Anyone on just Taxotere and Cytoxan?
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AvaG - thought I would jump in as I remember my anxiety at my hair loss during my treatment while capping. I had 4 rounds of Taxotere and Cytoxan in 2019; used the Penguin cold caps; and had REALLY thick hair. During my treatment, I probably lost 50%-60% of my hair. After my last infusion, my hair continued to shed for about 8 weeks. (The boards on capping have posts from me desperately seeking advice post treatment). I ended up losing probably 70% or so of my hair, but, I still had hair, and it has all grown back. I used wide hair bands, clips, scarves, etc. and most people didn’t realize that I was in treatment.
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I finished TC in Dec 21, then rads, now hormone AIs. Hair finally came in enough to stop wearing hats/wigs 6 weeks ago. Came in thicker, curlier, and with more grey. It actually looks good short, and I may just keep this hairstyle. TC went OK for me despite a hospital stay, I needed shots for white blood cells, but they weren't given to me as an option. After the 2nd, WBC count crashed and I ended up with a 5 day stay in the VA Hospital. Other than that, all of my treatment went well. Glad I chose TC over AC.
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Bumping up this thread to see if there are others with current, future or past experience with TC. I will be having my 1st infusion on Wednesday, February 15th.
Also, thanks to all who have contributed to this thread as it is very helpful for those of us just starting it....
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I did TC last May 4 through July 7. I did well through the treatment. I had low blood counts each cycle, but the PEG Filgrastim (like Neulasta, had another brand) brought me back each time. I cold capped and kept most of my hair. My worst symptom was fatigue. It took until about a month past radiation before I felt better energy levels. I was able to work at my telework desk job through the treatment course.
I never had any nausea or vomiting. The steroids we get on treatment day now are very effective. I did need to keep up using Miralax or I was prone to constipation.
I just read a journal article that shows long term benefit of TC is very high for women with node negative early breast cancer with high Oncotype DX scores. I am grateful that I was able to have this relatively shorter course of treatment that has left me with no lasting major side effects. I have no neuropathy (iced hands and feet during Taxotere), didn't lose nails. My hair I lost is coming back wonderfully. My blood counts are slowly recovering still. I was almost normal at my 6 month PFC appointment. (3.9 WBC and 4 is normal).
Do you have any specific questions?
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Hi Sarah -
Thanks very much for your response. It is encouraging to hear from people who have been through it. I also had a high oncotype score (39) and I see that you were ER+/PR- HER2- which I am also.
I also am going to cold cap (Paxman) and ice my hands and feet.
For the neuropathy concerns, did you just ice your hands and feet for the taxotere and not the cytoxan?Thanks!
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Yes, I only iced during Taxotere. I was very happy for the ice to be gone after that hour of freezing hands, head and feet. I also had my husband feeding me ice chips during the Taxotere for my last three infusions. I think it helped with oral symptoms.
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@mandy23 - I just started TC chemo on Thursday (2/9), so it sounds like we'll be in this together! I had a lumpectomy around New Year's, mostly node-negative ILC (they found just a couple of isolated cells in one node), but higher-than-expected oncotype score.
My experience so far has been fine, but it's only been a couple of days and I still don't know what will happen in the next few days. I cold capped, iced my hands and feet during the T, and put ice in my mouth during the C. I felt quite medicated and jittery for about the first 24 hours after the infusion, and have taken Zofran a few times when I've felt mild nausea (it wasn't bad, but the nurses all said to take Zofran immediately if I felt bad at all). It seems to be working for me. I felt good enough to participate in a couple of Zoom meetings for work the next day (not early in the morning, though).
I also got the shot to bring up my white blood cell count, and am taking Claritin to hopefully avoid the bone pain that they said would happen if I didn't.
My tongue feels burned at the moment. Maybe I'll ice my mouth during the T next time to see if that helps.
The big thing everyone has said is that you really need to hydrate like crazy before, during, and after the chemo. I need to get a drink now!
Good luck to you next week. I hope your experience is at least as good as mine. Let me know, and let's keep in touch as we go!
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Sarah -
Thanks for your thoughts. My plan is also to have my husband to keep me replenished with ice chps. I was thinking of only be doing the icing on hands and feet during the Taxotere. Getting all this icing stuff together is making me feel like I will be the abominable snowman during the chemo! Good thing they have heated blankets!
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Hi devoinaz!
Nice to hear from you. I hope you are still doing well during this post chemo #1 period. As my date gets closer, I am getting more anxious, but just want to get going on it, so I can see the end of the chemo and move on to the next thing!
This is my 2nd primary breast cancer (other breast this time). I was first diagnosed 19 years ago! Thought I had beat it and that time it was very small, but it was ILC like you have. Not to be though....this time it is IDC and still small 1.5 cm, but grade 3, so have to do the chemo this time.
So, I've had 2 mastectomies, 19 years apart.I hope you are hanging in there and feeling good!
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Hi mandy23!
Wow - a second round of BC. I'm glad to hear it's again early stage and small, but that's scary.
My update is that I think for me, yesterday was the low point (3rd day post-infusion). I felt super out of it and tired, and didn't really want to do anything. I forced myself to go for a couple of walks and play a game with my daughter, but also took a nap and went to bed early. I am a bit better today, but still tired and somewhat groggy and my tongue still feels burned! Hoping to come out of the fog in another couple of days...
Good luck on Wed!
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Hi all,
I'll be starting chemo (TC) on February 23. I chose a mastectomy because several members of my family have had BC. I feel like it's just my turn. Mandy23 let me know that this topic was active again. I'm on another topic. Thank you, thank you so much.
DX: Stage 1B, Grade 3, TN, node-negative, IDC. This is the first I've heard of using ice. I am anxious but I know that since I am triple negative, I really need the chemo.
Please stay hydrated everyone. It's important. Hang in there so we can all see this through!
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@kathleen103 Sorry to hear that you are joining us! I'm now 8 days post infusion, and I want to share what happened to me in hope that it might help others avoid the same.
On day 6, I was feeling pretty good and mostly back to normal in the morning, but then got extra tired in the afternoon - like I was somehow getting worse again. I figured that maybe this was normal and I just needed an extra day to bounce back. Unfortunately, what was actually happening was that I was developing a neutropenic fever. I kept getting worse, and took my temperature around 5:30. It was 100.3F on our home thermometer, but that one reads low a lot of the time. They say to go to the ER if your temp is above 100.5 for an hour (and not to take fever reducing meds until you've been seen by a Dr).
So, I went to the local ER down the street from my house, and by the time I got there, my temp was up to 100.8F, my white blood cell count was quite low, and my heart rate was super high. They did about a zillion tests, which all were negative, but ended up admitting me to the hospital and giving me a bunch of IV antibiotics. They also gave me Tylenol so that my fever would come down and I'd feel better, and that worked perfectly and my fever never returned. I think the infection was stopped by a combination of the antibiotics and also the fact that my own immune system came roaring back. My white blood cell count was normal by the morning after I went to the ER, and kept rising so that it was abnormally high by the following morning. I had the Neulasta shot the day after my chemo, but it seems that it didn't really kick in for me until day 7 afterward - or something like that.
The hospital stay was really surreal and frustrating because I felt quite healthy, but they were understandably nervous to let me go home. I ended up staying there for nearly 2 days. In hindsight, and especially after seeing the cost of staying there that second night (I have insurance, but my copay for this unfortunate adventure will be more than $2000, and my insurance company will need to pay about 10x that!), I think that since my immune system had already recovered the morning after my fever and I felt fine, I could have insisted on going home at that point. If I felt bad again, I could always go back. The thing I don't know is how important it is to keep getting more IV antibiotics once you've started...
In any case, I've done a lot of thinking about what I might have done to let some infection-causing source into my body. The main things I can think of are (1) I wasn't quite as vigilant as I should have been/need to be about hand washing, and (2) I ate some yogurt that had been in the fridge for a while in the morning of the day I got sick, so maybe somehow the bacteria in the yogurt caused the infection.
The big take home message here is that even if you're feeling good, your immune system is probably not working properly about a week after you get your infusion. Around this time, be super-serious about hand washing and also that anything you put in your mouth doesn't have any bacteria in it (and, of course, about avoiding crowds, wearing a mask in public, and not interacting in person with anyone who might be sick). I hope this doesn't happen to any of you (or to me again!). It was not fun at all, though I'm thankful for the good care I received and that it ended well (so far, at least!). Good luck to all!
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Hi -
Reporting from my Chemo #1 on Wednesday the 15th. First I have to say, everyone is different and many people go through the infusion without a hitch. So, don 't assume because I had a bit of an adventure, that you will. Chemo is definitely not for sissies....
They first gave me a pre-IV with some steroids and anit-nausea meds. Then they started the Taxotere. 6 minutes in, I started to feel unwell. I looked over at my nurse and before I even had a chance to ring my bell, she and 3 other nurses were at my chair. My blood pressure went through the roof and I was flushed beet red. They quickly pumped me with Benedryl and more steroids. It immediately started bringing my BP down. However, by then my anxiety kicked in and I couldn't stop shaking. So, they got the oncologist of the day and she came over and talked to me. Then they gave me some kind of sedative to calm me down. They waited about 1/2 hour and my vitals were back down closer to normal. They restarted the Taxotere at a slower speed for about 20 minutes and since I did ok, they then speeded it up and finished that and then did the Cytoxan uneventfully. They sent me a couple prescriptions to take next time the day before my treatment and they will give me bendryl in the pre-IV to try and avoid this next time. More drugs. Ugh. The thing to take from this is that if you at all start to feel unwell during an infusion, do immediately let your nurse know. They are used to handling these kinds of things.
I did ice my hands and feet during both T and C and so far, no tingling issues even though I had some breaks with doing that during my episode. I also sucked on ice chips during both and my mouth/tongue is pretty good--actually better than I expected. I have a small amount of soreness where my mouth becomes my throat, but it isn't that bad.
The biggest issue I have had so far has been the flushing from the steroids which ended yesterday and on Thursday made me think I was running a temperature since my face was hot. I noticed my hands (as usual) were icy cold, so then realized it was flushing. The other problem has been a dull headache, which I can control with ibuprofen. Last night (Day 3) I felt the most exhausion so far. I'm tired and I don't feel 'well', but I would say that I don't (so far) feel as bad as I expected. I am still able to eat (small amounts at a time) and my mild nausea (didn't take any meds) seems to be getting better. I am drinking LOTS of water.
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devoinaz -
SOOOO SORRY to hear that you ended up in the hospital!
That REALLY stinks! Don't go second-guessing yourself....it could be something really really minor that caused it that normally you wouldn't even think twice about becuase your immune system could handle it.
Thanks for the reminder that no matter if we start to feel better, we have to be vigilant and pay attention especially to temperature.
I hope you continue to feel better and have no more adventures to the hospital.
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kathleen - Figured I should pop in and wish you well on your 1st chemo. I'm sure you will get through it like a champ!
devoinaz - Crossing my fingers for you that your hair hangs on. Today was my hair wash day---highlight of the week for now, but guessing that will be the day most hair falls out in the future....
I had another adventure yesterday-Day 7. I had a 101 temperature so the triage nurse told me to go to the ER. They did every imaginable test on me--took about 10 vials of blood. They told me the worry is neutropenic fever which can lead to sepsis. The ER doctor told me upfront that it was likely I would be spending the night. As it turned out, surprisingly to the doctor and to me, my white blood cell count was in the normal range! Woo Hoo! They never did figure out the cause of the temperature, but gave me an IV of anitbiotics and then sent me home. Chemo is not for sissys....
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Hi all,
I'm on Day 3 of my first cycle of chemo. So far, side effects have been handled by prescription medicines. I just gave myself my first Nivestym injection. I took an antihistamine five hours ago to help block its' side effects. I actually felt energized on Day 1. No problems eating because I took anti-nausea medication on Day 1 and 2 - No nausea today. I am feeling tired and a little out of it. I've checked my temperature twice today - felt a little warm/flush, but I am in normal range. Going to sign off and drink more water. Take care.
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Hi all,
mandy23 - so sorry to hear you also ended up with a fever and a trip to the ER! Glad you didn't need to stay and you are fine!
kathleen103 - sounds like your first infusion was relatively uneventful, which is great news! Hopefully the side effects start subsiding soon (though it doesn't sound like they are too bad for you at they moment, which is great!).
My update is that I've been feeling nearly normal for the past week, which is awesome. I go back for infusion #2 on Thursday, so I have three more days of feeling normal. I'm going to start again tomorrow trying extra hard to hydrate. I've started to lose a little more hair than usual, but it's not extreme - at least not yet. Fingers crossed that it stays that way!
Sending good wishes/energy to everyone else going through this!
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Hey there everyone -
devoinaz - Wishing you a very calm uneventful infusion day tomorrow and no more ER trips! I am feeling pretty 'normal' too these days. Trying to build up my strength as I will follow you to my 2nd infusion on the 8th. Let us know how it goes and we are here for you!
kathleen103 - I hope you are still having a quiet and fairly non-eventful post infusion #1. How's it going?
I also wish everyone uneventful infusions and recovery!
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Thanks, mandy23!
Had my second infusion yesterday, and it went really smoothly! Felt tired last night, both from the drugs and because I hadn't slept that well the night before the infusion - nerves plus steroids does not equal sleep! But I slept pretty well last night. I get to take more steroids today, so I should feel fine, but I know it will hit me harder over the weekend. I also go back for my Neulasta shot this afternoon. Hopefully that goes well.
Even though I'm using the cold cap, my hair is definitely shedding a lot since about day 17 past my first infusion. I don't have any obvious bald patches yet, but unless the shedding slows down very soon, I know I will. It's crazy how much is coming out! It doesn't hurt, though, so at least that's good, and I think the cold cap is protecting me from long term hair loss, even if it doesn't fully work in the short term. I bought a couple of head covers and some really cool earrings, so maybe I'll get to rock that look for a while. I'll need some more of both if so!
Hope all is well with you all!
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mandy23 -- I definitely felt like the abominable snowman. I that iced my hands and feet (with the SuzziPad products-- https://www.amazon.com/dp/B09W5KLVDR. I found them intolerable for more than a few minutes, but think SmartWool socks and gloves made all of the difference. YMMV, ,but just one more bit of info. I'm now 12 weeks PFC and never had any neuropathy problems! (My hair is a different issue, but I now have an acceptable pixie look -- my first since the Clinton administration!)
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devoinaz - Now we're into the weekend so I hope you are still doing well! I am also cold-capping and got my first 'handful' of hair today (day 19). It's a little frightening as I had so little hair to begin with and what I had was very thin and fine. However, I am trying to stay focused on what I decided at the beginning which is any hair kept is a bonus. The most important thing for me is that it comes back and hopefully the cold-capping will help it do that in a quicker and healthy way. I too am prepared with a couple of hats and I got a halo hairpiece. I want to be prepared, but it's hard to know what I'll want until I 'get there'.
lef - Nice of you to pop in and give support to us chemo newbies! I also am using the Suzzipad products. I found the feet to be fine and the hands were a bit more complicated as I needed to be able to spoon ice chips into my mouth too. I finally ended up leaving the hands more like oven mitts that I could put my hands in and out of. My hands and feet are normally cold anyway (poor circulation I think), so who knows maybe I wouldn't have even needed the extra ice!
Curious question for you....when people say they are 12 weeks PFC (I know that's Post Final Chemo), do you start counting on the date of the final infusion? Or do you add in some of the recovery days?2nd Infusion is on Wednesday. I am focusing on the idea that I will be 1/2 done with infusions once I get through that!
Hope all are feeling healthy!
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Ok, so, despite cold capping, hair loss is real! I think I lost about half of my remaining hair in the shower yesterday, if not more. I still don't have any true bald spots, but it's super thin everywhere now. I've definitely lost more than half of my hair. I'm still going to cold cap because they say it helps with hair growth afterwards. For now, I started to wear a fabric headband to cover up the top. That plus earrings and I look a bit like a gypsy pirate!
I think I'm over the worst of the other side effects from #2 (I'm now on day 4 post infusion). Haven't needed nausea meds today, and was a bit less exhausted this morning than yesterday. All of my side effects happened almost exactly as they did the first time, too, so no new surprises. If anything, I think it was all a bit less severe this time. I just really hope I don't get that neutropenic fever again!
Best of luck to you on Wednesday, mandy23! I hope your second treatment goes smoothly!
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devoinaz - Glad to hear you had some 'feeling normal' days before infusion # 2 and that infusion day went smoothly. I'm sure that you are rocking the earrings. Hope you continue to not have new surprises from side effects.
mandy23 - Hope all goes well on Wednesday with infusion # 2.
I hope neither of you have another experience with neutropenic fever. I worried about it all last week - took my temperature again and again. I was experiencing chills and something like hot flashes. On Day 7, I gave myself my fifth and final (for this round) injection of Nivestym (filgrastim-aafi). Fifty minutes later the pain began. My pelvis ached constantly and if I made any movement, pain would radiate in multiple directions. It was a struggle to walk. I tried the OTC pain medicine my medical oncologist (MO) had suggested. It took a bit of the edge off of the pain. Six hours later I was on my way to advanced urgent care. They ruled out infection or anything non-chemo related as the cause and gave me a strong, non-narcotic analgesic injection. My MO called on Day 8 - recommended different OTC pain med and will change to a different neuprogen biosimilar next round. Day 9 the digestive side effects kicked in and I turned to Imodium. It's now Day 12 and I feel rather normal. I was able to work a full 8-hour day. I worked two and a half days last week. All and all, I feel grateful because I know that many with BC experience a much harder time.
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Is neutopenic fever common with TC??? I start next Tuesday & I am really nervous about that. I will be on my own after my sister leaves on Day 7, and it scares me to be alone when my immunity is lowest. I guess I need to be vigilant about taking my temperature?? Normally I would just gut it out & sweat it off but I guess that wouldn't be too smart. It'll be hard to know whether ER or urgent care would be better move if that happens.
Mandy23, good luck on Wednesday!! I hope it is uneventful & easy!!
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@sheilzinla Neutropenic fever is NOT common on TC, as long as you are also getting some sort of injection to boost your WBC counts. But it can happen, and if it does, they told me to go directly to the ER, not to urgent care. Regular urgent care can't deal with it - you need to get on serious IV antibiotics. It's a medical emergency because without enough white blood cells, a minor infection can cause sepsis pretty quickly. At my cancer center, there's a cancer-specific urgent care that is also a good option, but only during regular business hours.
You probably won't have this problem, though!!!
@kathleen103 So sorry to hear about your bad experience with the injection. Weird that it only happened on the fifth one! Glad your doctors are planning something different for next time. Did you take Claritin? They told me that taking Claritin reduces or eliminates pain from the injection. I've been taking it, and haven't had any. Glad to hear you're finally getting better now!
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@devoinaz Thank you for the insight & advice. Good to know about ER and the seriousness. I am supposed to be getting a Neulasta-like shot 24 hrs after my 1st infusion so that is a relief. I will plan on taking Claritin as well.
I hope you are feeling better on your chemo journey as well.
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devoinaz - I took Zyrtec instead of Claritin. In the past for allergies, Claritin has been less useful than a glass of water. My MO said that either antihistamine would be alright, but Zyrtec can make you feel tired or sleepy. Day 7 was my worst day for staying hydrated. I worked 8 hours that day (from home) and was paying more attention to work than drinking water. The pain was only around for about 30 hours, so I feel I have fared quite well.
sheilzinia - Hope all goes well for you on the 14th. I'll be getting my pre-round 2 bloodwork done that day. Please stay hydrated.
I went to advanced urgent care at my comprehensive cancer center. It is opened extended hours.
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Hi all -
I made it through infusion #2 yesterday with no major side effects! YAY! I did start shaking again during the pre-treatments which the nurse and I decided must be anxiety over the whole thing, so she added some Ativan to the IV and that seemed to help calm me a bit. Or...maybe it was the cold cap and icing hands and feet -- who knows? Anyway, made it through both the T and C without further issues. 2 infusions down, 2 to go! I am feeling pretty good today (relatively speaking), though I know it seems this weekend and early next week will be the roughest days. Last time they only gave me steroids in the IV and a LOT of them after I had the reaction. This time they gave me the oral ones (day before/day of/ day after) that it seems most people are doing. That actually is so far working better as I don't have the major flushing, headache and jitteriness that I did from the IV steroid.
devoinaz - Yep...shedding is real for me too even with the cold capping. Tuesday was my hair wash day and I got a handful in the shower. I had this momentary fear that I would get out and look in the mirror and see that it was ALL gone! Not yet though.....but trying to get my mind around that day might come. Even pre-chemo, I had been adjusting my part to avoid the really thin spots on my head....some related to my first bc experience which had no chemo,, but did do 8 years of Femara and I think that along with forced menopause may have really thinned it out. So, I keep looking at it and deciding if there are any more part movements possible. I've been looking at headbands, but am holding off a bit to see if I keep any in the back since if not, I willl need to go to total hat or wig. I was also looking at some bigger earrings. LOL. Seems to jazz up the lack of hair a bit.
sheilzinla - To add to what devoinaz stated. In my case, the high temperature (101) turned out to NOT be neutrophenic fever. However, because of the risk of it, it's more important than a temp when you are not on chemo. They did a full work up for me at the hospital including a chest x-ray. They saw something on there they didn't like, so since I was at the hospital, they were easily able to give me a CT Scan also. Turned out to be nothing (phew) after looking at a past CT Scan from years ago, so they decided it was a chronic condition. They never did determine the cause of my temperature (and of course, after going out in the cold, it was already down when I got there), so they gave me an antibiotic IV and sent me home. So....just good to be cautious, but doesn't always mean neutrophenic fever.
kathleen103 - I ended up with a backache in round 1 for about 3 days which was likely the 'bone pain' everyone talks about. Claritin did nothing for me either, but worth a try. I'll have to remember to try Zyrtec too. For my pain, I used a heating pad and that worked best. It was weird though. Strong pain for about 3 days and then poof! it was gone! Had to be the Neulasta. Nice to hear that you are feeling better. I was also happy when I found about the last 10 days prior to my next infusion, I was starting to feel better.
Hang in there everyone! We CAN get through this!!!!
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@mandy23 Glad you made it through Round #2 with no major side effects!! A win for one of us is a win for all!!
I am in battle prep mode looking at starting next Tuesday. Got to talk to my cold capper and feeling a little less uneasy, but still looking at chemo is a scary thought!
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@mandy23 So glad to hear your second infusion went smoothly! Sending you good vibes for the weekend.
Good luck next Tuesday, sheilzinla!
My update is that I'm mostly recovered from infusion #2 (it's now been a week) and I haven't gotten a fever! Hair loss has slowed down a bit, too, though it's still more than normal - probably about 4x normal each day now. The unfortunate news is that my kids both got sick today with some sort of cold! I told them they need to quarantine in their rooms. I think my immune system will probably be back by the weekend, but it's likely still low right now. Fingers crossed that I don't end up catching it.
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