April 2015 Chemo Crew... Starting in April? Please join us!

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  • Supernannymom
    Supernannymom Member Posts: 50
    edited April 2015

    Little blue...BEAUTIFUL!!!


    Ok girls!!! I spent the day in the ER on Saturday...the ER!!! I hate the ER!!!!! Grrrr, why would they sent a chemo patient to the ER with a bunch of sick people!?!! After having a lot of pain on the right side of my neck, a CT scan showed that I have a blood clot in my neck where the catheter is in my vein from my port. Now I have to give myself a blood thinner shot in the stomach every day to dissolve the clot as well as keep it from growing. On the bright side, I spend the day in a private ER room with my DH...sorta like a date - only in the ER!

    Anyone else out there have a similar issue? I have round two this week; and after round 1...I am a bit apprehensive. My nurse told me "take some Ativan"...LOL yes but that doesn't fix the issues of extreme nausea!!!

    I wish each and every one of you a beautiful week!!

    Julie


  • Fran2014
    Fran2014 Member Posts: 140
    edited April 2015


    LittleBlue,

    Good morning! Truly beautiful pictures which inspire! Started my post-surgery chemo. last Thursday and still feeling very sluggish. Hoping to work up enough energy to get out for a bit of a walk today now that we are finally getting some real Spring weather here in NJ. Working to embrace the sunny days ahead!

  • lovlilynne
    lovlilynne Member Posts: 405
    edited April 2015

    Jen, I agree with everyone, your pictures are beautiful, and you look great - I'm not just saying it. Some people can pull off the buzz/bald look. I think having darker hair helps. I don't think I'm going to be one of them - I can feel lumps and bumps on my head, and general shape is not good. :-)

    Lynne

  • lovlilynne
    lovlilynne Member Posts: 405
    edited April 2015

    Julie - UGH! That sounds horrible - even with a date with DH. I hope it resolves quickly and you don't have any more pain.

    Last year my DH was critically ill in ICU, etc., and they gave him blood thinner injects daily - his stomach looked like he had been in a fist fight and he lost.

    You are up again on Thursday? Hopefully a few days will help. BTW, I forget where I read it, but someone was taking the Ativan for nausea - so maybe it will help!

    Fran2014 - good to see you pop in again. I don't remember what regime you are doing, but it sounds good if you are feeling up to a walk.

    -Lynne

  • greenae
    greenae Member Posts: 540
    edited April 2015

    Anewbeginning,

    The decadron just made me Crazy. Couldn't sleep, so hyper and short tempered and emotional and 24 hour horrible headaches for a week. My MO says this time I will taper off and see if that helps. I know its a necessary evil, so at least this round I am pepared and not afraid to take motrin every 8 hours.

    arlene

  • melb44
    melb44 Member Posts: 130
    edited April 2015

    Hi everyone -

    I just got back from my vacation and now ready to get this thing started. I met with my oncologist today. She was really nice and had explained everything really well. I have my multi disciplinary meeting on Wed. She is suggesting 4-6 rounds on TC and her second choice would be dose dense AC-T.

    Wondering how you are all doing on these protocols. Any reason I should be pushing for one vs the other?

    I need to make an appointment to get my port in. Hopefully this week or next week. I have my chemo training next Monday.

    Thanks!


  • ksusan
    ksusan Member Posts: 4,505
    edited April 2015

    Good catching up with everyone. Great to see your photos!

    Julie, I also spent a chunk of Saturday in Emergency with port pain. Mine seems just to be "it's hurting while it's healing," which I guess is a good outcome. I'm sorry your have a clot, and really glad they identified it.


    image

  • KBeee
    KBeee Member Posts: 5,109
    edited April 2015

    Wow! I missed a lot. While I still feel good, we moved all 3 kids bedrooms around and filled about 10 huge trash bags of stuff to get rid of. Less stuff in their rooms means less mess!Glad that task is done, and I have 3 happy kids who all have their own rooms! That took every waking moment, so I never even logged on! Lots to catch up on; sorry if I mess anyone.

    ksusan, hope the port pain is better. Glad it was not more serious!

    melb44, There is a research study out now comparing AC-T vs TCX6. It is ongoing, so results will not be in for a while. It seems to vary geographically which is used, and also based on MO preference. TC does not have the potential for heart damage, which is why it is preferred by some. The risk of heart damage is low, but if you are hte one it happens to, it doesn't matter what the risk is.

    arlene, I hope tapering the steroids helps!

    fran, I am a Jersey girl too! I grew up in Vernon. I am in Iowa now, but I definitely still have my Jersey spirit. My family is still there.

    supernanny - I hope the Ativan helped the nausea.

    A new Beginning, I hope AC is good to you. It has been to me...at least so far! I got lucky with round 1...hoping for the same tomorrow! Stay on top of the nausea meds. I set my phone alarm.

    Gingerchi and positive spirit (and anyone I missed), I hope all went well in teh chair today and that the side effects are few.

    mamajen, glad you had a strong day. I hope your MO has some better ideas for you!

    sheshe, way to put your talent to work making hats!

    Allicat, how did things go on Friday?

    Karen, I hope you had fun with your sons.

    little blue, Love, love, love, love the picture. Wow! Both a re great, bu tthe one with you and your husband. There is just something about that picture. It is amazing...frame it! You are beautiful, and you can just see the love in his eyes!

    I saw MO today for blood work. WBCs had dropped, but were all still within normal limits, so Neulasta did its job! Yahoo! Hemoglobin dropped below normal, but that was expected. It is not low enough to make me exhausted or cause shortness of breath. I am hoping it does not keep free falling at its current rate! Tomorrow is AC #2 for me. I am hydrating, hydrating, hydrating today! I am hoping nad praying to do as well as I did last time. I also have to say that the MO I had in 2013 was horrible. He minimized everything. Current MO is a rock star! What a difference.

    Wishing everyone a great day! Time for me to get out in the sunshine and go for a walk!

  • sheshe3
    sheshe3 Member Posts: 70
    edited April 2015

    Littleblue, the photo of you and your husband is just incredible. You look beautiful. So wonderful that DH and bro stepped up with awesome support for you!

    Wow! Three of you landed in the hospital over the course of the week! *1xmel, supernanny and kSusan* I'm so sorry! Prayers for fast and complete recoveries for you all.

    Gingerchi and positivespirit, I hope your chemos are going well. Prayers for both for an easy week ahead with few SEs.

    I have a busy week ahead... my insurance doesn't like to make things easy on me. They are no longer allowing me to lump my MO appointment in right before my chemo and are requiring me to do it on a separate day. They also make me go to a different lab for bloodwork. So on Tuesday I go for my blood work, Wednesday I see my MO and then Thursday I go for targeted therapy- herceptin. The fun part (not being sarcastic here,) is that Friday I get to see my stepdaughter in a high school play and then Saturday I get to see my granddaughter in a Jr hi play. Here's hoping the herceptin is kind again this week and that I can attend both!

    Sheila

  • KBeee
    KBeee Member Posts: 5,109
    edited April 2015

    sheshe, that's crazy that they make you do that. Who makes those dumb decisions???!!!


    Lynne, Do you have a start date yet?

  • lovlilynne
    lovlilynne Member Posts: 405
    edited April 2015

    I think I'm starting Monday on the 20th, but I'm getting annoyed because I've spoken to two nurses/coordinators (not sure what to call them), and they both said I was starting this Thursday, the 16th. I'm like, "I can't start on Thursday, that's when I'm having my ECG. Don't you have to look at that first?" Plus, I want to be on a Monday schedule anyway. If I'm gonna end up in the ER, I want it to be during the week :-) Anyway, I'm going to call tomorrow to lock it down (since no one else called me to day - just the port nurse.

    Cherie and Lorraine, I hope everything went without a hitch today and that you have the energy to check in soon.

    Allison and Tina, best wishes for you tomorrow - and any of our 2 weekers who are having second round this week. KB, I know you are tomorrow? I'm not sure about Stacy? And there may have been a couple today? Ssonia and Cheryl? Check in and let us know.

    Sheila, I agree with KB, that is crazy! I hope my insurance doesn't try anything like that. I'm going to have to write that one down to ask at training. Speaking of which, I have my training scheduled for Wednesday morning. I'm assuming that I will be told exactly how the day before, day of, and day after will go (what meds to take when, etc.) Is that for sure? Also, questions answered like, if they have a fridge and/or freezer, where guests get to sit, how many can you bring, etc. I have a whole list of questions like that. I also expect to walk away with written instructions so I don't have to take notes. What was your experience?

    BTW, I don't think I thanked you all for responding to the driving survey. I think I am going to see how the first treatment goes, and then decide what to do from there. I've got a 13 mile commute home - about 26 minutes, and I'm sure I'll be ok to drive - and what are they going to do if I just leave? Arrest me?

    -Lynne

  • ThePrincess
    ThePrincess Member Posts: 424
    edited April 2015

    Lynne - at my training appt I got detailed med instructions for first 5 days. Also details on how I should feel each day - there was also a tour of the infusion center and kitchen area.

  • StacyMc329
    StacyMc329 Member Posts: 48
    edited April 2015

    I've got #2 tomorrow...thx for thinking of me. I had a great week last week. Hoping this week will be easy for me and all of you:) xoxo keep me poste

  • littleblueflowers
    littleblueflowers Member Posts: 2,000
    edited April 2015

    Oh Julie I am so sorry you got a clot! Those are nasty! I had one pre chemo and they had to open my bmx incision up again to get it out. It's great you caught it and you get to spend time with your DH though....small blessings. Sending you positive thoughts and clot busting super power lol!

  • ThinkingPositive
    ThinkingPositive Member Posts: 834
    edited April 2015

    When I had my port in I had pain in the neck area. It would often bulge. That was towards the end of my chemo treatments. I went for a flush 4 weeks after my chemo and I had an anxiety attack so the nurse called my MO and told him that she suggested they remove my port so I didn't have to go through another flush. Taking it out was a nightmare. I didn't realize they were scheduling me to have it out awake!! I almost died when I found out. But made it through after requested more injections to numb the area. It never dawned on me that you could get a blood clot...glad I had it out..!!


  • GingerChi
    GingerChi Member Posts: 252
    edited April 2015

    Hey everyone, I'm doing pretty well after my infusion this morning. I have a headache. I was able to eat some soup and toast even tho I wasn't hungry. I'm starting to feel a little iffy nausea wise so I took my Zofran...the nurses told me to take it at bedtime tonight and in the morning. It didn't hurt at all when they accessed the port....so glad I didn't have to get stuck!

    positive spirit, I hope you are feeling well and will check in soon!!

    Thank you for the well wishes!!



  • KBeee
    KBeee Member Posts: 5,109
    edited April 2015

    Stacy, we are on the same schedule...will you have weekly Taxol or 12?

    Ginger, Glad you are doing well so far. Keep on top of the nausea meds... even overnight.

    Julie, so sorry about that clot. How awful! I hope the Lovenox does the trick

  • Karen30
    Karen30 Member Posts: 135
    edited April 2015

    hello ladies- I called MO office today to ask whether I needed to take anything prior to infusion#1 on Friday- they said no- everything would be given IV- they finally have all the path results in and it turns out I'm triple negative- I'm told there are pros and cons to that- on one hand its aggressive but on the other it generally responds well to chemo- let's hope - I just keep reminding myself of how small it is right now and how my MO said it has been caught very very early- apparently in his estimation it only started with in the last 2 months - I keep feeling so so grateful that I had my mammogram and that this was found now rather than months from now when it may have been so much worse.

    Ginger- hope you continue to feel good

    Julie- hope that clot resolves quickly

    Lynne- I'm off to order my chemo caps right now

    All of you having round 2 tomorrow- sending positive thoughts🌼🌷🌸

  • raisemeup
    raisemeup Member Posts: 11
    edited April 2015

    Heading off to the chemo bar tomorrow for round #1. Having A/C for four rounds then on to Taxol. A bit nervous but I know I can do this! So happy for this thread as I have learned so much!

  • littleblueflowers
    littleblueflowers Member Posts: 2,000
    edited April 2015

    Hi Karen, I'm another triple neg here....my onc said the same thing....it responds well to chemo and we caught it small. I say that cancer messed with the wrong ladies! Agressive? Ha. WE are agressive and we will win. Not even a question! Hugs!

  • ksusan
    ksusan Member Posts: 4,505
    edited April 2015

    Kick its butt tomorrow, ladies,

  • Rpayton
    Rpayton Member Posts: 235
    edited April 2015

    Just starting chemo this Friday. Diagnosed with stage 1 invasive ductile carcinoma. Had a lumpectomy in March. My cancer is grade 3 aggressive Her2 positive, estrogen positive. So traditional chemo radiation is the route. Nice to read all the posts here and those off you that have been there! I'm a medical assistant and hoping to work, although more admin duty and less patient hands on. Have decided to get my head shaved before treatment. Just curious if any of you shave completely to the scalp, shiny bald or leave stubble? Have heard not to aggravate folliculitis by doing smooth. Have also heard if you leave stubble it is uncomfortable.

    Live the day as fully as you can! Blessings!

    Renee

  • Sssonia
    Sssonia Member Posts: 22
    edited April 2015

    Hi everyone , trying to read everyone's posts, so much has happened . I had to shave off my hair today it was falling in rediculus amounts . I have round #2 of AC tomorrow or I should say in a couple of hours . Not sure if I am having an anxiety attack but feel very nervous like short of breath but not really , just took half an ativan, hope it helps. Reading all your post helps alot, you ladies are tough cookies . I also put an alarm in my phone to remind me to drink water. Felt so good this last week I have been slacking off but I am back on track . Ok ladies thank you

  • Alibeths
    Alibeths Member Posts: 656
    edited April 2015

    good luck ladies!!!!! I start (4/23). 2 nd time. I went through this 2 years ago. Came back in one stupid auxiliary node. 😡😡😡😡could be worse I hiess but still unresl to me.

  • AnewBeginning
    AnewBeginning Member Posts: 536
    edited April 2015

    KBeee

    Good vibes going your way today with your Herceptin!

    (((hugs)))

  • lovlilynne
    lovlilynne Member Posts: 405
    edited April 2015

    Welcome Renee - you'll finds lots of great information here - stuff that you can't find anywhere else, even your dr. Karen and Marcy will be joining you for 1st round on Friday, and I think Alicia will be on round 2. Are you doing dose dense (every 2 week) chemo?

    I'm going to try to work through this too. I'm not going to shave before - I had my hair cut short. I'll buzz it down when it starts falling out - I've heard just go to #3 on the clippers, but then some people say the "nubs" hurt.

    Lynne

  • AnewBeginning
    AnewBeginning Member Posts: 536
    edited April 2015

    lovlilyne

    My MO put me on ativan and told me "it will make you forget you are nausea"..Hope he's right

    (((hugs)))


  • AnewBeginning
    AnewBeginning Member Posts: 536
    edited April 2015

    Tomorrow will be my first tx....I'm still a wreck because I still dont know what Im in for. I never saw the infusion center and wasnt told much other than what MO told me about tx. I didnt sleep more than 3 hours last nite but tonight I will take ativan and hope that gets me some rest. Reading here I see many of you woman have patient advocates or nurse practioners but I haven't had any of that. I guess they are too busy at my facility.

    Wishing all of you no or little s/e.

    (((hugs)))

  • KBeee
    KBeee Member Posts: 5,109
    edited April 2015

    A new beginning, Since I a not HER2 positive, I do not get Herceptin. I will be getting AC #2 today. I hope all goes well for you today! The only way to the finish line is through the starting gate...it'll be nice to have one behind you.

    Renee, welcome!

    Rasiemeup, ssonia, anewbeginning, Stacy, ...we are headed to the chemo barbtoday for our cocktail. Who else? I will raise my water bottle while there and toast to no side effects for you. I scheduled minethe same time as a friend has her chemo. Way more fun when there is someone else there my age! We chatted and laughed the whole time last time

  • lemonadehk
    lemonadehk Member Posts: 106
    edited April 2015

    Haven't checked in for a while. Hope everyone is doing well and coping with SE smoothly. I came down with a flu/cold last week and had fever (101F) for three days. Good thing is that my fever is gone today and I should be able to get my 2nd AC tomorrow as scheduled.

    Karen, I remember that you are getting your 2nd AC today right? Good luck! And drink lots of fluid!

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