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Starting Chemo June 2017

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  • [Deleted User]
    [Deleted User] Member Posts: 132
    edited July 2017

    WordLady.... I switched from Gatorade to PediLyte ..it worked a lot better for me... I added some lemon aid to it to give it a flavor..since my hubby bought the plain ....
    I don't know if you have this but I've found a sports drink at Krogers called Body Armor ... its got twice the potassium and electrolytes than Gatorade ..and just a bit more than Pedi Lyte....comes in all kinds of flavors... its pretty good...

    Nausea was there but kept it in checked with the meds... but still didn't want to eat :( .... I ate a lot of soup... and Lay's plain potato chips...and baked potatoes ...and toast

    Hugs from TN
    Denise

  • Tpralph
    Tpralph Member Posts: 281
    edited July 2017

    How often does chemo ac and t not work for er positive BC? I've heard for another person who went through 5 months of it and she ended up having bone and lung Mets when they rescanned her at the end of tx. God id hate to do through this for nothing.

  • JuliaJazz
    JuliaJazz Member Posts: 175
    edited July 2017

    Tralph.  Your doctor should be able to give you some statistics.  My chemo drugs are different but I was given the statistics that in my case without the chemo and just with some pills for the hormone positive stuff my survival rate at 5 years was 75% and with the chemo it went up to 88%.  That was based on a mamoprint that showed my tumor was more aggressive rather than less aggressive.  But whatever your individual cirumstances, your oncologist should be able to share stats with you.  For me I will rest easier knowing I have thrown everything the doc recommends at the cancer.  

  • Tpralph
    Tpralph Member Posts: 281
    edited July 2017

    Julia she did give me survival stats depending on tx but did not do oncotype. I was just wondering how often chemo does nothing

  • T-Sue
    T-Sue Member Posts: 207
    edited July 2017

    Hi Folks – I'm new to the BC community and thought I'd introduce myself. I was diagnosed in late March with one small tumor and a plan for a lumpectomy and radiation. After a MRI revealed a second small tumor in the same breast, the plan changed to mastectomy which I decided to supersize to a double mastectomy to get rid of as much of my high-risk breast tissue as possible. When the pathology on the second tumor came back HER2 positive, the plan expanded to include chemo. *sigh* My bilateral mastectomy took place in late April and I was relieved that my lymph nodes came back benign. I'm now four treatments into my 12 weekly low-dose Taxol chemo regimen.

    So far the side effects on weekly Taxol have been tolerable – fatigue on days 1-3 but not crushing. I have trouble sleeping most nights; I take Ativan on days 1-3 but am trying to wean off of sleep aids starting on day 4. (Unsuccessfully – I'll often take a couple Tylenol PM pills after lying in bed awake for an hour.) Actions that I think have helped me (or at least that I can control) are walking outside for 30-60 minutes a day, downing water to move the chemicals out of my system, and eating enough calories and protein to keep my energy levels up.

    I've been amazed to keep my full head of hair this long. (Before diagnosis I had long hair and have slowly been cutting it off to help my 9yo son get used to mommy without hair.) Alas, it's giving up the fight and coming out oodles. It's not noticeable yet, but I have hats and scarves to cover up when things get patchy. I also have a wig on standby if I need to do a full head shave (thank you American Cancer Society!)

    I appreciate you all sharing the details of your experiences. It has been so helpful to me as newcomer. Happy Fourth of July!

  • JuliaJazz
    JuliaJazz Member Posts: 175
    edited July 2017

    Welcome T-Sue.  Sounds like you are doing great.  There is so much good info here--both in the articles on the regular site and in the forums. It is great that you are 1/3 of the way through your chemo.  We are glad to hear from you.

  • [Deleted User]
    [Deleted User] Member Posts: 132
    edited July 2017

    Welcome TSue ..hate that have to be here...but you've found the right place .... wealth of info and compassion ...

    About your wig you got from the American Cancer Society .. how is it? I'm going this coming Wed. to get fitted at my ACS ... I was just wondering what kind do they have.. is there a variety?
    The people I talked to on the phone where pretty nice...

    Hugs from TN
    Denise

  • T-Sue
    T-Sue Member Posts: 207
    edited July 2017

    Thank for the warm welcome!

    DeniseT - my "breast cancer navigator" actually was my liaison for the ACS wig. (She is an oncology RN and her fulltime job is to work with newly diagnosed breast cancer patients at my cancer center - I love her!) She visits me in the infusion room and we talked about wigs early on. She visits the ACS and is allowed to stock up on wigs. Because she knew my general hair color and length, she brought a few sample wigs to my infusion, I tried them on, got opinions from nurses and patients around me and choose one. It is quite nice (from the little I know about wigs) and is actually a brand new, real hair wig. Not a perfect match in color, but you can't beat free! Apparently Pantene sponsors the program.

    I hope you have a good experience at your appt and find a great match!

  • [Deleted User]
    [Deleted User] Member Posts: 132
    edited July 2017

    T Sue...thank you!

    Hugs from TN
    Denise

  • pink_is_my_colour
    pink_is_my_colour Member Posts: 265
    edited July 2017

    Day 17 in the cycle. The hair is mostly gone. Looks horrible. Given what's left I think I'd be better off shaved. Will be calling hairdresser first thing in the morning to see what she can do with what's left. DH is more upset about the hair loss than I am.

    Felt weird wearing a baseball hat shopping. Something else to get use to. Been wearing a knitted hat at hometo keep my head warm.

  • KimPossible818
    KimPossible818 Member Posts: 287
    edited July 2017

    T-Sue, Welcome. You seem to be doing very well! Stay strong and positive. We are here to support you. Glad your lymph nodes were fine. That is a huge relief. Mine were not, which will lead to more surgery post chemo. (One thing at a time for now.)

    Pink, Friday, my 2nd A&C treatment, I woke in the shower to it letting go. Same for Sat and Sun mornings. Last night, I had my hubby trim me to a one-inch crew. I didn't even cry. It made me feel "in control" to make the choice. DH loves short hair on ladies, and this sparked some romance. HA! Speaking of, has anyone on your medical team discussed intimacy issues? I meant to ask on Friday, but got side-tracked with the Neulasta being placed on my body. It worked very well on Saturday. I am sorry your DH is having a harder time regarding your hair. I reminded mine that this crew will be soon a slick head. THAT may take some getting used to. :)

    I haven't slept well tonight, because I chose not to take my Ativan, as prescribed. Lesson learned! I have been feeling better this round (so far) than the first. Having the unknown out of the way is helpful to alleviate anxiety. My stomach felt too empty, so I just had some real Coke and peanut and butter crackers.

    Just think, by the time we learn what works/doesn't work, we will be through with all our treatment. I like to say I am 50% done with A&C. That sounds like something for now! WOOT! WOOT!

    Hold your heads high, ladies! We are beautiful and brave (even if some of us are balding). We are more than our hair! Hugs to all.




  • hhuey
    hhuey Member Posts: 121
    edited July 2017
    KIM


    I felt the same about shaving the head. It gave me at least one thing I was in control of. I actually shaved my own one day when my husband was out running an errand. I just couldnt stand the straggling hair that was hanging on my head. My doctor giggled a little when I told her I was figuring out what worked for AC. I am 3/4 of the way done with AC. She said I will have it all figured out by the time I switch to the new meds. Oh well..like you say one step at a time.



  • lilsuzq
    lilsuzq Member Posts: 27
    edited July 2017

    Hi all,

    Thank you for all your posts. I check in daily. I started my regimen of TCH on 6/22. All went well and I took all meds as told to do. Took 6/22 and 6/23 off work but worked the entire week following. I felt the crappiest Mon-Tues.... But just slid past it. Hair still intact ( probably not for long). A side effect I was not prepared for are pimples! I feel like a teenager with acne. Anyone else had this? My white blood cell count low and I ran a fever yesterday. Picked up antibiotic yesterday and see MO today..... Maybe neulesta for me today. Otherwise doing well. Next chemo is 7/13. Cheers to all of you brave women

  • moodyblues
    moodyblues Member Posts: 393
    edited July 2017

    Ladies. 

    ALL liquids, especially water made me nauseous, in fact so bad that even thinking about drinking made me feel sick.  I took more anti-nausea-meds because of this.  It was horrible.  I then developed constipation and you know, it was a vicious cycle.  My daughter bought several things for me this weekend which changed the direction of this. 

    TAZO iced passion, it is a herbal tea.  caffeine free and can be cold or hot.  You mix equal parts water and Tazo.  I added 1/2 tsp honey.

    TAZO iced sangria black tea. Very low caffeine, can be cold or hot.  Mix equal parts water and Tazo.  I added 1/2 tsp honey.

    TAZO wild sweet orange tea.  Caffeine free.  My stomach handled this well.  It is for hot tea and I added 1 tsp of honey. 

    (I tried the TAZO mint but, my stomach hurt afterwards)

    I am now drinking!  Thank God!  Maybe this will info will help someone.  She bought it at Target but, I am sure other places carry this product as well. 

    (cross posted)
  • susie_2017
    susie_2017 Member Posts: 142
    edited July 2017

    Good morning ladies, I've read a few posts to See what I've been missing while on vacation. I'm on day 10 post chemo and feeling pretty normal. My only issue is my mouth. It's not really sores but my gums are hurting. Still dry as a rock. Using my Biotene. I did notice one white patch this morning could be the start of thrush. Gargling with salt water is a temporary relief and hope to ward of any infection.

    I can't remember who asked about intimacy but I will share my input. My nurse told me if you have sex make sure he wears condoms. Keep all of your bodily secretions to yourself. I read online that chemo usually metabolizes through your body 3 to 7 days afterwards. So I'm guessing after day 7 you could go without.

    Acne. Yes I started to notice I have a few pimples coming out too. Not sure why or how I remember this but I believe you are not supposed to pop them.

    Happy 4th to all of you!

  • pink_is_my_colour
    pink_is_my_colour Member Posts: 265
    edited July 2017

    Oh ya I had pimples around about day 7. That's when I figured my white blood count must have gone down. Lots on my head. Funny place for pimples! By day 12 they were gone. I read too not to pop them. I think because it can lead to infection. Just be extra vigilant from days 7 - 10 with cuts of any kind.

    I think that's why they get so concerned with mouth sores because that kind of infection can get into the blood stream pretty quick and cause major havoc.

    Keep on top of those mouth sores. I found Biotene and rinsing with salt water helped keep mine from forming into actual sores.

    Happy Fourth of July to all my friends to the south 🎇🎉🇺🇸🗽

  • pink_is_my_colour
    pink_is_my_colour Member Posts: 265
    edited July 2017

    Have an appointment with hairdresser this afternoon. Hair has stopped coming out. About a third left which I can make look reasonable. Does anyone know if the rest of the hair falls out after the second treatment? If so then I might as well have the hairdresser buzz it off. 😢

    Leg and arm hair still growing like crazy. Chemo is soooo cruel.

  • MsLin
    MsLin Member Posts: 64
    edited July 2017

    Pink, Here's my experience with hair. Mine started to come out on the day of my 2nd AC (Friday). My husband shaved it off that Sunday to about a 2mm buzz cut. I was expecting it to continue falling out and it was short enough that I would be able to rub my head to get the rest out. This was true. It would come out in the shower when the pores on my head were more open. Otherwise it wouldn't really shed. By the next Friday the top of my head hurt so bad from the stubble and the scarf on my head. I actually went to the seniors awards assembly at school with nothing but a flower crown on my head because the scarf hurt so bad. Talk about feeling vulnerable. A gym full of 1600 high schoolers seeing one of their teachers bald. That night I used my husband's electric shaver to buzz it down to the scalp and it felt much better.

    The hair that was left still grows albeit so very slowly. I did use the shaver to give myself a "haircut" at one point. It wasn't really falling out anymore. However, yesterday I rubbed my head over the bathroom sink and a bit more came out. I'm day 11 AC#3. My armpit hair stopped growing shortly after AC#1. I've only shaved my legs once since AC#1. I still have arm hair, but it's thinner than normal. And on an intimate level... I have about 1/2 of my pubic hair left and that's stopped falling out. I still have my eyebrows and eyelashes. I have nose hair in one nostril and a limited "supply" in the other. That's because I have a nose piercing and I have to clean that side a little more vigorously. So my nose runs all the time on that side.

    My scalp is super dry and when I rub it to try to get the stubble out I start to look like a leper. So instead of fixing my hair every morning I make sure I moisturize. Cuts down on the getting ready in the morning

  • pink_is_my_colour
    pink_is_my_colour Member Posts: 265
    edited July 2017

    Thanks MsLin. At least I know there's more fall out to come. For the past three days I've also had the runny nose going on. They don't tell you about that side effect.

    My hairdresser refused to buzz cut my hair but did cut it down to about a half inch all over. Said might as well have some fun and hang on to what's left for as long as I can.She's a treasure and didn't charge me for the hair cut.

    Hope you've been feeling good. I get my next treatment on Friday.

  • MsLin
    MsLin Member Posts: 64
    edited July 2017

    Pink - The hairdresser is smart not to fully buzz it down. I wish I had left it longer so I could pull it out. Like I said, my hair grows still, but very slowly. So now my head feels like the rough part of Velcro. Sometimes my shirt get stuck on my head when I pull it off.

    Oh! One thing we don't realize before we are bald is how cold your head gets. Invest in a good soft beanie. I bought one at our cancer center store. Cost me $40, but worth every cent. It is bamboo and spandex and I mostly wear it around the house and in the garden. It's lightweight, cute and keeps my head warm. I've been known to leave the house totally bald on very hot days, but when I don't feel like totally wrapping up my head in the pretty scarves I can throw my beanie on and go.

    I felt very good yesterday. I worked in the garden all day long. It was so nice! I plan on doing it again today. I'm taking advantage of the good days and getting stuff done. Each AC round is rougher than the previous and my last one is on Friday. I'm planning on being laid out for a good 5 days this time. Good luck on Friday! I'll be thinking of you

  • pink_is_my_colour
    pink_is_my_colour Member Posts: 265
    edited July 2017

    MsLin you look adorable. You totally rock it.

    Having a bad day today. More tummy troubles.

    I have a beanie hat left over from winter. I've found my head has been cold for the past two weeks.

    Ring that bell on Friday.

  • Smilingwifey40
    Smilingwifey40 Member Posts: 12
    edited July 2017

    Two months ago...imageThis past weekendimageHello ladies! I'm on to AC#3 this Thursday. My hair was falling out so much that I asked my husband to cut my hair. I'm rocking my hats now. But everytime I take them off, hair comes out too. So I'll ask my dh to buzz it next! How soon were you any of you ready for a cut or had you cut your hair in anticipation of the "fallout"?

  • KimPossible818
    KimPossible818 Member Posts: 287
    edited July 2017

    DH took my hair down to one inch on Sunday night. I went shopping yesterday and today (brief trips) looking just like that. People don't really care, you know?!

    I have had a pretty good appetite on this 4th of July, but I have been more tired than normal thus far. I took a 1.5 hour nap this afternoon.

    Looking good, Ladies! Let's keep smiling! Happy


    image

  • JuliaJazz
    JuliaJazz Member Posts: 175
    edited July 2017

    Gorgeous for sure, both of you.

  • T-Sue
    T-Sue Member Posts: 207
    edited July 2017

    Thank you for the photos SmilingWife and KimPossible. You both look great! Exactly what I needed to see as I am boo-hooing my recent hair loss. I've slowly been cutting off my long (pre-diagnosis) hair. It's pretty short now and just started "releasing" a few days ago. Amazing how much come out even with shorter hair. You two are inspiring me to go ahead and buzz it off!

  • peachyjeanne
    peachyjeanne Member Posts: 155
    edited July 2017

    First time posting here, though I have been reading. I am 47 and was diagnosed in April. Had a sneaky mammo-occult tumor that I discovered. Since then I have been through a battery of tests all leading me to chemo pre-surgery. I am undergoing 8 DD AC-T every other week. I get Neulasta shot the day after. I have my second dose tomorrow 7/6. I tolerated #1 fairly well. Definitely felt like a space cadet for a few days with some constipation but luckily food tastes and nausea was not a problem and my energy was ok. Even went back to work on the Tuesday after (day 7)

    Today I am cutting my hair. I've got strawberry blonde hair that is mid-back in length. Strands have started to come out but I know after #2 that will speed up. Hair loss was the only thing I was told would definitely happen so I think for that reason, I was able to process and deal with it better than being anxious over side effects that may or may not occur. I reserve the right to totally freak this afternoon, though! Ha.

    Good luck to all on the journey back to health.

  • moderators
    moderators Posts: 8,616
    edited July 2017

    Hi PeachyJeanne, and welcome to Breastcancer.org!

    We're sorry you have to be here, but we're really glad you found our amazing Community. We're sure you'll find wonderful support here as you continue your treatment. We're all here for you and look forward to hearing more from you soon!

    --The Mods

  • Smilingwifey40
    Smilingwifey40 Member Posts: 12
    edited July 2017

    Thank you for the compliments and I'm happy to share any of my experiences! It helps knowing others understand and feel a lot of what I'm feeling inside!

  • KimPossible818
    KimPossible818 Member Posts: 287
    edited July 2017

    Jeanne, Welcome. I just replied to you. Stay positive!! If you are working, you are doing GREAT!! We are all here for you.

    Smilingwife, is a rock star...

  • pink_is_my_colour
    pink_is_my_colour Member Posts: 265
    edited July 2017

    Wow you ladies are brave to post pictures but you all look gorgeous. I still have a hard time seeing myself in the mirror. Keep wondering who that person is staring back at me. Lol!

    Sent a picture to a friend to see what her reaction would be. Said, looks good but doesn't look like me. I agree. Who is that person in the picture??? Going to the cancer clinic tomorrow. Maybe I'll stop in and see what they have for wigs.

    Smilingwife: I started out with long hair past my shoulders, then had it cut to shoulders, then to chin length, then pixie cut, now it's about a half inch in length (what's left). I thought I'd be okay with bald but not sure now. I keep telling myself, it'll grow back.

    PeachyJeannn: Sorry you have to be here but we're a good group. One day at a time.

    Hope everyone is feeling good today.

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