November 2014 Starting Chemo Crew

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  • Janiner
    Janiner Member Posts: 58
    edited November 2014

    Hi all. I start dense dose a/c every two weeks with at home shots of neuprin days 3-9. I start on the 20th. I have blood work, flu shot, and all meds ready to go. No port for me unless my veins end up having a hard time. actually looking forward to getting this started. Look luck to all. You are all being wished well.

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  • bonnied
    bonnied Member Posts: 74
    edited November 2014

    Hi Liwi,

    It sounds like your chemo plan is like the one i will start later this month or early december. I just got all three of Rebecca Katz' books. They are wonderful. I spent the day making bone broths all day for the freezer and have been drinking nettle infusions at least everyday in prep for the chemo. Good luck in your journey. Make the Commonweal tea and keep a batch in the fridge for when you want some ginger tea. It is wonderful.

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  • bonnied
    bonnied Member Posts: 74
    edited November 2014

    Hi Erica,

    Thank you for starting this group. I haven't started but will hopefully by the end of the month. I am in Northern Virginia (for others who may be in the same area). My surgeon is holding on the port surgery till by lumpectomy has healed further… I am in a holding pattern now and am anxious to get chemo going. It will be a dose dense 4 cycle regimen then taxol. Having a group here so we can share and support each other and cheer each other on is good for all of us. xoxo

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  • enlm20Erica
    enlm20Erica Member Posts: 216
    edited November 2014

    Janiner, best to you during treatment, I hope SEs are if none at all!

    Hi Bonnied, your very welcome, I hope you get your date soon I know how the Anxiety can be. It's like the sooner you know the sooner you can start and the sooner it can be over. I'm very interested in the broths and teas you're having, how do they help and is there a recipe we can post for others. While the chemo is doing all it can to help me, I want to do all I can to help myself from its side effects lol. Thanks so much for joining the thread and I wish u a speedy recovery from your lumpectomy.

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  • Leslienva
    Leslienva Member Posts: 489
    edited November 2014

    Hi Bonnied. I'm in Springfield, VA, not too far from you

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  • VintageGal1111
    VintageGal1111 Member Posts: 705
    edited November 2014

    Hiya~ I never thought I would be back here looking for another *starting chemo* group. I was part of the Sept 2013 group. I finished chemo in Feb & just had my last Herceptin infusion....& the cancer has returned. It's been an awful confused, painful, pissed off couple of weeks for me.

    I am starting chemo again on Tuesday...my birthday!

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  • lucyshoe
    lucyshoe Member Posts: 7
    edited November 2014

    Hello all,


    I had my first chemo treatment October 31st and am going for round two this coming Friday. The first round was a success in in terms of nausea (I took all my nausea medications prescribed, but haven't have to resort to their "in case of emergency" Stemetil tablets yet). Slight queasiness was about as bad as I got. The fatigue was something else though. The first few days were fine, but then I crashed and slept almost constantly for about 3 days in a row. I did haul myself out of bed to walk the dog 4 times a day (and to eat very little), but I wasn't happy until I was headed back to bed. I then had a day where I felt perfectly fine and got a lot done (too much actually) and crashed the next day. Today is another feeling fine day, which is why I'm actually posting here - I finally have the energy.

    I'm slightly apprehensive about the 2nd round as I have it in my head that the first is kind of easy, and then it's going to get subsequently more difficult. I've taken a leave of absence from work, and I'm in awe of anyone who can continue working to any degree while going through this - I don't feel horrible, but I don't think I'm anywhere near having the ability to concentrate of anything for several hours a day.

    Finding this whole thread incredible helpful - thank you all!

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  • Janiner
    Janiner Member Posts: 58
    edited November 2014

    Trigger. I am taking neuprin instead of nueleasta. My co pay is 30 for 6 shots. I dose myself at home days 6-9 after chemo rounds . Im doing dd ac 4 rounds. ( 8 weeks). They told me each shot is 1,200. That's over 7k per treatment. 4x7k=28k just for the shots. I start chemo on the 20th. I walked out with all my meds praising God for insurance coverage.best to you.

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  • amylsp
    amylsp Member Posts: 188
    edited November 2014

    I've finally been starting to feel more normal now that I am 1 week + from my chemo. That was until today. Was food shopping and had to race to the bathroom with an attack of the 'big D'! Sick Taking it easy and feeling a little better now.

    Chopped my hair super short and got a beautiful wig yesterday, so I now feel prepared for the hair loss that should be starting soon.

    Glad to hear others have also started or are about to start their chemo. It feels so good to get the ball rolling.


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  • bonnied
    bonnied Member Posts: 74
    edited November 2014

    http://nourishedkitchen.com/the-benefits-of-bone-b...

    http://www.smithandtruslow.com/ThymeOut/commonweal...

    http://abcnews.go.com/GMA/recipe?id=9731464

    http://www.pinterest.com/search/pins/?q=cancer%20n...


    I absolutely believe that we are what we eat. Above are a few links to some nutritional ideas and recipes you might take a look at as you go thru chemo or are preparing yourself for chemo. My chemo hasn't begun yet but I spent this weekend making bone broths to put in my freezer and for drinking each day. I have also made the tea (second link above) which is delicious and highlights ginger. If you have never tried fresh ginger, now is your opportunity. It is not only anti-nausea type herb but anti bacterial, anti-fungal, and way more qualities. The bone broths have minerals and amino acids that are easy for the body to digest. When we are on chemo our quality of health is diminished. If you have this broth easy to get to in your fridge or freezer and drink it regularly I bet it would help your body to rebuild what chemo is taking apart.

    I love to cook and am a bit of a foodie for healthy, but very delicious food. I am anxious to see how chemo affects all this. Rebecca Katz' books are great. She talks about how to season foods when your taste buds are outta whack by adding FASS: fats, acid, salt, sweet depending on what a dish needs. You do not want to be repulsed by food you eat especially during chemo, so if soup or tea is all you can tolerate, why not set yourself up with those easy things. I am an omnivore but I recently completed a plant based cooking certification that was a 6 month online cooking course..and fabulous. Sorry for the rant..but when we eat well, we feel much better.


    Hope all had a nice Sunday afternoon. xo

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  • enlm20Erica
    enlm20Erica Member Posts: 216
    edited November 2014

    Bonnied, thanks so much! I went thru all the links and made a BIG grocery list for tomorrow. I agree we are what we eat even though my eating isn't too bad now it can definitely be better. Thanks again.. This was very helpful.

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  • Liwi
    Liwi Member Posts: 298
    edited November 2014

    Bonnie thanks for inspiring me to try some of the recipes in the Rebecca Katz book a friend lent me. Unlike you, I am not much of a cook but this is a good time to learn. I'm going to get what I need for the tea as I love the flavor of ginger. Also will to make the Magic Mineral Broth as one of my first cooking adventures.

    I had my 2nd infusion last Thursday. Was a bit more fatigued than first round. Pretty much slept all day yesterday other than forcing myself to do a mile walk to hopefully minimize any bone pain from the Nuelasta. Woke up with more energy today and was a much better day. Made some earrings with my beads and went for a couple of walks. But really hard to concentrate.

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  • Tigger2
    Tigger2 Member Posts: 17
    edited November 2014

    Hello! I am hopping back in from a week away on "vacation" hahaha. That is what I am going to call my chemo visits! So here goes some random posts based on my (vast!) experience over the past week of being a newbie to chemo-world.

    I asked my dr about hair loss... she said that would be around day 15 post chemo. I have scheduled a hair cut! Just going to get in front of the loss and deal with it. Took lots of pictures with my kiddos this weekend. One thing to mention is a service that the support person told me about. They make a hair cap sort of thing from your own hair. Check them out... Hats with Hair http://www.hatswithhair.com/

    I read on some discussion here that a woman was swishing with salt water every time she was in the bathroom. I have been trying to do that and so far my mouth is not too tender! I have been drinking TONS of water and electrolytes. I love this stuff... http://ultimareplenisher.com/ for hydration. I get it from amazon.

    Just yesterday I started to have really bad aches. Sort of like wicked cramps. Much more than the little ones I was attributing to the nulasta shot. Horrible. So I started taking Tylenol and so far so good.

    The last thing is the "sea sick" bands on my arm! I have to admit. I slapped them on and I take them off only for a shower. I HATE feeling nauseous! So I am taking no chances! So far so good!

    So, had first chemo 6 days ago. I responded with some itching and had to have 25 ml of benedryl otherwise all went as it should! The next day I felt fine. Sort of walked around thinking "no what?!" and then just had a chat with myself and got on with it. The next two days I basically slept... couch to bed and back again. Day 4 was a WEIRD day for me. I wanted to attend my daughters school play so I rested and by the afternoon I was bugging out! I wanted off the train. Why am I doing this? I don't want to do this! What am I going to do when my husband has to travel for work. I will be alone to deal with this... I was a mess. Called the doctor and was reminded that I have "help" lol. Took a little pill and all was well. THIS IS SO NOT ME to take this kind of help but I think it is needed. I am a planner/manager type and there is no planning or managing THIS! At least to the extent that would bring me comfort all the time!!

    After my little bug out I have been fine. Bouts of being tired. Body hurts a bit but all is well and I am staying focused. So thankful for this website/group. Wishing us all well and praying. xx

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  • Tigger2
    Tigger2 Member Posts: 17
    edited November 2014

    Just caught up with the 5 pages of posts! What a great group we are. So many great comments and support. I love the idea of chatting about something other than the big C! We are so more than this... although THIS is all encompassing at the moment!

    Does anyone have a great book that they are reading? I tend to wake up after 5 hours of sleep so I am thinking I should get back to reading. Never had much time for it in the past few years!

    astarte - I thought you may be a Bruins fan with your profile pic! I live in Burlington, MA... a newbie though! We just moved to the area for my husbands work and then I was diagnosed. LOVING Mass Gen North Shore!! No long drives into the city!!

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  • Tigger2
    Tigger2 Member Posts: 17
    edited November 2014

    Hello again! One more thing... I just found this "shop" on etsy.com. I have trouble finding hats that fit me well (big head!)

    If you are looking for all sorts of caps that can be made to order this may be helpful. Not bad prices too! BTW... I do not know this person at all!! Just happened to look up cancer hats on etsy to see what I could find :) I could not resist getting some fun sleeping caps and a few pretties in different colors to go with sweaters. Not sure if I am going to be able to pull off the wig.., what are you guys thinking? Any wig shopping tips?! I did read someplace that it is good to go to a shop before you loose or cut your hair to get an idea of what "normal" looks like individually.

    https://www.etsy.com/shop/CJHats?ref=search_shop_redirect

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  • readytorock
    readytorock Member Posts: 199
    edited November 2014

    @Tigger2 - where are you treating in Boston? I start tomorrow! I found your post encouraging!

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  • Tigger2
    Tigger2 Member Posts: 17
    edited November 2014

    Hey Readyto!!! I am at Mass General North Shore Danvers. Are you close by? Basically my doctors are Boston based but spend 1 day a week at the North Shore location. Nice huh!! LOVE THEM ALL. Such an awesome group of people. I have had the best experiences with everyone.... even the fella that checked me in for my chemo appointment came back to tickle my feet (I was the last patient left due to my little allergic reaction!) So sweet!

    That is one other thing newbies... make sure you tell the nurses everything that is going on while you are getting your infusion. I have allergies so I knew where I was heading when my face got red and my ears started to itch... also... the first infusion is the longest is my understanding... the first drug was 90 min in with a 30 min wait. Then the second (which had to be stopped and run the benedryl and wait another 30 min before restart... and then the third. Good thing was when I was done, I was done! Walked out, into the car and home to dinner!!

    We got this peeps!

    BEST O LUCK READYTO!!

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  • enlm20Erica
    enlm20Erica Member Posts: 216
    edited November 2014

    Hi everyone, I have question. . I'm not a big medicine taker. I've never had the flu and never got the "flu shot" I asked my MOs nurse and she said I should get it before I start chemo on the 17th. . But I really do not want to. Have any of you had it or went without it? What's your thoughts on this?

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  • lisa137
    lisa137 Member Posts: 569
    edited November 2014

    I got my flu shot last year before chemo, because I figured that if anything could be worse than chemo, it would be having the flu while on chemo. I'd recommend it.

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  • knittingPT
    knittingPT Member Posts: 156
    edited November 2014

    Hey everybody. Here's a quick recap of my daily symptoms for those who are curious. Thursday: first a/c chemo. No problems that day. Just felt a little light headed. Friday:felt little queazy but crackers took care of that. Got my Neulasta shot and took some claritin. Saturday: tired but able to do putter around the house, talk on the phone, etc. Saturday night I did have some mild muscle soreness/bone pain but Tylenol took care of it. Sunday: I slept most of the day and felt like I had a pretty rough hangover.Monday:I feel almost normal.

    Someone asked about books. Some of the recent ones I've read and enjoyed are:

    • Lisa See'sSnowflower and the Secret Fan (and the others in this series)
    • Mary Doria Russell's The Sparrow
    • Barbara Kingsolver'sThe Poisonwood Bible

    Flu shot:I got mine(requirement for my employer and I do it every year anyway!)

    Exercise:I've been trying to walk every day.Sometimes I go farther than others.It's been kind of hard because I'm used to being able to run and now just walking tires me out.But, at least I'm moving right!?!?

    How are all of your friends dealing with your diagnosis? Some of mine are going over the top and texting me every five minutes and others are kind of distant. I'm not sure what I "need" for help yet but people keep asking. How are you all dealing with that? Anyone have some "go to" things that you are asking your friends to do or not do?



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  • FurAndFeathers
    FurAndFeathers Member Posts: 2
    edited November 2014

    Hi everyone! This is my first post! I'm getting my port put in tomorrow, and I'm sure I'll be scheduling chemo (T/C) later today at my onc appt. I'm nervous and afraid of chemo, of course because of the fear of the unknown and a feeling of being "out of control". I know everyone reacts differently, so I'll just have to wait and see. I work in a small medical office, and am worried about working full time, and also being around sick co-workers and patients with crappy ventilation in the building. Someone's already sick at my office and I haven't even started treatments yet. :/ Also, I'm wondering if I'll need someone with me for my treatments because it's an hour away from home? I know I'm worrying ahead of time, but would still like to know others' similar experiences? Thanks so much girls!

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  • Tigger2
    Tigger2 Member Posts: 17
    edited November 2014

    Thanks for the book recommendations! That was me asking!!

    I am not a flu shot person either but agreed to it... same with the hubs and he got one too since we are in the same domicile! I know the stats on the effectiveness but all the same, I am going to error on the side of precaution!

    First chemo trip (vacation!!) is a good idea to have someone there with you in case you have an allergic reaction and need some extras pumped in. I was a little sleepy after the benedryl so driving home would have been no advisable. Also... this is a process and I don't know about you guys but there are times when I am ok and others when I am NOT. Good to have backup! Bonding time!!

    A fella at work just told my husband about colesterum. I am going to look into it. Supposed to help.

    The big D has struck. Ugh.


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  • Tigger2
    Tigger2 Member Posts: 17
    edited November 2014

    Me again. See why I chose the name Tigger. I am all over the place these days!

    I would love to hear about what people are doing with friends. I have the same responses as above... lots of texts and then those who dropped off the face of the earth. I have one AWESOME friend that is hanging with me so I am a lucky duck. She told me today that she knows that I am going to be ok but that doesn't stop her from crying during the day. Me too!! What I am having the most trouble with those who want to come for a visit (we are new to the area and in a VeRY small apartment. Think make your bed, brew a Keurig, and clean the bathroom all at the same time!) Besides the confined space I dont feel like entertaining. Sometimes talking on the phone is too much!

    Are you finding it tough to take on others thoughts about this disease? I try not to but it is tough when you have to tell people... which I have been avoiding untl or if necessary!

    Gotta laugh at my SIL though. She sent me a text all about her new job/life and hopes that when I am done with chemo we can get together. That did make me giggle.

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  • Astarte
    Astarte Member Posts: 45
    edited November 2014

    KnittingPT and Kiwi, glad to hear that your treatments both went well. Knitting PT, with my friends I just tell them for right now the best thing they can do is just listen if I want to talk. And let me work if I don't want to talk. Having a no talking about cancer day does wonders for me and my family as well.

    Liwi, the emla cream is a lidocaine and something else in it numbing cream you put o an hour before your treatment. They gave me these clear bandages to hold the emla cream in place on the port.

    Missg1984, I am so glad to hear that your daughter is ok. That's wonderful that your family can help out. Mine does the same for me.

    Raspysqueen, you can do it! Just rest when you need to, eat when you can, drink all you can and take it slow.

    Vintagegal, I'm sorry that you're going thought this again. Hopefully they get it all this time!

    Tigger2, my family hails from Somerville. Burlington is a nice town, have everything you need close by and it's still quiet suburbs. Get on up to Old Orchard Beach, Maine and Salisbury Beach in MA once summer comes back, they are both beautiful. Whale watches are a ton of fun too. As for books, I'm reading Patrick Rothfuss' The Wise Man's Fear, I'm nearly done with it and love it. Going to read book three after.

    Enlm20Erica, I always get a flu shot each year, but I have asthma. I would get it now because our immune systems are going to be obliterated and need all the help they can get. My whole family went for flu shots Friday, including my toddler. Even got the needlephobic husband to go.

    FurandFeathers, welcome. My docs tell me that they believe I'll be able to drive home, but my parents want to come just in case. And since they are coming I'm going to take advantage and snooze in the back of that big old Suburban Smile I worry like you do too, it's normal.

    Do any of you have heavy duty pain killers that you take to help with the pain?

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  • enlm20Erica
    enlm20Erica Member Posts: 216
    edited November 2014

    Thanks ladies, I'm gonna go ahead and get the flu shot. .uugh.. it's better to be on the safe side though.

    As far as friends. . I've chosen one of my friends to talk to about mostly everything dealing with this situation. All of our friends are not the same some can only be given updates (eg. Surgery the 19th, chemo the 17th just the basics) and that's it. Not because they are any less than others but they may not know how to handle the conversation appropriately and could easily strike a nerve without knowing. Not to be mean,but nobody really wants to hear about your aunt that died from breast cancer 10yrs ago, not right now when it's such a prominent part of my life. Any possible negativity I steer clear from. I talk to my husband alot but I filter my thoughts before I speak because I really don't want to have him worried even if i am. I find alot of comfort here because I know you ALL know how I feel.

    Astarte, I still have percocets from my double mastectomy in September, when I have major pain that won't leave with otc meds I take one of those. It usually works.

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  • Tigger2
    Tigger2 Member Posts: 17
    edited November 2014

    I have baby dose of Lorazepam (.5mg) but that is more for aniexty I think than pain. No pain so far but I have not had surgery yet...

    Erica you give sage advice.... and I am listening. So true not everyone can handle this... and so the kids gloves come out with the sensitive friends. Good to remember ;)

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  • karen1971
    karen1971 Member Posts: 37
    edited November 2014

    tomorrow i go see my surgeon abot putting the port in me. i know i have to do all this chemo and radiation, but my mind and heart is worring about my dad he is very sick and is in the hospital. i want to be there in ohio with him and i can't right now.

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  • thatcameragirl
    thatcameragirl Member Posts: 16
    edited November 2014

    Hi girls! I just wanted to say hi and tell you that you are all so encouraging to me. I'm glad for the info on how you are feeling on what days. I have 2 kids (a daughter who is 10 and a son who is 8) who I homeschool so I'm trying to plan around what my bad days will be ( I start the 18th). Someone asked about friends helping and I would say to let them bring you a meal or sit with you at chemo. I am having some friends go wig shopping with me and we are having a girls night afterwards. I think it will make it more fun instead of depressing. I've had many friends buy me hats as well. Another friend set up a fundraising website for me to help pay for medical bills and it's already raised over $700 and she just posted it today! So there are things they can do if you think if it. I like to do things on my own but I'm trying to think in terms of if it were a friend of mine I would want to help so I don't want to deny them that, you know? And usually I end up enjoying the help even through my stubbornness of not wanting help. :)

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  • readytorock
    readytorock Member Posts: 199
    edited November 2014
    tigger2 - Im treating at Winchester Hospital - I got second opinion at DF and decided I just did not like the doctor there The treatment decision was the same, so why not go where I am happier (and more convenient!)

    My start date is tomorrow! I hope to have an easy first week - will be able to stay home all week if needed!

    I did buy a wig and have to say the experience was actually pleasant - Im not looking forward to showing up at work with it that first time as I just went from long to getting 12 inches off and the wig is somewhere in-between! I think some people may be a bit confused!
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  • VintageGal1111
    VintageGal1111 Member Posts: 705
    edited November 2014

    Hey Gals

    going for my second round at chemo today. Started A&C last Sept '13, then went on to weekly Taxol & Herceptin. Finished Taxol in Feb '14, continued Herceptin til last month when we found cancer had returned.

    I felt *safe* while doing treatment, really didn't think the HER2+ would show its ugly head again.

    But here I am, on my birthday no less, starting taxoeter, pergeta & herceptin. ..sigh...

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