Starting Chemo March 2015

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  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited March 2015

    Trvler, such a complicated situation for you. I'm so sorry.

    Regarding surgeons, I had the same decision. A breast specialist 2 1/2 hrs away and a general 5 minutes away. Because I'm in a metro area of only about 25,000 people, (coastal Oregon-beautiful but remote) there was no specialist here. It was an agonizing decision and I kept going back and forth. Ultimately, after discussing with several other Drs and loved ones I decided this:

    I live alone with no friends of family near

    Although a double mx is a very big deal for me, in the grand world of surgery, it's not that complicated a procedure

    I interviewed the surgeon who was absolutely on top of SLN biopsy protocol, using BOTH the die and the radioactive material/Geiger counter methods

    I would have had to drive myself for follow up appts, drain check ups several times alone, or stay alone in a cheesy hotel to be near the specialist because I'm kind of low income.

    That sounded horrible. And as it turned out I had a lot of post mx pain and had repeated follow ups with surgeon advocating for lots more pain meds than he originally planned on giving me.

    So I asked the general the hard questions, crossed my fingers, and went with him. The local, non breast specialist surgeon. It was the best of a bad situation. Because of all the follow ups, being able to take a 5 min cab ride was huge. I didn't drive after mx for almost 2 months. I don't think I could have done it any other way.

  • wpmoon
    wpmoon Member Posts: 270
    edited March 2015

    rleepac - My port's name is Penelope, aka Penny the Port. So it was probably me that you remembered saying they named their port. A friend helped me come up with it. I figured since it's going to be in there for a while, might as well get comfortable with it. My surgeon that placed it did an amazing job with the incision - it's very thin and is actually already fading. I'm requesting him for when they remove it, too. It's finally not bruised and the swelling has gone down after three weeks, so it doesn't look as big as it did the first week.

    I've developed the mouth sores that they warn you about, so been doing a lot of rinsing with the baking soda/salt concoction. Brushing with a soft brush and Biotene toothpaste. So far coffee is the only thing that's lost its flavor to me, which is sad. My taste buds feel like they're burned almost.

    I've also been worried about the chemo infusions building on each other, with each one's side effects becoming increasingly impacting than the last. It has me worried about functioning at work, and possibly losing the new job I just acquired. But, if I do, then it wasn't the right job for me, and my health comes first. I'm waiting to see how I feel after infusion #2 before I say anything to them, if at all, and then decide if I can keep working through the fog. I think it might be hard with the fact that I'm exhausted and all I want to do is sleep, and they all say to rest when tired. I can't exactly sleep at my desk during training...

    It's SO HARD to drink so many fluids. I've been drinking so much water and gatorade I don't sleep through the night because I constantly have to pee. I've also heard that if you feel dehydrated for ANY reason, your MO should be able to set you up with an appointment in the infusion center to get a bag of fluids, which should help with dehydration. Might as well make use of this damn port...

    I'm doing the cold caps, and so far no shedding, but that'll come next week, which I'm worried about but trying not to think about. The not washing is driving me so nuts that I almost want to just say SCREW IT and shave my head and get that wig!

  • migrantt
    migrantt Member Posts: 26
    edited March 2015

    hey all- i'm on day 3. first chemo and fluids behind me. feeling really down today. not much sleep last night and feeling overall pretty crummy. trying to get my spirits up, but having a really tough time. can't eat much. haven't slept, and have a lowgrade headache that's knocking me out. hoping tomorrow's better. hoping today is better for all of you..

    m

  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited March 2015

    Boobie Betrayal (welcome! Luv the name!) and Princess Meh, I never really seriously considered the cold cap option. I know it's s fantastic option for some people. For me, the idea of trying and it failing, with me in the shower and clumps coming out..... I couldn't have handled it. At all. I felt so strongly to keep things as simple as possible, with as few pitfalls as possible. I shaved six days ago. I love my hats, never shed a tear, and even took my hat off in public today. I'm not trying to prove a point. I'm not trying to be a hero. I'm just trying to use my limited emotional resources (and they are SOOOO limited) to manage SEs and try to be healthy. There is only so much capacity for me to handle the seemingly endless variables.

    I applaud all of us who make the right decisions for ourselves. Nobody else.

  • rleepac
    rleepac Member Posts: 755
    edited March 2015

    Trvlr - you can call me whatever you want LoL. My username is my first initial and last name with my credentials. I'm a PA-C so...rleepac. Or you can call me Bekah

    Yes, please stay with us even though you haven't started yet. Love your input!

    Neo adjuvant chemo isn't all that new of a concept. Don't know what the MO has a problem with

  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited March 2015

    wpmoon- try Popsicles or jello. That counts as fluid.

    Migrant-so sorry you feel crappy. Someone told me for headache two very strong cups of coffee, a dark chocolate bar and OTC something like Advil (I can't tske Tylenol but that could work. Try nibbling on a saltine. Not eating and hydrating is a viscious cycle and nausea gets worse. Do you have Zofrin or Compazine? Take it even if it's not that bad. Just like pain, you HAVE to stay ahead of it. Thinking of you and hugs

  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited March 2015

    my I'm a chatterbox today but I wanted to pass along the good news that I felt well enough on day 6 after 1st chemo to go to Jack's last evaluation to become a therapy dog. We passed! So thrilled. image

  • migrantt
    migrantt Member Posts: 26
    edited March 2015

    jackbirdie- i love your pic! going to use your smiling face as an inspiration today.

    i'm allergic to caffeine, so no coffee or chocolate for me. i've been able to eat some sea salt crackers and drink bits of water. have taken zofrin - and that's kind of helping. mostly i'm just feeling down (haven't gotten great answers from the Onco Nurse about my itchiness or being flushed in the face and chest- no temperature, just flushed), and im tired. really really tired. ..and crabby. super crabby. ...hoping for a better day tomorrow.


  • Trvler
    Trvler Member Posts: 3,159
    edited March 2015

    Migrantt: I am sorry you are having a hard time.

  • Trvler
    Trvler Member Posts: 3,159
    edited March 2015

    Wow I have never heard of a caffeine allergy. That's a bummer.


    Bekah: What's a PA-C?

    Jack: You look great! Congrats to you and Jack!

  • Italychick
    Italychick Member Posts: 2,343
    edited March 2015

    Migrantt, the nurse practitioner told me Zofran can cause headaches, so I took the Compazine first. Not sure if that helps or not, but if you continue to have headaches maybe try the Compazine? Day 3 was my worst day. Hang in there, and hopefully it will get better for you.

    Jackbirdie, awesome to take Jack for his therapy dog evaluation! He looks like quite a little cutie. How are you doing with the post-steroid period? Sleeping any better yet?

    Rleepac, I call my port Nickel because that's what it feels like to me, that I have a Nickel embedded in my chest.

  • PrincessOfMeh
    PrincessOfMeh Member Posts: 167
    edited March 2015

    Congrats on the therapy dog certification!

    Caffeine? Oh my, don't say it. I switched to decaf this morning to keep my hydration up and miss my coffee horribly. I mean, I was one of those people who ground the beans...Coffee and I have been in a devoted relationship for 30 years. *sobs*

  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited March 2015

    Italychick- thanks for asking about the sleep. It's getting better, so now it's more that my schedule is off and I wake up and look at houses for sale online at 3am.

    I had been planning to look for a house as soon as I settled in this area and decided I like it. And I do. But now may not be the best time lol. However, I've always been greatly and positively distracted by aproject...., so maybe...,,,

  • Lovemylab
    Lovemylab Member Posts: 80
    edited March 2015

    I will be getting my port on 3/16 and first chemo 3/26. Getting AC for every other week for 8 wks then taxol and herceptin. I hate all of this and wish it would all go away but I will do it and get through it. I am not going to work as I am a nurse and am terrified of catching something. I told my mom that today and she told me "all the ladies on TV work with breast cancer". I told her too bad. They aren't going to get TB on TV. Trying to stay positive but so far am just positive that cancer sucks!

  • Italychick
    Italychick Member Posts: 2,343
    edited March 2015

    josalive, how did your treatment go yesterday?

  • shaz101
    shaz101 Member Posts: 718
    edited March 2015

    Wow, how chatty has everyone been!. Took me a while to catch up. Welcome boobiebetrayal and lovemylab I'm so sorry to see you here, but we are all wonderful goddesses and hopefully we will help you and ourselves make this process as comfortable as possible. Sometimes as much as family and friends care they just don't get it!

    I'm still hanging onto my hair and I've decided next Monday or Tuesday I will shave it off. Yesterday I wore a head scarf to try and take as much control of this process as I can.

    I have oral thrush now! The once nurse recommended some drops so I started them yesterday. 

    Great photo Katy, you look gorgeous and I'm so happy for you and jack, he looks lovely. 

    Oh as for my chronic constipation, its cleated now yay. I found a stomach massage has helped me enormously. I used youtube and searched for massage for constipation and there were some great tutorials. 

  • Trvler
    Trvler Member Posts: 3,159
    edited March 2015

    Katy: I am the same way about projects. Cancer is my project now. :(

  • BBwithBC45
    BBwithBC45 Member Posts: 727
    edited March 2015

    I'm warming up to the idea of naming my port - thanks for starting the trend Wpmoon!

    I'm thinking Snoopy, because he's my favorite. Also, my chemo nurse's scrubs have Snoopy on them, and once my chemo is done, she sticks a band-aid with Snoopy onto my port. All signs point to Snoopy.

  • Trvler
    Trvler Member Posts: 3,159
    edited March 2015
  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited March 2015

    Shaz- bummer about the thrush. I feel like my mouth's s bit sore but not extreme. Keep using oasis, brushing tongue (and rest) and swishing baking soda.

    I've been thinking it's very unnatural that I haven't had too many complaints. Today is day 7. First day I didn't take Claritan. Then BAM! This afternoon lower back spasms. Anyone else? It just might be i am doing too much and did walk and stand much longer today due to Jack's Eval. It could be anything. It hurts. Doing heat. Might try some ice. If all else fails I get a blood draw tomorrow and I can ask the nurses. I just wondered I anyone else ??

  • DavisD
    DavisD Member Posts: 338
    edited March 2015

    Hi all! I don't think I can comment on everyone but I want you all to know how much I appreciate reading. Lovemylab-I'm getting my port in on 3/16 too. I agree this sucks and if I hear one more time about how anyone's relative w/BC worked all through her chemo, I'm gonna go postal! Hang in there. I'll be just a week before you so we can share stories.

    Found out my start date for chemo-day after the port goes in which I hope doesn't cause a problem.  Tues 3/17 is the day. I plan to get my toes painted, hair cut super short/donate to Locks, look again at wigs and order some headwraps cause I looked like a total clown when I tried about 25 on during lunch break! The only one I thought I could tolerate was 1,300.00!! Are you kidding me? I had her swiftly return it to the deserving mannequin.

    Katy-you look beautiful and congrats to you and Jack!

    migrant-I hope you start feeling better. I hope you have a good support system. Sending a virtual hug!

    Love all the ideas for naming your ports!  I plan to pull this entire thread up on sunday and take notes so I have as many tools as I can manage to help me get through this. So grateful.


     

  • BBwithBC45
    BBwithBC45 Member Posts: 727
    edited March 2015

    Wpmoon, I think you were the one with a sudden onset of a bad acne/rash?

    I have it now, it seems to have been spreading throughout the day, my face hurts. My husband thinks it's the side effect of the steroids. I'll have to call the MO tomorrow. I hope they'll give me something for it

  • Italychick
    Italychick Member Posts: 2,343
    edited March 2015

    DianeDavis, the wigs won't look right until your natural hair is gone. Accessing the port immediately is totally acceptable and they can numb it if you are having pain. My chest area was sore the first day, but the pain went away quickly.

    The Biotene also has a mouth spray which works amazingly well because you can spray it in the back of your throat and it really works. I just hate the taste of it, but I use it anyway.

    Jackbirdie, sorry about your spasms. The Epsom salts baths totally help me. Maybe you just overdid it a bit today, because I thought the Neulasta shot was supposed to cause bone pain, but it sounds like yours is soft tissue related. The doctors will know what is going on. When I went for my bloodwork, they had a whole questionnaire they went through with me, and they checked me over for rashes, everything.

    After work today I did a 26 mile bike ride with 1600 feet of climbing. The last two miles I was slow as molasses, but I did the whole ride and never had to stop or walk. So feeling hopeful!

    My baby brother is coming out Memorial Day for chemo no. 4, and I am very touched he wants to be here for me. He lives in Chicago. He will stay here part of the time, and part of the time with my daughter because he is bringing his two year old so she can't be here the day I do chemo I think, or probably for two days after.

    Thanks to all of you for being here. It helps so much.

  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited March 2015

    amazing you are IC! I probably did overdo. I had to pick Jack up a lot so the residents could feel his soft ears and I'm not used to that. It was a slow road healing from the mx. I am on the ice pack now, alternating with heat. Might take an oxy. Super tired. Trying to stay awake as long as I can so I sleep past 3am. Arrrgghhhhhhh.

    But like I said before, I feel like I had LIFE today. Not "life with BC". Big diff.

  • Italychick
    Italychick Member Posts: 2,343
    edited March 2015

    Jackbirdie, I am not advocating anything, but I got a bottle of Valium from my primary doctor. I haven't taken any yet, but it is my safety net because Valium will knock me out for 18 hours. And trust me, if I need it through this process, I will use it. So maybe the OxyContin isn't doing it for you pain and sleep wise, so maybe your doctor can prescribe something else to help? I know sleep is a big deal, and if I couldn't sleep I would be destroyed. I feel so bad for you, I wish you could get some rest.

    If I were there, I would give you a big hug right now.

  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited March 2015

    thanks so much for the v-hug, IC. I have clonazepam, and I took one.,it has a longer half life than some of the others in that category, but it should help. I just feel like I'm pouring stuff down my gullet at an alarming rate. I have had elevated liver enzymes off an on for a year or so. It doesn't seem to be related to bc, but I worry

    I'm listening to some music now, and turning off the screens.

    The song on my playlist that just came on I dedicate to my March chemo sisters:

    Brandi Carlilsle ( live acoustic ) IF THERE WAS NO YOU. and I mean it. Good night all.

  • Meme117
    Meme117 Member Posts: 194
    edited March 2015

    I can't remember all names yet so sorry. I'm getting my port 3/17, echo on 3/18,begin on 3/23-wahoo! I've seen more doctors and medical staff these last 14 days then I have in 20 years,no joke. I almost burst out in tears at yoga tonight but my mantra is to conquer the fear, trying my bestest.

    Jack birdie so happy for your jack congrats!! Sorry you don't have much support out there in Oregon, what made you go there if you don't mind me asking. I wish I could send some fairygodmothers to take care of you💓

    Italychick you sound amazing - hope I'll feel up to all that activity. The weather here is finally breaking out the sun.

    I'm gonna name my port too, thanks for the idea. Hope everyone gets a good night of rest!

  • windgirl
    windgirl Member Posts: 340
    edited March 2015

    Hi ladies,

    I'm from the August 2014 chemo group and popping in to say good luck to all of you. I finished TCHP chemo at the end of November, and finishing radiation next week. It seems like forever but once it's done you will be surprised how quick it went.

    I also wanted to let you all know that while I did have unpleasant side effects, they were not nearly as bad as I had imagined going into this. My biggest side effects were fatigue during days 3-5, which kept getting longer with each treatment, and heartburn and bad taste in mouth during the first 7-10 days. Best thing you can do for yourselves is to protect from germs as much as possible (using basic common sense nothing extreme is needed unless you have very low wbc count) to avoid illnesses that can cause delays in your treatments.

    I will also mention some vanity points for those of you who may be interested :)

    I wasn't recommended the cold capping by several docs so didn't do it. If you are self conscious about scarves like me, what helped me a lot was a full lace human hair wig. It was very comfortable, easy to maintain, and I looked and felt as normal as I could be under the circumstances. People didn't realize I was wearing a wig even though they knew I was getting chemo, they are very natural looking. Anyway, I have half an inch of hair now and still wearing it until I get another inch or two.

    Nails, mine started getting lines with each chemo infusion but I did not have any other issues until after chemo was done and went without nailpolish. Few weeks after being done several of them lifted and look half normal and half white now. I wear nailpolish to cover it up, and hear that it can take a while to return back to normal. I did not ice them.

    Bloat/weight gain - my chemo caused bloating, specifically taxotere. I would fluctuate 8-10 pounds every 3 weeks with lowest being after steroids and would gradually creep back up until the next chemo. While steroids make you gain weight, they actually help keep the bloat from chemo down during that first week. Anyway I ended up at about 10 pounds heavier. I also started showing water retention around my legs and ankles, sometimes even around my belly and hands, after the 4th one. It took about two months to resolve itself and I did not believe it wouldbut the water dropped off and I got left with 3 pounds of fat which I am still carrying as I have not dieted or exercised much yet. Don't worry if you gain weight as well, you need all the food you can manage to eat. Most of the weight will be water and will come off eventually.

    Feel free to PM me if you have questions. Again, wish you all the best of luck and minimal side effects. Take care.

  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited March 2015

    ok, after this I will really go to bed. I have a very brittle case of bipolar I. I had made a total mess of my life, went to Peru for awhile, left my job, my house, everything. Thought I could live a healthier, more natural life without the meds that were making me sicker than the disorder. I was wrong. I blew it. Came home barely alive, virtually penniless and homeless. Spent a couple of years staring at the wall. A friend took me in. The same friend that came last week. Tried every drug, every counseling. Volunteered, walked dogs. Nothing helped. I wanted to die.i felt dead already. My younger brother took me under his wing and we made a bucket list of things to do to get me interested In life again ..

    He got sick. I took him to the hospital. He was diagnosed pretty much on the spot with lung and brain mets.

    He died in my arms 10 weeks later. He tried to save me and I couldn't save him.

    I came to Oregon to get away, fly under the radar. I got healthy. I'm pretty stable now (except when I take steroids). I love the weather here, I have found peace here. I made hard decisions about isolating myself in favor of an uncomplicated lifestyle.

    I never meant to bring this up. This is not the place, and I'm sorry. I wanted to die. Now I want to live

  • shaz101
    shaz101 Member Posts: 718
    edited March 2015

    Katy. I don't have time have time to send you a message just yet. Just know that you are in my heart and I just wish I could give you a real hug. I hope you have managed to get some sleep. Thinking if you. Chat soon.

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