Weekly Taxol group
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Hi ladies -
I will be starting up the dreaded weekly Taxols later this month and I've read months of past posts and I am freaked out about side effects! I had thought that the EC (like AC) was going to be the hard chemo to endure but it seems like more posters are having bad side effects from taxol! There goes my hope that it would be a walk in the park compared to EC.
It looks like neuropathy is the biggest complaint and I'm pretty horrified that my MO had never heard of icing hands or feet during infusion (I feel really bad for the women at my center!). I have myself already outfitted with socks with gel packs and packs for my hands but as I am also cold capping, the thought of icing anywhere else on my body just sucks and may be unbearable.
I'm arming myself with some supplements and wanted to share this study with you all. In a nutshell supplementation with DHA /EPA (fish oil) seriously decreases any neuropathy.
"In this study, the total dose of omega-3 fatty acids administered was 1244.1 mg per day (640 mg: 54% DHA, 10% EPA, three times a day) which was far below the maximum daily allowance of omega-3 fatty acids consumption for more caution." https://www.ncbi.nlm.nih.gov/pmc/articles/PMC34597...
counting the days ..... with dread...
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Amelia01, Welcome to the Taxol board. I finished up 29 days ago. I had/have some SEs from it, including nail lifting and neuropathy. My hands have recovered easier than my feet, although I can still do everything I want. I had to reduce the dosage by 25% after 3 rounds because I kept getting fevers and chills, along with neuropathy, so you do have to keep an eye on it and report any strangeness to your nurses.
Today, the damage in my nails is slowly growing it, and my feet still get numb at night, which isn't painful as much as it's annoying.
I iced for about 1/3 of my treatments, but I'm not sure it helped. My NP didn't believe that it helped, but encouraged me to go ahead and do it because of the placebo effect.
Be careful on those supplements. Some may interfere with the absorption of chemo, so make sure that you check in with your MO before taking anything.
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Hi Amelia,
I was over on the cold capping forum with you, mainly reading and maybe commented a couple times. I finished weekly Taxol 2 weeks ago. What I have learned about Taxol is the side effects can vary widely from person to person. Since I did the cold caps, I decided not to ice my hands and feet and just see what happens. I had zero nail issues or neuropathy. Not to say that you won't, just saying the side effects can vary a lot person to person. The only thing I did was wear nail strengthening polish and take biotin (when I remembered). I bought some L-Glutamine (for neuropathy), but never ended up needing or using it. My side effects were nausea, extreme fatigue, and constipation on days 1&2 after infusion. I also felt like my thinking was kinda fuzzy (chemo brain perhaps?). I never did AC but I know I have heard others says that if AC was hard them Taxol will be a breeze, and vice-versa. Maybe that will hold true for EC as well and Taxol will be a breeze for you!
The cold caps were a success and I kept my hair
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Amelia
I had 4 rounds of AC so after AC I find taxol to be so much easier. I will have round 10 of 12 tomorrow. So far my only SE's have been extreme fatigue and sometimes my face gets a little flushed the day after ( I was told the steroids can do that) I still work though treatment. The only day I miss is Friday, the day of my treatment. I can say when I get home from work each night I have no energy to do much of anything. Just listen to your body and don't push yourself.
I keep my finger and toe nails painted with Nail Envy and alternate vick's and tea tree oil on them every other day. So far my nails have a dull ache to them but no discoloration or lifting as I've read can happen.
I know I have 3 treatments left so I'm sure SE's could still appear but I am thankful to be this far along and to not have the neuropathy or aches and pains. (I do take a Claritin on Saturday morning, the day after treatment, I have heard that helps with the aches and pains so far it's working for me)
I pray and wish you the best. Keep us all posted.
God Bless,
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Amelia-
Taxol was soooo much easier for me than AC. Night and day. As others have said it depends on the person, but many people have an easier time with it. I hope you are one of them. Sending you good th
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Amelia...I had Taxol #13 last Thursday. The neuropathy is pretty annoying at this time with pain/burning. It didn't really start until #11. I've been using Bio Freeze and alternating with Aspercreme/Lidocaine. Other than being soothing, I can't say it is a "fix"...but, it helps. My onco said neuropathy is the most difficult side effect of chemo to treat. Everyone responds differently and it's just a matter of trial and error. My prayer is that it goes away after I'm finished with the Taxol...I have five more to go!!
Have a good day...It's a March Madness weekend for me!!
Hope
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I'm now 9 days post my final Taxol treatment and just wanted to give an update. I started developing pins and needles around treatment 9, and while it started being only sporadic, it is now still consistent enough that I notice it a lot, which makes it feel like it is all the time. I have also noticed a burning sensation under the nails of both pointer fingers along with a deep pink color, and this is pretty consistent too. I don't know if it helps, but running my fingeres under cold water feels good. I never did any icing during chemo, and so far this is the only SE I'm having with my hands. I also tried taking Glutamine during my last two treatments, but not very religiously, and during the last treatment, I had swelling in my knees and ended up hurting my knee somehow that made walking incredibly painful. Per my x-ray, there was no source of injury, but I had some serious swelling in my knees and ankles, so I wonder if the the Glutamine had something to do with it. After stopping the Glutamine and taking big doses of ibuprofen it miraculously cleared up, so I don't know. I've been taking Vitamin D throughout my treatment (with the blessing of my Oncologist) so I like to think that it has had something to do with my minor SEs. I just keep hoping to wake up one morning and find that the pins and needles have gone away...we will see!
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Hi Amelia,
I was on a regimen of 4 DD AC every two weeks and then 12 weekly Taxol. As long as my blood work stays good I will take my 12th and final Taxol on March 30th (Good Friday! How appropriate.) I went through the AC with no problems other than my hair falling out starting on day 17 and my nail beds started to turn dark purple after the 3rd AC. The nails felt like I hit them with a hammer if I just barely touched them. The pain went away in a week or so. Now while on Taxol I have had no side effects other than my nails. They are not painful at all, just ugly and several nails have started lifting. Two on my feet and one on my ring finger. The ring finger is my fault due to doing some yard work and catching the end of my finger actually pulling at the nail. It hurt very bad and taught me a lesson at the same time! I consider myself lucky in that my only side effects have been my hair and nails! Thus far I have not developed that dreaded neuropathy. I am hoping it stays that way.
As a side note, after being shiny bald from the AC, since my 4th Taxol treatment my hair started to come back. I now have 1/2 inch hair all over my head. It started as blonde peach fuzz and gradually changed to normal looking hair. My natural hair was straight dark brown with a few gray hairs here and there. Currently my hair is straight with 1/2 of it being blonde to white. I have gone out for the last two weeks without any head covering, except when it is cold.
I hope your treatment is as kind to you!
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PJOTF...I take it you are finished with your Taxol? ...I will have Taxol#14 tomorrow and the neuropathy is really bad. Last night I mixed Aspercreme/Lidocaine with Vicks after tossing and turning for 2 hours in bed. Then, I had my Ativan cocktail. I finally fell asleep for a few hours. I'm definitely asking for Gabapentin when I see my onco tomorrow. I only hope it helps should I decide to take it. This didn't start until the 11th Taxol infusion, if I remember correctly. Dreading the next 5 infusions.
Hope
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Hope, so sorry your neuropathy is worsening. I went today for acupuncture to try and speed healing for my feet neuropathy and sciatica issues, both of which are making it difficult to sleep. It's too early to know if it helped, but I'll let you know.
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I FINISHED my neoadjuvant chemo today!!! 5 months done and moving on!!!
After re-imaging on March 28, I meet with my breast surgeon on April 4 to discuss options for April 23 surgery. After 10 Taxols with 4 Carboplatins added, neither I nor my MO can feel my tumor. Just wow.
LisaRxCincinnati - You must have finished your chemo in January? And the neuropathy is worsening? Mine is only in my feet, but I think I'll also make appointments with massage therapist and acupuncture doctor. I was hoping to see it go away, gradually. It really does make me toss and turn as well. Ugh. Good luck with yours!
Nonahope - I really hope the gabapentin helps you. I am told the old tricyclic psyche meds help neuropathy for some. These include Cymbalta, nortriptyline, amitripline, and maybe Marinol. I could not take Lyrica - plunged me into deep depression. Good luck with yours!0 -
Paula, So happy that you're done with chemo and that your tumor has gone MIA. That's great news.
I finished my chemo in mid-February (Feb 14th to be exact). My neuropathy isn't worsening, but it's not resolving yet, either. Have pins and needles sensation during the day that turns into numbness and burning when I lay down.
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Hi MissMelliss & CIWi. I noticed that you have a similar DX and chemo treatment as me. I just finished #5 (AC). I'm finding AC extremely fatiguing for 5 days . I'm slightly anemic from the treatment and not sleeping well so that is part of it I'm sure. Just curious if your doctor had any suggestions for managing fatigue to take the edge off? Mostly my doctor says it is to be expected. The best advice I have from nurses so far is get exercise, eat bananas, water, and protein. I'm 444
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Lisa...The tops of my feet are the worse....it hurts to touch them....the burning sensation is horrible. I can't imagine acupuncture. I hope it helps you. Even putting on the Aspercreme or Bio Freeze is painful. Last night I slept in gel socks - not the cold socks, but the kind that have lotions in them for dry feet. I actually slept pretty well...they are cool, but not cold. I think I'm going to order a couple more pair from Amazon. I'm definitely asking about a prescription today.
Paula...Congrats!! Onward and upward for you. I'm trying my best to avoid prescription meds, but it's to the point where I think it's time. The last time I was at chemo, the NP said I could take the Gabapentin at night, before bed and that might be all I need. That's what I'm shooting for.
Walden....Fatigue is bad for some, it seems. I haven't had a big problem with that. I think I would take the fatigue any day over this neuropathy pain/burning.
Hope
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Walden- I have to admit that AC knocked me on my butt for days 2-5 and I often felt like I was moving through jello, fuzzy headed and sore all over (which I actually think was a result of my Zarxio shots). After that initial period I felt more normal with less fatigue but there were a couple of things that I did religiously: go to bed by either 8 or 9pm each night, take my daily Vitamin D pill (my OC wanted me to make sure it was just 100% of the daily allowance), and consume lots of fruits and veggies. I also did try to use my recumbent bike for 30 minutes every other day as well.
I'm now 15 days PFT and the numbness & tingling in my feet is still about the same and the pain in my fingernails continues as well. I feel as though I slammed my fingernails in a door and the slight discoloration under my nails makes it look like they are bruised, so maybe there is some sort of leftover chemo living under the beds or something like that. It is definitely not consistent across all my nails but mostly in my pointer and index fingers.
Has anyone else who is post chemo having issues with swelling? Looking at my face I can definitely see it and my ankles and feet also look swollen. Since I'm so far from any treatment I wondering how much longer this is going to be the case. I try to drink lots of water, but I also always feel dehydrated and no matter how much lotion I put on my hands they keep looking leathery.
We took a celebratory trip last week to Disneyland and I must have walked ten miles over two days. I was actually quite nervous on how my post-chemo body would handle the rides and the first ride on Space Mountain was really weird- I felt very discombobulated and my eyes watered SO badly that it looked like I had been bawling! I survived the ride with little after effects (other than the streaming tears), but when we proceeded to the motion simulator ride Star Tours (which has always made me a little nauseous) I only lasted 1 minute before I had to close my eyes and mentally struggle with the urge to hurl! Now, how much is due to chemo and how much is just getting older I don't know (my last visit was only 2.5 years ago), but I will say that after that I was fine on every other high speed/roller coaster ride and enjoyed them all, except that my eyes continued to water! We ended our 2nd day early because we were all tired and my feet were super pins & needley, but I am pleased to say that I felt good throughout. I also tried putting my feet in the pool & hot tub and found that the while the hot tub was uncomfortable, putting my feet in the cooler pool afterwards felt AMAZING! and even seemed to reduce the feeling of pins & needles while I was soaking them.
One thing that was a little off-putting was that the resort spa required me to call my Drs. office to verify that I could receive a massage. Now, I understand the reasons why they wanted to do this, but it definitely made me feel like I was some naughty child trying to get away with something. I was able to reach an on-call 24/7 Nurse Practitioner who verified that it was OK...as long as they didn't "mash my breast" which made me laugh because I would be seriously upset if a massage therapist ever did that! Later, when I was talking to my masseuse she said that her sister also had breast cancer and her doctor told her she couldn't have massage during treatment. I was kind of shocked by this because months ago my health care team not only said it was OK to receive massage therapy, but told me I could get a prescription from my doctor to get it covered by my insurance! I wondered if this was an issue for anyone else and if they have had feedback one way or the other? I have been getting massage since before my diagnosis and after I started Taxol I tried to get a massage on the day right after treatment, as that is when I didn't hurt all over, and I'm trying to do regular massage up till surgery in April. I don't know if massage has had any true impact on my ability to rebound from chemo, it has sure been a time when I can truly relax and "zone out". I told my regular massage therapist about my diagnosis at the very beginning and they never had an issue with it, so I'm wondering if there is a new thinking about the benefits of massage. What I do know is that at my initial meeting with a surgeon at the start of my treatment, she mentioned the importance of working with a physical therapist prior to surgery and I've seen many postings about how many women are given a set of self-massage routines to follow post surgery, so I am going to be sure to bring this up when I talk to my surgeon again on Monday.
I just had my MRI on Thursday and I'm looking forward to seeing the results of chemo on Monday. Like Paula, I can no longer feel the tumor in my lymph node and while I can feel a thickening in my breast still, it is nothing like it was at the start. I was hoping to have 100% remission, but I'll take anything I can get at this time. Anyone other than Paula having surgery in April? I'm thinking we should start an April surgery page?
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I like the idea of an April surgery thread or page - I'm unsure of what's in store for me, and after five months of chemo, I'm so weak right now that I really hope for added strength in the coming days.
missmelissa - No Way could I have walked and done that trip! Glad you could and enjoyed it! We live in Atlanta, and our big adventure pre-surgery will be to a beach-side condo at Ft. Walton Beach, FL, which I chose for the furniture and view on the balcony. I'll get to the water (elevator) and maybe some dinners out, but peaceful sitting by the sea for a week is my idea of a real treat. I'll get IV saline again this Monday and look forward to a Tuesday of "feeling better" that isn't followed by chemo for the first time since Jan 3 (taxol, carbo) or Nov 8 (AC, every other week). Aaaaah!
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Thanks PJOTF for the kind words.
I’ve read of people getting meds prior to Taxol- as in days before. Is this true?
I’ve been given zero instructions other thnan to be in at 8:00am.
I’m bringing my icing socks and a heated blanket.
Not quite sure what to expect that could be different from EC.
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Hello friends,
I don’t post much but I’ve been following you all and am always inspired. We are all so brave.
I’m going to have my last Taxol next week. Re side effects: despite icing, I first got neuropathy after my second taxol, just some numbing in my feet and fingers. But after my 9th taxol I had a big surge of it, numbness up both legs to my hips, especially on my right side, both hands, and on my face (nose, lips, chin). I got a week off chemo and went to a physical therapist who gave me specific neuropathy exercises and used a TENS unit. Between that, daily exercise (walking, running, weights) and the Glutamine, vitamin b-12 and Epsom salt baths almost all of the neuropathy went away and for the last 3 taxols I’m, regretfully only getting an 80% dose. I have no idea, really, what helped, am just grateful.
The other side effect was a constantly crusty bloody nose that eventually turned into a sinus infection. Antibiotics took care of it. Even though docs say this isn’t related to chemo, I found this Mayo research that might be interesting to some of you. I can’t post the link herebut if you google “nares vestibulitis firstwordpharma” it should be at the top of the list.
After taxol, I’ll have 4 dose dense ACs.
Thanks for posting all your experiences.
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Hello Ladies! I'm just joining the weekly taxol group!
I finished dose-dense AC at the end of February. I started Taxol (I'll be getting 12 weekly doses) last Wednesday. It started out ok, but Friday I started to get the aches and pains. They got worse as the day went on until I had constant pain all over my body along with twitches of pain that would move about from place to place constantly. One second a pain in my hand, the next second a pain in my knee, and so on, and so on. The constant pain in my legs was horrible. This continued into Saturday when I called my doctor's office around 3pm. I just couldn't take it anymore. The nurse first asked if I had anything in the house that I could take (she meant something strong). I didn't. She suggested ibuprofen and claritin and offered to call in a script for tramadol if I preferred that. She said she couldn't get me a narcotic until Monday since I'd need a written script for that - I wasn't ready to go that far yet anyway, so I told her I'd try the ibuprofen and claritin. It only took the slightest edge off. Today was a little bit better - the constant pain has dulled enough to be tolerable and the "pain attacks" as I call them, have dwindled. I feel so blindsided by this. I kept being told about fatighe that would be cummulative and about neuropathy. I definitely was not prepared for this pain. When I asked the nurse how long it would last, she said she doesn't ever get complaints about pain like this - but interestingly I was the second person that called on Saturday with Taxol pain. Weird.
When I go back in on Wednesday - I plan on talking to my nurse about having some sort of plan in place to be able to better deal with this - I just can't go through that pain again. It was awful. I'm so nervous about going back.
Does anyone have any suggestions - or have any of you gone through this? Feeling like this is really going to be a rough 3 months and I'm scared!
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missmelissa....Hoping your numbness and tingling goes away soon. I imagine it will take awhile. I've had no swelling, but I'm still having Taxol infusions. I hope you can report good results from your MRI!!
Paula...I like your pre-surgery adventure...sounds perfect to me.
Amelia...I've never had meds that I take at home before Taxol. They do give you an infusion of pre-meds before your Taxol infusion.
Patartist...Can you share some of your neuropathy exercises? Mine is not only numbness, but burning sensation - that is the worst.
Paisley...If it's any consolation, I have my Taxol infusion every Thursday. Saturday and Sunday are my "pain" days...just like you describe. It's like clock-work. I just plan to lay around on those two days. By Monday, the pain will ease up. I usually feel good on Taxol day and Friday. That's when I go to the grocery and get things done before those bad days. I was told to take Claritin on a daily basis, but I haven't done that. I just rely on Advil, which seems to do the trick. Oh, and I also got those crazy twitches!! My best advice is just to plan accordingly for those couple days of pain. I will have Taxol #15 on Thursday. My biggest problem now is the neuropathy....that is over-riding my two days of pain! It's horrible. I hope you can avoid it.
Wishing all a pain free week!
Hope
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Hi Miss Meliss-thanks for the tips. can’t wait for my final chemo! Congrats on reaching that milestone! I haven’t slept more than 5 hours per night since this started, so I expect I will catch up on sleep then. How long do they want you to wait before surgery? I’d prefer 3 weeks, which is the fastes my surgeon will consider
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Patartist-Sorry about your struggle with neuropathy. Good to hear you found the right help. As for your nose, I can sympathize. I've had a number of SE that the docs and nurses say is not related to chemo, but when I research it I find it is listed in their own drug information pamphlets or in those from other hospitals that I find online. It's frustrating because you end up feeling like a hypochondriac, when it's simply that you are having an uncommon reaction. Also, if it's “not chemo related" they ask you to see your GP instead, and I'd prefer not to add more doctors appointments to my week, especially when my GP has even less knowledge about cancer treatment, chemo, and SE. I know I have very experienced reputable doctors but there is little to no care for the minor SE I've faced along the way. One tip that's been great is to phone the pharmacy that is part of your cancer treatment center. They walk me through every question about SE in detail, and give me very useful suggestions for dealing with side effects, even if it's “not chemo related". Not sure what the doctors definition of “chemo related" is but none of us had these issues before we started chemo.
Do you notice any funny feelings in your breast during chemo? I'm doing chemo before surgery too and can sometimes feel a bruise like pain and other odd feelings. My oncologist is not concerned but has no explanation either.
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Paisley - I swear these nurses and doctors follow a script. I had pain throughout Taxol and for weeks after treatment. They all acted like I was mental, but then begrudgingly said yes, this could be due to taxol. And we are not alone - a lot of people have this reaction. Claritin didn’t work for me, but a lot of Advil did. I’m sorry you have to deal with this..
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Hi everyone! I just had Taxol # 4 on Friday. My WBC count has continued to drop since my last neulasta shot after AC #4. It's now 2.2 and total neutrophils around 1,100. We are on course for #5 this week, but it's pending my counts. I was told it could either be delayed or I will boost with Neulasta or Neupogen. Just wondering if anyone else has experienced the same. Taxol seems to be hitting me harder (in certain ways) than AC did. I'm a bit surprised by it....
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mjb1018, Taxol hit me harder than AC, too. I struggled keeping my RBC up the entire time I was on Taxol, while my WBC was only low once. Just do what you can to get through this.
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mjb1018 - I was on Neupogen from my 2nd AC treatment (seven daily shots post treatment) until after my last Taxol (only 3 post treatment) because my WBC was pretty low throughout. I got hospitalized after my 3rd AC for four days with a untraceable infection and neutropenia and almost had to have a blood transfusion, but the counts final went up enough to keep that from happening and let me go home. They were both a blessing (I never had to miss a treatment except for the week I was in hospital because of low WBC) and a curse because I would have all over body pain for 3-4 days after I started them. I remember feeling so optimistic that Taxol would be so much easier than AC, but by #4 it seemed like it would be an agonizing crawl...but, after I hit #5 I suddenly could see the end of the tunnel as I could start to count down and say "only 4 left!" and it felt like an achievement rather than a slog.
Patartist & Walden- I too suffered from the "bloody snot" and went through so many boxes of tissues trying to keep it in check! It did clear up after I finished my Taxol, but it is one of those SE I never would have expected except for reading someone else on this site posting about it! Same goes for my wonky vision - never saw that on any Taxol SE sheet, but it was something someone else posted about and that was a huge relief! I do get twinges in my breast too and I like to think it is my body kicking out the dead cancer cells!
Got my MRI results during my meeting with my surgeon today and though it has shrunk, the tumor is still there
I knew the chances of 100% remission were small, but I was hoping it was going to happen. It does make me feel better to know that it did have an effect, but ultimately it doesn't matter because I'm going to go ahead with BMX. I'm already two weeks PFC and the nurse told me it will probably be 3-4 weeks until they get me in for surgery, so it will be about 5-6 weeks before my procedure which is what my OC told me was the usual amount of time they liked to leave between treatment and surgery. Although I would like to just get it all over and done with, but since I'm not having reconstruction I'm going to use the next few weeks to try and pretend all is normal again.0 -
missmelissa...Do indeed enjoy the next few weeks before your surgery. Glad the tumor shrunk!
My neuropathy was horrible last night. My right foot is worse than the left and is a bit swollen by night time. I'm hoping my Taxol dosage will be reduced this week. This burning pain is not fun!!
Hope
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Hello ladies, I'm nearly 6 weeks PFC and last night was the first night in a long time where my feet neuropathy didn't keep me up. It's still there, but it seems to be diminishing finally. So there is hope. I'm not taking anything other than an occasional B-complex vitamin, but I am walking between a mile and 3 most days. I think that exercise and circulation can only help.
My eyebrows, on the other hand, have gone completely AWOL. They were mostly gone for the last month or two, but now even the most resilient ones are falling out. I'm able to manage fine drawing my own on with WunderBrow, but I'm really hoping that it's just a matter of time before they decide to return. My chemo-mangled nails are nearly grown out now, my eyelashes are growing back in, my hair is growing, and my body hair is mostly all back. So all in all very happy about my progress. Now I just need my eyebrows to cooperate!
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Just yesterday I did my first Taxol treatment. Feeling a little dizzy and little weird but I'm not sure that maybe my phycology is doing all that. 11 more to go..
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Hi NoteRed- I just did my first yesterday too.sorry you aren’t feeling well. Will yourself better!!
I was panicked about having some sort of bad reaction and I was in a room all alone and I asked if they had any procedures in place if I were to wig out or have an acute allergic reaction and all I was told was to keep the door open and hold th emergency button in my hand. Needless to say I almost gave myself a panic attack.
Is anyone cold capping during Taxol?
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