Weekly Taxol for Stage 4
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Thanks for the info moth. I just saw this for some reason, otherwise I would have replied sooner. I wonder why the doctors at times seem like they don't want to admit to side effects? Weird.
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Coming on to say I'm still doing Taxol for Stage IV MBC, though it's been reduced to every other week. My hair is coming back, though my hairline is higher than it has ever been. Some eyelashes coming in, too. I can feel eyebrow hairs as well, but the color is so light you can't really see brows. I draw them on with an eyebrow gel and brush when I want to look more normal. Fatigue, shortness of breath, alternating burning and numbness in my feet, and the ever present joint pain are my main symptoms/side effects.
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I'm still on Abraxane every two weeks on a trial, my one year anniversary is on Monday. My hair is coming back in but my eyelashes & brows are not, but they haven't been there for a while now. Just waiting for CT results to see if I'm still on the trial. My TM's were good until 3 weeks ago when they almost doubled, but we are keeping our fingers crossed that it's just some weird anomaly.
Ninetwelve, I had severe SOB and MO put me on 2mg of dexamethasone, honestly, it gave me my life back, tho I do have to take an ativan at night to be able to sleep, but she says I should be able to wean off that when I don't need the dex anymore.
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Thanks, gg. My onc thought the SOB could be related to my platelet levels. It's not as bad as when I had fluid all around my right lung. Just sometimes noticing that I don't feel like I've been breathing enough at rest, or huffing and panting as I take groceries up the stairs and make three trips doing it.
Yesterday I took my dexamethasone prior to paclitaxel and decided to look at my tax returns again. Suddenly the math became clear. There are some good things about the steroids. I feel pretty lousy for a day or two when they wear off, though. Depressed and all my aches and pains come back.
I was encouraged by my most recent scan in March, as it shows general improvement and no new growths, and my tumor markers are down in the 30's consistently. Six months of Taxol have not been as bad as I feared, and I still think I've had fewer side effects than my time on Xeloda.
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nine-twelve,
wow I wish my TM's would drop back down to the 30's, last ones were up around 730. I still huff & puff when I'm digging in the garden or the like, but I was having a hard time standing in the shower so that's why the daily dex. We tried 1mg & it was like I wasn't even taking it. My platelets get low, I get nose bleeds fairly often now which is a sign but as long as it doesn't happen in front of anyone or heaven forbid out in public I can live with that.
Xeloda was pretty bad for me too. Not sure what my next line would be if I'm off the trial, results of CT on Monday, fingers crossed as I"m the last patient on it & except for the neuropathy & SOB it's do-able.
good luck on continued success with taxol. cheers, dee
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Hi, Dee. I'm keeping my fingers crossed for you that your CT scan shows some great results!
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surprisingly I am still stable on the trial. I won’t get my TMs for a few days but for now, I’m still getting abraxane and the trial drug. The trial is closed and I am the last patient on the trial in Vancouver. The trial neglected to get the drug navigator to get funding from the drug co, so cycle 14 for now. Next CT in 6 weeks.
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Hi, I've been allowed to change my Taxol schedule to two weeks on and one week off for now. It feels much better knowing I don't have to do a third week. i'm still at 85% although my MO offered me 100% now that I am not doing taxol every week. I have the same energy issue as others here, not being able to walk my dog too far, stopping during the walk to catch my breath. Glad to hear it's probably Taxol related and not some other disease. No joint pains but I'm taking frequent naps, gaining weight, depression does hit for a few days after the decadron wears off, but all this is doable given the alternative. Markers down to 62 (from over 2200), PET clear but a new one next week. Don't trust the sneaky Lobular cells. What is SOB? Nina
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Nina, SOB = Shortness of breath
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I just started Taxol on April 19. Today was to be my 3rd infusion. I’m on the 3 on 1 off schedule. My ANC after the first treatment went from 4.8 down to 1.3 - so I was told I’d be getting 80% today. Well today my ANC was .6 - so no infusion today. I’ve done several chemos, both oral and IV, and never once had to skip treatment. I wasn’t thrilled about doing Taxol anyway, since I’ve done Taxotere twice in the past. My MO practically shamed me into it by telling me she has a 90 year old patient doing fantastically on weekly dose. I’m sure she has a full time caregiver also, while I’m doing this completely on my own, so not really comparing apples to apples but whatever. Thanks for making me feel like a total wimpy failure Doc!
I don’t see my MO until May 17, so hoping she will call and discuss a plan. I’m running low on options. I’ve already lost about 50% of my hair, and will probably lose the restjudging by the “feeling” in my scalp.
Maybe I could squeeze a little more time out of this treatment with a different schedule or possibly neupogen. I hate committing to a treatment, then having to change so soon. It really messes with my mind and emotional state. 😡
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I needed the wbc shots and a dose reduction to make it through taxol so don't think you're wimpy. For some of us that's just the way it is. Hope you can find a way to stay on it and see how it's actually working.
ps I did 9 months of taxol and then switched to abraxane for the next 12 (also dose reduced but didn't need the shots for that one - it seems to work similarly but doesn't hammer the wbc's as hard) so I got 21 months altogether on a taxane
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Thanks moth- maybe Abraxane is another option to look at. I get the feeling they start with Taxol for insurance purposes and only switch if problems arise.
I noticed my diagnosis and treatments have been messed up since the “upgrade”. Not sure I want to take the time to fix it until I know it won’t get messed up again. 🙄 Also thinking that “work in progress” pop up window has now become a permanent addition to the site.
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Hi all,
I am a metastatic breast cancer patient, after 12 years remission from ER+, PR+, HER2+ my cancer came back as ER-, PR-, HER2+. It is a mass in my chest, in my lymph nodes of my right armpit and a tumour on my pancreas which they suspect is the breast metastasis and not a pancreatic tumour (please God). However both my breasts are clear.
I had two questions,
First, my treatment is:
Immunotherapy (Pertuzumab and Trastuzumab) and chemotherapy (PACLitaxel) on the first day of a 3 week cycle, followed by chemotherapy (PACLitaxel) on the next week of the cycle and then a break week [after 6-8 cycles it'll be just immunotherapy (Pertuzumab and Trastuzumab) for as long as I hopefully stay in remission], but I was looking at the HSE guidelines (Irish governmental health body) for women with my relapse to prepare myself, and they say that chemotherapy (PACLitaxel) should be given weekly in each cycle, i.e. no third week off (Regimen Code: 00507a).
I asked my oncologist and she said the regimen was only a guideline and that everyone in my hospital gets the same protocol as me, i.e. everyone has the third week off.
Has anyone here experienced this? 2 weeks on and 1 week off? At the end of the day she is the oncologist, but I do see in the academic studies that it's chemo every week of the cycle, without any weeks off.
Second, as my treatment is taxol for 2 out of every 3 weeks (with trastuzumab and pertuzumab on the first week with the taxol) how can I protect myself from neuropathy (pins and needles)? I am currently following the advice given by moth and place a bag of freezer ice on my feet before, during and after treatment, and likewise put cotton gloves on my hands and dig those into a big bag of ice, but what else can I do? Can I take a vitamin or something or will that worsen things?
My team said I would have to dose reduce/change drug if I got pins and needles and I really don't want to do that, especially as I already feel I am not on enough chemo,
Thanks for all your help,
All the best,
Bernadette
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Hi, bernadetteire, welcome to the club that no one wants to be in. I'm sorry that your cancer came back, but I'm glad you are here. We have lots of forums. Some are treatment specific, like this one, which doesn't get a lot of traffic. Other forums where you may get more responses include cancer type, so maybe in the HER2+ threads your question would get more views.
I've been getting taxol twice a month for four months, after three months at 3x a month, and the scans show it's working. I have some tingling and numbness in my feet and my providers are monitoring my symptoms. I don't know if it's possible to avoid all symptoms of neuropathy, but I'll let others try to answer that question. There might be things that can be done, but if there are, my oncologist doesn't know about them. I agree it can be frustrating when you want so badly to do the right thing to stay on top of medication side effects, but there is (apparently) nothing that the professionals can recommend.
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Hi Bernadette, my taxol was 2 weeks on/1 week off. I did it for 9 months & then switched to its sister abraxane.
Good icing - I swapped my ice packs every 20 minutes & make sure you start about 5 min before & keep it going 5-10 min after will go a long way to lowering risk of neuropathy.
I ended up doing taxol or abraxane for 21 months. I have mild neuropathy but nothing that interferes with movement or touch etc. I just need to keep my feet and hands warm. Even in the summer, socks are almost always on.
Vitamin B6 and the supplement l-glutamine are sometimes recommended to lower risk of neuropathy. check with your oncologist if they're ok for you.
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Moth, 21 months on taxanes sounds great. I've been on taxol, now 2 weeks on, 1 week off at 85% for 2 cycles (down form 3 on 1 off). Started every week in November. I've had a great resonse, PET scan NED, markers dropped dramatically to 59 from 2200 (CA15-3). Did your MO ever offer you a 3 month vacation from the drug? Mine recently did and I was surprised- is there any reason to stop a drug that is working? Side effects are there but I can live with them. He said it would reset my body back to no side effects. It was only one suggestion, the other was to continue as is or to reduce the taxol. I don't have any mutations that will work with newer drugs so I'm hoping this will last a long time.
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ninaca, I wasn't offered a break. I'm triple neg & I think breaks for us are very dangerous
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Moth, if you happen to see this, I am hoping your liver numbers are cooperating so you can start your new chemo today. You have been on my mind and I am sending all my healing thoughts your way.
Ninaca - it’s good to hear you have had a great response. I hope it continues. My MO has not mentioned a big break, she just said until it stops working or side effects are unmanageable. Interesting how it’s different for everyone. It’s like we are at a point where they are throwing spaghetti to the wall to see what sticks
So I seem to be establishing a pattern here. My second 3 week cycle ended the same as the first. Went for my 3rd infusion on Tuesday, but ANC was again .6 so no treatment. I’ve already reduced 20% so don’t want to go lower if that is even an option. This time they gave me a Ziextenzo injection - which is a Neulasta bio similar. They told me to come back in two weeks, which would be the start of my third cycle. I don’t know why, but I got quite emotional as soon as I got to my car. Cried like a big baby. Doing the why me pity party- “Why doesn’t endocrine therapy work for me like it does for others? Why can’t I get through 3 weekly taxol like others?” Boohoo yada, yada yada. No idea where that outburst even came from. I am wondering if I should just ask my MO if I can do 2 weeks on 2 off without the jab and see what happens. My CEA did go down from 2600 to 1300 so I don’t want to quit yet.
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Berndatteire,
My treatment is the same as yours: immunotherapy and chemo, 6 cycles consisting of 2 weeks on and 1 week off. First week immunotherapy and chemo, second week chemo only and then the third week off. My meds are a little different, pembrolizumab and nab-paclitaxel. After the 6 cycles, just the immunotherapy. I finished my 6 cycles right before Thanksgiving and have been on the Immunotherapy only, since then. All together, I have been on this treatment for the past year and I am doing extremely well on it, Praise be to God! I have followed Moth’s advice on icing to keep the neuropathy at bay and it has worked for me. Best wishes andBlessings to you!
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Hi sisters! Originally diagnosed in 2015, now I’m back with MBC in liver, sternum, hilar node, mammary gland lymph nodes and retroperitoneal area. (A bit of an overachiever 🤦♀️) anyway…4 rounds of weekly taxol done, hair is gone, but mostly easy. Having issues with my skin tho! Lots of red spots all over my arms, neck and a few on my face. Onc says it’s from the taxol. Can’t imagine how it’s going to be at the end of 12!! Any suggestions? Been using hydrocortisone, but definitely open to anything else that might help!!
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catfurr— when I was on Taxol for original diagnosis, I developed small red spots on my forearms. MO sent me to a dermatologist who told me it was the chemo killing skin cancers that hadn’t made it to the top of my skin yet.
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Haha Dodgersgirl and catfurr- if it is killing little skin cancers is that like getting a 2 for 1 deal? I don’t have red spots, but I do have itchy bumps on my trunk resembling acne. It’s not too bothersome though.
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myshadow— my dermatologist was pleased to see my small dots. It was weird
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Well it’s one less thing to worry about knowing it’s effective on those skin cancer spots. We have enough to deal with
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Myshadow- My doc said 2 weeks on 2 off of Taxol was not a good idea. I felt lucky to work down to 2 on and 1 off, I was not happy when week 3 came around when I did 3 on 1 off. But then I did weekly taxol for 3 months (knowing it was important and I needed the drug to work) then doc gave me the 3 week on 1 off routine. I'm on it until it doesn't work so its seems they have success with weekly first, then ease back to reduce side effects since we have to tolerate it for a long time. I'm still at 85% but don't feel the need to go stronger (100%) since markers and scan are doing well. MOth- I agree. taking a vacation will only give it a chance to come back again. I asked and I was told there are no studies that say one way or the other. I'm thinking of getting another Doc opinion, someone else's experience.
My most irritating SE at the moment are my eyes. They burn a lot and I find myself washing them with distilled water, and using drops often. while I have neuropathy in my feet (I do ice hands and feet during chemo), they feel so much better than Xeloda feet I don't feel I have the right to complain. It just throws me off balance a bit sometimes since my toes are numb.
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Ninaca- I hear you on the eye burning. My eyes have a slow steady drip at the outer corners that have made my eyelids red and irritated.
Last week was infusion #1 of 3rd cycle. My ANC was good, but my platelets were 64. 🤷🏻♀️ My MO reduced the dose to 60% and said she didn’t think I would be able to continue this treatment too much longer. —- So fast forward to this week my platelets went back up to 133, just a bit low, and ANC was still good. She seemed quite surprised and said she had prepared to discuss what my next options were which was what I was expecting also. I normally don’t see her weekly, so I knew she was thinking along those lines. She bumped me back up to 80% and I did my 2nd dose. Hopefully I’ll be able to get the 3rd one next week. She doesn’t think keeping me at 60% will be effective and I agree, so we shall see what next week brings.It’s so mentally taxing not knowing from week to week what will happen. My CEA marker went down again so I’d like to stay the course and not worry about “what’s next” for a while.
I’m thinking about Moth and hoping her liver and her spirits are doing much better.
Putting out good thoughts to all of you!
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Anyone try acupuncture for neuropathy in their feet or know of anyone who tried it? My nurse suggested it so I got a referral from my MO. I have not heard of anyone using this successfully. I've been on Taxol now for 8 months (now 2 weeks on one week off) been good for my markers still. No pain in my feet just numbness which does affect my balance. tonight I'm on my decadron high so still typing at 2:30 AM . thanks
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ninaca, i answered your question on the other thread.
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Thanks gg7 for answering my question. I'm writing on this thread because this thread has long term users. My insurance will pay for it so I am not out of money, just thought I would try it but realized I have not heard of acupuncture as a successful neuropathy remedy from this group. I'm trying to get more sensation in my feet to help my balance, not relieve pain. The TENS machine looks interesting and I've heard of neurontin also being prescribed. Hope your being off nab-pac resolves your feet issues. What are you on to next? Good Luck.
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ninaca, my MO tells me that some have had success treating their neuropathy with acupuncture, it just didn't work for me. Also the TENS machine can be a hit or miss. If you look at studies for chemo induced neuropathy as opposed to diabetic neuropathy it is a whole different ballgame. My balance & the burning in my feet is the worst. I get up in the night about 3 x to change my ice socks, it's the only way I can get any sleep.
I am staying on the "trial" drug tomivosertib which is no longer on a trial but using it as a mono therapy until my next CT scan. My TM's dropped by 20% last week (always have been accurate for me) this is after being off chemo for 4 weeks. fingers crossed as I am on a half dose.
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