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Cytoxan Taxotere Chemo Ladies- February/March 2013

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Comments

  • moderators
    moderators Posts: 8,035
    edited July 2019
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    Dear tultha,

    Welcome to the BCO community. We are sorry for your diagnosis and treatment but glad that you reached out to our members. We hope that you will find support and helpful information here from the shared experiences of our community. Here is a link to the Starting Chemo June 2019 topic that tennisgirl1 mentions in her response. You may find additional support there.

    The Mods

  • UpstateNYer
    UpstateNYer Member Posts: 331
    edited July 2019
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    hi Tultha, I completely know what you're going through. My first 2 T/C's were brutal. It was as you described. I told my hubby, can't do this again. Another person going through chemo suggested me asking MO for extra fluids during infusion and to cut chemo dosage. My MO gave me extra saline iv and cut by 10% my chemo. It made a world of difference. I had very minimal side effects. I also took steroids for 4 days after chemo as well as Claritin. The only issue I had after 3rd chemo was some insomnia for 2 nights. But, compared to first 2 visits, the aftermath of this one was easily tolerable. Good luck. My last one is this Wednesday, and I am not dreading it, as I think doctor will follow same protocol as last time. Hope you will get through next txt ok. PS: drink plenty of water before, during and after txt.

  • tultha
    tultha Member Posts: 7
    edited July 2019
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    Thank you for all the supportive comments from members of the group. It *does* help so much to hear from people who have gone/are going through the same thing, specifically with the same medications. It is day 15 today after my first treatment, and my hair is falling out like crazy. Silly enough, this doesn't bother me nearly as much as the unanticipated side effects. I had about a foot of my hair cut off before chemo...that was hard. My hubby had his head shaved in solidarity (although he didn't have much to begin with, LOL). He has been my rock through everything and has stood behind each and every decision. We are making this journey together and I am so lucky to have him beside me! Whatever I need....whether it be a hug, holding my hand, a shoulder, a sounding board, a cook, maid, or caretaker, he is there.

  • Bumming19
    Bumming19 Member Posts: 26
    edited July 2019
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    Good luck to all of you ladies starting this journey. It sure isn’t always an easy one. I had my 3rd treatment on July 3, 2019. I had not had the Neulasta injection previously, but since I ran a fever, my mo prescribed it for me this time with the OnPro on July 4th. I have to say, I was truly miserable. I flew on July 5th and with flight delays and bone pain, I was in bed most of the 6th and 7th. I did use Claritin, but didn’t really offer much relief, if any. I’m not sure whether to have it after my final treatment on the 25th of July. The issue is my daughter is getting married out of state on August 10th and I want to feel my best. Any advice? Is travel better by car? I haven’t experienced too many bad side effects except after the Neulasta. I have some days of tiredness, some days of bowel issues, yucky mouth, but overall managing ok. My one time of fever only lasted 8 hours and I Way overdid cleaning and gardening and getting ready for my daughter’s bridal shower. Not too smart of me to overdo during my nadir, but this is a very special time in my daughter’s life! I am definitely not overdoing it now. Is it better to travel by car right after chemo or wait a week? Thanks for all the support and advice. I’m kind of in a slump today

  • Bumming19
    Bumming19 Member Posts: 26
    edited July 2019
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    Here's another question. Does everyone lose their eyelashes and eyebrows? So far, mine are intact. I did lose my hair 17-20 days after the first treatment. I've been using ice mittens and slippers during infusion. So far, so good.

  • pink_is_my_colour
    pink_is_my_colour Member Posts: 265
    edited July 2019
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    Hi ladies:

    I went through all this two years ago. You have my sympathy. After my first treatment I thought I'd rather die than go through another treatment. But by the time the next treatment came I was feeling a little better and thinking I can do this. Second and third treatments were better because I knew what to expect. And the side effects weren't quite as bad.

    All I can suggest is be kind to yourselves. Lie down when you need to. Let your caregivers know your symptoms. Get your doctors to prescribe medicine to help with the side effects. Let people know you're not feeling up to everything.

    Bumming: I lost ALL my hair, eyelashes, eye brows, arm hair, everywhere, even my nose hair. It did grow back except for the armpit hair. One blessing from chemo. Not everyone loses all their hair like I did. I was just lucky. Most people will understand that you're not up to cleaning etc. In fact some people will offer to help clean up and let them. I didn't and I regret not letting people help out.


  • debrac
    debrac Member Posts: 63
    edited July 2019
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    Bumming,

    I did not lose my eyelashes or eyebrows, thought I would, but didn’t. I have a thin spot on one eyelid. My hair on top is all gone, just starting to grow back. I had 4 treatments of TC, no icing or cold capping.


  • Flower216
    Flower216 Member Posts: 87
    edited July 2019
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    Hi!

    I did lose all of my brows and lashes a month after losing my hair. Honestly, losing lashes and brows were harder for me than hair (I wore hats/wigs out of the house) because I now "looked sick" I went to Sephora and the amazing girl there showed me how to draw fake brows with "Benefit Foolproof Brow Powder", and told me to use eyeliner. It made a HUGE difference! My lashes grew back just as they were, but my brows are now a light colored peach fuzz. I still use the brow powder, but it is much easier now that I have a guideline to follow. Sephora girl also suggested a brighter color of lipstick to brighten up my face.

  • Bumming19
    Bumming19 Member Posts: 26
    edited July 2019
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    Thanks for the info Flower216. How are you doing on the hormonal therapy

  • Bumming19
    Bumming19 Member Posts: 26
    edited July 2019
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    Thanks DebraC for responding! Smooth sailing for the rest of your treatment

  • Bumming19
    Bumming19 Member Posts: 26
    edited July 2019
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    An advice on traveling?

  • Bumming19
    Bumming19 Member Posts: 26
    edited July 2019
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    Thank you pink is my colour for your advice and encouragement.

  • minustwo
    minustwo Member Posts: 13,109
    edited July 2019
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    Bumming: re the Neulasta, take Claretin for a couple of days before and at least a week after. It won't fix everything, but it did help me.

    I agree with Flower about brows & lashes. I used Latisse to try to keep my eyebrows. It worked reasonably well. Brows thinned but I never lost them all & never had to use makeup.

    I would recommend - guests or not, daughter or not, wedding ot not - you MUST pamper yourself. It really doesn't matter about the vacuuming. The fatigue is cumulative, so you it's never to late to stop trying to be super mom. In my experience I felt pretty good the first two or three days. I did adjust my steroid dose from the prescribed 2 the day before/2 the infusion day and 2 the day after. I split up that third day & took one on day 3 & one on day 4. It made a huge difference in the mega drop in energy. Of course check with your MO. In any case, if you don't have to do the driving and can sleep in the car, I might start the night of chemo to be there before the worst SEs start. One caveat - I had severe diarrhea for at least the first week every time. Your gut could make the difference.

  • Flower216
    Flower216 Member Posts: 87
    edited July 2019
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    Bumming-my first three weeks on Arimidex were tough. I was so stiff and had a lot of body aches...constantly moving all over my body. MO said exercise is best medicine, but I had to take advil in order to move. Week four things improved, now just have slight body aches and they are not constant. Its amazing how everyone's experiences are so different. Good luck to you!!

    MinusTwo-I'm happy for you that your brows and lashes did so well. I actually never heard of Latisse unitl it was too late for me to use it.

  • tultha
    tultha Member Posts: 7
    edited July 2019
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    I'm a week away from my 2nd treatment, and my hair is falling out in handsful. Think I'll go see my hairdresser about getting my head shaved; I don't want to look like a poodle with mange. My hairdresser is wonderful; he told me I am now on "the plan"; whatever I need done is free until my hair grows back in. Although, with my luck, I will lose all my hair except that annoying chin and lip hair.

    Just a suggestion, I know many things don't taste right, or are the least bit appealing. Try oranges! I was so hesitant because of the mouth sores, but they didn't bother my mouth at all and tasted heavenly! Scrambled eggs also tasted quite good. Anything with a lot of sugar tended to taste bitter. That's something I kinda wish would stick around as I could stand to lose a few pounds. And, by all means, do what all these ladies recommend: rest when you feel the need. I, too, have overdone a couple of times and it just isn't worth it. You GO girls!

  • Fairydragonfly
    Fairydragonfly Member Posts: 132
    edited July 2019
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    Tultha - what a great hairdresser you have! My friends will be buzzing my head on July 18 (day 13 post first treatment). I don't know if it will start to fall out by then, but easier to plan ahead with everyone's schedules than find myself holding clumps of hair and the only option is paying someone to shave it.

    I'm hoping the rumours are true and my underarm/leg hair won't grow back. 🤞

  • minustwo
    minustwo Member Posts: 13,109
    edited July 2019
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    FairyDragon - half & half. My underarm hair never grew back. Wonderful!!! My leg hair gets long enough for small braids if I don't shave.

  • Fairydragonfly
    Fairydragonfly Member Posts: 132
    edited July 2019
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    I will take any positives, and no underarm hair fits that bill. 😄

  • Flower216
    Flower216 Member Posts: 87
    edited July 2019
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    My arms and legs were never hairy, and that hair never grew back. I did get underarm hair, but less than I had before. The hair that grew back the fastest was on my va-jay-jay!!! Go figure!

    Tultha-isn't it so comforting that some people are so caring! My hairdresser said the same thing. He actually trimmed my wig and halo to make it more like me!! He also said that when I get the okay to color my hair, we will use the most gentle products. (I cant wait for that day since my hair in 50 shades of gray now)

    Be well everyone!

  • laurieellenb
    laurieellenb Member Posts: 14
    edited July 2019
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    My eyebrows were nearly gone. My eyelashes got very thin and sparse. Two years later, my eyebrows are still on the thin side (I have to fill in with eyebrow pencil.) The eyelashes are coming back slowly - I finally have enough to bother with mascara!

    (On a related note, underarm hair has yet to return. No shaving in two years! Whoo-hoo!)

  • Bumming19
    Bumming19 Member Posts: 26
    edited July 2019
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    You ladies all bring a smile to my day. Thanks for sharing your experiences and advice. I really hope my chin hair never grows back! Today, 8 days after my 3rd TC treatment I developed a very itchy rash all over. Off to pick up a steroid pack the doctor ordered. Will the fun never end?!!!

    Flower216-glad your side effects are getting better

  • tmh0921
    tmh0921 Member Posts: 518
    edited July 2019
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    Just wanted to pop in and say thank you to everyone sharing their experiences. I thought I was going to get to skip chemo, but my Oncotype score came back at 26. At my oncologist appointment today I found out that I’ll be starting Cytoxan and Taxotere in September after I’ve healed from surgery. I’ll be getting 4 cycles, 3 weeks apart.

    Now that I have my full treatment plan in place and everything is scheduled I’m in kind of a frustrating waiting pattern. Don’t get me wrong, I’m not looking forward to surgery and chemo, but I’m ready to get this all started so I can get it done.

  • Fairydragonfly
    Fairydragonfly Member Posts: 132
    edited July 2019
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    Question - did anyone experience pain either from the Chemo or from Grastofil 6 days after the infusion? My tail bone, back, collar bone, and to a lesser degree my legs are all aching/hurting.

  • tultha
    tultha Member Posts: 7
    edited July 2019
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    Fairydragon,, yes, yes, yes! If they haven't given you anything except Tylenol, ask for something stronger. I was hurting so badly, that's when I almost decided to quit. The PA gave me Tramadol, which I took as often as prescribed for three days. It allowed me to at least sit, stand, and lay down comfortably. I was almost hysterical from the aching. Call your oncologist! My experience was that when the aching was over, I began to feel significantly better. Most of the stuff that followed was minor in comparison. Good luck! (I have round #2 this coming Tuesday)

  • tennisgirl1
    tennisgirl1 Member Posts: 30
    edited July 2019
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    Fairydragon, YES! I, too, had incredible deep bone pain after my first infusion, due to the Neulasta. I took Claritin for 7 days starting on the day of infusion. I also took Tramadol for the pain. (Also, some edibles) By day 9, I was feeling better, and everyday after I felt better and better. It was intense, but it passes. My second infusion was better. The deep bone pain showed up, but seemed more manageable. I am getting ready for my third infusion a week from today. We’ll see how that goes.

    I agree with you, tultha, take whatever meds they give you to get relief from that pain. Ask for more if your meds don’t help. I learned that lesson after round one. No need to brave through it if you can find comfort. Also, tultha, I’ll be curious to see how your second round goes. I hope it is much better than the first. I’ll be thinking about you on Tuesday.

    Take care everyone, and hang in there. You are not alone. ❤️

  • laurieellenb
    laurieellenb Member Posts: 14
    edited July 2019
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    Both femurs, hips plus my lower back. I thought it was ridiculous, but the PA suggested taking Claritin (not Claritin D) the day before, the day of and the day after infusion. It helped - especially in the beginning. Full disclosure - by the time I got to my 6th cycle, only the narcotic pain meds gave me any relief.

    Your mileage may vary. Everyone's journey is unique unto itself. Call your oncologist. Figure out what will work for you. This process is tough enough without having to be in miserable pain to boot.

  • Fairydragonfly
    Fairydragonfly Member Posts: 132
    edited July 2019
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    Thank you ladies. I'm seeing my oncologist next week. I have two more injections to go and am dreading them. It sounds like one dose of Neulasta works the same as seven doses of Grastofil. My next chemo isn't until July 26, then another seven days of Grastofil. This bone pain SUCKS. I did find walking helped, but I can't walk 24/7 and as soon as I stopped it came back with a vengeance. I will talk to my oncologist about Tramadol and Claritin.

  • anx789
    anx789 Member Posts: 233
    edited July 2019
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    Hello, lovely people. For those barely starting TC, hang in there, things will get better. I had TC x 6, my last infusion was 3/16/19. I can say at this point, all SE are gone. I have a question regarding hair growth, how long did it take for your hair to grow back? I am 4month PFC and my hair still only 1/2-3/4 inch long and very thin, I didn’t get peach fuzz till 12 weeks. Does it take longer than people that got Taxol? Any input will be appreciated

  • Flower216
    Flower216 Member Posts: 87
    edited July 2019
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    Ohhh How I can sympathize about the bone pain. I had back spasms and awful pain in my legs and arms...took a full week to get through it. I tried walking (even inside my house since it was winter) which did help slightly. Hang in there!!! HUGS!!!

    Anxious..I am 5 months PFC and my hair is growing slowly. I have a full head of hair but the longest ones are almost an inch, but most of it is shorter. And now its starting to curl....I never had a curl in my life. I woman I met, we both finished chemo the same day....her hair is probably two inches long! It is frustrating!!

  • minustwo
    minustwo Member Posts: 13,109
    edited July 2019
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    Responding the the Neulata pain discussion - I took Claritin starting the day before the infusion and for 7 days after with good results. However I was told to take regular Claritin and NOT Claritin D

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