Weekly Taxol group
Comments
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Congratulations CIW! From an old retired nurse to a new one - best of luck and keep learning. Re: Taxol - all I can say is ugh. A+C was not nearly the problem that this has been. I didn't have the dose reduced but added a week in between. Next to last one is Tues and then the last on the 30th. Should have been done on the 2nd if neuropathy plus atrial fib hadn't intervened. I'm really bummed about it and can't wait to get this part over. This has all been neoadjuvant so will have surgery and rads once this is all cleared up. That should be a breeze compared to this part.
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CIW....A big CONGRATULATIONS on your new title. So happy for you.
Have a great weekend and a pain-free week for those having treatments.
Hope
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CBK,
Thanks for the feedback. I actually started to cry just to know I'm not alone in this. Yeah, I get hyper emotional now too. I'm trying to stay positive. The end is near for the taxol.
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Congrats Gussy! May you and your husband have many happy years together!
Congrats to CIW too! Passing your nursing exams during this is simply amazing.
Re hair: so far my lashes and brows are hanging on. I'm guessing it's mostly because I haven't done AC yet. I bet as soon as that's done, then they'll take off too. But I was a bit surprised by the downy growth still happening on my head. I shaved my head because I was getting bald spots and lots of chunks falling out. Yesterday my husband commented that maybe my hair wasn't done growing. Because now I have these downy white hairs all over. The kicker is I have naturally dark brown to black so it's a big contrast. Oh well, I guess we'll see what happens in 6 months.
Re dryness: I feel like i'm a raisin. No matter how much water I drink, my sinuses are dry, my eyes are dry, my skin is dry, my mouth is dry. I'm struggling to keep my lips from splitting. I feel like i'm constantly putting on lotion or moisturizer of some sort. I've not tried eyedrops yet but I think that's just a matter of time.
I am very grateful for these forums. It’s hard to be positive but when I can read the experiences of others and know that there are women going through the same thing or have gone through this, it’s uplifting. Thank you all for sharing
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Thanks everyone for the feedback on the eye issues, I guess it is reassuring to hear that I'm not the only one experiencing symptoms and that there is hope that it is one more thing that will "go back to normal" after I'm all done with treatment. Gussy- I'm also doing neoadjuvant treatment prior to surgery and have been feeling dramatic results (the lump in my lymph node is no longer noticeable and my breast lump has shrunk significantly), but I've also learned that I have the gene PALB2 and am now reconsidering my goal of having a lumpectomy to having a mastectomy on the tumor side. I know that there is A LOT of discussion about the pros/cons of lumpectomy vs mastectomy, but I was wondering if anyone else was in a similar boat? I feel like there are three or four studies out there that everyone is looking at, but I was wondering what others are hearing from their doctors.
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CIW, I had my Taxol reduced between #3 and #4. My fingernails had blood pooled underneath them (still do) and they felt as if they'd been slammed in a car door. They're still somewhat number after a 25% reduction, but not as bad as it was. I believe my infusion is 126...?
The dryness of the Taxol is my biggest complaint, too. I drink, drink, drink, but still feel like the Sahara.
38 more days (6 more infusions) to go!
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Gussy- I found A/C predictable. Taxol, like all over the place and never sure what it was going to throw your way. With A/C I was armed with my arsonel of meds I needed, with taxol everyone just acted like this is going to be no biggie after you went through A/C.
BJQuilter- Taxol number 11 surprised me, I felt better however, they reduced my dosage due to Neuropathy on number 9. The only thing that was accurate in the depiction of this whole Taxol treatment, is MO kept stressing the cumulative effects. Yeah cumulative, aka, kick me on my can! Im just one month post taxol, strength is definitely coming back! Fatigue is more in the way of sleeping more hours overnite. I climb those stairs and walk that dog with much more ease now! You got this, you are simply in the homestretch! You have reason to be tired and done with it all!! Wishing you much strength and healing!
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missmelissa....When I had my lumpectomy in 2010, my BS said a mastectomy was not necessary in my case. However, here I am now with metastatic disease in my bones. I've asked my oncologists if it would have made a difference if I had opted for a mastectomy. Two different oncologists said "no"...it would have made no difference. I say go with whatever you and your medical team feel most comfortable with.
I can relate to the dryness with Taxol...especially, my fingernails!! I keep them trimmed to the quick to keep them from tearing and snagging on everything I touch. And, I've only had 6 rounds of Taxol. I presume it will get worse as time goes by?
Have a good week. This is my week off of Taxol, so I'm a happy camper.
Hope
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CIW-congratations on passing NCLEX!! That is amazing! Do you know what area of nursing you want to work in?
So far I haven't had my taxol dose reduced. I think I am getting 150mg, but I have had some mild neuropathy and bruising under a few nails. Mostly I have been increasingly tired since taxol #5. I have had 8 so far and thus week I have caught a cold even though I am getting neupogen shots. I am hoping that this doesn't delay another infusion because I have been counting them down!😊
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#9 is done! Only 3 more Taxol. Then off to AC! (Not really looking forward to that)
So my dosage is 195mg infused over an hour. I’m a heavier lady so it makes sense that the dosage is a bit higher than others. Like Sammi, I’ve had mild neuropathy for a couple of weeks. Last week I started getting bruising under my right index and middle fingers. When I spoke with the doc today, she said that unless I feel it’s affecting my fine motor abilities, such as being able to use buttons and zippers, then we’ll stay at the same dose. If the neuropathy in my feet causes balance issues, then that would be another reason to decrease the dosage. So far, my body has been able to weather the taxol fairly well considering the other possible side effects so I am hoping I can make it through the 12 weeks.
The biggest problem I have if fatigue. I just drag every day. The dryness, bloody noses, bowel issues, those I can handle but the fatigue is really getting to me. I can only drink so much coffee before I feel like I’m peeing coffee (I hope that’s not biologically possible). Anyone have any suggestions for quick pick me ups?
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thanks for the congratulations, everyone! I am so excited to be a nurse. Sammi—I want to eventually be an icu nurse. I have two interviews next week for jobs so my fingers are crossed. One in dialysis and one on trauma (where I had clinical).
Back to Taxol talk. The fatigue definitely starts to add up. Sammi and Frozentoes—we are at a similar Taxol point. I have number 9 on Friday. I’m glad it will be ending soon. So ready to start regaining some energy, regrow hair, and get rid of odd side effects (droopy eye, constipation, bloody noses). Frozentoes I hope AC is not too bad for you. It obviously gets a worse reputation than Taxol and for me it wasn’t really hard but honestly chemo treats us all so differently. It could be a cake wa
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The way I deal with Taxol fatigue is to take a 15 to 30 minute nap around 2pm. Then I can function the rest of the day and still sleep through the night. If it wasn't so flipping cold here, I think that exercise would help tremendously. Today is supposed to be a high of 48, so I'm hoping to take advantage of the temporary heat wave and get at least a 15 minute walk in.
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Frozentoes...I try to take a quick nap (20 minutes) during the day in mid-afternoon -- even if I'm not tired. I think this helps with the fatique, as I've had little issue with it.
CIW...Wishing you the best of luck with your interviews. Keep us posted.
Lisa...Get your walk in today. We could see 2 feet of snow in the Ohio valley this weekend...not looking forward to that!!
Have a great day, ladies!
Hope
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Hi all -
I've been looking for a DD Taxol discussion thread, but can't find one. So I decided I'd post here on the weekly one (hope that's ok). Might be some other DD Taxol posters who are lurking trying to find info.
I just finished DD AC 2 weeks ago. I did not have a hard time at all on that, which shocked me. The only side effects I had were my taste buds went wacky and I lost most (but not all) of my hair (on my head) after the 2d infusion. I did not lose any other body hair. The Neulasta onpro was where I took my beating. Even with Claritin I still had some bone pain - but it was tolerable, NOT deabilitating. The big issue was feeling so bad. I felt exactly the way I felt when I've had the flu. I mean exactly (minus the sore throat, fever and coughing of course....just the feel really bleck feeling). For me that lasted two days. It started two days post chemo and lasted two days. I slept pretty much of the time. Then I was fine. I also had some constipation from the anti-nausea meds (resolved with Smooth Move tea). I took my Zofran faithfully every 8 hrs starting day of chemo when I came home and for 4 more days.
I started DD Taxol today. Only have 3 more to go. My pre-meds consisted of Pepsid, Benadryl, Zofran, and Decadron. The Benadryl was 50mg and made me feel totally loopy but it only lasted about 30 min then the loopy feeling passed. I never did fall asleep! Don't know why unless my anxiety had me jacked up so much that my body fought it off. Anyway, about 5 minutes into the start of Taxol I had a reaction - mine was a major burning in my throat and an aweful taste in my mouth - like I could taste the drug itself. The throat burning scared the heck out of me. Luckily the nurse was standing right there and she immediately shut the flow off. And when she did the symptoms stopped. She went and told the MO and he told her to try again in about 10 minutes. So she did, and everything was fine. I finished with no other issues. She said that if I had of had the same reaction again they were going to slow the drip even more. I was already on a 3 hour flow so I'm glad they didn't have to slow it down more cause I was at the infusion center 6 hours as it was with this regime.
Anyway the nurse said that was a rare reaction and hopefully it will only occur this one time. I hope so too cause that was a really scary feeling. But if it does happen again, they will do the same thing to stop it and have other options to try if it doesn't.
The entire staff told me Taxol would be easier than AC but thus far I don't know. This scare sure does have me on edge now of what's ahead.
Also I got the Neulasta Onpro again so in two days I will have "the flu".
Also I started taking my Zofran soon as I got home. I know most people don't get sick on Taxol (from what I've been told by MO and the nurses), but some do, and I don't want to be in the "some do" crowd cause I can't stand to throw up!
My MO put me on B6 and B12 way back on day 1 of consulation, and I have been on it all along, and this is supposed to help offset neuropathy. He told me if it didn't, he would put me on L-glutamine and if that didn't help they would also adjust the dosage I get and if that didn't help then I'd go on meds for nerve pain----->he told me he doesn't want to do the latter because it has its own side effects.
Sorry for the long winded post. Just wanted to put my experiences out there in case anyone might be interested.
I've been reading along on this forum ever since my diagnosis and this place is truly a blessing for information. I appreciate all the info I have received and hope I can return at least in part with my information for others to consider.
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Hi, Marleigh! Welcome to the group! Everyone is always really nice on her. I agree, it's a great place to bounce experiences off of each other and even compare what people have done with similar symptoms. I luckily did not have a taxol infusion reaction, but I have heard they can be super scary to experience. A good friend of mine had one (she had taxol for ovarian cancer) and though she's a nurse like me, it still freaked her out. If it's any consolation that was the only reaction she ever had and the rest of her infusions went fine. So I hope that is how your experience goes! I am happy to hear you had such a good time with AC. It was absolutely awful for me (taxol is a breeze for me comparatively), and I find it so interesting how different our experiences each are.
Everybody-
Does anyone get constipated on taxol? If so, what has helped you? I've been taking miralax, but I feel like I need to try something else. It seems to get worse each treatment.
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Hi Marleigh - as I breezed through AC x4 the nurses all said that Taxol would be even easier. What a load. I have had worse SE than I ever had with the other. Even ended up in the hospital last week with atrial fibrillation and a cardio-version that will have to be repeated next week. SOB is the worst. The doc says it is chemo related as I had no cardiac problems prior. Hopefully, it will all resolve once the poison is out of my body. I had my 3rd Taxol dose yesterday and tonight am beginning to feel achy and very tired. Took 3 Tylenol and will take the PM version tonight before bed in hopes of getting some good sleep. Claritin helps too. I would prefer Advil but am now on a serious blood thinner so can't. I am on B6 and alpha lipoic acid for neuropathy which may or may not be working. Fingertips are still numb but feet and the rest of my hands are fine.
I found that the AC was fairly predictable while the T is not in my experience. But, if we just come to grips with it, treat side effects and get through it, we will survive. Hair wise, I lost most of my head and body hair on the AC but had kept some eyelashes and brows. Now those are going as well. Thankfully, it all returns in due time. I have a great wig that is actually better than my own hair! Everyone loves it as do I and it's so easy.
Your comment about the Bendryl made me smile. The first time they gave it to me I slept for almost the entire infusion for 3 hrs. Yesterday they had halved the dose and I still slept almost 2 hrs. Kind of nice but I certainly am not getting any needlepoint done that I planned on getting going on while sitting there. My premeds are the same as yours and I do not get Neulasta as my counts are staying in a good range. Most patients on T don't get it here and I have never had to take anything for nausea once home. Lucky that way I guess.
In the long run I have been blessed as I married a wonderful love of a man on 12/30 and he has put up with so much and has been such a help. But, what a start to a marriage. I still have surgery to face and then radiation after that so not done yet. The treatment has shrunk the tumor by half (per MRI a few weeks ago) and expect more shrinkage by the time surgery comes along but will allow a lumpectomy and node removal instead of mastectomy. I'm an older bc patient so the least amount of major surgery the better. But, it has been the toughest road to go down in my entire life as I have never had any major health problems before. And, I'm an impatient patient!
So, that's my story. I hope all goes well with you. Keep us posted.
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I take Metamucil cookies in the a.m. with a cup of coffee and two capsules at night. It has done the job so far. Water helps too.
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CIW - Thanks for the welcome. I appreciate the input about your friend's experience. I too hope I don't have that reaction again or any new reactions for that matter. I was psyched up preparation wise for SEs, and while I was somewhat prepared for possible reactions to the treatment I think I had pretty much convinced myself I wouldn't have one. That was pretty dumb I see..haha... but now that I know what might happen it has me really on edge. I absolutely HATED that Benadryl drunk-phase. Reminded me of how I initially felt waking up from anesthesia, though at a considerably lesser degree of course, but still loopy. Nurse kept saying "relax and lay back in your chair" and I'm like oh heck no I'm sitting up so I can see what's going on. Anyway, I'm not looking forward to Benadryl again but I most definitely am not looking forward to the burning throat thing. But praying it won't happen again.
Ref your comment on constipation - on AC I had constipation from the anti-nausea meds and I used Smooth Move tea. Worked like a charm for me. I had also been told by my oncology nurse to try stool softeners as an alternative if I got tired of the tea, or if it didn't work. Miralax was 3rd on the list they gave me and then those glycerin rectal suppositories.
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I had constipation issues with my very first round of Taxol....I took Dulcolax on a daily basis. I've had no problems since. I will have round #7 of Taxol next Thursday.
Hope
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Gussy - oh my gosh, atrial fibrulation!! I am so sorry to hear that. I was hooked up to the BP machine yesterday and it was checking my BP every 15 minutes. The nurse told me it was because Taxol can cause BP to rise (the most common) and sometimes even bottom out. Thankfully mine stayed normal except for when my throat felt like it caught on fire and then the anxiety sent it zooming, but it came back down after I calmed down. How soon after you started Taxol did your AF symptoms start? That is really really scary. When did your numb fingertips start? It's difficult to compare, I know, since you are on weekly, and I am on DD, but at least it helps some to guage and compare.
I like your thinking ref " if we just come to grips with it, treat side effects and get through it, we will survive." Perfectly stated!!
The reason the weekly patients aren't getting the Neulasta OnPro is, per my MO, because that regime doesn't qualify but I can't remember if he said was an insurance company thing (what they pay for) or has something to do with dosage, frequency or something. Sorry I can't remember the details but I just know it's only for the DD users. I had it the entire time for DD AC and now I will get it every time on DD Taxol. I like it because it keeps the WBC up but geez it just makes me feel so bad on Days 2 and 3, but this too shall pass.
Surgery was a breeze for me too. I had a double mastectomy but I really did not have any issues with it. To me that was easiest part of this whole journey. But it was easy for me perhaps because I didn't do reconstruction. I'm just going the flat chest route.
Next is radiation after I finish Taxol. I had read an article on American Cancer Society (I think, honestly not for sure it was ACS website cause I've read zillions of articles) that said 6 week radiation treatment was overkill and that there was no research to show a significant difference in outcome for those on 3 weeks vs those on 6 weeks. When I had my initial radiologist consultation he told me 6 weeks radiation is what I'd get. I told him about the article and I think I kind of threw him a curve ball he wasn't expecting cause he did pause and then finally said well he would agree to cut it to 4 wks but not 3 wks. So we compromised at 3 1/2 weeks.
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Hi everyone, i just noticed for the past week or so, around my node biopsy scar feels a little hard and numb, as does my upper ar. Did this happen to anyone during taxol?
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Elfmcg, I can't speak to the node biopsy site, but hopefully there are others who can weigh in. Tomorrow is Taxol No. 3 for me, and I will say that I have noticed pain at my tumor site, but no numbness.
Taxol is much easier on me than AC, but I do have heat/cold sensitivity in my hands, feet and even elbows. My hands are very dry and feel like they might start peeling. I've also been getting a lot of nosebleeds. I've been running a humidifier to help with that.
The most concerning symptom I have just popped up today while walking at the Y. I kept tripping over my feet. Every 30 steps or so, my feet just wouldn't cooperate. Anyone else have balance issues? I don't have any numbness or tingling. Of course, now I'm thinking the worst. The constant worry with this disease never ends. I'll mention to my MO tomorrow.
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Hi Marleigh - I am not on weekly Taxol but rather DD every three weeks. It was supposed to be every two but the neuropathy that started right after the first dose of T spooked the MO so she stretched it out to three. I can't remember when the A fib started as it was a very gradual development of shortness of breath until I could hardly walk 20 feet without having to stop and catch my breath. It may have even begun while I was on the AC. It's all cumulative so who knows. The heart doc thinks it is truly a situational thing (chemo) since I have no history. I'm hoping that the next cardio version on Tues. will do the trick and keep it under control until I'm done with this damnable stuff. I had my third dose this past Tues. and today I'm feeling a little more numbness in the fingers and tingling pains here and there, mostly upper body. I'm treating with Tylenol and Claritin with hopes that tomorrow is better or at least by Sat. It's a trip isn't it?
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I finished Taxol #7 Wednesday and neuropathy is starting on my toes. I've had it in my fingers since the first infusion, but this is the first time I've noticed the numbness in my toes. I had a funeral today and didn't trust myself in heels because I was afraid that I'd trip. So flats it was!
32 days and I'm done with chemo!
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Hi Marleigh and Gussy. I am getting taxol every 3 weeks. Don't know if I should call it double dose or triple dose. Last time I saw my dosage was 378 ml. Granted I am on the taller side and 40 lbs overweight. But seeing others numbers, I can tell it's a big dose.
I usually don't read this thread but was curious of others side effects since in the last few days I am really noticing my eyebrows and eyelashes thinning every day a bit more.
I have had 2 taxol (of 6), next one in next Tuesday. Three weeks in between infusions feels like forever
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jamorcar-Ijust had taxol number 9 and have noticed weakness/clumsiness in both legs from the knees down. They have mild tingling, no pain, and not numb but almost like they are half asleep. Is that similar to what you are having? I am going to let my doc know to on Thursday. He has been aware of my tingling and has said that if it got worse he might decide to stop chemo early because he doesnt want to cause permanent damage.
Ciw-i have to take colace twice a day, drink a cup of coffee, and pray to the gi god's to let me 💩. Usually that combined with physical activity and lots of water works, but not this week. This week I have added milk of mag and miralax and have my fingers crossed that will work.
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Hi Everyone lurking here from the Oct. thread and had a question.i will have Taxol #5 on Monday and yesterday I woke up to my thigh muscles so sore like I just ran 10 miles. I hope that doesn't continue to get worse as it is difficult to bend. I am going to let them know on Monday but was wondering if anyone else had this side effect?
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Tri....I will have Taxol #7 on Thursday. I've had very few side effects -- just a couple days of achiness -- nothing like you describe. Hope they figure it out.
I'm keeping a list of all the side effects you gals are having with each round of Taxol....it makes it easier to know what to expect. So far, I've been really fortunate. I sure hope it continues. I will probably have more infusions than you gals, as my BC has metastasized to my bones. I think the onco said six months...3 weeks on and a week off...that takes me into April....UGH!!
Hope
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Hi Jennifer,
I'm on weekly taxol but I checked my dose out of curiosity yesterday and it said 130ml. Im only 5'5 and 128lbs. That was number 5/12 and I haven't had MAJOR side effects so even though that seems a little high compared to others its working for me for now at least.
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nonahope-I am so sorry to hear about your progression.😢
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