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Starting Chemo in November 2017

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  • rljes
    rljes Member Posts: 499
    edited November 2017

    Hey Dogersgirl - good to see all of you here to give us advice and support!  I have kept journals for years, but will have a 'special' one just for chemo to keep details. As I have mentioned before - My MO said I was not going to have ANY SE's.  Thankgoodness I'll be communicating with the Pharmacist Oncologist more than my MO. (Either my MO has a warped since of humor, or he thinks he's that good) 
     Paulettte- I'll just keep adding things to my ever growing list:
    Salt free Cashews/ Mac & Chz/ Ginger Hot Tea/ Sea Bands 
        I've been in bed all day, Migraine got away from me, tried to walk Truman and got about 100 ft and had to come back.  My Incisions are killing me. The Center of my Chest is as tight as a drum. So tight its hard to breathe. Then I start worrying about having a heart attack and I would never know if it was or just my surgery. I never been so messed up since Dx.  Its playing with my head. 
        Anybody Else still having issues with their surgeries? Its been 10 weeks post op. Truman:  

    image

  • Stage2ire
    Stage2ire Member Posts: 44
    edited November 2017

    hi ladies. I just completed 4 dd AC. Most tips covered in previous posts. I did find as I went through it took a little longer to bounce back each time so be prepared for that.

    Def eat something and lots of fluids before and after chemo. Stay ahead of the nausea with the meds. I have emend and Valoid, also zofran if I need it

    Just a warning, if you have your period around time of infusion it can make nausea worse. Also, anyone who suffered bad morning sickness in pregnancy mention to your MO. He might give you an extra anti nausea to have on hand. Apparently women who experienced morning sickness can have more nausea. Hormones maybe? Def happened for me!!

    I was trying to eat well before chemo but just focusing on getting food in now, whatever it may be and my oncologist said just eat the fries if that's what my body needs :)

    Also if you want to stimulate white cell production naturally try dark green veggies, kale, broccoli, Brussels sprouts etc. Apparently the folate helps boost wbc

    Its doable. Hair loss started day 15 for me. I got a wig but never wear it. Hats or scarves. Good YouTube tutorials on how to tie scarves. I just buy regular scarves, cheaper and easier and more fun to match to outfits.

    Watch out for steroid come down, always knocks me for six emotionally. They are my tearful days!

    I've had complications, sick kids etc along the way. Its been hard to learn that I'm not in control but I just live day to day now and try take the rough with the smooth.

    Good luck to everyone.

  • Stage2ire
    Stage2ire Member Posts: 44
    edited November 2017

    Rjless, my incisions still get sore and i have lots of tenderness around whole mastectomy area. Im 3.5 months post op though i did have a wou d infection from 5-8 weeks, delayed second dose of chemo by 3 weeks

    My MO said pain in the area is common for months but if your concerned ask them to check incisions etc. I find it gets more painful 48 hours after neulasta shot too

  • PauletteK
    PauletteK Member Posts: 1,279
    edited November 2017

    Rlj - I have lumpectomy so my recovery time was short, you have double mastectomy sure it takes longer time to recover. Have you start to do some stretching exercises? Maybe you can ask to see a PT.

    Stage - congrats you finished one milestone. Time for taxol.



  • mkn86
    mkn86 Member Posts: 129
    edited November 2017

    Stage2Ire, thank you for sharing this. i find myself emotional too the week after chemo and i thought it was just me. it's when i cry the most. and well, not beingb able to enjoy food makes it even more miserable.

    Paulette, thanks for checking in. :) i'm doing okay. just trying to keep my mind from wandering by writing and listening to happy songs or watching comedy series. How do you feel at the moment?

    rlj, turner is adorable! :) dogs make me super happy! :)

  • Stage2ire
    Stage2ire Member Posts: 44
    edited November 2017

    mkn86, yep, I find the tears come a lot those days. Its hard.I try not cry in front of people, I've always had a good "game face" but lot of tears when I'm alone or wake up at night. I just let it out these days.

    Paulette,your nearly there!

    Rjless, def going to take longer heal after double mast. Stretching will help, ask PT about techniques to massage scar tissue and also to desensitize the area. I find drain incisions still sting like crazy sometimes.

  • Aymerz33
    Aymerz33 Member Posts: 41
    edited November 2017

    Took my first set of pre meds just now and my anxiety is off the charts. I am still trying to wrap my head around having to do this. Not what I expected to have to do at 33 years old, and I will be so glad when it's over. My doctors didn't really give me a lot of tips. They seemed to think I would be just fine through all this with minimal SE. I'm planning for the worst and hoping for the best.

    I wonder if there are people out there that really don't have much in the way of SE with Chemo.

    So glad that I have this group. Reading everyone's responses keeps me going.

  • lovepugs77
    lovepugs77 Member Posts: 108
    edited November 2017

    I don't know if any of you do your grocery shopping at WalMart, but if you do, this may be helpful to you. Some of their stores now offer free curbside pickup. You do your shopping online and choose a pickup time. They email you when your order is ready, and you go to pick it up. I just did it, and I didn't even have to get out of my car! They have an app you can download that lets you check in when you are on your way, and it uses your phone's GPS to calculate your arrival time. I used that, and almost as soon as I parked, the guy brought my order out, had me sign digitally, and loaded my car up. I'm sure you could have someone else pick up for you, as well. They didn't ask for ID or anything, just for the name on the order.

    I'm having some painful peeling under my breasts from radiation, so I can't wear a bra. The idea of grocery shopping bra-less just doesn't appeal to me, so a friend suggested this. He actually intended for me to do the order online, then he would go pick it up, but I wanted to do it myself. I LOVE that this removes the need to depend on anyone...that's such a big deal to me. I really wish this had been available when I was doing chemo - I would have used it the whole time. Every time I went grocery shopping, I worried about getting sick from germs on the carts, people sneezing/coughing around me, etc. I know other stores do it, too, but they are usually more expensive. Anyway, I hope this is helpful information to someone!

    https://grocery.walmart.com/

    Aymerz33, what chemo regimen are you going to be on? I did dense dose AC + T this May-August, and it wasn't as bad as I thought it would be. I never had any nausea or vomiting. I did have some bone pain with taxol, which was manageable with advil. I also had some neuropathy in my hands and some nail issues, which are both clearing up. It really was nowhere near as bad as I was expecting.

  • marleigh
    marleigh Member Posts: 13
    edited November 2017

    Castigame - thanks for the tips!  It bothers me that I am getting only Zofran yet most people here seem to be getting Compazine also to go along with it yet my MO doesn't use it anymore.  I can't stand being nauseated!!  So I pray the Zofran will be all I need.

    rljess - ref my port experience:  it might depend on whether you get your port in the OR by a surgeon or whether you get it in a radiology suite by one of those radiologists that does port placement as to what you experience.  It seems some people use one or the other rather than it being definitely one way or the other.  For my experience, mine was done in the OR by a surgeon.  It wasn't anything I was able to pick from, it was my MO who wanted it done that way.  I had heard of the radiologist-performed one and did ask about that but my MO said no that he preferred it be done by a surgeon in the OR, but I can't tell you why as he didn't elaborate.  Anyway, I was given a sedative + local anesthesia for the procedure.  When I met with the surgeon prior to the procedure (couple days prior) she did ask me if I wanted general anesthesia or do it this way.  I didn't want to be put under with general again so I took the sedative + local anesthesia choice.  I was also afraid the meds might make me sick so I asked for anti-nausea meds the  morning of the procedure.  The nurse gave me a Zofran shot in my IV right before I went to OR.  Then they gave me the sedative in my IV.  It only took a few minutes for me to start feeling loopy and as soon as that happened they then pushed me to the OR.  I don't even remember getting on the OR table.  But I did wake up during the procedure but I didn't see anybody because there was like a tent over me.  I didn't feel anything since my chest was numbed from the local.   I did talk to the surgeon some after I woke up, even though I couldn't see her.  Seems like I woke up about 10 min before they finished but not sure because time is hard to measure when I'm loopy like that.  Anyway, they pushed me to recovery but I was wide awake. The nurse told me I had to stay in there at least 30 min even tho I was awake because it was standard policy for that hospital in order to make sure I was ok. Then they pushed me back to my room where I had started from (where I changed into the gown, etc,) let me go to the restroom and put on my regular clothes, and they monitored my vitals for about 20 or 30 min making sure my BP was ok.  After they pushed me via wheelchair out to the car, we circled back and re-parked and went back inside to eat at the hospital cafeteria because I was starving and I live 30 min from the hospital and didn't want to wait till I got home. I felt kind of foggy headed rest of the afternoon and went to bed about 7:30.  My surgeon had prescribed me Oxycodone Acetaminophen to take but I didn't need it. A little after midnight I woke up with MINOR pain from the procedure and took 2 Tylenol (over the counter) and it controlled the pain. I have not had any major pain from the port at all. Friday I was aware the port was there when I turned that arm or my head a certain way but nothing bad.  Today I don't even feel it at all and other than seeing the bandage I wouldn't know it was there.  Since my chemo starts Wed my surgeon told me to just leave the bandage on until then.  I have been able to shower with it just fine the whole time. 

  • frozentoes
    frozentoes Member Posts: 48
    edited November 2017

    rljess, MSP is the place to be! Until it's 20 below. :) I love it here. To answer your question, no, I haven't had surgery yet. We're going to do chemo first to try and shrink the primary tumor and it's little buddy. Hopefully it'll decrease the lymph node involvement too. The docs also suggested waiting for the genetic testing to come back before deciding on the surgery options.

    Getting my hair cut short wasn't too bad. I've had pixie cuts in the past so it's not new just not what I would have chosen if the circumstances were different. My 6yo requested that I keep a ponytail for her to keep so I did. I'm trying to find ways to help her cope with these changes without scaring her.

    We went shopping for hats today and you'd think in Minnesota (land of ice and snow) that there would be plenty of soft, scrunchy beanies but everything I found made me feel like I was either getting ready to go snowboarding or has a big fuzz ball on top. Here I am getting ready to kick some cancer butt and I'm worried about how a hat makes me look? /sigh

    I am trying to figure out how to get 20-30 minutes of walking in per day. Around here the temps are going to be ranging in the 20-30s, 40s if we're lucky! I have a gym membership but I'm a bit nervous of germs. Should I just arm myself with Lysol and hit the treadmills

  • mkn86
    mkn86 Member Posts: 129
    edited November 2017

    frozentoes, try looking for leslie sansone walking videos on youtube. :) i mean of course fresh air is better and sunshine too (when available) but on days when it's more difficult, the videos might help. they can be done while watching tv. :)

  • PauletteK
    PauletteK Member Posts: 1,279
    edited November 2017

    mkn, I’m hanging in there, after I have my morning walk Then I felt fatigue, took a afternoon nap then I felt better. How are you doing? Have you moved to the city so you don’t have to travel that far?

    Just finished soaking my hands and feet with epsom salt, now I feel a little better. Almost bed time for me.


  • mkn86
    mkn86 Member Posts: 129
    edited November 2017

    i went to buy supplies at the grocery. I'm moving tomorrow :) i should be packing but my eyelids feel a bit heavy. So i'm considering an afternoon nap. or reading a book until i doze off. half wishing my MO delays this week's treatment for a bit. So can prepare myself. :)

    maybe a diffuser will help you sleep better. and some lavender oil. rest well Paulette :) tomorrow will be better. :)

  • Sciathos
    Sciathos Member Posts: 4
    edited November 2017

    Hello - im starting Chemo this week Too FEC - T im a ww bit nervous and Im also curious about epsom salts, Im struggling to concentrate so need to write most things down, my usual butterfly self is struggling to focus on one thing at a time. Perhaps Im just too busy and not planning in enough quiet time:)

  • Avalon7167
    Avalon7167 Member Posts: 8
    edited November 2017

    I have just started Chemo last week, so wanted to touch base with others doing the same.

    I have started dose dense AC for 4 cycles then taxol for 12 weeks

  • Aymerz33
    Aymerz33 Member Posts: 41
    edited November 2017

    Today a my day. I'm so nervous and teary. Prayers and loves would be appreciated

  • Corduroy
    Corduroy Member Posts: 4
    edited November 2017

    Good luck today, Aymerz.

    I am supposed to start on Thursday, AC + Taxol - 1 session every other week of AC, then 12 weekly sessions of Taxol. I was like "Wait, that's 20 weeks of chemo!" They had previously said 4 months.

    My question is this - when should I expect to have to deal with eyebrows/lashes falling out? I wanted to cold cap, but had decided if my MO wanted an AC treatment I wouldn't, because seeing the outcomes from AC even with Penguin didn't leave me feeling like the cost and huge hassle was worth it. But I teach undergrads so am trying to minimize any appearance of looking sick. My MO said that the AC was the worst and the weekly Taxol wasn't that bad, which is why I decided not to do the dose-dense Taxol regimen.

    Ugh, do not want. Not looking forward to this at all. And giving myself the neulasta shot! aaaaaahhhh! I am not scared of needles but IDK about giving myself a shot. I guess my husband can do it.

  • moderators
    moderators Posts: 7,888
    edited November 2017

    Dear Avalon7167,

    Welcome to the BCO community. We are sorry about your cancer and your chemotherapy but so glad that you reached out to our members. You are in very good company here in a community with lots of shared support and experiences. We hope that you will stay active and keep us posted on how your chemotherapy goes. We will be looking for you and sending you warm thoughts. The Mods

  • rljes
    rljes Member Posts: 499
    edited November 2017

    Hi Everyone - Thanks for all the words of wisdom and helpful hints. 
    Marleigh - Thanks for the details of your Port Placement.  I'll besure to ask for the anti Nausea meds before hand.  My port will be done by Radiology. Go Figure.  

    Corduroy - I too am worried about my eyebrows & eyelashes.  My bald head can be covered - but the rest? 

    There is a thing called 'Microbalding" they Tattoo semi perm eyebrows - but when I asked my MO - he said no, don't do it - too close to Chemo.  I should have had it done when first dx. 

    Aymerz33 - Thinking of you on your first day of chemo.  - What kind of 'Pre-Meds" did you take yesterday? 
    Stage2ire - I have been taking PT - and massaging,  just hurts too much.  Each time I call my BS - they talk me out of coming in - saying "Your Fine".  Next person says "Your Fine" grrrrrrrrrrrrrrrrrrrrrrrrrrrrr.

    mkn86 - I can't imagine having to pack and move when your feeling so tired.  Go slow. 

    Sciathos - Hi.  Read threads by Paulettek - she uses Epson salts for soaking.

    COLD SORES;   I had Dental cleaning today and asked my Hygienist any helpful hints to prevent or help with cold sores from chemo:  "Cottage Cheese" !  She swears by it. Her mom told her about it and has used it all her life and with her kids.  Canker sores, biting your cheek or tongue - just put cottage cheese on it, let it set, then swallow.  Huh! 


  • Stage2ire
    Stage2ire Member Posts: 44
    edited November 2017

    rjless, I dreaded losing eyebrows too but so far they are hanging on. Definitely thinner but still there. I've lost some eyelashes but not all as well. I've completed AC, starting did dense Taxol this week. I'm hoping I hang onto my eyebrows now. I'm not sure I'd have time to paint them on every day with two small kids. I did get a brow kit from benefit though, its good for filling them in a bit if I want to feel a bit prettier!

  • Stage2ire
    Stage2ire Member Posts: 44
    edited November 2017

    also rjless, I get told the pain around my ribs where breast used to be is "fine". Drives me nuts. They told me my breast was fine too but it had CANCER in it!!! If you really want them to check it over don't feel silly, its your body.

  • TimesLikeThese
    TimesLikeThese Member Posts: 6
    edited November 2017

    Ugh. A little discouraged today. I’m on day 4 after my first chemo, and the nausea is just not easing up. I was okay this morning, and my MO recommended only taking the Zofran for the first 3 days. So I didn’t take it this morning. This afternoon I couldn’t keep anything down. Kind of a bummer and my emotions are ridiculous. Hoping tomorrow is better.

  • rljes
    rljes Member Posts: 499
    edited November 2017

    TimesLikethese - I'm so sorry your feeling sick.  I hate that feeling.  My MO told me they infuse Zofran during Chemo and would last 3 days, but when I get home to take the Rx Compazine 10mg every 6 hours - I have read in other threads that they set their clocks to wake up,  keep taking it around the clock and not miss a dose. Then on Day 3 to start taking Zofran pill form since it will have absorbed by then.  So, I will be taking both around the clock for prevention. 
      I'll be joining you with same regime in a few weeks.    I have read there are other nausea medications - ask your MO! I keep hearing from my MO that nausea is obsolete now with all the new medications - obviously not!  Hang in there... I hope you get some relief. 
      If you go to the 'Chemo in August' Group there are some great tips.  I visit them all. (Chemo in JULY/AUG/SEPT) the Triple Positive group - all great and informative.   If you type in - example "Nausea" in search - it will bring up posts from others regarding - Feel better soon.  

  • ML1209
    ML1209 Member Posts: 153
    edited November 2017

    TimesLikeThese - everyone is different. It is ok to continue the Zofran. Your body is just letting you know you need it a little longer. No need to suffer! My first chemo, I was told to not take the Zofran until day 3 as the antinausea meds would be in my system for three days. Within a few hours after first chemo - I was so sick. So, we learned that I needed to pop a Zofran as I walked out the clinic door - even on top of the meds they gave me in clinic. I also alternated Zofran and compazine - every 4 hours. The Zofran did not last long enoug - I would start feeling sick 4 hours later so the Compazine filled in the gap. My MO told me that if I was feeling nauseas, then she wasn't doing her job. they do not want you feeling sick. Take Care!

  • mkn86
    mkn86 Member Posts: 129
    edited November 2017

    thanks rljess :) taking it easy and i don't have to pack a lot since we're renting an apartment for the weekly chemo. My brother went to one of my chemo days and realized if he had a difficult time it must be more tiring for me. So he found me a place literally walking distance fromthe hospital.

  • Stage2ire
    Stage2ire Member Posts: 44
    edited November 2017

    timeslikethese, you poor thing. I had much worse nausea after my first dose. Fluids helped before getting the chemo but def like other ladies have said alternate drugs. Can you give your hospital a call? If they know your sick they can hopefully advise over the phone what to take.

    Feel better soon!


  • marleigh
    marleigh Member Posts: 13
    edited November 2017

    I had my patient education yesterday and now I'm on information overload! Wow all the stuff she told me.

    She of course went over each of the 3 drugs in detail

    I was told to start Claritin (or generic, as long as it is Loratadine) yesterday for the Neulasta shot bone pain. She told me if I still had some pain even with that to use Tylenol. If these two together don't help then to call the office. 

    I will be drinking Enterade. The nurse gave me a free starter pack. 

    My pre-meds will consist of Zofran, Emend and Decadron

    This infusion center provides water, snacks and lunch. I can bring my own drinks/foods if I want to as long as what I bring doesn't give off a strong smell since some smells trigger nausea in many patients

    We went over the GI issues. Over-the counter Imodium and if it doesn't work then prescription Lomotil. For Constipation, they recommend stool softeners first, gel suppository second, and Smooth Move Tea or Mirilax third. If neither of these work then call the office

    We went over nutrition briefly but they provided me all kinds of "what to eat" in my notebook to read. I haven't read that yet but will today/tonight

    She discussed what they would be looking for in the blood work

    There's a lot more she went over but like I said it was information overload. I tried to take notes and thankfully she provided her info in a vinyl notebook they gave me because I couldn't keep up with it all just with notes. 

    Tomorrow is my first day of chemo so I know my anxiety will increase hourly till then but I just want to get this started so I can get it done!!

    Prayers for everyone who has already started their treatment and those about to start. We can do this!



  • rljes
    rljes Member Posts: 499
    edited November 2017

    Marleigh - Best wishes for your first day of chemo tomorrow.  Wow! I didn't get 1/2 the info you got.  What a great place you must be going to.  Thanks for sharing the info.  More information the better. 

    ML1209 - good to know to start the Zofran earlier than 3 days post chemo.  Will take note to alternate Zofran/Compazine every 4 hours.  Thanks!  Its info sharing like this that will get us thru! 

  • orangedaisy
    orangedaisy Member Posts: 129
    edited November 2017

    Hello. I start 4 rounds of taxotere and cytoxan Wednesday, Nov 8. For those who proactively take anti-nausea meds after you get home from an infusion, how long do you wait? I am getting Decadron, Aloxi and Sustol infused and have Emend to take as needed at home. I also have ginger capsules, ginger gum and sea bands. Should I wear the sea bands to treatment? Should I take the ginger capsules in the morning before treatment?

    I started Claritin yesterday. The nurse who gave me education said take Zyrtec because it is stronger, but I've read Claritin is the best along with an OTC pain med if needed.

    I had a bilateral nipple sparing mastectomy with DTI reconstruction 4 weeks ago. I am 57 years old, BRCA2 positive, had a 1.2cm tumor, node negative, and Prosigna Oncotype score 63. I have discomfort and swelling as the day goes on from surgery and feel like the cancer side has a long way to go to heal. I'm worried the chemo will slow the healing, even though 4 weeks post surgery is a common time to start chemo. I won't be released from arm movement and weight restrictions until the day after chemo starts, and I live alone, so it's been harder to get my life prepped for chemo than it was for surgery.


  • shaneswife828
    shaneswife828 Member Posts: 33
    edited November 2017

    I will be starting DD A/C next week. I am having my port put in my arm Friday. Nervous is an understatement on how I feel. I am petrified. I am considering only doing the A/C as I have read a lot of studies saying Taxol has very little affect on BRCA1+ TNBC. I already had my bilateral(9/18) and am stage 1A node negative no lymphovascular invasion. This whole thing is so hard. I never thought I would be dealing with this at 32 years old.