekly treatments, 1 week off. Lost 50% of my hair a week after my second treatment. Started off bad, I couldn't tolerate the dexadron in the treatment. But once they got rid of that, I flew through treatments without any problems until about the 16 treatment. Started getting fatique, but it wasn't really that bad. Ironically, I felt better during treatment, than I do now. But it did a pretty good job of shrinking and stabilizing tumours. Good Luck with this treatment, hope you have the same results I did.
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I am on weekly Taxol and my biggest problem is non stop diarheaa. I cannot get that under control. I have had two txs so far.
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Hi everyone
I started weekly Taxol June 1 after progression on Femara, Faslodex, and Tamoxifen. I have found it to be pretty easy. I had some problems with diarrhea and mouth sores after the second treatment. I found that Immodium helped the diarrhea tremendously. Also read quite a bit about the amino acid L-Glutamene taken as a supplement on some of the other Taxol threads. I ordered it in powder form from Amazon.com and mix it with a little apple juice and drink it down - so far no more mouth sores and it is supposed to help with neuropathy which I have so far not experienced.
My hair started to really go after the third infusion, I am pretty much bald but have some light fuzz that is still hanging on. I will have my third week of the second cycle this Thursday, then a week off. My first week off I had a port put in, so this will be a nice break.
I am going to go for one more cycle and will have scans after that and decide where to proceed. Obviously my goal is NED, I hope that's not overly optimistic. For those who may come on who have been doing this a while, I would be interested in hearing how soon after starting treatment you were scanned and what the results were.
Thanks for starting this thread!
Joanie
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I'm doing weekly Abraxane. Abraxane is the same as taxol but in a different formulation. I am tolerating it well. It's been about 4 months and I still have hair. It's quite thin but I had super thick hair so to ME it is noticable but other people just seem to think I have regular hair. I have no eyelashes, eyebrows.......but am doing welll. No real side effects. My whites got too low last week so we skipped it.
I think the only difference between Abraxane and taxol is how the drug is delivered, and so I you don't need a steroid pre-med with abraxane. They give me one anyway since I have bowel problems.
Good luck!
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I have bone mets also. I had 20 weekly treatments of Taxol. Onc took me off because I got nuerapathy in my feet and a large hole in my shin bone that refused to heal. He then put me on Xeloda.
I lost my hair after my 4th treatment. It all came off in one shot in the shower one day.
The taxol worked. My TM's went from over 3,000 down to 11.
Fatigue is another side effect. I was sooooo tired all the time.
All the best to you.
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I'm also doing weekly Taxol (3 weeks on, 1 off), for mets in and behind my sternum. The plan is to do 6 cycles or 18 doses and this week will be dose number 13. I was scanned after 9 doses and the results showed an "excellent response" in the soft tissue tumours behind my sternum and that the sternum itself was stable with no further spread - pretty good news! I've been ok in terms of SEs too until dose 12 when the fatigue really hit me big time. Other than that, the main thing has been hair loss which started during my first week off. I now have some fuzz on my head, about 4 eyebrow hairs and 6 eyelashes. I also get dry, chemo mouth, slight nausea and indigestion for a couple of days after treatment. But I've found it very "do-able" and it's getting good results, so no complaints from me! Good luck - I really hope you'll get great results, too.
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I started out with multiple liver and bone mets. Did taxol three weeks on and a week off for a total of seventeen months before I had progression on it. Benadryl, anti-nausea, and steroids were my premeds. Had severe nausea and vomiting in the beginning...maybe the first month...but then for some unknown reason I tolerated it better and lived very well on it for several months...did not suffer greatly with either neuropathy or fatigue and felt lucky to have been able to milk it for seventeen months before having to switch!
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Jennifer, after all the antihormonals failed, I was put on taxol as my first chemo regimen. I did weekly taxol with bimonthly avastin. I did well on both for almost a year, switching to abraxane after I had evidence of progression. My major side effects with the taxol were the fatigue, generalized pain that varied in intensity and low blood counts...however I also have bone marrow mets which contribute to this. I luckily didn't have any neuropathy or any other SEs that I can remember.
Best wishes with the taxol. I found it to be a very doable chemo.
Cat
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Hi, jennifer,
On weekly taxol (3 weeks on, 1 week off) since Nov 4, so tomorrow is treatment 32. Didn't really fully lose my hair, it has started to grow back, and I am on a biweekly prescription of hairdresser to try to blend the new hair and the old
Fatigue - pretty bad on weekends (I have treatments on Tuesday, and still was working full time through May, so weekends I would recover).
Nausea - not so bad until last week, when I couldn't even keep anti-nausea meds down - Zofran that dissolves on tongue took care of that problem. Doctor and nurses think I got the flu
steroids - hate, hate, hate!!! Have flushed face, neck, arms day after treatment - everyone knows when I have had chemo
Am getting treatment here in StL while I stay with my mom who is in hospice for stage iv pancreatic cancer, they use different steroid - at home, steroid they use (solumedrol) only keeps me wired for one night; one they are using here kept me up 3 days straight last week after 1st treatment here (not solumedrol, but something else - you only get solumedrol if you have reaction to what they are using) - not good since I am trying to help provide care for my mom and get a little fried after 72 hours with no sleep.Neuropathy - I started taking l-glutamine (thank you CoolBreeze:) about 5 months ago, currently 2.5 g per day, and fingers/toes not numb at all. I started at 0.5 g per day, and every time my toes'/finghers start to feel numb, I increase one 500 mg tablet. Study of l-glutamine with high dose taxol (once every three weeks) had folks taking 10 g each day for 4 days o after treatment.
Overall? chemo has not been as bad as I expected - I really thought I would have a new BFF to hug (the toilet)!
Becky
P.S. My doctor at MDA is of same philosophy as yours - I will be on taxol until I have progression or side effects drive me off - why change what is working - I have had clear scans since January (liver mets and recurrent bone mets showed up in October). Local onc giving me treatment keeps wanting me to stop (because I have had 3 clear scans) , but I know that would mean progression down the road, so I will tolerate taxol as long as I can
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Becky,
Just wanted to say how impressed I am with your composure, given that your Mom is ill too. I bow down before you, as the hardest thing in my day is a dog who poops in an editorial fashion (UPS Man = hallway poo. Out of milkbones = stair poo. It's a complex code.)
In awe,
Jennifer
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I second that, Becky. Wanted to respond but just did not know what to say. My mother had hospice care and died of brain mets just two months prior to my finding out about my metastasis. Which was hard too but can't imagine doing both at the same time. I'm sure your mom while she is so ill herself is worrying about you. Nice of you to take the time to describe all your taxol side effects. Hope you have lots of supportive people around you.
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Thank you for the kind words. I was devastated when the cancer moved to my liver - scared me to death. But, then I came here and there were lots of folks who were dealing with liver mets and had been for a long time - that gave me hope - a post on here made me insist on a biopsy of the liver so I would know if I could go back on hormonals or if that part of the adventure was now over.
I have made the decision to take full leave come August 16 from school, apply for disability retirement, then apply for social security disability. My mom's illness ( stage iv pancreatic cancer with liver mets and pleural effusion diagnosed May 17 - thought she had bronchitis for a month, but it was a developing pleural effusion) is moving very quickly. She is declining quickly, but asked the hospice nurse yesterday when the pain would start. Thus, my prayers that she be comfortable and have no pain are being answered. Her illness and mine have put a lot of things in perspective. When my youngest called as I was in baggage claim at the airport last Sunday to give me her latest news, i took it calmly, hung up, found my suitcase. Then I called her back and asked 'did you really just tell me that your car had been stolen?" Unfortunately, the answer was yes. But it is a thing - things can be replaced and that is exactly what I told her - at least she was safe and unhurt, that was most important.
In this life, I have one chance to do this right - being here with my mom is what I need to do. When I get home, I am fully focusing on me - diet, exercise (building strength in arms, legs so that when I get closer to the end, I will still be able to help myself stand up and transfer and get on the commode). Very hard to watch my mother's strength decrease, but maybe the motivation I need to make my end much easier on my family. I knew I didn't want to die at my home, but now I know that I want to be out of the home and cared for in a facility where the only role/function my family needs to play is to be there and visit with me and talk with me and comfort me. Meeting my daily needs will be responsibility of professional caregivers.
sorry - that was probably too much information, I just got back from chemo and am rambling under the influence of benadryl . . .
Becky
P.S. I turn 55 on Thursday - Mom had me at 5:19 in the morning. Hoping we will get to celebrate that birthday together - I know I will be awake because of the steroids I had today.
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Hope you get to celebrate it together too! And thanks for mentioning your age...was going to try to see if I could find it on your profile if you hadn't mentioned it. I am 54.
Not too much information. I am interested in your thoughts...especially about not wanting to die at home. That was my first thought too...I would rather be in a hospice facility so there is someone there 24/7 to care for my needs. I would be uncomfortable with my kids having to worry about it. Even though I know hospice provides aids in the home..in my mother's case it was only a couple hours a day. But recently I was thinking that I would almost rather be at home so I can see them as much as possible and the nearest facility is almost an hour away. It might be an option for a short time in one of the local hospitals...not sure.
Now I'm rambling. Can use the steroid excuse but no longer on Benadryl....boy do I miss that!! Loved that intravenous Benadryl effect!
You seem to still be pretty physically and emotionally intact despite everything you are going through....as am I....at least that's my personal opinion
so we're probably a long way from hospice with lots of life left to enjoy. Seems like your doing that. And Happy Birthday by the way! 0 -
I'm chiming in on going for off-site hospice when the time comes. We have a good one about ten minutes away. Hopefully my son will be older (he's 13) when it is needed, so he'll be able to drive back and forth.
I really don't want to be a constant reminder when I am failing. I think it will be good to have 24/7 care, and my husband and son can come visit me bunches, but have some respite from the whole process when they go home. It will help them to get used to their new lives without me.
Plus, let's be honest. Dying is hard work. If you have your family around the whole time, it's got to be exhausting. You know, trying to be brave and cheerful, and all that. Not that I would, mind you. I'll go down whinging!
Jennifer
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All good reasons, Jennifer. Part of me also realizes I'll get better round the clock care offsite with nobody resenting it or resenting me! And yes...it will be easier for family to wean off us that way.
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4 of us 5 kids are here at home with Mom now. The youngest had to leave to go back to work last Friday, but is flying in late THursday night for the weekend. We had a great picture taken last Sunday of my Mom surrounded by the 5 of us (our dad died at age 50), so Mom has been our steel magnolia for the past 35 years. What a gift we have been given to have her with us so long!
Becky
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Yes it is a gift indeed to have a "steel magnolia" mom. I had one too. And there are also five of us and we all live nearby so it was easy to keep her in her home with hospice care and we all took shifts. My mom and I were very close and I think because of that people expected me to fall apart without her...but for some reason I think it made the loss easier..no guilt, no regrets.
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Taxol, 3rd week of ?:
I'm having some discomfort in the mets areas after the steroids wear off, but Oxy 5s are handling it. 3rd day after chemo is turning into what we are calling "crash day". I'm tired and loopy, but my husband and son are very helpful. Plus, I get the remote for the whole dang day.
Too soon to tell if it is working, but my shortness of breath is much less. Still walking about a mile and a half a day, in addition to gardening. Light gardening - a lot of hose moving, but I haven't mulched out yet. The bags of mulch taunt me. Keeping up with the weeding though.
Hope everyone is doing well and surviving the heat. I can't imagine how the Southern states are doing. We are dry as heck here in Upstate NY. Dry on clay soil is dry indeed.
Jennifer
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hi,
i am on my 21st week next week, i feel really well no side affects at all, plus good responce in april to my lung mets, and due another scan on the 18th july, hoping for more good news.
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Back from Taxol #4, along with monthly Zometa. All my counts are staying good. I've lost some hair, but still have (I'd say), two-thirds of it.
I started some muscle cramping and hip pain this cycle, but it resolves when I get up and move around.
So far, so good.
Wishing I could kiss Bouncing Bettie's ring,
Jennifer
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How is everyone doing? I had Taxol no. 14 today and slept for 4 hours when I got home, which is a real shame as it looks as though this may be the only week of summer we get in the UK, and I just missed a day of it at the chemo ward, then snoring in my bed!!!
It should have been no. 15, but I was given time off for good behaviour last week ;o) to go to my step-daughter's university graduation. My onc is happy for me to completely miss out that one dose as she said it won't make any difference either way, but I don't know whether I should ask for her to tag it on the end... Or am I just being a glutton for punishment?! Any thoughts?
I've also got my appt. through for the end of tx CT scan on 24th August, 2 days after I'm scheduled my last dose. So I've started the countdown now - week off next week, then into my final cycle (for now at least)... Wonder what awaits me after this?!
Hope you're all doing ok. Take care xx0 -
Angelfalls,
Sorry you missed one glorious day of summer. We've had a bellyfull of summer already here, and would love some fall rain.
What's is your taxol plan? It sounds like you have a finite amount scheduled (last dose), and then assessment?
I go in for #5 tomorrow, but have myself convinced I'm having progression. Follow the twisted logic: When I was recently on Tamoxifen, my abdomen felt gassy. I had progression. I'm feeling gassy now - therefore I must be having progression. Does it count that my son brought a stomach virus home? Noooooooooo, it's surely progression.
Will I ever be sane again?
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I've only just found this thread and it's interesting - I'm in the uk and I had weekly taxol when they first found my secondaries (liver) in 2009. I had 8 cycles, so 24 doses. My scans were good and TM's dropped so they stopped. Onc said he wanted to 'save it for later'
Since then I have been on xeloda, havalan, exemestane and faslodex, but had progression each time (bones, then brain then lungs). Now my liver function is really bad - jaundiced and feeling really unwell, so I am back on taxol again. I am on 2nd dose of 1st cycle and my liver function is already a little better.
Has anyone else gone back to taxol after a break? Did it work and if so for how long?
As far as SE's are concerned I didn't have too much trouble the first time but I am really struggling this time. I am already on a reduced dose so I don't want to make a big deal of it at the hospital in case they decide to stop it. I don't think it's anything I can't cope with just very, very tired even with the steroids. Tiredness could be because of Gamma knife that I had 3 weeks ago (just before starting taxol) when they found new brain mets. The good news just kept coming in June/early July :-)
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Melissa,
So sorry about the fatigue. I know a lot of the ladies that have had the gamma knife have reported that as a big side effect.
I am very curious to know how the taxol treats you the second time around. And am hoping you have an easy ride with great results.
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Jennifer - My plan is 6 cycles (so 18 doses), with a CT scan after cycle 3 (had great results), and cycle 6. Then depending on what this next scan shows, I'll get part 2 of the plan... I'm hoping it'll be another anti-hormonal, as I got almost 5 years of NED out of Arimidex with relatively few SEs. This would mean me being able to go back to work, too, and we really need the money! But I couldn't even contemplate work while on chemo. Hats off to those who manage it - they're made of stronger stuff than me!
Taxol can irritate the stomach (I get minor indigestion for a few days after each dose), so I hope the gassy feeling is related to that and not to any progression. Will you ever be sane again? You're already ahead of the game if you were sane to begin with! ;o)
Melissa - I think I recognise you from the UK site! There's also a thread there (called Paclitaxel Pixies), that you might want to take a look at. I'm sorry to hear of your progression on the other drugs and hope that Taxol will get you right back to where you want to be and quickly. It certainly sounds like it's working its magic already. I hope the fatigue from the Gamma knife resolves soon and you don't suffer with any further SEs. It's interesting and encouraging to hear from someone who's doing the same tx for a second time.
Hope you can all have a good weekend. Take care xx0 -
Reporting back from Taxol #6.So far, so good. I haven't been crashing as badly on day #3 after treatment, but do lie down a lot on days # and #4.
I have been losing bunches of hair, but still have enough in the crewcut to achieve the semblance of hair. I hit it with some dry shampoo to hide the shiny pink scalp, and off I go.
I have been gaining about a pound a week so far. I blame the pre-med steroids. I'm obese, so this is not a good direction to go in.
How is everyone else doing? Are counts staying up? Are the steroids making you bright eyed and bushy tailed at 2:30 in the morning (they are me)? Are you getting any joint pain SEs from the Taxol?
Jennifer
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Jennifer, when I was on taxol I managed to convince the oncs to stop the steroids so I had my last few infusions without. I was fine, just incredibly tired on infusion days, but then I bounced back really quickly. I slept better and avoided the highs/lows and depression that seems to come with them. Also my acne cleared up.
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My wife was switched to weekly Taxol with a one week break every fourth week to do a CT to gauge progression/lack of. She was switched to it after Xeloda failed at 2 months. Her hair lasted until just after the third infusion and the fatigue is normally hitting worst Friday night/ all day Saturday (infusion is Wednesday morning). She told me she is good with the being bald again as it makes getting ready for work. She usually crashes as soon as we get home from work on Friday. Nausea has not been too bad. She may be taking a break after the next three weeks (even if the lungs/chest wall does not progress) so they can treat her brain mets (again GammaKnife round 2). She has had some pins and needles the last couple of days in the feet but we are meeting with onc early next week to address.
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I do get tired without the steroids, but I'm still working to lose any of the 40# I gained from them. I was a very angry person while I was on them. My DH is willing to do a lot more of the housework so I can avoid the steroids.
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I'm headed towards weekly Taxol #7, and just had a visit with the Onc's PA, for the ol' check-in.
So far, no real neuropathy. I'm baldish, with about the same amount of hair as a new born baby. But, my TMs have fallen from 2600, to 1500 in a month's time. May they continue to decrease!
I'm having some muscular pain in the lower back/hip region. Very manageable with pain meds and heating pads.
So far, so good.
Jennifer
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