Starting Chemo March 2016

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  • Melgirl
    Melgirl Member Posts: 165
    edited March 2016

    Nancy I'm so sorry you are feeling bad. I hope you are better soon.

    MFPM, If you find that the person administering your chemotherapy is not a RN please report this doctor to the board of health. It is not enough for the Dr to supervise a LPN, medical technician or medical assistant. Contact your original doctor's office for a new referral if necessary. If this Dr is supervising they will lose their license to practice medicine.

  • HRwinter16
    HRwinter16 Member Posts: 73
    edited March 2016

    so sorry Nancy, sending hugs!

    I am having a much harder time with round two of chemo than the first one. Session was monday. Yesterday was ok. But last night woke up nauseous and today woke up feeling like I had worst hangover ever, (no alcohol obvs) bad headache, dehydrated, achey, chills and queasy. Going to take the compazine when I can get the next dose and hoping the Advil helps too.

    It's funny bc I read/saw a Ted talk by William Li (recommend it if anyone is interested!) on healing power of veggies and fruits, so Sunday I prepped s weeks worth of extra fruits and veg for snacks but now I can only eat salltines!!

  • Mecool
    Mecool Member Posts: 70
    edited March 2016

    Just checking in with everyone today! I survived my first AC yesterday. Felt ok when I left there, it was a bit over 3 hours due to all the initial set up but should be less than 3 hours from here out :) I hit a wall about 3:00 pm though where I just got super tired and weak. The complete opposite of what I was expecting from that darn steroid! HAHA! So I managed to just lay around most of the afternoon/evening and keep myself up until the girls were in bed and I could get away with going to bed. I wasn't nauseous or anything, just had no appetite. I kept up on the zofran round the clock as they suggested. So I took my first ativan to help sleep and slept great. Got up at 1 am to pee (180 ounces of water will do that to ya) and it was time for another zofran anyway. Woke up feeling great today. Ate breakfast and had my one cup of coffee today as usual. Still feeling good. However, I feel like I'm on the edge of my seat just waiting for the bomb to drop for the next couple of days. Just got back from my neulasta shot so we'll see if that is an issue. But I took a claritan last night and the nurse told me to take it the next 3 nights. Funny story - she went to put it in my belly and said that's not going to work, there's just not enough fat. Thank you very much, I worked hard on that. And then she grabbed the back of my arms and said this will work much better. Wah wah!

    Hope you all are feeling great today! Would love to hear some check ins from others :) Thinking about you all daily! Wishing you good health and little to no side effects!

  • Loretta_J
    Loretta_J Member Posts: 67
    edited March 2016

    Send me a private message if you wish to join the FB support group.


    liretta

  • MFPM
    MFPM Member Posts: 69
    edited March 2016

    Okay, limited to private messages on here, so I'm blocked out for now.  I'm helping Loretta and page says can find or add by e-mail, so if you could send it to us privately, we can try it that way.  Here's the link again, though doesn't seem to work but can be added the other way if interested.  We're trying.  Support Sisters - 2016
     https://www.facebook.com/groups/1380615368631224/

  • Seashine
    Seashine Member Posts: 24
    edited March 2016

    well gals its day #8 and I feel like crap! I have been running a fever, never over 100.4 my whole body hurts, my tongue feels like it is burned all the time, you now that weird texture, numb feeling? New thing is I feel like there is an elephant sitting on my chest and I am in constant back pain. It runs from the base of my skull all the way down my spine and into my pelvis. It feels like my bones are bruised. Last night I woke up with severe pain and I could sleep. Two Tylenol and an Ativan later and I finally fell asleep for 3 hours only to wake up again in pain. I think it must be the Zerxio shots I am taking at night. Yesterday I totally broke down and cried, I can't believe this is my whole life now! Gosh darn it I am so mad!!!

  • HolaSandy
    HolaSandy Member Posts: 85
    edited March 2016

    seashine, I'm so sorry you are having a terrible day! I don't blame you at all for being upset and angry, that is totally understandable! Are you taking Claritin for the bone pain with zarxio? And for the mouth problems, definitely try to rinse often (every 2 hours or more often) with baking soda and water. If your SEs are not well managed, please call your nurse navigator or MO and let them know you need better control. Make sure you are keeping an agenda and tracking your SEs because I was told that it should be fairly consistent each treatment so you will know what to expect on which days. I am thinking of you and hoping you get some relief.

    Loretta, I will Pm you. I cannot find the group, I think it must be set to secret

  • Mecool
    Mecool Member Posts: 70
    edited March 2016

    I'm so sorry seashine :( I agree with Sandy that you should definitely call. My team is adamant about telling me I should not be miserable and to let them know so they can help. I really hope you can get some relief soon.

    As for the FB group, I'm a member of one other secret group and the whole thing about a secret group is that it's not searchable if you're not a member. The way we had to do it was for the admin to "friend" everyone that wanted in, then she sent an invite and then unfriended everyone....if that's what you want. I'm kind of a private FB person (one of those who has not and has no intention of announcing this diagnosis there) so I would probably unfriend after...no offense ;) But I still want in on the group!

  • MFPM
    MFPM Member Posts: 69
    edited March 2016
  • Seashine
    Seashine Member Posts: 24
    edited March 2016

    oh I have been calling and getting responses. They have been great, but nothing really makes it all better you know? Just a crap day I guess. I feel like such a cliche, I have good days and bad days.

    Others who are Zerxio, do you do a shot every night for 7 days? I have been taking the Zyrtecand Tylenol on schedule with the shots

  • NancyHB
    NancyHB Member Posts: 1,512
    edited March 2016

    Seashine, so sorry to hear you're having a rough day. There are definitely good days, and bad days, and it really sucks (totally not cliche!)

    Your SEs sound so similar to mine, which I think are part Neulasta (similar to your Zerxio), and part Taxotere (the mouth thing in particular). My MO is fond of saying they'll do what they can to help with SEs, but they can't eliminate them all. I'm pretty much expected to "get through it". I will say that my MO doesn't hesitate to prescribe pain meds when I ask for them, and even a very low dose makes all the difference in the bone and muscle pain from the Neulasta. I take them for about three days, just once or twice, and they make all the difference in the world. Don't hesitate to ask for them if you think they'll help. And with the low dose, I don't find it contributes at all to any constipation.

    I will say that sucking on ice for the entire duration of the Taxotere treatment, seemed to significantly improve the mouth situation this last time. I'm on Day 8 and just getting over the last of the "buzzing" lips and sandpaper tongue. I had no mouth sores this time, whereas last time I had several. I don't know if there's a way to alleviate the nasty taste, though - I'm just learning to live with it. :-(

    Hope you're feeling better soon.

    ETA: I don't know about using Zyrtec as a substitute for the 24-hour Claritin. Is anyone else using that instead?

  • Loretta_J
    Loretta_J Member Posts: 67
    edited March 2016

    I normally take Zyrtec for allergies. I switched to Claritin the night before and take it for 10 days. I never had but a little pain one day. I was not willing to take the Zyrtec since they said Claritan.


  • Logang
    Logang Member Posts: 421
    edited March 2016

    I normally take zyrtec for allergies, but swap them for claritan for 5 days with the neulasta.

  • Nina27
    Nina27 Member Posts: 77
    edited March 2016

    glad you doing well mecool, sorry you're having a rough day sea shine.

    I'm on day 3, my urine is still reddish in the mornings and I have "flushing" on my chest either from the steroids or chemo. I don't have much of an appetite but am taking my nausea medicine when I'm supposed to and it's definitely helped. I'm functional and have been able to care for my boys and go to work.

    I do feel sick thinking about going for the next round though, so I try push those thoughts out my head.

  • phaila
    phaila Member Posts: 279
    edited March 2016

    oh man sorry you're so sick.That totally sucks:( I hope you're better like tomorrow!

    I've been up all night with my son puking and pooping (buckets worth, both in the bathroom AND on his floor!!) after my hospital visit I'm terrified of catching something!! I hate all this fear:(




  • WannaCruize
    WannaCruize Member Posts: 66
    edited March 2016

    Seashine, I think you and I are the only ones on Zarxio. I just had my 2nd round of chemo yesterday. My prescription is for 6 injections total each round. I am to start them 24 hours or so after the chemo, so if chemo day is Day 1, then I inject it on Days 2-7. I'm taking Claratin, starting a day before chemo and will take it for about 10 days total. I read somewhere not to take it everyday for this purpose, because it can become less effective.

    Sorry you are having so much back pain. Definitely ask for some pain meds from your MO office, as it is hampering your recovery period. You need to feel better so you can get more active as each day goes by. Staying active is one of the best things we can do to make us feel better, and more 'normal'.

    Best wishes for you all. My 2nd round went pretty much same as the first, however when I was just finishing the Taxotere, my face got flushed, and had some tightening in my chest. They called for the pharmacy gal and she had them give me benedryl, which made it better. I guess I'll get that before each time from now on. One good thing, it only took two pokes this time (with the nurse sitting on the floor with my arm hanging down) to get the IV in. Definitely can't wait until my port install on April 11th, even though I'm only scheduled for 4 more rounds. MO again tried to suggest PICC line, and I said NO.

  • Jonsey22
    Jonsey22 Member Posts: 100
    edited March 2016

    My second round was Tuesday and I am happy to say that the SEs have been better so far. I exercised 45 minutes per day and have managed the big C much better. My skin seems better than last time so far and although I feel weak/tired and a bit agitated, I feel generally quite well. Chemo fog is quite noticeable this treatment. Comes with tiredness I think. My hands and feet are a bit tender but not too bad. Can't complain. Totally manageable. And I am half done now with 2/4 in the books.

    Gentle hugs. Hope you are all well.


    Cand

  • Fowlertee
    Fowlertee Member Posts: 13
    edited April 2016

    Hello Ladies,

    I just had my first treatment on Tuesday. What a long strange trip it's been. I haven't updated my profile with my chemo..Taxotere and Carboplatin with a side of Herceptin and Perjeta;). SEs have been mild except for being a little tired and waking with a little nausea but immediately eating crackers and that seems to help. I first found the Chemo January group and they are a wealth of information as well. I'm happy to find some peeps who are in the same time frame.

    Through that other group it was suggested to try "Prevention" mouth wash which says it's specifically helps with those under chemo/radiation treatment. It wasn't cheap..but I'll give it a go and let you know.

    Happy April Fools Day! Trying to figure out how to fool my 5 and 8yro today:)

    For those who are struggling...hang in there and hugs to you all.

  • PositivePeg
    PositivePeg Member Posts: 8
    edited April 2016

    I spent 2 nights in the hospital after reporting a 100.5 fever to the on-call oncologist. Results: UTI, some dehydration, slightly low potassium & high wbc. I had lots of tests because Drs were concerned about a secondary infection - I was even seen by an infectious disease specialist. My wounds didn't heal well from reconstruction with mastectomy surgery in January. I had skin grafting done 2 weeks prior to 1st chemo & still have 2 open areas. Everyone wanted to make sure those open areas weren't infected - they're not - I did lots of show & tell!

    I've struggled a lot with side effects of taxotere. I seem to add a new one every other day! This is supposed to be my feel good time!! An adjustment may need to be made for my 4/11 treatment.

    Has anyone had to switch from taxotere to taxol?

    Any advice for hand/foot syndrome?


  • Italychick
    Italychick Member Posts: 2,343
    edited April 2016

    PositivePeg, ask your oncologist about Abraxane. I believe it is Taxotere without some preservative agent that causes some people to have more side effects. I believe the preservative is polysorbate 80, but I'm not 100% sure.

    Hugs, and hope things go better for you

  • Nina27
    Nina27 Member Posts: 77
    edited April 2016

    had chemo on Tuesday and feeling the worst today? Is this normal? When does one start to feel better

  • EllieSurf
    EllieSurf Member Posts: 8
    edited April 2016

    Love your wig! Looks great!

  • HRwinter16
    HRwinter16 Member Posts: 73
    edited April 2016

    Nina - yes it's normal! For me so far day three and four are the worst. Had my treatment Monday and finally feeling better today! Hope you feel better too

    Hugs to ev

  • Loretta_J
    Loretta_J Member Posts: 67
    edited April 2016

    Great news Candi.

  • phaila
    phaila Member Posts: 279
    edited April 2016

    for everyone on TC chemo what day would you say was your hair loss day?? Is it generally the same across the board?

  • DizzParkMom
    DizzParkMom Member Posts: 316
    edited April 2016

    T/c isn't as predictable as far as hair loss. There are always a few people around who have their hair linger around longer than others. I currently have a friend on T/c for ovarian cancer....today is her 7th weekly round and she still has a full head of hair. Her M/O said not to get her hopes up as he's seen patients on T/C suddenly loose it all at the very end of treatment. A/C is much more timely from person to person.

  • Faith-Ga
    Faith-Ga Member Posts: 11
    edited April 2016

    I'm going to get my port put in next week and start taxol and herceptin the week afterward. Here is my problem. I had lumpectomy 2/1/16, then a week later radiation for one week through a balloon catheter. My trouble was determining my her2 status. The FISH was equivocal at1.6 and so my dr ordered a different fish test that is supposed to help determine equivocal fish scores by comparing her2 to tp53. by this method it says I'm positive. I got a second opinion and she says im negative. Got a third opinion and she says i'm positive. So, it has taken awhile to get to the point of getting started on treatment! DR#1 said originally that I needed to start treatment within 90 days for it to be effective. He didn't say anything about diminishing returns based on how long before i began treatment. Dr#3 said she likes to start patients within 4 to 6 weeks after surgery. So now it looks like i will be finally getting on taxol by somewhere around day 70 to 73?! i'm so upset it has all taken so long and if it's not going to be as much help because of the length of time that has passed, should i even bother with taxol and it's side effects!!! I'm soooo stressed out and frustrated. Has anyone else had to wait so long to start treatment or been told time to begin taxol was so important?

  • Fowlertee
    Fowlertee Member Posts: 13
    edited April 2016

    Faith..I was dx Oct and just started treatment this week. I've had a lumpectomy, dbl mx, auxiliary lymphnode dissection, what else? ? It took from Oct to Jan to have surgery...I asked if the time was a problem and was told it was fine..since it was out..scans done and now just getting the stragglers. I feel like I should be done by now. Hang in there...I'm sure you're right on time:)

  • Faith-Ga
    Faith-Ga Member Posts: 11
    edited April 2016

    Thanks Fowlertee, that is reassuring. I'm up one minute and down the next. I'm not having a good night emotionally. Frustrated cause one day dr says taxol 12 weeks and herceptin with it every 3 weeks and then continue with the herceptin every 3 weeks for a year. Now today he says taxol weekly 12 weeks but the herceptin will be weekly for a year instead of evey three weeks, according to his nurse. I just dont know what difference it makes or why he changed his mind. I will get the double mx and ovaries out within the year as I tested positive for brca2. Got to take one thing at a time i suppose.

  • BlueKoala
    BlueKoala Member Posts: 190
    edited April 2016

    I'm on day five (started Tuesday). Tuesday and Wednesday were okay. Mostly just felt tired and a bit like I had a head cold. Thursday and Friday felt so horrendous I can hardly stand for more than a few minutes. Saturday today and I still don't feel much chop. Hoping tomorrow I can at least feel I can walk from one end of the house to the other without feeling weak and woozy.

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