Cytoxan Taxotere Chemo Ladies- May 2017

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  • Suthrngrl
    Suthrngrl Member Posts: 5
    edited August 2017

    Hi

    Finished 4/4 TC w/ Nuelesta and Chemo Cold caps on Aug 7. Its now been 14 days post and muscles are very sore and tight and lots of arm, left leg and ankle swelling! Is anyone else having swelling? Dr. Ruled out blood clot and we are trying low does of LASIX but no relief yet- also very tired body wise not enough to sleep but just rest. Good news kept 80% of hair with the CCC! Walking for 35-40 min everyday too?

    So glad this is over- but want to feel better!! Tips and advise appreciated!!! This round was worse of all- I guess it all added up!.

  • VLevic
    VLevic Member Posts: 30
    edited August 2017

    Yes,Suthrngrl, the 4th one is tough. Even though I was out for 6 weeks before my 4th one, I still felt it to the point that my hands and finger swell with redness and itchiness which my MO called the hand/feet syndrome or what they erythrodyesthesia which I just self treated with cold pack, lots of lotion and Zyrtec at night. It seems to aggravate it with heat and it is very hot in Texas that I try to stay away from the sun. The cold really helps a lot and there is a joke now at the hospital where I work that I love cold or anything cold, they say you and your cold pack. I have always like cold than heat and with my for anything that starts, you can see me icing it. One that helps at all was ducking my hand in ice cold bucket and leave it there for no more than 5 seconds and then duck it again for 5 times. I can suggest for you to do the same as the hand/feet syndrome can swell on your legs as well. I thought I was having a cellulitis or lymphedema already but I calmed down and address the issue. The only thing I know it is not is the itchiness that came along with the redness. Even my head was itchy which is why I took Zyrtec. I would try to see if you can do the ice and typically ice will bring your swelling down immediately. Also propped them up and if you can tolerate even just compression socks, you can try it as well.

  • GingerA
    GingerA Member Posts: 18
    edited August 2017

    Finished my chemo 5 weeks ago and this is my 3rd week of radiation therapy. So far so good, it's usually pretty quick and they play my favorite playlist from Spotify for me. I just use the cream my doctor gave me for now but if the skin starts to get red or irritated, I may try Aloe or something else.

    Last week, I felt pain in my rib cage and felt this vertical line under my skin and panicked. It brought me back to when I felt the lump in my breast. Turned out, it is an after-effect of surgery called "Cording" or "Auxiliary Web Syndrome." some people get it in their underarm where lymph nodes were taken out. It's basically a swollen, inflated blood vessel and the doctor told me to put a warm compress and take ibuprofen as needed until it goes away eventually.

    VLevic & Suthrngrl I'm still suffering from the post chemo muscle pain, too. I had an ultrasound done for my calves before and it was negative for blood clots. And I had the same thing done for my entire legs too because my thighs also started hurting, but it was negative as well. The pain and soreness just won't go away. Swelling has calmed down though. Oncology massage, foot massage, stretching, Motrin, heat/cold pack all help but temporarily. I hope it goes away soon. I have hard time walking up the hill and stairways. It even hurts when I sit and get up. I try not to make noise from the pain in public, I'd really sound like an elderly lady.

    LeesaD I used PCC but still lost about 90% of my hair. It still had a length for ponytail or bun but got miserably thin. I cut off the longer part because it was getting in the way of scarf and wig. I can see my hair very slowly started growing, just mostly gray hair. I bought Toppik in medium brown online and plan to try it out sometime soon to see if it makes my hair look any better. I've gotten used to wearing scarves and wigs, got a whole bunch of them. But I can't wait for my hair to grow back just like everyone else here. I do realize I have to be patient. I'm not taking any supplement following my doctors' advice.








  • lrwells50
    lrwells50 Member Posts: 254
    edited August 2017

    suthrngrl, my MO said lasix doesn't help this swelling, and it can take 6 weeks to resolve. I'm 4 weeks PFC and my legs and ankles are better, but not normal yet. My lower legs are very tight feeling, can't wait for it to go away. I'm still lacking stamina, and am not sleeping well.

  • Suthrngrl
    Suthrngrl Member Posts: 5
    edited August 2017

    Lrwells50 - what does help with swelling? How are you now?? I am 20 days PFC or almost 4 weeks finished...

    I've been going to LE therapist, tried the LASIX (didn't work but was only 20mg daily) - resting with legs up- watching salt- and NOTHING is working. Drink over 72 oz. of water daily.

    Today right hand puffed out - and as usual behind both knees, left ankle and right arm (more than left) are still thick and tight.

    Need to start anti estrogen soon but afraid to add those side effects to these! Plus will be plane traveling in 2 weeks and yes will wear compression on all but so dated that too will cause more issues...

  • JuliaJazz
    JuliaJazz Member Posts: 246
    edited August 2017

    Sutherngirl - Hope that swelling clears up.  I wonder if you might try acupuncture???  I am starting to think about my diet post chemo.  Before my diagnosis I had lost 60 lbs in 18 months on the Atkins diet.  I decided to give myself a little bit of a break and not be so strict during chemo but I will go back on during my Arimidex treatments which will start sometime in September I think.  The oncologist says the less adipose tissue you have the better and that is the diet that works for me AND there is no sugar which is a plus.

    Today DH and I closed down the infusion center so the nurses were the only ones to hear me ring the bell.  I iced my hands and feet for the final time - YAH!  Today I went au naturelle with the hair.  I still have enough hair to walk around with although I often wear a scarf or a turban.  My best wishes to all of you as you continue your treatments.  Know that I read all of your posts and keep you in my prayers even if I don't always have time to answer each one individually.  I am still very busy with my Dad, helping him adjust to having help 24 hours a day.  It is hard for him as he has always been very independent.

    image

  • lrwells50
    lrwells50 Member Posts: 254
    edited August 2017

    Suthrngrl, I don't know what helps the swelling. I'm 5 weeks PFC, and strangely my feet are better, but my ankles thru my knees are still swollen. The MO said walking would help, but to put my feet up afterward. I haven't had any arm swelling that I've noticed, other than my fingers off and on, and that would happen before chemo. My legs are better when I get up in the morning, but that makes sense. Can't spend weeks in bed, though

  • LoSed77
    LoSed77 Member Posts: 1
    edited October 2017

    Hi all- what a wonderful forum, I wish I had come upon this before my first treatment last Friday! Overall, the infusion experience wasn't too bad except for a bad reaction to the Taxotere. Thought everything was going ok with just the little weird SEs until the GI and tired symptoms hit me today, but still hasn't been nearly as bad as I'd drawn up in my head. Given that I've had some tingling in my fingers and toes since chemo day, I think I will try the ice bags on my hands and feet next time- it's the one symptom I can't stop worrying about long-term!

    One question that I did have: I did the Neulasta transdermal the day after, and though I had a pretty uncomfortable time for the next 48 hours, I think the Claritin must help a lot because it only worse than maybe a 6/10. However, when the Neulasta infusion itself happened, I got very hot and my head was fuzzy for lack of a better word- needed to lie down for the last 20 minutes of the infusion and then things were fine. Has anybody else experienced this effect? I ask because I am supposed to go on a day-trip for work on the day after chemo next time (the doctor said this is still usually an OK if not great day for people), and while I could have functioned for 90% of that day, I worry about this feeling happening again while we are on our 3-hr drive home. Anything I can do to prevent it?

  • VLevic
    VLevic Member Posts: 30
    edited October 2017

    Hi! I'm not sure how you're body is going to react with chemo and then with Neulasta on the second time. In my experience, I feel like the more chemo I did, the worst feeling I get, particularly with fatigue. Some people feel differently though so if you feel like going to the day trip, you can go just make sure that you don't drive and have meds handy. Most of us are done with our chemo and I'm glad that you found this thread helpful. Are you using cold caps? Good luck and stay strong!

  • MusicallyInclined
    MusicallyInclined Member Posts: 10
    edited April 2018

    Hi rdsm,

    I ran across this post from when you were just preparing to start chemo, my schedule is very similar to yours 4 treatments and same drugs. I wanted to reach out to you to see how you are doing and ask you what your biggest challenges were as far as side effects are concerned. I hope this message finds you well and that you are on the other side of this.


  • ClareCo
    ClareCo Member Posts: 66
    edited April 2018

    Hi everyone.

    I start chemo (TCx4) on Wednesday. Do any of you take Zofran for nausea. My NP said she's giving me the script to take it "as needed" but I'm wondering if I should take it ahead of time to prevent nausea from occurring at all. Would love to hear your personal experiences on this - am really dreading SEs.

    Thanks.

  • Char105
    Char105 Member Posts: 35
    edited April 2018

    ClareCo Start taking the meds as soon as you anything. Are you getting the Neulasta shot? With TC and the shot and Zofran I got the worse headache and they had to change the Zofran because that can happen. Tylenol wouldn't work so I ended up taking a pain pill that was left over from my surgery. That helped with the headache big time. Just be aware in case.

  • DebAL
    DebAL Member Posts: 877
    edited May 2018

    Hi everyone, I thought I would join even though I am 2 treatments in. I think it's nice to chat with others on the same regimen. I will be totally honest ... I had zero and I mean zero side effects with the first 2 treatments. Doesn't mean the next 2 will go this smoothly and I will be thankful for the 2 good ones I did have if that's the case. If I wasn't bald I would think they gave me water! In a nut shell, I take the steroids twice a day the day b4 and day after chemo. Infusion day I get an IV drip of steroid and anti-nausea med. I have needed nothing at home for nausea. Slightly constipated and take a colace for that. No diarrhea. I go in for neulasta shot the day after. I take claritin 2 days b4 chemo and continue for a week after chemo. No metal taste, great appetite. I do drink 6-16 ounce waters starting the day b4 chemo for about 4 days then taper off a bit. Treatments are Monday and I go back to work on Thursdays. Walk 3 miles a day even on chemo day. I did not do cold caps. Had my hair till day 23. I do hear that eyelashes and eyebrows fall out weeks after treatment over and some have nail issues. Not looking forward to that. I do not ice my nails so I guess I will see what happens once I'm through. I was told to take anti nausea med at first "twinge" of not feeling well and to try to snack frequently. I feel fortunate to have done so well and don't really know why. I just wanted you to know that it can happen. Be hopeful you will do well too and we all can have this behind us soon.

  • ClareCo
    ClareCo Member Posts: 66
    edited May 2018

    thanks Char105. I filled the zofran Rex: my insurance would only cover nine pills, so I hope I won't need more than that.

    DebAl- that's amazing about minimal SEs-- it is nice to hear that can happen!!


  • MamaFelice
    MamaFelice Member Posts: 216
    edited May 2018

    Hi ClaireCo!

    My experience was not as easy as DebAL, but not too bad nonetheless. I actually received 6TC-- so 50% more, and it was tolerable to the end. I may have taken 1 zofran pill, but I was also given compazine which I was told was lighter and fewer SE (i.e. Constipation), so I probably took one of those the evening of each infusion and would be fine next day. I used "Heather's tummy powder" (available on Amazon) to keep my system regular and never dealt with C or D. My taste buds were fine unless I ate spicy foods that first week after infusion. If I did, it would give me a rawness in my mouth. I did ice fingers and toes using simple cups and ziplocks-- no fancy mits....but mostly because I had 6 instead of 4, so thought wise, and I have no issues. I did not receive Neulasta shot. Told my doc I wanted to see if my body could rebound on its own first, and when it couldn't I would take the shot....never needed them. I remember my stomach gurgling a lot the first couple of days, and feeling an overall sense of malaise, but nothing major. I continued walking just about every day, but didn't do the more intense workouts I was accustomed to...mainly because I stayed out of the germy winter gym. I am 47 and have 2 teenage children....I received chemo before...25 years ago for lymphoma, and remember that regimen being a lot worse.

    You have got this! Give your body rest when it needs it! Find strength in your faith and keep a positive attitude! Let family and friends love on you every day! 4 treatments will be done before you know it! Best wishes, and happy to help with any other questions regarding TC. Go Girl! 💪🏼🦋🙏🏻😁


  • DebAL
    DebAL Member Posts: 877
    edited May 2018

    Mama, that is so good to hear. I honestly can't keep track of where I have been on these threads. It's helpful to share experiences but especially helpful when you know others are on the same regimen. My heart aches when i read so many are having side effects and i have had none. I wish with all my heart I could bottle up my first 2 experiences for each one of you. In fact that is one of the reasons i don't post often but I do want to give others hope. Everyone one of our experiences are different but if anyone cares to PM me feel free. Even if my next 2 treatments are terrible I am thankful for the first 2 going so well. We can get this done together ladies!

  • DebAL
    DebAL Member Posts: 877
    edited May 2018

    Clareco, how are you feeling?

  • ClareCo
    ClareCo Member Posts: 66
    edited May 2018

    Hi DebAl and everyone! I’m just catching up on all the posts as my first chemo side effects were rough and I ended up in the hospital for three nights. I had terrible muscle pain and joint pain and was super weak with a fever of 103+. They kept me in to try and figure out if/where I had an infection but they never found one. So Sunday I was sent home (the muscle and joint pain had almost completely subsided). Fever finally broke on Sunday evening and I was practically weeping with relief. Hoping to head back to work tomorrow. My MO was very attentive And I’m hoping she can work out a plan so next time isn’t as bad. Have any of you ladies spiked a fever or had severe muscle and joint pain ? If so,did you make any adjustments for future treatments? Sending you all hugs and good energy. Having you make sure such a difference!!

  • L8Blmr
    L8Blmr Member Posts: 133
    edited May 2018

    ClareCo, I am sorry you had to endure those side effects. I did not have a fever, so I'm not much help there, but I did have the bone/muscle pain with each chemo. Did you take anything for the bone/muscle ache? My MO said no Nsaids, so I started with Tylenol, but ended up taking Norco during the very painful days. A daily walk helped. I hope you can find relief on your next go round.

  • DebAL
    DebAL Member Posts: 877
    edited May 2018

    hi everyone!! clareco , I hope you are feeling better. I'm sorry you were in the hospital. Did your MO change anything with your plan that may help you for your next treatment? I am headed in for #3 on Monday. I hope everyone has a good weekend!

  • Engine104
    Engine104 Member Posts: 301
    edited May 2018

    Funny you should ask about fever. We’re in the ER right now. They’re running labs and cultures and then we’ll see.

    Fever is about 101.6. Chills and pain.

    One week out from first TC infusion.

  • DebAL
    DebAL Member Posts: 877
    edited May 2018

    oh no engine, I'm sorry to hear that. Very smart to seek treatment. I hope she feels better soon. Take care

  • MamaFelice
    MamaFelice Member Posts: 216
    edited May 2018

    Gosh, I hate hearing about you all having fevers and ending up in hospital-- which is the smartest place to go! I definitely had weird chills in my body post infusion....ususally lasted a day or two, but never broke into fever. I know allergic reactions run high with the drug that is the carrier of the Taxotere, and that is why they give the first infusion slower and why there is so much steroids given. Please report back with what you learn and keep us posted on how you all are doing. Sending hugs and healing vibes!

    (I received 6 TC from Oct 18 2017- Jan 30 2018

  • Engine104
    Engine104 Member Posts: 301
    edited May 2018

    Hi everyone,

    They ended up admitting my wife late last night. They ran labs and cultures, so far negative for infection. This could be one of those infamous chemo fevers of unknown cause. The plan is to push antibiotics and Neupogen and maybe come home tomorrow, depending on whether or not the fever goes away.

  • pink_is_my_colour
    pink_is_my_colour Member Posts: 308
    edited May 2018

    Fevers are quite common with Taxotere. Not sure why. I had higher than normal temperatures usually from day 7 to day 12 every time. I did have to go to emerge the first time when my temp was 38 C (100.4 F). They never found anything in the blood work to indicate why it went up. I felt fine. The only way I knew my temperature was up was by taking it. But they drill it into you to go to emerge right away with a temperature over 38 for over an hour as a precaution. After that first time I decided that if I felt okay otherwise I'd just wait and see. Most of the time it came back down if I took off my clothes and laid under the fan. Tylenol helped as well.

    For the first five days I had muscle and joint pain but it eased up after that. Just keep moving!

    The first round was the worst, after that I knew what to expect and knew what to do.

    It's definitely no fun but you can do it.

  • Engine104
    Engine104 Member Posts: 301
    edited May 2018

    Thanks so much!

    So far, they have not found a source of the infection, but they are changing her antibiotics and giving her more potassium. Her counts are slowly going up, but the doc said we'll be here until the fevers are gone and her counts, especially her WBC, is higher.

    As big a hassle as it is to come to the ER because of a fever, I think it is necessary to start meds right away. With chemo patients, there is always a chance the infection could go into Sepsis, which can be life threatening. On the other hand, I know my wife would have been much happier to have spent Mother's Day at home :)

  • pink_is_my_colour
    pink_is_my_colour Member Posts: 308
    edited May 2018

    Engine 104: The funny thing for me being in the emerge is when the doctor came back to give the results of the blood work. He was shocked and asked if I was on something that increased my WBC count because it was at 21. I had to educate him on Neulasta shots and chemo. I had to give myself the shot within 24 hours after each treatment. They didn't give me any antibiotics or meds because they couldn't find anything in the blood work and by that time the fever had gone under the 38. You definitely need to go because you just never know.

    Hang in there, you can do this!

  • Engine104
    Engine104 Member Posts: 301
    edited May 2018

    Hi Pink,

    Things are continuing to improve. Her WBC this morning was at the low end of normal. Neutrophils were still too low, so they kept her another day. We're hoping for tomorrow to go home.

    Like you, they can't find a source for the infection, either. I hear that is common with neutropenic fevers.

  • ClareCo
    ClareCo Member Posts: 66
    edited May 2018

    Well it sounds like everybody's fevers are going back down, thank goodness! Sending recovery vibes to all!

  • emac877
    emac877 Member Posts: 371
    edited May 2018

    Hi All,

    There may be a different forum for this..IDK. I'm new to the group. I was diagnosed in February and had a lumpectomy in March. My OncotypeDX score came back at 27. I'm 40. I have Stage 2 Grade 2 IDC with 1 of 3 nodes involved. I'm ER/PR positive HER 2 negative. I'm scheduled for Taxotere/Cytoxan starting on the 30th of May.

    I've been scouring the boards looking for personal experiences with this regimen. I've done a lot of reading on the Taxotere and it's pretty scary. More so than the Cytoxan I guess I'm really trying to make the difficult decision about whether this is truly more benefit than risk.

    Honestly, the one hard stop for me has been the risk of permanent hair loss and neuropathy. Anyone else go through this struggle? What have your biggest challenges with the Taxotere/Cytoxan regimen been? Has anyone worked through this successfully? I'm an ICU nurse and so I'm not quite sure how this will effect my ability to keep working.

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