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Chemo starting March 2019

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Comments

  • santabarbarian
    santabarbarian Member Posts: 2,311

    Hi everyone,

    Hang tough!! These SEs show the POWER of this medicine. The chemo is brutal but it's supposed to be, to annihilate the cancer! Work on keeping yourself as strong as possible!

    One thing the docs do not always offer, but which can help you feel so much better: a nutritional or saline IV a day or two after chemo. Its a bag of fluid going in and somehow it dilutes that polluted feeling. I got nutritional IVs and Hyperbaric Oxygen and both helped a lot. (Oxygen really assisted me when I was horribly anemic at the end.)

    If you are feeling horrid and throwing up, ask for IV fluids and see if they will give you some!



  • PJMask
    PJMask Member Posts: 1

    Started AC today

  • sparklegirl2018
    sparklegirl2018 Member Posts: 39

    Hi all,

    This is my first post to the group but have been reading all the posts to prepare myself for treatment. Its great to have forum like this for sharing and learning!!

    I am receiving AC x4 and then Taxol X12. Started AC yesterday. I went ahead and took anti nausea med (ondansetron) as soon as I left to try to head off any problems. Then took phenergan last night and slept great. I had a mild headache yesterday and today. I came into work late today and plan to work about 6 hours unless I get too tired. I feel a little light headed but I wonder if that is from the Claritin I started last night to help with bone pain from the neulasta. I see some people have delayed reactions around day 5-6. I am trying to drink lots of water but it is not my favorite :(. @santabarbarian My dr. did say if I am getting dehydrated and feeling bad just call and they will do the IV Saline. I think that would help a lot.

    I hope everyone has a good weekend with mild SEs! I plan to get as much rest as possible.


  • santabarbarian
    santabarbarian Member Posts: 2,311

    Glad your Doc is willing to give IVs!

    Normally I love plain water but the mettallic taste in my mouth made it really distasteful. I spiked it w ginger kombucha to give it more flavor.

  • farfalla6
    farfalla6 Member Posts: 92

    I'm starting AC next thursday: I love love love seltzer: are you not supposed to use it for hydration during chemo or after? confused about this.

    I also will be getting Neulasta shots with every cycle: I've read that Claritin can help with bone pain; my oncologist said they neither recommend nor discourage it and that a lot of patient s seems to find that it helped: did anyone do this, and if so, howmuch Claritin and which days?

    Also, should I chew on ice during the Adriamcycin part? if so, whats the best way to bring it in? Crushed ice in a cup?

    No port for me, getting geared up for next thursday. Planning to work Friday, then take off monday, back to work Tuesday.

  • DawnS1962
    DawnS1962 Member Posts: 198

    Hi, I've drank Seltzer with no issues. My oncologist instructed me to take Claritin an hour before the nuelasta discharges and for the following 4 days.

    Why no port? It

  • santabarbarian
    santabarbarian Member Posts: 2,311

    My MO recommended starting Claritin 2 days before chemo day, and to take it daily for one week. I never experienced bone pain.

    Yes, setlzer should be fine! (But don't be surprised if it does not taste the same!) There may be foods you normally love that just taste awful.

    You can use ice water or (what I did) a frozen smoothie. Ice your feet and hands too. You can use chipped ice or you can buy little gel-pak socks & mittens from Amazon and freeze them and bring them with you. You'll likely need more than one pair to rotate them.

    I also brought a heating pad and put it right on my boob while the infusion went in, and for several hours after at home.... I figured, I might as well get my chemo laced blood to the area that needs it! Plus it felt good, to counteract my frozen hands and feet.

    One thing I got from a MO consult with an integrative oncologist that I believe helped me a lot was to continue to exercise during chemo. Get out there and move. He recommended interval training. I did that, I hiked, and I did pilates 2 x per week. You want to give your body/heart the "hang on to your strength" message not the "convalescent" message.

    Interval program was:

    30 seconds @ medium intensity (can talk), then 30 seconds @ high intensity (can't talk) x 3 (For 3 mins of up and down intensity), followed by a 3 minute total rest. Do the whole process 3 times.

    It can be jogging, biking, treadmill or whatever you like. It is very good for your heart health to toggle up and down like this.

  • farfalla6
    farfalla6 Member Posts: 92

    thanks so much santabararian! Really appreciate the tips.

    DawnS-at Mskcc protocol is no port for AC-T.

    Had a fantastic sushi dinner— one of my faves and MOsaid no sushi during chemo. Plus 2 glasses of wine

  • Chickywicky
    Chickywicky Member Posts: 9

    I'm getting very anxious about starting chemo on Tuesday! I think my anxiety isn't helped by my lack of sleep. My brain just shifts into overdrive at night, and I end up wide awake for hours. I try to put on such a positive face during the day (I have a 9 yr and 15 yr old) that I think my worries just bubble to the surface when it's quiet.

    So in order to help with that, I've started writing a blog. I don't know if any of you would be interested in reading it, but just in case: chickyunfiltered.home.blog.

    Good luck and hugs to all going through their treatments, dealing with SE, or starting next week like me!


  • kamboka
    kamboka Member Posts: 1,086

    Hi to all,

    I've been reading this forum for a few days so decided to join. This is my first time posting. Just started AC-T on 3/15. This round, I was pleasantly surprised that I didn't have nausea. The worst day was day #3. I mainly had overwhelming fatigue and headache. I'm delayed for the second round by a few days as my Fulphila shot was not quickly approved by insurance. Since I got it late, I will be doing the 2nd round later. I'll be self-administering from now on. I took the Claritin before and after and it worked!

    I'm doing neoadjuvant chemo and am hoping that my tumor can shrink and I can do the lumpectomy in a few months. Due to lymph involvement, I'll also be doing radiation after surgery.

    I look forward to following everyone's journey and wishing you all the best.


  • moderators
    moderators Posts: 8,739

    Dear Kamboka,

    Welcome to the BCO community. We are sorry for your diagnosis and treatment and very glad that you reached out to our members. We hope that you will find support and information here to help you along the way. Please let us know if there is anything we can do to help you navigate your way around the boards.

    The Mods

  • knmtwins
    knmtwins Member Posts: 438

    Hi ladies, may I join please? I had breast cancer in 2014 and did Taxotere, Carboplatin, Herceptin and Perjetta and am NED. I loved the information and the ladies in the July 2014 Chemo Sisters group. Unfortunately, I have a second primary cancer which is not breast cancer, it is Uterine Serous Carcinoma, and I have to start chemo again on Wednesday on Taxol and Carboplatin every 3 weeks. I'm not familiar with Taxol and taking steroids the day before and the day of, etc. I'd love to have a group to hang out with a learn from again. I have asked the Mods and it is OK with them, as long as I'm up front with you guys, that this time, is not for breast cancer and it is OK with you. Also, I'm NED from the breast cancer, so look at me as a success story.

  • Fallschurchgirl
    Fallschurchgirl Member Posts: 62

    Hey, ladies.

    KNmtwins. Welcome. Of course you can join. We would love to support you in any way we can.

    I am so far behind in adding our new people. Please look at the top post and if you are not there, or if what I have down has changed, please pm me so I can add you. My brains are scattered.

    Start steroids and fasting tomorrow. And #2 Monday. Not looking forward to the SEs, but then I am half way. How did #2 go for you, unbreakable?

    Welcome Kamboca, farfalla6, sparkle4

    Chickywicky, I tried to go to your blog, but I couldn’t find it. Can you help me find it? Good luck on Tuesday. You are going to rock this! It will be so exciting to get #1 DONE!

    How are you feeling with the SEs sparkle? And how did work go?

    I hope everyone has a great weekend with minimal SEs.

    Jean

  • Unbreakable1
    Unbreakable1 Member Posts: 28

    Hi ladies,

    Chickywicy, found your blog. It was an enjoyable, relatable read. Keep them coming. Like you I have children (6, 9, 14). Sometimes I put on a front for them and my husband as I do not want them to worry too much. But honestly, I just want to scream sometimes.

    I had infusion number two yesterday. I am managing well with minimal SEs. I am getting paranoid wondering if the meds are working or even if they were properly compounded or infused. Shouldn't the the SEs get progressively worse? Even the metallic taste did not happen this time. I am not complaining but I just want this to work so bad. In the meantime, I am keeping up with my hydration and rest in anticipation of the onset of SEs especially that I am just about to get my nuelasta shot.

    I hope everyone is doing well despite the circumstances.

  • Fallschurchgirl
    Fallschurchgirl Member Posts: 62

    unbreakable. I know it is working. You have no hair, right? I just think that your body handles chemo really well. And I don’t don’t wish SEs on you, but day 2 is good. Tomorrow will bring something. Keep fighting.

    Jean

  • Mncteach
    Mncteach Member Posts: 241

    Hi knmtwins! I start my Taxol portion on Thursday but it will be Taxol by itself and every 2 weeks. When the doc told me about the steroids the night before and morning of along with more there and benedryl... I was like, woah....Will I even be able to function? I guess I’ll find out. Everyone keeps saying it’s the easier of my two cocktails... just finished 4 rounds of AC, also know as Red devil! And it was a devil for me. Guess we’ll find out together!

    Unbreakable— here’s wishing that you continue with minimal SE! My third round was the worst. The second and fourth were the easiest for me and the first was learning about how to handle my SE.

  • Unbreakable1
    Unbreakable1 Member Posts: 28

    Thank you ladies. Here's to all of us in this group. Cancer just picked the wrong group to mess with🤗

  • kamboka
    kamboka Member Posts: 1,086

    Mcnteach,

    Good luck. I will be anxious to see how it goes. I'll do the Taxol in May and the thoughts of more cortisone is worrying. I only get 'the day of' dose now with the AC.


  • LizzieAG
    LizzieAG Member Posts: 32

    hi everyone,


    I am finally back to feeling somewhat well today after a hell of a week post my first AC.... I was so sick on Friday (day 7), and so upset that I was sick so long after the infusion, I was sure I would not make it to round 2, but yesterday was better and today I woke up feeling normal thank goodness! Eating has been the hardest part for me, zero appetite because of nausea and cramping, and nothing tastes good. Got some ensure shakes and pedialyte... I am already skinny so really can’t afford to lose weight through this. Plan today and hopefully the next few days pre round 2 to exercise and eat... oh, and also get my head shaved and wig fitted. Hair situation was originally my focus and now post treatment I at least realize that as long as I feel well and strong enough to do things I can live with whatever is on my head!

    Amazed of those of you who were able to work with AC... I am (was) planning to work intermittently through this but now not so sure I will be able to at least on the AC portion. I guess I will see how the next round goes....

    Hope everyone feels well and enjoys Sunday!
  • kvz
    kvz Member Posts: 2

    Hello everyone,

    I found this community board last week and have appreciated reading the posts and encouraged by all your advice and support! I started chemo last Wednesday 3/20. I'm doing TC x4, three weeks apart. Nausea has been manageable and of course some constipation which is improving. Fatigue is my biggest issue right now plus aches from the Neulasta.

    I had a lumpectomy in February and a high oncotype which is why I'm doing chemo.

    Just wondering if anyone has had issues with mouth sores and how you're trying to prevent or manage them. I'm trying to keep up good oral hygiene and follow the directions of my doc but my tongue has some tenderness and not sure if that's just part of the chemo or beginning of sores.

    Thanks and wishing you all strength and blessings as you go through chemo.

  • Mncteach
    Mncteach Member Posts: 241

    Lizzie, make sure your MO knows about nausea and appetite. I had that problem my first AC. They added dex - a steroid- and it helped with nausea and appetite. In fact I’ve gained a few pounds from my starting weight after losing over 5 pounds the first go round! I do not have the problem of being too thin so I’m kinda sad about not keeping it off, but it’s much better than the horrible nausea!

    Welcome Kvz— I am not on the same chemo as you and have had only mild irritation, but I did look up a site on here about TC chemo and mouth sores. It was a list of things to prep. I actually bought a whole case of the 8oz water bottles so I could mix up a baking soda rinse and take it with me if needed. I haven’t needed it, but if I feel any tingles I brush and use my waterpik (a prep for chemo buy) and that seems to help

  • Hope0813
    Hope0813 Member Posts: 3

    Hi everyone!

    I’m so happy to join this chemo group. I received my first treatment on Friday, March 22 and will do so every 3 weeks x 6 sessions. I’m 36, diagnosed in Jan ‘19.

    It hasn’t been so bad so far. It’s day 3 and I just mainly feel tired towards the end of the day, which isn’t bad because it allows me to look after my 6 month old and spend time with her. Anybody going through this with infants to care for?

    I wonder if I’ll feel worse as treatments progress. I’m taking a variety of medications they prescribed, including the steroid dex but just for a few days every cycle, which is nice. I took a Lupron shot a week before my chemo, and I’ll be honest, I haven’t had any side effects from anything at all. Hopefully all these meds are working.

    Good luck to everyone! Good health to you always and I look forward to hearing from all of you :





  • moderators
    moderators Posts: 8,739

    Calling Philadelphia folks who could benefit from learning about wigs, and receive a free wig and fitting from Wigs.com. We are seeking people who are about to enter chemo, or are in treatment already. Wigs.com is partnering with Breastcancer.org and hosting a press event scheduled for next Friday, March 29 11am -12:30 p.m. ET at Lankenau Hospital. Please PM the Mods if you are interested.

  • kamboka
    kamboka Member Posts: 1,086

    Kvz,

    In my week after first round, I've had some mouth tenderness that comes and goes. I started doing the baking soda washes a couple times a day. Some folks add salt but I just use the baking soda only. I also have Biotene that I use at least twice a day. I'm trying to be proactive to eliminate or reduce the mouth sores. I also would reiterate not eating spicy, salty and really hot foods. I learned the hard way!

  • Hope0813
    Hope0813 Member Posts: 3

    has anybody had their oncologist explain to them how they determine whether chemo is effectively killing cancer cells. My doctor isn’t clear on a lot of questions, I’m thinking of changing doctors

  • knmtwins
    knmtwins Member Posts: 438

    Thanks FallsChurchGirl

    Hi - I had BC in 2014, did TCHP BMX and am NED but now have a totally new primary cancer, uterine, NOT associated with Tamoxifen, and will be starting chemo again on Wed. Thank you for letting me join!!!!!! I loved and still love my July2014 chemo sisters, but we have all forgotten a lot of these things and there may be some side effect 'cures' that are new, so I'm glad to have this group to hang with.

    I'll be on Taxol and Carboplatin every two weeks, is anyone doing that?

    kyz - you say you are on TC, what is that? Taxol and Carboplatin?

    Dex - yep chemo is cumulative when it comes to fatigue, it really hits you about the 5th cycle, but you learn how to deal with it. Hey, at least your baby is sleeping through the night. Back in 2014, we had a lady in the group that was pregnant and then had a newborn for the last 2 cycles, as well as a toddler. You are a mother, somehow, we have the ability to do what is necessary for our kids.

    Mouth issues - my MO had me do 1/4 tsp baking soda and 1/4 tsp salt to 1 qt water. I bought 1qt water or soda that was on sale and dumped it out. this gave me unbreakable 1 qt containers, for under $1. I 'lived' primarily in my bedroom or the family room, so I kept one in my bathroom and one at the kitchen sink. Whenever I would pass them, I would pour a swig and swish. I did get some sores but very few. IF you get bad ones, call your MO, there is a Rx mouthwash, which has a painkiller in it to help. I also used a soft toothbrush and Biotene toothpaste.

    Oh, I am not looking forward to chemo again, nor are my kids who are 15 year old boy girl twins and an 11 year old boy. They are used to their stay at home mom running them all over, and I think those days will be over for a bit.

  • Ghcpd
    Ghcpd Member Posts: 6

    I start TC tomorrow. I hope to be able to travel through this stage with you all. Thanks and good luck to all.

  • Fallschurchgirl
    Fallschurchgirl Member Posts: 62

    good luck tomorrow and welcome, Ghcpd. Don’t forget your Claritin!

    Jean

  • moderators
    moderators Posts: 8,739

    Ghcpd, welcome here to this wonderful group! Good luck All this week! Medicating


  • Ghcpd
    Ghcpd Member Posts: 6

    I read that some of you are struggling with the metallic taste. I am pharmacist and there are a couple of antibiotics that do that Also. Over the years, we have found that canned peaches are the absolute best help with this SE. Good luck hope it helps

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