Weekly Taxol group
Comments
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Hi all, im new and have just had my 4th Taxol treatment, ive had no other chemo prior to this.
For anyone who has had this regime combined with Herceptin, when did your hair start to fall out? Was it a slow process, did you lose it all?
Im doing scalp cooling so hoping for minimal hairloss and so far im 24 days post my first treatment and have seen no hair loss at all
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Hey, angiesgo. I've had 2 treatments, had to delay the 3rd. So I'm 15 days into this and mine started going today. I had a small handful in the shower and another when I blow-dried. So maybe it's helping you. Good luck with it, and your treatments.
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Hi Angie (great name) -mine started jumping ship big time after #5. (I am not on herceptin but get an extra drug Carboplatin.) I got a 1/4 inch buzz cut after that. I have #7 tomorrow.... Oddly my black hairs are still shedding but the grays are holding on and even growing!
Good luck!
Angie
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VickiRides and Sawyer, I'm right there with you guys and the steroids messing up my sleep and giving me a steady weight gain week after week. And the weight seems to be all in the stomach and thighs...yuck. Now i have no choice but to get DIEP so I can rid myself of this belly fat.
The good news is that my oncologists says that no sooner than the steroids stop, that the weight should come off. I am heading into my 10 of 12 Taxol treatments next week and then I have 4 rounds of AC but already I am mapping out my post-chemo diet and exercise plan.
VickiRides, good news about the scale moving in the right direction....good for you!
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I've had Taxol #10 out of 12, and the neuropathy in my feet is getting pretty bad. Add to that the loss of taste, skin breakouts, eye twitching, and heartburn, I'm not having fun. Ugh.
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Great to find this group! I'm supposed to start paclitaxel next week but have my doubts about its effectiveness for ILC.
Do any of you taxolers know of any studies? There's the very interesting meta-analysis below showing benefit in early breast cancer, but I've found nothing specific showing benefit to ILC when used as in adjuvant therapy. Please share if you know of some studies!
And I hope you all have a good, relaxing Sunday.
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Hi all;
Just got back from an unexpected trip to the surgeon. I started to get some swelling in my left arm and chest (same side as the surgery). Doc thinks its very early but a little lymph-edema so I will see a specialized therapist and hopefully take care of this before it gets too bad.
Opt4life - you got that right these steroids are a real bummer. But I get why we need them....but it is frustrating. I am glad to hear it should come off easy when all is said and done. The little bit of weight gain, the hair loss and the swelling had me in a full fledged pity party over the weekend. This chemo can really do a number on your body image. Luckily lots of kind people around saying nice things.....and its temporary.
The joint and muscle pain continues ( i think its my biggest complaint ) and the neuropathy seems to just be present but not getting worse yet.
CarolinaAmy - sorry its tough for you as well. i havent' had the eye twitching or breakouts and i think i am avoiding the heartburn because teh MO has had me on Priolosec since my AC since it was a huge issue for me with that treatment.
this week is Taxol #3 for me.
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This is my first time posting here on this thread. I am very new at this. I saw my MO last Friday to discuss having chemo treatment. He told me to go home, read the literature he gave me , and call him today. I called him this morning and I am waiting for him to call me back to get this thing going. I am very scared!... not even sure what I am scared off... This whole BC situation is giving me butterfly in my stomach. I am going to be 75 in June. I am way too old for this!!! lol
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It is scary Praline! You have a right to be nervous and scared its a lot to take in. You can do it though! This is a great way to get support. I struggled as there aren't a lot of folks I can talk to about this and on here there is always someone who can listen and offer suggestion. Good Luck!
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Sawyer just said it right.
I just found out that my MO is having me skip tomorrow's Taxol (#11) because of significantly increased neuropathy. I'm anxious about that, but she assures me it's safe. They'll check in with me next Tuesday instead at my already-scheduled appointment... which was supposed to be the checkup before my final chemo.
The nurse said she may well stop treatment here or with 11. And that frightens me. She tells me they have to weigh the benefit of treatment with the risk of permanent nerve damage. So I've gotta get markedly better this week!!!0 -
Hi Angiesgo - I just completed my 12th (final) infusion of weekly Taxol last week. I started losing my hair after the 3rd infusion and got a buzz cut. Glad I didn't shave it bald because I lucked out and still have my buzz cut. Though I lost hair daily, I never went completely bald. I don't know that this is typical though. I did lose the hair on my legs. The upside is not having to spend too much time in the shower. I don't miss shaving or blowing dry my hair. I hope you have a good experience with Taxol. I had very minimal side effects - just tired at times. The neuropathy was maybe a one on a scale of one to 10. My biggest complaint was gaining 10 lbs. Wishing you smooth sailing!
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Hi Dj-
Welcome to BCO! Thank you for joining us, and for joining in the discussion and sharing your experience. It's always so helpful to hear from others!
The Mods
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Hi everyone- Today was my 4th week of Taxol and my hair is shedding so much. I made an appt. for a wig fitting and scheduled for next week. I am trying to hold on to the little bit of hair I have now. TMI, but my hair down there is shedding too. This is the only SE I've had. Oh... and weight loss (on steroids). I don't know if it's due to a change of eating habits. On Jan.25th they weighed me I was 7lbs lighter, this all happened in a span of a week. I've never dropped weight this fast, even when trying (scary). I've been eating a lot since Jan.25th and put on 1lb today (yeah). I just have to keep eating a lot.
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dj44 - thanks for your update and it's encouraging to hear you did not have any major side effects. I'm going to have taxol 5 tomorrow and I too have tolerated it well to date, my most annoying thing so far has been altered taste buds and metallic taste in my mouth. I have continued to work which is great for my mental wellbeing. I'm doing cold caps and so far no hair loss , so I'm really happy with this
Weight loss and gain on steroids is an interesting combination, for me I'm just steady, so happy with that.
Neuropathy is something that is of concern and I'm hoping I can get through the 12 weeks with minimal impac
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Geeper, I had weight loss on weekly Taxol. It was mostly the first month or so; I only had mild nausea on a couple of days, but my appetite just dropped way down, and I didn't care about eating. After several weeks, things seemed to stabilize and I ate more normally.
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The most important thing is to keep up your protein intake. I ate greek yogurt every day and my husband even made liver for me now and then.
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HI all;
Seems there is such a variance in what we all experience but so many similarities. The weight gain bums me out but the MO says it will fall off after the steriods stop. We eat so well that it is frustrating to gain; organic whole foods and no junk.
My hair fell out with the AC; the day before my second infusion it came out in handfulls so i have been bald since then. Now i am wondering if my eyebrows and lashes will fall out with taxol as some have commented on.
This week I am suffering from bloody noses a couple times a day; I think its because this all makes you so dry...Its like i can't drink enough water or put on enough lotion.
I haven't been nauseous on Taxol yet. My neuropathy seems very mild right now.
Have others had the muscle and joint pain with Taxol. Its my biggest complaint right now.
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Hi Sawyer--I had Taxol #7 on Friday and am experiencing nausea for the first time with it. Nothing earth shattering and the anti nausea pills are working but I was surprised. I also got Carboplatin on Friday so maybe that's it. hmmmmm. I had a touch of neuropathy in my fingers but it seemed to go away after me skipping a treatment due to a hospital stay.
I've been using the Brian Joseph gel for lashes and brows and it seems to be working! My lashes look better than pre-chemo. I have AC after Taxol so I plan on keeping up with the gel since I know AC will wipe out my paltry little buzz cut. It's expensive though.
So ready for this to be over!!! Hang in there everyone.
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It's interesting to see how SE are so varied between all of us. I've only had 2 treatments so far, had to delay the 3rd but hopefully back to it tomorrow. My biggest complaints are tiredness and some diarrhea. Then I started on neupogen and boy! that put me down with back pain. Finally got that under control and am better prepared for the next round of that. Hair is going now, right around 15 days it started. It's true, your head does get sore. I forget til I run a comb over my scalp.
Sawyer, before I started the neupogen, I had some pain in my hips and legs. So far it's only lasted about one day after each treatment. Makes it hard to get comfortable though.
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I get taxol number 8 this week. It sure is going by fast!
At this point in treatment my side effects are
1. The biggest SE and only really bothersome one so far, exhaustion. I have to nap every day and I'm still tired 2 hours after waking up
2. The big D. Immodium helps a lot though
3. Bloody noses, just a nuisance
4. Loss of eyelashes and brows. You really look like a cancer patient once these go. 😕
5. Maybe verrrry slight neuropathy
The aches seem to have stopped at this point. Once in awhile I get an ache here or there, but nothing like those first few weeks.
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wbc counts back up, #3 done today, woo-hoo!
homeschool how many treatments are you getting? sorry you're feeling exhausted and I hope the neuropathy doesn't get any worse.
#4 My eyelids are naturally pinkish anyway, I look tired all the time and I barely have brows or eyelashes. My sister got all the hairs!!!
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Currently on dose dense taxol, had my third one nearly two weeks ago, feel significantly more tired (afternoon naps every day) and muscle pain seems to prolong for longer. Last/fourth taxol on Tuesday, cannot wait!
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Hello y'all... Well here it goes. I am scheduled to start chemo Friday, February 12. MO wanted to start Monday, February 8 but could not fit me in. Being in New Orleans, Tuesday is Mardi Gras which is a bigger holiday than Christmas here. So patients from Tuesday had to be scheduled Monday and Wednesday.
I have butterfly in my stomach almost constantly. It seems like it is always there in the back of my mind, no matter what I am doing.
My MO had said I should be able to work during treatment but I am not sure. I work as an assistant in a kindergarten class. Being around a bunch of kids with runny noses and all kind of "bugs" during the winter months may not be such a great idea. I will talk to him about it. Also I am eligible for short term disability but it takes 30 days to start collecting. I am eligible to collect as of February 10. If I go to work and for some reason I have to stop because of side effects or fatigue, then I have to wait another 30 days to be eligible again. I will have to see what he says. These 12 weeks would sure go by faster if I could work.
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Praline, good luck with your treatment! As for working, weekly Taxol is not as debilitating as some forms of chemo, but I'd be cautious. I did get a cold about a month into my course of treatment, and it was rough and took much longer than usual for me to shake.
Still, the upside is that working keeps one engaged in life, and I'd think that little kids would be a good distraction. Ask your MO?
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rainnyc-I am glad to hear that I am not the only one with weight loss on weekly Taxol. I've had no nausea or vomiting and my appetite is good, so don’t know why I am losing weight. The good thing is that I've lost 2lbs this week, good in comparison to 7lbsweight loss from the week prior to last week.
Sawyer- I juice a lot and make smoothies. Since, my diagnosis I cut out junk food, processed foods, sugar, and red meat. I lived off junk food and fell asleep eating cookies and chocolate. So, this may have something to do with my weight loss. My juices consist of beets, spinach, and garlic cloves.I eat a lot of kale, broccoli and salmon. I buy my food from Sprouts and Trader Joe's, pretty much everything I eat is organic. I live off ginger tea. I cut several quarter size ginger slices and boil water. I found this site "Breast cancer diet during Taxol (paclitaxel) chemotherapy" for effectiveness and try to go by this diet plan. http://foodforbreastcancer.com/articles/breast-cancer-diet-during-taxol-(paclitaxel)-chemotherapy My hair started shedding on my 3rd infusion of Taxol. I am on my 4th week and pretty much bald now. I have a few strands of hair left. Lady parts are pretty much gone and I no longer have to shave my legs and armpits. I still have my eyelashes and eyebrows but don’t know for how much longer.
Angtee15- I may break down and buy the Brian Joseph gel for lashes and brows. Thanks for the recommendation.
ladyhumps- Woo hoo, glad to see that your wbc counts are back up.
Lottemarine- You are so close to finishing.. Yeah!
Praline-Good luck with your treatment!
Hang in there everyone, sending you all hugs.
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Rainnyc- I had a post op appointment with my BS today. Everything was fine except for a seroma. He said it would resolve itself. I asked him about working during chemo and when he realize what I do, He said it may be better if I don't. He also said I would probably be very tired.
Geeper- Thanks for the good wishes and diet suggestions.
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I really want to work during chemo too. I have a desk job so I am hoping.
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Hi,
I just found this site and forum and this is my first post. If there is a way to search this topic please let me know. I don't mean to clutter everything up here. I am a stage 2 post lumpectomy, 63 year old. I had 8 weeks of AC chemo and recently (1/11/16) finished 12 weeks of taxol. I'm also getting herceptin and perjetta every 3 weeks (her2+). During the last 4-5 weeks of taxol my ankles started swelling. To make a long story short my fluid retention now has me 41 pounds heavier than when I started chemo. It went up my ankles, than calves, thighs and in my belly and butt. My onc says while he seen fluid retention with taxol, he has never seen it this bad. I've had multiple ultrasounds on my legs, abdomen, heart and nothing shows up. I'm going for a ct scan for my chest, abdomen and pelvic area next week. They currently have me on 80mg of lasix with only very slight results. He also has had to double up on my pain meds as my legs and back are so painful. I guess I'm just looking for any first hand knowledge or hope for me.
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Marg-
We are so sorry to hear about the issues you're having! Hopefully a member of our very knowledgeable community can offer some insight or firsthand experience with what you've described, and your doctors are able to get to the bottom of it soon! We wish you continued recovery, please keep us posted!
The Mods
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Marg520-I am sorry that you are experiencing pain and swelling. I wish that I could provide some first hand knowledge, but I'm only on my 4th week of Taxol and haven't had these side effects, as of yet. I am hoping that someone that has experienced what you are experiencing chimes in. I hope that these are temporary side effects. Wishing you well.
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