Weekly Taxol for Stage 4
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Hi Sylvia
Thank you for taking the time to respond. I get that with the lower activity level. However I still don't understand this quite. I don't eat more than usual on normal days - and I water fast 3 days a week. (2 days before taxol and 1 day after). In the first weeks I did loose some weight and I was a little afraid of loosing too much. However after the 3rd dose the weight loss stopped and now it going up rapidly.
Could the taxol be totally destroying your metabolism?
Good to hear that you seem to be stable. I wish it will last for you for at very long time!
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Well, I'm off Taxol as of Monday. Scan from last week showed most liver mets have increased in size and also showed a new, small lesion in right lung. On to Ibrance and Faslodex starting next Monday.
Lisbet, I'm sorry I didn't get back to you earlier about my thoughts on Taxol and metabolism. I've been worried about the upcoming scan — really knowing that things were going to change. It may be that Taxol changes your metabolism but to me it was more a matter of fatigue. Too tired to eat, too tired to move and too tired to care.
I hope for a long Taxol run for all of you!
Sylvi
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Ars68, so sorry to hear of your progression. I hope that Ibrance/Faslodex will do a lot of good to you and give you a long run. I started out on Ibrance/Faslodex (125 mg) - that made me extremely tired. The dose was lowered to 100 mg - and that was great. I cannot say that I had any SE - apart from lowering my appetite and a little hairloss. I found that wonderful because in the three month I was on it I shed almost all the kilos that had piled up on me while on Letrozole (about 2 years) - and all evils of Letrozole disappeared. Unfortunately it didn't do me any good - I think I'm finished with the anti hormones treatments. So different our cancers behave! I hope it will do the trick for you!
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Hi all! Checking in, hope Taxol is treating you good. I'm heading to appt to get CT scan results after 8 weeks on Taxol. Crossing fingers is working magic in my lungs, and that my liver Mets stay dormant. So nerve wracking that first scan after a new treatment.
Take care all!
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I haven’t been on this site in so long! I had recurrence this time last year and have been on Taxol every week since. I have a question about hair. My hair started to grow back and is short but lately I’ve noticed the top of my scalp has been sore like when I first started chemo and the follicles are opening up. Then for the past few weeks ive noticed my hair is falling out again! Not in huge clumps but definitely falling out. No increase in dose or anything different. I am on Herceptin and Perjeta as well since I’m her2 positive. Has anyone else had this happen?
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The nurses distributing the taxol told me at start up that I would loose my hair - though maybe not all of it. Many keep their lashes and eyebrows. And then after a while the hair would start to grow back only to fall out again later.
I have now after 12 doses lost all my bodily hair - unfortunately also eyebrows and lashes which make me look sick. But the hair on my head has started growing back in patches. So I guess it's quite normal that it will start growing and then fall out again after a while.
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Hi all! Today I start Taxol, after 18 months of Ibrance/Femara/Faslodex and Xeloda. I was de novo upon diagnosis so this is the first IV chemo and I’m more nervous about this than I expected.
I have read almost this entire thread and I feel well armed with information so thank you to everyone who has ever posted. I have decided it is time for me to pay it forward a bit, and look forward to being able to share my experiences with everyone.
Su
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Interesting about repeat hair fallout. Mine has started falling out again, too. I've been on weekly Taxol for 13 months now. I lost it all at first (January 2017) but around October it had started to ramp up from a little white peach fuzz to a nice start toward a silver pixie for this summer. Then last night I noticed hair all over the inside of my sleep cap. Today whenever I bend over and run my hand lightly over my head, it looks like rabbit fur flying.
Bummer.
Anybody know why this happens?
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I was told that the chemo kills all the fast growing cells in the body - these cells are the nerves in the extremities - hand and feet, hair - and cancer cells. In October 2017, 14 days after (and 2 doses) of starting taxol my grey/brown hair started falling out. I then had a hair dresser shave my scalp down to 1 cm long. After a month the hair stopped falling out and started growing again - it's now about 6-8 cm long so it has grown quite a bit. I was so pleased that I had not lost my eyebrows and eyelashes, but one month ago - late January both eyebrows and eyelashes fell out too - they are now completely gone. (I recently had eyebrows tattooed and happy about that, because that means I still look rather normal with a wig and eyeliner). However, my hair is still growing - in patches though. It's like you describe it - totally white and like wool. I think the body accustomizes to the chemo and as the taxol accumulates and builds up in the body it will start falling out again. I don't know if there is a more scientific explanation. Maybe!
Anyway, I will not be sorry when/if it falls out again - this white patchy wool is so totally ugly!
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Mine is still shedding pretty fast. A tidy pile of it accumulated on the shower floor yesterday which brought back bad memories of the first fallout a year ago. I wonder if I will be totally bald again here in a few days. Stupid cancer!
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My new hair is white blonde too, but I was one of those people whose "gray" hair looked blonde (no one could believe I didn't dye it), so this may be my natural color. My eyebrows are back and my eyelashes are about a 1/4 inch long. Since my hair is such a light color, I had to try putting on mascara once I could feel a little fringe just so I could see how long they are. They look ridiculous with mascara right now!
But the taxol has caused a side effect that I haven't seen anyone else mention, and although my doctor insists that it isn't from the chemo, the timing is too coincidental and I'm going to ask him to take me off taxol because my QOL is less than zero right now. My apologies if this TMI for people who get grossed out easily.
A few people have mentioned diarrhea for a few days after an infusion. After #9 I had uncontrollable explosive diarrhea for a couple days and we chalked it up to a stomach bug because I had gone out in public for the first time in months to a crowded restaurant during cold and flu season. When it happened again after #10, they put me on a heavy dose of antibiotics to "clear up the bug". I'm not talking about a few times a day, this is every 15 minutes or so, all day long, for days at a time. A good day for me is when it only happens 10-12 times in a day. It always clears up a few days before my next infusion, and then within 12 hours of my next infusion it starts again, each time more severe and lasting longer. #11 I was still on antibiotics so I was trying to be patient and give them time to work. #12 the doctor told me that I should take probiotics since the antibiotics most likely messed up my gut.
After #12 I had a month long break to get my quarterly scan (fantastic results!) and give my body a rest before starting up again, and I started the probiotics. When there was little improvement after 3 weeks, I read that a too heavy dose of probiotics can cause similar problems so I stopped the probiotics, and the problem cleared up. Completely. I was normal and felt good. I was excited to finally start getting my life back on track after 5 months of hell.
Based on my scan results, my doctor added Herceptin and Perjeta to the Taxol and now every 3 weeks (so this is my last post in this Weekly thread). Once again, within 12 hours of the infusion the uncontrollable explosive diarrhea started again, even worse than before. Some days I would go through 3 changes of clothing in the first two hours of waking if I dared step away from the toilet for a few minutes. I couldn't sleep through the night without having to run to the bathroom. And whether it was due to the addition of the Herceptin/Perjeta or maybe they forgot to give me my anti-nausea meds, this time I was vomiting too at the same time. It was constant around-the-clock for 8 straight days, during which time I couldn't eat or even drink (a few sips of water would cause unbearable pain and send me straight to the bathroom, and thanks to my changing tastebuds, sports drinks with electrolytes tasted like pure vinegar). Imodium is no help at all. After 8 days it slowed down a bit and I could finally start drinking fluids and eating small meals. Today is Day 14 and the first time I've had a fairly normal morning, although I still have some pain and I can tell the problem isn't completely gone yet.
I don't care that my doctor insists it isn't the Taxol, the timing is too coincidental in that happens within hours of an infusion every single time and it gets worse with each successive infusion. I've spent the last 3 months of my life chained to my toilet, I can't leave the house, I can't go out for a walk, I can barely function a large percentage of the time because I'm so weak and exhausted. Given that I was originally told I only had a few months to live and I fought so hard to get back on my feet, it is incredibly frustrating and heartbreaking that I was making such good progress until this started, and truthfully this is no Quality of Life. The Taxol gave me incredible results as far the tumor and mets are concerned, but I've reached the point where I just can't do this any more. I don't want to spend what little time I have left sitting on my toilet and wishing I was dead.
Next week when I go for my next infusion, I'm going to ask him to drop the Taxol and see how I do on just the Herceptin and Perjeta.
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Uhhh, LoriCA! That is awful! You have really been through the ringer. I so hope you will get a reprieve from these issues. It sounds to me like you should have been taken off Taxol months ago. Clearly it does not agree with your system!
I know you said this is your last post here, but please post again and let us know how you do when your regimen changes. We will all be curious to know. I see no reason for you to feel like you need to leave the thread. We need all the experience we can get on this thread, and it moves slowly. Please feel welcome to stay!
I am so glad that you at least got some tumor response from Taxol. You sure paid a high price for it, though. Here's to better days ahead!
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Thanks lulubee. Yesterday was Day #16 and my first "normal" day, meaning just dealing with all of the other wonderful side effects of these treatments haha! Funny how everything else is just a minor inconvenience to me now (fatigue, bone pain, bloody nose, etc).
I was actually handling the Taxol very well in the beginning. MO and nurses were surprised that my blood counts stayed so good for the first 8 infusions, and I had minimal side effects that I didn't mind dealing with. I actually looked forward to chemo day each week because I felt so good from the pre-meds for a couple days. I had one "crash day" each week when the steroids wore off, and the rest of the time I felt okay. It wasn't until #9 that I had any problems (and my blood counts were affected at same time), and it just continued to get worse for those last four doses.
I'm sure the extreme severity this time is because diarrhea is also a common side effect of both the Herceptin and the Perjeta too, so adding those two drugs just added to my original problem. And now I'm on a 3-week dose instead of weekly, plus this was the load dose for the H&P. Just too much for my body to handle. I have a consult with MO next Tuesday before my infusion, we'll see how it goes.
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I'm a little puzzled about the steroids you get before chemo. Do all of you get steroids with the chemo? I had the steroids 2 times in the beginning but as I didn't have any allergic reactions to taxol, it was discontinued. Now I only get salt water and taxol. So far my blood counts have been fine (had 14 infusions).
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14 months for me and yeah, I still get steroids. I would love to skip them. I got the dose cut in half after the first infusion because I hated the crash two days later.
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I am going on 9 months, still get steroids but don't take them the 2 days after. Any.more Thinking g I need a dose reduction,. My lower lip is numb, sinuses seriously plugged but nose isn't running, that ear is acting funky, some tingling in hands and feet, oh and no taste buds left.. I go every 3weeks, do I get a huge dose at a time., this cycle I feel like I never recovered and it will be chemo time again orn Thursday.
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My steroid dose is infused as a premed. I get 5mg, which is considered a half-dose.
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Strange with you getting the steroids if you're not allergic to taxol. Maybe you should ask about it. They are not vitamins, and I was told that I would only have the steroids if they were absolutely necessary because they are so bad for the body.
- or maybe it's because you get it every three week instead of every week?
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lisbet, I think the steroids are just a standard pre-med here in the US because of liability issues and such. When I have asked about skipping it, the answer I get is always about their fear of having patients develop a sudden reaction to chemo. It does happen sometimes. I suspect it's just easier for them to dose you with dex on a "just in case" basis than to have to deal with a patient going into an allergic tailspin in the chemo chair. But I would sure like to skip it-- it IS hard on the body.
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So, my oncologist did agree to let me skip the Taxol this time (just did the Herceptin/Perjeta) after making sure I understood that it was very much against his better judgement. He still didn't believe that my problem was due to the Taxol, but agreed to be open minded to the fact that I might be the one person with a rare SE that no one else had experienced. My husband attended the consult to help reinforce just how severe the problem has been. Sure enough I had no problems this time. If the problem returns at any point during the next two weeks, I'll agree that something else is causing it.
The big concern is that I have two monthly doses of Taxol remaining to complete the entire course (12 weekly, then 3 monthly), and he's afraid that if the cancer starts growing again (I have extremely aggressive IBC), that it will be resistant to Taxol. On the other hand, my reaction to Taxol has become more severe and longer lasting with each subsequent infusion. I really want to complete the entire course, especially since I haven't had a problem with neuropathy and Taxol has been a bit of a miracle drug for me, but I'm not sure I can psyche myself up for another two months of that agony and humiliation, and I'm afraid of possibly doing permanent damage to my GI tract.
I'm hoping that a few weeks of feeling somewhat normal and not being chained to my toilet bowl 'round the clock will help me put things in perspective before my next infusion. The past three months have been absolute hell on me, if nothing else I needed the break mentally so I can recharge my energy to fight this beast again.
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LoriCA, thank you for giving us the follow-up; I've been wondering how you were and if you got to try a week off to see the results. Sounds like your gut was right (forgive the pun).
I'm curious if your onc has mentioned switching to Abraxane. It is almost identical to Taxol but suspended in a different ingredient, and I've read that a lot of patients who have problems on Taxol can tolerate Abraxane better because their reactions are actually to Taxol's suspension (I think it's called cremaphor), not the taxane itself. You might google it and see what you think.
At any rate, golly yes, enjoy this reprieve! You have certainly earned it.
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lulubee thanks so much for your support. There's nothing worse than having a serious side effect that you're embarrassed to even talk about. Only here do I feel like people truly understand what I'm going through and I get that big warm hug that I need.
We haven't discussed any alternatives because he honestly does not believe that Taxol is the cause. I'm hesitant to say "I told you so" too early because it's only been a few days and if the problem returns over the next two weeks I'll have to eat crow. He agreed to be open-minded with me and I'm doing the same for him.
I'm sure that when I return for my next infusion he'll say that whatever viral infection I had has cleared up and want to me to do the Taxol again, which I will probably agree to with much trepidation. Don't get me wrong, I love my MO, he's been very understanding, has taken very good care of me in all aspects (pain mgmt, QOL, etc) and I have no issues with him at all. He saved my life when everyone thought I would die any day. It's just that my reaction to Taxol has been atypical, apparently no one has ever had this problem, at least to the degree I'm having (and not reported, but that's another whole story isn't it). So I don't blame him for doubting that Taxol is the cause, but I do need to convince him that it is. I hate to complain, I'm usually that tough person who can grit her teeth and get through anything, but this has been too much, physically and emotionally.I was given a death sentence 6 months ago and no one thought I would last this long, I fought so hard to get back on my feet. I really want some time to enjoy whatever time I have left. I'm so frustrated that physically I've done a tremendous amount of healing and was feeling pretty darn good, except for this SE that decided to make my life hell for the past 3 months and I haven't even been able to leave the house for a walk. /rant over, sorry
I will ask him about Abraxane, thank you. Looks like it's definitely worth giving a try, but it is much more expensive than Taxol so it has to be justified to the insurance company? Even if he still doubts me and wants me to go back on Taxol next round, when/if I have the same experience maybe I can convince him to try Abraxane for my last round. Even a one month reprieve would be a godsend to me.
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Ughhh. Showed up for my weekly taxol/herceptin infusion and found out Dr stopped Taxol after 12 infusions. Only got herceptin.
I spoke to him 3 days later and explained I progressed on herceptin/perjeta/navelbine after 7 months. He felt strongly about giving me a break (I don't feel I have side effects other than alopecia!!!). I told him I better don't have an explosion during this break. He ordered scan in 3 weeks, and promised any sign of progression he'll put me back on Taxol...
What do you think? Big mistake? Sigh.
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Gramen my doctor had me do 12 weekly, then one month off to give my body a break and get a new scan before I moved to every 3 weeks. From the way he explained it, I thought it was the standard way of doing it. He seemed very concerned about the cumulative SEs of Taxol, especially neuropathy, that might arise during that month even if not a problem during the treatment. The very first question he asked when I returned was if I had any problem with neuropathy. I have two more monthly doses to go and then he's taking me off it completely and I'll just finish up the year of Herceptin/Perjeta., He said that Taxol is not a drug that he'll let me stay on long-term because of the cumulative SEs, even though it's been a miracle drug for me and I haven't had a problem with the usual SEs (other than my atypical one above haha!). Not sure what the game plan is if I progress while on just H&P, trying to not think about it until I have to.
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Lori,
Good to know about neuropathy during the break! I've been using frozen gloves and socks during the infusions and I feel is helping.
I'm so worried about this 3 week break. I'm already coughing (I have lung mets)...
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gramen that break was scary as hell for me too until I got the results of my scan. Everyone else talks about "scanxiety" and I actually find the time between scans scarier, at least so far. Since I have extensive bone mets, every little ache used to scare me. And since I was told that losing control of my bowels was a sign that spinal cord collapse is imminent, when I started having the problems with the extremely severe diarrhea I got REALLY scared, convinced that either the mets in my spine had advanced and my spine was about to turn to dust, or that the cancer had spread to my GI tract. It's so hard to keep those fears at bay. Thankfully my last scan put most of my greatest fears to rest and I'm a bit more relaxed now (even though I voluntarily skipped my last dose of Taxol against my doctor's wishes). Hope your month off isn't too stressful.
Glad to hear that using the gloves and socks have helped you. I am so sensitive to cold right now that there is no way I would even try it but I'll recommend it to people who ask. Thankfully I haven't had any real problems with neuropathy. Instead I get the one-off horrible side effect that no one else gets haha! But at least my problem is temporary.
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Lori, that diarrhea has got to be be a grade 3 side effect. That should be enough justification for Abraxane. Your onc is being stubborn and mean. I hate it when docs won't believe something just because they have not seen it themselves.
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Update - before I even brought it up my MO decided to skip Taxol again today, although he still does not believe the problem is caused by the Taxol (despite it following a very distinct pattern after every infusion). But I think I have a little more understanding as to why he thinks it is due to something else. I have extensive bone mets, too many to count, and losing control of bowels/bladder was one of the warning signs I was told to watch for sign of imminent spinal cord collapse (yay). Naturally this was my first fear too, but my last scan (after the severe diarrhea had been a problem for more than a month) showed significant improvement in my bone mets and put those fears to rest.
About two weeks ago I started having pain in my lower back in the area of my kidneys. If it continues he wants me to get my next scan ahead of schedule,and he commented that he wants me to have at least some time to enjoy getting out of the house, especially if I'm progressing.
I still strongly believe it is from the Taxol. It took 5 weeks for it to completely disappear after my last Taxol infusion (and about the same the time before). This past week was the first time in 3+ months that I have actually been able to get out of the house, enjoy lunch with a friend and go grocery shopping hahaha! So I'm going to see how things go over the next few weeks, enjoy having some semblance of a life, and not even think about the other possibility until I need to.
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Just curious, how many of you are getting steroids as a pre-med?
A couple of weeks ago, I told my MO that I think 15 months is too long to subject my body to weekly dex and I did not want to take it anymore. I told her I suspected some of my pesky side effects could be caused by it. She agreed. So far I've had two infusions without it, and generally speaking things have been so much better these past two weeks. It has made quite a difference in my SE's. Now I am sorry I didn't refuse them a year ago!
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I had steroids as a pre-med. I may be the odd one out as I actually liked it because it made me feel like superwoman for a day or two. My husband always calls it my "crack" because apparently I don't stop talking after I get it. Only real side effect I had was that it took me a while to learn how to get some sleep that first night and to make sure I didn't overdo things because I felt so good, but I planned my schedule around 2 days of feeling good and then the crash on the 3rd day. As a matter of fact, now that we've dropped my Taxol completely (and no more problems with the big D!!), I convinced my nurse to give me a small dose of steroids before my H&P last month because my energy level was so low (no pre-meds at all for H&P). The steroid pre-med always made me feel like my old self.
What side effects were you getting lulubee? Maybe I just didn't notice because I was so sick for a while and on so many drugs that it was always hard to pin down the cause of a side effect. Glad you are doing better without the steroids and it's good to hear that your doctor was willing to work with you on that, especially after 15 months.
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