Weekly Taxol group
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Good morning...
CBK...I remember having those "zingers" for a couple of years after my lumpectomy. My onco said it was nerve endings. I have a good friend who had a double mastectomy in 2009. She has been having those "zingers" lately, after all these yearsll!!! She saw her onco last Wednesday (on a yearly basis now) and I'm concerned because she had a CT scan yesterday due to a "lump" on her chest wall. I'm praying she will not be joining me in my journey of metastasized breast cancer!
Wishing you the best for Taxol #12.Paulette...I haven't experienced the heart burn/reflux yet. I seldom have ever had heart burn in my lifetime. I thought about it last night, as I had a very spicy bowl of chili for dinner...but, I was fine.
Joan...Sorry you had to meet us in our little corner of the world, but glad you are here for support. I will have Taxol #3 on Thursday. All I've had so far are mild fatigue and a few aches and pains which Tylenol takes care of...oh, hair loss -- yes, mine has started to shed rapidly!! So prepare for that side effect. I have wigs from my first bout of BC in 2010 and I will be getting a new wig on Friday. I wear scarfs around the house, but always a wig when going out and about. Heck...my wigs look better than my hair ever did! You will get tons of info and support from these ladies. Hang in there with us!
Hope
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Bibquilter...I'm having my 3rd infusion of Taxol tomorrow....oh, I hope those side effects don't hit me too hard. I'm getting the exact pre-meds as you...except, the Benedryl doesn't make me sleepy -- just a bit relaxed.
LisaRx...My weight has stayed the same on Taxol...except the week of Thanksgiving..LOL I think I was 3 pounds heavier when I went for my treatment that week. I've never taken steroids, other than what they give me in my pre-meds.
Hope
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Joankmcliesh- Taxol is very tolerable regime in my experience, but for me it was very cumulative. I was flying high at the beginning of Taxol, however as my treatments continued I definitely fatigued. I wish I took advantage of more activity when I was feeling high energy. Taxol tiredness hit me hard at about 7th to 8th infusion, as did neuropathy.
My appetite was terrible on my previous A/C chemo and I did gain weight on Taxol. But I was assured I would drop it after off the steroids they administer with infusion. Some people complain of losing tastes for certain types of food. Not me, instead I became a severe sugar craver on Taxol.
What affects one person to the next is super individualized. However, I found this an excellent forum to reach out and ask others. I have received great feedback from the ladies here along this unwanted but necessary journey.
Nonahope- Yes, today was Taxol #12!!! I will gladly check that off my to do list. You can do this,and yes, my wigs look like my besthair day in a year.
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CBK....It seems you and I have about the same side effects. I, too, have a craving for sweets. I was never one to eat sweets. Now, I have to have a little bite of chocolate throughout the day. Hershey Kisses have been a blessing. My taste buds are still intact! You give me hope, with being far ahead of me, that I will get through this. I will no doubt be wearing a wig to chemo tomorrow. My hair is shedding like a long haired dog!! Was hoping to wear a new wig, but I won't get it until Friday. I got out my old ones from 2010...one looks okay.
Hope
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Nonahope- I was never big on the sweets either! I’m thinking the steroids may be the culprit in this. Who knows? But I was never fearful on Taxol. You are going to be fine. Keep hydrated and know you MAY have a down day here and there, but you will get back up and keep on! For me honestly, it was mostly fatigue later on.
Depending on type of wig, you can really restore with a hand held clothes steamer. I only have two wigs now. One is human hair and the other is synthetic but heat resistant. The synthetic one I used steamer on after washing and made the frizzies look like new!
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I do Taxol #10 tomorrow- I find the fatigue to definitely be accumulative. I was flying high too in the beginning, but now I’m taking a lot of naps!
I had really bad heartburn that I didn’t know was heartburn until infusion #6. Pepcid once a day cleared it up.
Bloody noses and post nasal drip are my biggest issues right now. No neuropathy- taking complex B daily vitamin.
Still, compared to AC, this is easy- I had constant nausea on AC. I also crave sweets and have gained back the weight I lost on AC. I also believe it is the steroids.
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VL22- You are in homestretch! Congrats.
I’m so shocked my Oncologist didn’t give me B complex for neuropathy preventative. Can you tell me dosage of B6 and B12 you received and when you started to take them? I’m going to check in with oncologist and others I’m working with on this.
Glad to hear Pepcid is doing the trick for you. It’s almost over. Keep us posted!
You got this!
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does anyone has hot flashes problem? I didn’t have much hit flashes when I was doing taxol, however it got stronger after chemo stopped. Hope it goes away soon.
Will start radiation tomorrow......
Hope - glad you don’t have heart burn problem! Everyone are different on SE.
I lost some weight on taxol but not as much as AC. After 3 weeks PFC I still haven’t gained any weight.
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I have had 4 rounds of AC + C and breezed through that. Some profound fatigue two days later and that was about that. I had one round of Taxol and two days later I felt like I had fire coming out of my fingers and knives in my feet. Advil made it tolerable. The week after most of it had gone away. No trouble walking but fingertips are numb and the skin is peeling of all things. Not attractive. My energy is certainly back, thank goodness. However, MO doesn't want me to have another dose until I have an MRI to see if the tumor is shrinking. This is all neo-adjuvant. I also had some diarrhea with the Taxol, some itching of the upper arms, dry nostrils with bloody mucous. I'm wondering if anyone has had neo-adjuvant chemo that didn't work to shrink the tumor? I'm certainly hope that it has so that a lumpectomy is possible. But won't know for sure until MRI. Anyone?
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Has anyone had problems with thier white counts early in taxol? I couldn't get my infusion last week because my wbc went from 2.0 to 1.1 and my anc went from 1.4 to 0.4 in a week. I knew that it could lower my counts but my MO told me that it shouldn't bottom me out, so I am worried that I might not be able to make all 12 infusions. I will find out more tomorrow though when my labs are drawn. My MO did mention something about neupogen injections. I finished a/c in sept. and got neulasta with 3/4 infusions and my wbcs and anc never bottomed out then.
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sammi2006–yes I have. In two weeks time my wbc went from 12.7 to 2.8 and anc went from 9 to 1.9. I have infusion number 4 tomorrow and will see if they continued to drop from those numbers! My MO also mentioned neupogen if they continued to trend down. I just don’t want too many delays bc I want to get chemo done with!! Good luck to you! I hope your other symptoms are manageable
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CIW- hopefully your numbers don't drop too much and your infusion isn't delayed. How have your SEs been? Compared to AC mine haven't been too bad (except the low blood counts). I get my infusions on fridays and usually sunday and monday I have been tired with some mild nausea. Not much with regards to neuropathy except a few zings in my feet. My doc asked about my SEs last week and I mentioned the tiredness and he told me "thats funny, taxol doesn't cause fatigue". DIdn't make sense to me cause my other MO told me that it does, but whatever lol. I have my labs drawn tomorrow to see if I get my next infusion+ zoladex on friday. I am hoping for no more delays too-just want to be done!
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Sammi - taxol causes major fatigue in fact, after chemo I still have to fight off fatigue. Wbc, when I started taxol my count was high then it got lower each time. You don’t want to lower your wbc because you might get infection.
Best wishes to all of you.
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Sammi2006- My WBC and netrophils dropped low mid-taxol regime and required 2 weeks of neupogen shots to get me to the end. But I never needed to delay a dose of Taxol. I did have to delay my second A/C treatment due to bottomed out WBC WHILE ON neulasta! I remember walking outta the hospital that day thinking out loud “it’s going to take me a bleeping year to get through chemo”. I actually said that right in front of the MO nurse!! It didn’t. Wishing you ‘lots of luck this week!!
Paulette K- Did you start Arimidex recently? Most common SE I've been told by my MO is hot flashes.
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CBK - from day one I’ve been taking complex B vitamin - my MO said take one with 100% B6 in it. I’ve had no neuropathy issues. Thanks for the encouragement!!
Paulette- yes to the hot flashes! They were worse at the beginning of Taxol - seem to be getting less. I usually get them at night.
My WBC tanked on Taxol - my neutrophils at the lowest we’re 1.1. Mine tend to really bounce around. Hoping I can get through these last three without issues
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CBK...Thanks for the wig info. Never gave steaming a thought!
VL22...I will be beside you in that chemo chair today...#3 for me.
Paulette...Never had hot flashes. Even going through menopause they were very minimal.
Gussy...I've never had neoadjuvant treatment, but I have a friend who did. She did fine, the tumor shrunk enough to do the surgery.
Sammi...So far, after 2 rounds of Taxol, my counts have been ok. I will find out today if there's been a change.
Wishing all in for treatment today...a very good day!
Hope
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Paulette, I've been having terrible hot flashes at night only during Taxol. Last night I was dripping in sweat from the heat that was radiating off of my head and back. Then I got the shivers because I was cold. I was hot and cold at the same time!
Gussy, I wanted to get an MRI in between AC and Taxol to ensure the tumor was shrinking. But my MO doesn't do it routinely. and they were feeling it each time I went in because it's close to the surface. My NP said she's only seen one case in her entire 9 years where the cancer was chemo-resistant, but I actually have a neighbor whose TN tumors didn't respond to neo-adjuvant chemo; they actually grew during during A/C, if you can believe it, to something like 13cm. They were aware that it was not responding, though, and kept going in hopes that they'd finally respond. They didn't and they ended up halting her chemo midstream and did an immediate mastectomy. Then they put her on a different chemo afterward. All in all, she was on chemo for a year. Quite rare but it does happen.
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So I had labs drawn this morning. I wasn't supposed to meet with my MO this week. I got a call back a little while ago, they want me to come back in the morning to have my cbc rechecked and meet with my MO. My wbc this morning was up from 1.1 to 1.6 and my anc was up from 0.4 to 0.7. If they are better tomorrow morning, then I can have chemo in the afternoon. I will also be started on neupogen for two days after each infusion. How do the side effects compare to neulasta? I had horrible bone pain and had neutrophillia and they had to stop it.
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Thanks for all support. I’m going to ask about taking B6/12 when start next week.
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Thanks, Lisa - I had the MRI this afternoon and will pick up the disk with report and pictures tomorrow. I should know something from that. I kind of, sort of think it might be shrinking because I don't feel the fullness in the side of my breast that I did before. Maybe I'm just clutching at straws. We will see. I'll keep you posted. I was very disappointed in the SEs from the Taxol as I had so few from the A + C which I thought was a stronger combo. I really can't go from here to mastectomy immediately as I have my wedding planned for 12/30 and I'm not going to postpone at this late date. If the damned thing has been there as long as the surgeon thinks, it can stay there another month.
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Lisa, your neighbor ‘s tumor was one hell of tumor, that sure is a scary story. One of the lady in August Chemo Group her daughter Heather tumor didn’t respond to AC instead it shrinks on taxol. So I guess we can’t never guess about what will happen.
Sammi - prayers for your wbc, it is so frustrating to deal with all these blood counts.
I didn’t have that much hot flashes during chemo, it came after I finished chemo. Night sweat woke me up couple times a night then I can’t go back to sleep. Now it seems to be better, hot flashe comes and goes but at least it isn’t as strong.
CBK - I will start Arimidex after radiation, OMG, hot flashes again. I had several bad years before menopause hate to deal with again!
Good luck to all the ladies on taxol. Gussy - wedding bell!! Are you having SE on taxol?
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sammi2006- I had 2 neupogen shots a week for two weeks during taxol, I felt SE of what I called muscle pain, milder than Neulasta. I didn’t experience any other SE except being more tired than previous chemos. Not sure if that was related to the shot or just being shot towards the end of taxol.
I hope you fare well!!
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PauletteK- please don't anticipate on the Arimidex, I just had a very brief comment from my MO when I asked her about it. I haven't been through menopause so maybe if you already went through it, SEs could be different, you know?
Good luck with your radiation. I hope it's as easeful as it can be!
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So I started taking a B-vitamin complex today to help with Taxol's SEs. I haven't had any "zingers" today so not sure if it's helping or if this does hasn't quite kicked in yet. Anyway, I was quite alarmed when my urine turned a bright fluorescent yellow, so much so that I was going to call my MO because I thought that there might be something wrong with my kidneys. Thank goodness I remembered that the vitamin was yellow. I read reviews on Amazon and that's a SE of taking the vitamin. Geez, they should put that in bold letters before taking it!
Two days ago, I was running a low grade fever at 99.4. Today, my temp was 97.1. Very, very odd this Taxol.
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sammi2006-
So far side effects have been much easier for me than AC. I also have Lyme disease and the combination of that plus AC made me sick for like 11 of the 14 days and I never got back to my baseline during it. I had so much fatigue the whole time. I know Taxol is cumulative, so I'm not sure what to expect down the road, but for now it's manageable and the fatigue hasn't debilitated me like it did with AC. Today was infusion 4 I have had other weird side effects though like mild neuropathy, a droopy eyelid (ptosis), dry sinuses, and a headache in my forehead. I was scared about the droopy eyelid, but my MO said with having neurological Lyme plus the fact that Taxol affects the nerves it is nothing to worry about now unless it doesn't go away when I finish Taxol. So I guess we just wait then. It kinda worries me still, but what symptom doesn't? The weird headache and droopy eyelid started when Taxol started. Not sure what to think of it, but those are my symptoms. I'm glad yours are manageable so far
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My experience with taxol was unpredictable, I got rashes, bloody nose, Neuropathy, joints pains hot flashes, inside my mouth felt very sensitive, acid reflux, fatigue and reaction during infusion. Most of these SE didn’t show up until #5 and after.
CBK- what’s wrong with Arimidex? I had hysterectomy 13 years ago so I went through menopause. I started my radiation today and it went well. I keep my fingers crossed hopefully things will be fine for this treatment.
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hi girls,
I'm on day 5 after Taxol/herceptin No.8, and it's getting tough, I'm hoping everything I'm feeling is par for the course.
I feel very achey everywhere, like I have the flu, and would love a warm bath followed by a full body massage.
Also, I'm still having some pains that move around in ribs, back and the soft part in the centre of ribs, which I think is a mixture of bone pain, wind and heartburn/acid. Also, not to be disgusting, but the rest of my abdomen is sore and full of wind, it feels like my intestines are sore, I have regular enough bowel movements but maybe not a lot of production (tmi) . I feel like a big bald windy baby. Is anyone else having any abdominal issues or discomfort?
Other than that, my toenails are acting up, and I've a bloody nose, and anxiety/a little depressed!
Hope you're all doing well!
Thanks
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elfmcg-
Yes I get abdominal issues. They were worse with AC for me but I did notice Taxol makes me very gassy and also constipated, so you’re not alone in that department! Best of luck to you!
Paulettek—best of luck to you with radiation! Where in your Taxol treatment did the fatigue start getting bad for you? I take my nursing boards in January and I’m hoping to still have the brainpower for it
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Sammi...I had Neulasta injections with my first bout of BC. I had the bone pain. I would walk around the house to try to alleviate the pain. This time around, I was told if I have to have the Neulasta (which I very well may not), I was told to take Claritin. I wish I had known that "way back when"...
Gussy...I agree...don't cancel your big day!!
Paulette...I was on Arimidex for five years. The only thing I had were muscular/joint pain.
Lisa...I take multiple vitamins and the first time I urinate, the water is yellow. I guess that happens with most vitamins.
CIW...Well, droopy eyelid is a new side effect I haven't heard about. This board is so informative.
Elfmcg...No stomach issues here, but I can relate to the achiness. Mine's not too bad.
I had my 3rd Taxol infusion yesterday. The Benedryl seemed to make me a bit more woozy this time. But, I was ok to drive home. Feel ok today. I have my appointment at 4:00 to go pick up my wig. I had to wear one of my old ones yesterday to chemo...the hair that's left is not a pretty sight!!
Have a good day!!
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Has anyone on Taxol had their liver enzymes skyrocket? Apparently, mine have and I have to have a liver ultrasound next Thursday. So much for my day "off" chemo! I know Taxol is metabolized through the liver -- hoping that's what it is and not mets. Time will tell.
Hope
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