Cytoxan Taxotere Chemo Ladies- February/March 2013
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Melrosemelrose - Thanks for checking up on us. I'm 13 days out from the first infusion and feeling pretty good. I seemed to have tolerated it well. Aside from the severe bone pain (eventually managed by pain meds), it has not been too bad. I haven't started to lose my hair yet, but my mother didn't lose hers until after her second dose. I got a cute short haircut thinking that losing short hair would be less traumatic than seeing long hair falling out. I'm trying not to obsess over it but...
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laurierellenb- Woohoo!! Glad you doing ok!!!! Yes, how one handles the hair situation is a very personal thing. FYI- I had waist length hair when I got diagnosed; a short bob ( thank you Supercuts) when I had my UMX and a short boy cut after my first round ( I did that myself-- rather liberating ). After that, I did not shave my head and just let my "hair" science experiment do its thing. My moment of truth happened in the shower as I was running my fingers through my hair . When I saw the amount of hair in my hands, I had a choice to make-- I could just collapse to the shower floor and cry or I could just say out loud, "well, that chemo is doing its job" and move on. I chose to the later. Please do yourself a favor, realize that you don't have to stand in front of the mirror and fixate on your physical changes. You are still who you are no matter what hair is on your body and still loved and supported. You may find a lint roller handy to get that hair off of you, your clothes, and wherever. You may want to purchase a satin polyester pillowcase if a cotton pillowcase is a little uncomfortable since hair can get caught in the cotton fibers. Walmart sells a relatively inexpensive polyester pillowcase.
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I second the lint roller. I used one obsessively for a couple of weeks. It works on scarves, clothes, the inside of wigs & pillow cases - although I slept with a soft cap & it 'caught' the hair.
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Hello to those newly starting TC. I am 7 months PFC (post final chemo) and thought I'd share my TC experiences to help anyone who is curious what it is going to be like. Of course everyone's side effects can be different, so this is just my experience...
My first round was delayed because they could not get the IV in me (bad veins). So, I had to get a PICC line which was better than a port I think but still very frustrating. Because of it, showers were difficult and I had to be very careful to keep it clean and dry so as not to get infected. My skin does not like adhesive, so by the end, my skin looked horrible, but the picc area never got infected. I also had to go in to have the PICC line flushed and dressings changed weekly.
I had 4 rounds of TC. I took steroids (Decadron), Zyrtek, and Claritin in the days leading up to chemo. My premeds also included steroids and some anti-nausea meds. I never got nauseous. I had medication for it at home, but never used it. I did get very bad heartburn for which they prescribed Prilosec (extra strength). This occurred on a weekend and I called my nurse who called in the prescription for me immediately. (Don't ever hesitate to call if you have something going on.) That did an amazing job! I also had mouth issues for which they prescribed some troches (medicine that you suck on) that were very effective at getting rid of the emerging thrush. I do not have any lasting heartburn issues, but I do think I have something going on with my mouth still. Left side of my tongue is still a little sensitive sometimes. I lost my taste buds with each treatment. They nearly rebounded about a week prior to each subsequent treatment. After the 2nd treatment, my eyes watered terribly. My MO suggested some over the counter drops that helped somewhat, but it persisted until about 4-5 weeks PFC.
I also iced my hands and feet during taxotere (with frozen peas in bags stuffed inside fuzzy socks). I also took B6 and Biotin at my MO's suggestion to help prevent neuropathy. I do not have any neuropathy and did not experience any during treatment. I also did not lose my fingernails. I did get a ridge on my nails from each treatment (that are grown out now.)
I had an allergic reaction to the Taxotere at my first treatment. I couldn't breath very well and my lower back ached terribly about 12 minutes in. They gave me a big dose of benedryl and subsequently I had benedryl prior to treatment. No further reactions at the other treatments.
I cold capped, but did have a big shed about 14 days after my first treatment. I kept about 60-70% of my hair. Even so, I chopped most of it off when I was done with chemo to start fresh. Currently sporting a very cute pixie with longer bangs (my inspiration was Scarlett Johansson's current style, although I still don't look much like her. Darn it.) I never thought I'd like short hair on me, but I really like it.
I had the neulasta pod. Basically, they stick the pod to you and activate it. You feel a little prick and it leaves a tiny little tube in you. At the appropriate time, the pod activates, beeps and doses the medicine. Then you can take it off. I experienced pretty severe bone pain especially in my ribs and spine after my first neulasta dose. Subsequently I took Claritin which helped immensely. Better than pain killers. Unfortunately, the neulasta did not work super well on me. I had very low WBC for about 3 weeks after each treatment. I did not stay at home. I went out in public, but did try to stay away from crowds and washed my hands a LOT. I did not get sick (virus) while on chemo.
I also experienced issues with my liver showing damage after the first session. Subsequently, they reduced my Taxotere dosage. My liver rebounded after chemo was over and levels are back to normal now. But, because of this, I had to limit what medicines I took during chemo. I had some pretty bad migraine headaches and could not take anything for them (Advil or Tylenol).
The first couple days after treatment, I felt fine. The steroids keep you hyped for a while. Then I crashed for about 5 days. I did my chemo on Thursdays. I worked from home on Friday. Started feeling bad on Saturday, worked from home on Monday - Wednesday then went back to work the next Thursday. I worked throughout my treatment. The Monday and Tuesday working from home, I absolutely was not 100%. My work knew this and was very accommodating. The few days after each treatment I felt very tired and lots of brain fog. By about 7 days after, I was back to about 75%. By the next chemo treatment, I was back to about 90%.
Once I was done with all 4, I threw my last cold cap across the room. (BTW, cold capping was very effective for me, but it does make you miserable for about 8 hours on the day of your chemo. After about 6 weeks, I felt mostly back to normal. My hair stopped shedding so much, I could think much clearer, and my taste was back to normal. Still would get very worn out with much exertion though. At about 12 weeks PFC, I felt good. I think I went a few days without really thinking about feeling bad and realized that I didn't feel bad anymore. After about 3-4 months I was exercising again (but still got winded pretty easily.) I had gained about 35 lbs throughout my treatment (I had radiation first, then chemo). Once I was off chemo, I did a low carb diet and lost about 25 lbs. Still have about 10-15 to go...
At about 4 months PFC, had my first cycle and it was ridiculously heavy and made me severely anemic. Big set-back on exercising. Again 2 months later another very heavy cycle and the anemia again. Now, I am waiting to have a test (SIS) to look at what's going on down there to make sure nothing bad. I did have bad cycles prior to BC, but nothing like this. My MO nurse indicated they would be bad, but I was very close to getting a blood transfusion with this last cycle. Keeping fingers crossed that it will subside as my cycle gets more regular. I am on Tamoxifen (for about 6 months now).
TC was not easy, but it was not as difficult as I thought it would be either. My expectations were that I would feel bad and I did, but not for the whole time. Really there were about 5-6 "Bad" days per cycle for me. I feel back to normal most days (if I can just get past getting anemic every couple months). My only lasting side effects are some mild lymphedema that causes some shoulder pain (from radiation) and some brain fog. After a full day of work, usually by about 3pm, I do not feel 100% for complex thinking. I feel like it is still getting better though. I am to the point where I do not think about having cancer all the time, but I still get nervous when something odd comes up (i.e. a lingering cough, joint pain, etc.) I've decided not to let myself worry unless something lasts more than 3 weeks. Then I will get it looked at. Most of the time, my "symptoms" resolve in a few days.
I hope this helps a few of you. It was not a breeze, but I made it through and you will too!
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Kechla - Thank you very much for sharing your insights. I'm just 13 days past the first TC treatment. Reading other women's stories really helps!
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Melrosemelrose, thanks for checking up on us! I'm 12 days post first chemo, and I have to say nausea was my biggest fear about chemo after possible permanent neuropathy, but I've had none. I forgot to ask what they gave me as premeds, but I assume something for nausea, and probably a steroid, along with a butt-load of saline, and all of the water I drank, which I remembered the second of six times I got up to go to the bathroom the night after my infusion! I took it easy the next day, since it was the weekend, but I wouldn't have had to. I did have a lot of joint pain starting around 24 hours after the Neulasta injection, which seemed to kind of bounce around, then finally settle in my hips and knee (the other knee had been replaced.) It lasted around 72 hours, and ibuprofen took care of most of it, although a couple of nights I took hydrocodone before I went to sleep. I also had some weird abdominal cramps every time I had a bowel movement. I say weird, because I associate those normally with diarrhea, which I haven't had. I took a stool softener every night for about a week, because they'd warned me so often about constipation, and those don't normally affect me that way. I had the cramps for about 4 days, and none since.
I can only wish my appetite had been affected! I also haven't had any taste problems. The second morning the tip of my tongue felt a little funny, but I think it was from drinking my coffee too hot the day before. I've noticed more hair loss than usual today, and I made an appointment to have it buzzed to about 1/2" tomorrow afternoon - only hope that isn't a day too late!
No clue what my WBC is, because my MO doesn't require a blood test until just before my next chemo, but during the time I was most susceptible, I only ate cooked fruit and vegetables, didn't eat any foot I didn't prepare myself, and stayed in. One of my daughters came up for the holiday weekend, so I had no need to go out anyway. Also no fever. I bet I've taken my temperature more the last 12 days than I have in my life. Mine is usually about a degree below normal anyway, and I've not gotten a reading higher than 98.5, so I guess I'm good.
Haven't been working very hard, but that's more being lazy than anything else. I'm an accountant, and for a month or two after 4/15 I always have other things I'd rather do. Currently picking out tile and wallpaper for a bathroom redo to create a roll in shower. When I broke my foot and ankle 2 years ago, they had me in a boot and using a rollater (sp?) which wouldn't fit thru the master bedroom door. I had to transition to a walker every time I went in or out. DH has two knee replacements in his future, so we are reconfiguring it for a 3 foot door, and a roll in doorless shower. It's a big bathroom with an enormous tub which I've been ready to get rid of since 6 months after we put it in, so there should be plenty of room. Still making decorating decisions, so hope post 2nd chemo is as easy as the 1st.
Lynn
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Kechla, Thank you so much for your detailed report. It really helped me.
Donna
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Well, I'm day 13 post 1st chemo, and my hair is really falling out. Should have made the hair buzz appointment for yesterday instead of today
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hi everyone! Does anyone know what this means:
RCT4 - 313 ARM TAXEL CYTOXAN - 313 ARM TAXEL CYTOXAN
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Not sure but the term arm might relate to a clinical trial.
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The shedding began as predicted on day 14. It was a little at first - barely noticeable. Now I'm reluctant to comb my hair because I lose so much each time I do. I suppose that at this rate, it will all be gone in a few more days. I knew this was coming - still not prepared for it though.
Question: Has anyone else experienced a sore scalp? (I'm not combing my hair more than usual and I've been gentle.)0 -
My scalp alternates between sore and itchy. As much as has fallen out over two days, I don't think it will be long before it's all gone.
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Bump for those seeking experiences and info about Taxotere/Cytoxan chemo regimen.
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Hi, I am 9 weeks post last TC chemo. I don't have any hair growing. Did anyone have hair start to grow this long after treatment? I am terrified I might be one of the unlucky ones with permanent hair loss. Thanks!
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Welcome Baxterbean! It was exactly nine weeks after I finished my final TC that my scalp started itching like crazy. It was a sign that the hair was going to start growing again. It was slow going, but then one day you look in the mirror and your head is covered with little hairs...yippee! Hang in there and have patience. Hugs to you.
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It has been 5 weeks from my last chemo, I see baby hair since my fifth treatment.
I still have swell ankle and feet will it gone very soon? It is triggered from my short haul flight and I will have a 9 hours flight next month
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I just happened to stumble across this thread. So glad I found it. Fingers crossed that I will be getting my first docetaxel (Taxotere) infusion on Friday. I say fingers crossed because my WBC may be too low. I find out on Thursday when I have blood work and a consult done.
I've already completed my three rounds of FEC. Which honestly wasn't as bad as I had imagined it to be. The worst side effect has been the runny nose and watery eyes. To be fair that's probably my seasonal allergies kicking in which normally are under control. Have started taking Claritin which kind of helps. By the sounds of what most people are saying I'll need to take the Claritin throughout my three rounds to help with bone pain. I will have to give myself a shot of Neulasta between 24 to 72 hours after the infusion.
I've already lost most of my hair. What's left is only peach fuzz. I live in Canada and there's no local place for cold capping. Has to be brought in from outside sources. The nurse during my last FEC infusion mentioned doing the icing. I'm not too sure about the icing of the feet and hands though. Is it worth it? How long do you have to ice? I tried the ice in my mouth last time at suggestion from the nurse to help with taste issues. But it didn't really help at all. I still lost my taste for two weeks.
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pinkismycolour, I was pretty diligent about keeping ice in my mouth during my docetaxel, and didn't have many problems with taste issues. After my last 3 infusions, I had problems with the way catsup tasted, but that was it, and it went away in about 3 days. I gargled with a soda/salt solution, and didn't have any mouth sores. I wasn't very diligent about the gargling, so maybe I wouldn't have gotten them anyway.
I have Reynaud's syndrome, so my MO didn't recommend icing my hands and feet. The longest side effect I've had (other than hair loss) is swollen feet and ankles from the docetaxel. It only lasted 5 days after the 3rd treatment, but they've been swollen for 2 weeks after the 4th. He said it could last 6 weeks.
I still have a few random hairs that survived, and some down at the back of my head, but it's going to be a while before I see much growth, I think
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Thanks Irwells. I guess it's the wait and see game as to what side effects I do end up having. Everyone is different. But it's always good to know how others manage.
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pink is my color- Glad you found this chemo thread. If you are wondering about the Neulasta and Claritin, this may help explain the connection. Neulasta is a one time shot administered 24 hours one has had a chemo round. Sometimes, it is administered at the infusion center or there is a Neulasta OnPro Injection which does not require a return to the infusion center for the Neulasta shot. Here is a link to the Neulasta website which better explains how the OnPro injection works.... https://www.neulasta.com/onpro/
I took the Claritin for 7 days, starting the morning that I would receive the afternoon Neulasta shot. I'm assuming that it helped since I did not experience any bone pain. That is not to say that I didn't have aches and muscle pains from the chemo itself. The Neulasta makes the bone marrow work harder to produce blood cells which may be the reason for the pain associated with the Neulasta.
Some people self administer another form of the bone marrow booster known as Neupogen which is given over a several day period. You probably need to talk to your oncologist to see if and when Neulasta or Neupogen is appropriate for you. I didn't start my Neulasta shot until it became medically necessary for me to receive it. ( I developed a high fever and chills 10 days after my 3rd round of chemo and it was only then did I start to receive that Neulasta injection post chemo round.)
As for the icing of the hands and feet, that is a very personal choice. I iced my hands and feet because I wanted to see if it would help my nails from darkening and to not lift. My nails did discolor ( slight yellow) and I had "dents" which would appear after the chemo round ( similar to a tree ring). I iced my finger tips and my toes. I wore hand gauntlets when I iced my hands and thin socks when I iced my toes. If you want more info about icing, let me know. Some infusion centers provide patients with frozen mitts and booties. I opted for ice since the ice stayed cold longer than the frozen gel mitts and booties. I iced for 15 minutes before the Taxotere infusion, 1 hour during the infusion and 15 minutes after the Taxotere infusion for a total of 1 1/2 hours. I think it helped since my nails did not darken or lift and I did not develop neuropathy in my feet. I figured that I could handle being uncomfortable for an hour and half for 6 rounds of Taxotere versus dealing with the neuropathy effects postchemo for an unknown period of time. I know others who did not ice----some did not have any nail damage or neuropathy while others are still dealing neuropathy issues. No matter what you read about others chemo experiences, make the choice that is best for you.
Wishing you and others the best .
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MelroseMelrose: Thanks for the info. I will be taking the self administered shot. I have my first one waiting in the fridge.
I did find this interesting trial on icing during infusion. Looks as though they did find some merit to icing. I'm going to check with my MO tomorrow to see if they're okay with icing.
http://www.sciedu.ca/journal/index.php/jst/article/viewFile/9340/5863
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Pink - I iced both my hands & feet with frozen peas - easier & last longer than crushed ice. I also did 15 minutes before, 60 minutes of infusion & 15 minutes after. I had to change the frozen packs half way through.
Unfortunately I did NOT ice my toes the first time - the heavy loading dose. Although I didn't loose my big toe nails, they still have not completely re-attached 3 years later. I had minor neuropathy in my fingers which has mostly resolved. But my feet are still mostly dead lumps. Hope icing works better for you.
I had Neulasta from the first infusion. Luckily someone had told me about Claritin, which I took the day before & for 4 or 5 days after. I had none of the horrible joint & bone pains.
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Bump for those reading this thread and learning how others got through Taxotere/Cytoxan chemo regime.
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Bump for those reading this thread and learning how others got through Taxotere/Cytoxan chemo regime.
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Good evening Melrose!
I read through the posts here as I too am receiving TC. I have my 4th treatment on Tuesday, and I still have two to go in my plan. I noticed you received 6 infusions as well. My 3rd treatment hit me a lot harder than the previous 2, and it has me nervous that I still have 3 to go. How did you handle 6 infusions? Any secrets? I appreciate any guidance. Glad to see you are doing well and continue to find good health! Thanks bun hes
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MamaFelice- Woohoo ..... you are now on the halfway and heading towards number 4!!! As you probably have read, the side effects of chemo are cumulative and at some point, one does notice the chemo round does affect one a little more. Sometimes, it takes longer to feel ok during the 3rd week before the next round and one may find one is moving a little slower. It's okay and just a part of the time in chemoland. As for my getting through 6 rounds of chemo, I did the best I could to take care of myself which meant eating and resting well and getting out to exercise. I considered my chemo like a personal science project on me. I kept a food diary, drug diary and how I felt daily diary. The food diary helped to figure out what I could eat when and I just didn't have to sit and think what I had done during the 3 week intervals between chemo rounds. If you are wondering if I had eating issues, I did. My taste buds went on vacation for 2 weeks out of the 3 weeks but thank goodness they returned before the 3rd week. I ate small meals 5-6 times a day. There were many times that I didn't want to eat and found it difficult to even a small plate of food. I knew I had to eat so I ate for energy and body fuel and not for comfort. I used to look at food magazines in an effort to get myself interested in food. The drug diary was to help me keep track of when to take my meds post chemo.
I made efforts to get out of the house as much as I could. This meant going out to eat, going to the grocery store and going shopping. in short, I knew that it was important for me to do the things that had always been a part of my routine. It does mean that one has to think about where one is going and health issues that arise from crowds of people and eating out.
Trust yourself.... you know your personal physical limits and the chemo effects that you have experiences. If there are times when you feel like not moving, rest. If there are times when you feel a little down and need to cry, allow yourself to cry. It's okay. I know you have been through a lot physically and emotionally. Just have to keep moving forward. You see being in chemoland is like a marathon. One does get rest stops ( water breaks) and it does get a little more difficult after each rest stop to get going and keep going on. You want to make it to end of the marathon and cross the finish line. It doesn't matter when you finish.... just finish. That is enough.
Sending you positive energy, peace and calm. You are doing this and moving forward. Keep posting. Just know that you are not alone and never will be.
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What Melrosemelrose said is perfect. That's exactly how it was for me. It is difficult to go through at the time but after you cross the finish line, life is better. I didn't think at times I would make it through with the Docetaxel but now three months PFC the only reminder I have is the slow growing hair on my head.
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I’m also starting TC on January 10th, 2018 and joining this thread. There is a lot to learn, and a lot of great info here. Thank you all for sharing your experiences and coping mechanisms
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Welcome Roxy13!!! Glad you found this thread. There are helpful hints throughout this thread. If you have questions, please do not hesitate to ask.
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Thank you Melrose for all the encouraging words!
#4 was yesterday -- glad to get another in the books! Only 2 more to go! Felt a little better after this one than #3. Forced myself to drink over 2 gals of water since yesterday morn and I think that helped. I appreciate all your tips and suggestions-- and I agree with you wholeheartedly on the importance of healthy eating and exercise. Two great pillars of good health. It just really stinks to have to poison myself every 3 weeks, but I remind myself constantly of the it's power to eradicate the BC beast--& before I know it, it will be behind me!
May I ask which of the hormone therapies you are taking, and why perhaps you have chosen such?
Thanks and hugs
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