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Starting Chemotherapy March 2018

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Hi Ladies.  First post and I've already created a new topic - been learning a tremendous amount from this site since the day after my diagnosis.  I have looked at so many sites and resources and have to say this community is so inspiring and supportive - thank you all!  

4 weeks post-mastectomy and reconstruction today, and I am starting chemo on March 1st. Been reading the topics for January and February starters, and so much has been helpful.  Just wanted to open this up for discussion. Scared and apprehensive, but also eager to get "phase 2" underway.  

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  • bear741
    bear741 Member Posts: 4
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    Hi there, I'm also starting in March. But it will be phase 1 for me! So ready to get going... it's hard feeling like it's just continuing to grow as I wait!

  • paisleypie
    paisleypie Member Posts: 12
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    Hi, thanks for starting this thread! I'm starting chemo on 3/2, less than a week away. It still doesn't quite feel real since I just got diagnosed on 2/19, but browsing through this forum has been really helpful.

    Next week I'm supposed to have an echo to test my heart, a bone scan, CT scan, and chemo lessons (whatever that means) before having a port placed on Wednesday (along with sentinel node biopsy) and then chemo starts Friday. I find myself staying up late reading about cancer treatments and then needing a nap the next day - probably not sustainable.

    Can't wait to hear more from folks who are going to be starting next month! Sorry you're here, but glad you're here.

    -paisley

  • Coconutz
    Coconutz Member Posts: 1
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    I just learned that because of my oncotype dx (scored 35) I will be having chemo following my mastectomy (left breast invasive lobular carcinoma, ER+ PR+ HER2-) four weeks ago. After surgery, was told the two sentinel nodes removed were clear, but the pathology report shows one positive for micro metastasis. I had a lumpectomy (noninvasive ductal carcinoma) in same breast 18 years ago followed by 6 mo chemo and 7 weeks radiation, and never lost my hair. Now this round of chemo is suppose to be potent, two treatments every other week for 2 months followed by weekly treatments for 3 months. I was told I will lose my hair within the first few weeks. Getting ready for chemo: I am scheduled for echo cardiogram, chemo teaching, chemo class, surgeon consult for port all next week while waiting for authorization for chemo drugs. Weird, but I am more concerned about looking good than about the side effects of chemo right now. Trying to positive about what is happening to me, so directing my focus in another direction; I am trying to be proactive-- looking for wigs, caps, hats, etc and scheduled my hairdresser for next week to cut my hair short. My friends want to buy me scarves and wigs. I live on an island so I am looking online for resources. Until I logged into this site, I wasn't worried about getting cancer again, for a third time, and realize those chances are real now. I like this community forum and have gained strength and wisdom reading the different threads. Thank you all for sharing. I know I will be asking questions about treatment and will be feeling the effects very soon. We are all in this together--so I thank you all in advance for sharing and hope I can add support to you.


  • westcoastgal
    westcoastgal Member Posts: 11
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    Hi, all! I had surgery 2/7, and am starting chemo this next Tuesday, 2/27. My port was put in during the partial mastectomy. Because I had 11/12 lymph nodes positive and a large tumor, I also had bone scan, CT, echo this week, and all were clear, so I'm Stage IIIC still - whew! AC every 2 weeks 4x for 2 months, leaving chemo with a Neulastra device on my arm. Then 12 weeks of Taxol, every week 12x for 3 months. Radiation after. Sounds similar to what some of you are doing

  • westcoastgal
    westcoastgal Member Posts: 11
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    Coconutz, I've also been looking at hair coverings, wigs, etc. I had my hair cut and sent it to ChemoDiva.com to make a halo wig (half wig with open fabric cap on top the hair is attached to ) to wear under hats and scarves, made out of my own hair. I'll let you know how that works

  • Wildcolonialgirl
    Wildcolonialgirl Member Posts: 119
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    Ladies, my chemo regime will be TC - Taxotere and Cytoxan, once every 3 weeks for 4 weeks.  It was one of 2 possible regimes suggested by my onco, and for various family history and my own health reasons, opted for TC instead of AC-T.  I am following the chemo with rads (visit radiation onco tomorrow so I will know more on that) and then hormonal therapy (tamox first and then an AI a few years after that).  Been researching the potential side effects, advices, etc. - these forums have so much great advice. 

    bear741, completely agree, waiting at every step is the hardest!  Hang in there - we are all in this together.

    paisleypie - will be thinking about you this week!! One piece of great advice I got from a dear friend (also IIB - and who was diagnosed 18 years ago this month and just had another clean visit!) was to look at every step, test, visit and treatment as a move forward in the battle.  I have been trying to do that and find that it helps. 

    coconutz I hear you - don't start until the 1st and I already ordered wigs, some newsboy caps with a halo and not scarves, but turbans.  if you Google turbans you can find some great ones - got a really inexpensive set with lots of colors off Amazon.  My mom gave me the idea - and was showing me how to "dress" them up with cute pins (like an old movie star).  They are also super soft, washable and very light, which I imagine would be nice for hot weather.  

    WestCoastGal so glad you got clear scans! Will be thinking of you on Tuesday.  So neat you were able to have your own hair made into a halo.

    Ladies, I am grateful for compatriots in the journey - when I started the thread I was torn hoping no one would need to join me, but now hope that together we will help bring each other strength.  


  • ordinarybeauty
    ordinarybeauty Member Posts: 15
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    Thanks for starting this topic.

    I know I will rely on the help and support we share here. I'm not exactly sure when in March my chemo will start (dose dense AC*4+T*4) as we are waiting for some infections in my incisions to clear. I should get my port next week. For now, I am focusing on wigs and the rest of my life. I have an appointment to have my hair made into a wig (so I don't have to explain to my clients that I have cancer) and friends took me wig shopping and gifted me 3 wigs (blond, brunette and redhead)!

    Not sure how to manage my fear, other than by distraction......................

  • scrafgal
    scrafgal Member Posts: 412
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    Ladies,

    I was perusing the boards and saw this topic. I was a member of the March 2017 chemo group and found it so helpful. So, I am a year out from where you are and doing well!

    I wish the best for all of you!

  • paisleypie
    paisleypie Member Posts: 12
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    Scrafgal, so great to have someone from the other side! Glad you are doing well :)

    Coconutz, sounds like you and I are due for a lot of the same tests and similar regimen. I spent a big chunk of my weekend looking at hats and scarves. I have always had long hair and it was sobering when the oncologist said "nope, you're definitely losing it all." I feel like an imposter shopping for cancer patient headwear though - with no surgery yet, and no real symptoms, it doesn't feel like I "count" yet.

    Hey WestCoastGal, glad to hear your scans were all clear! I am so interested in this chemodiva.com own-hair thing - I've been looking at it today and pondering. It seems like there's a pretty short window before I won't be able to do it at all, so I'm trying to think fast.

    Wildcolonialgirl, thanks so much for your kind words! I have been singing a Walk the Moon song a lot - "One Foot in Front of the Other!" We'll just all keep taking the next step in this process.

    Ordinarybeauty, distraction is a very valuable thing!! Keep hanging in there :) Port next week for me as well!

    So, question for everyone! What are you packing in your chemo bag? I've read through some of the lists and I'm still waffling on every little decision I have to make.

    -paisley

  • DagnyT
    DagnyT Member Posts: 18
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    Hi all,

    I go in for my port tomorrow and then first round of chemo two days later on March 1st. I'm doing CMF....which is an older kind of chemo and I haven't found many people doing this treatment. I'll be every two weeks for 8 cycles, so around 4.5 months if all goes well. I'll be doing neulasta because of the every two week schedule. This was all a surprise to me because of a higher than expected oncotype score (29). Everyone had already said that my cancer was so small, caught very early and clear lymph nodes....so I would just be off to rads after surgery. I'm still adjusting to this new plan, and it's really hard.

    Let's do this together.

    Dagny

  • luxiii
    luxiii Member Posts: 2
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    I'm so glad you posted this link! Using my own hair is just what I need to lower my anxiety.

  • moderators
    moderators Posts: 8,055
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    Welcome, Luxiii! We're glad you're finding the boards helpful so far! We are a supportive community, here with you every step of the way.

    The Mods

  • westcoastgal
    westcoastgal Member Posts: 11
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    Glad to help, luxiii! When I get my wig, I'll report back when I receive it.

    Paisleypie, yes, the window is short, since they don't recommend cutting it after chemo starts, since the hair may change. I figured I didn't have a lot to lose, since it's all falling out anyway soon.

    Wildcolonialgirl, thanks so much for staring this thread! I'm so happy to be able to share this experience with others going through the same thing.

    What am I packing in my chemo bag?

    Wireless noise canceling headphones - my husband is just finishing his chemo (I was diagnosed three weeks after he started treatment, so timing is not the best) so I've had a sneak peak. At least here, the treatment room is loud. Hard of hearing folks talking loudly to friends or on their phones, beeping machines, just so many staff and patients in one large open space, even if they talk quietly, it's a dull roar. So I'm planning to listen to music or audiobooks.

    • Cancer audiotapes by Nancy Hopps - she has guided meditations for surgery, chemo and radiation.
    • Chemo mix tape from my friends - I asked my friends to each give me one song that they love, and I have a 90 song playlist to listen to that will give me strength and make me feel loved and supported!


    Travel pillow and eyeshades - the pre-chemo drugs make most folks sleepy, so I'm putting my neck pillow on, pulling down my eyeshades and dozing.

    Fleece blanket and fleece hat - again, making a warm cocoon of comfort! And infusion rooms can be chilly.

    Shoes that slip off - I plan to sit curled up in comfy socks, but if I need to go to the bathroom, I can unplug the IV so it runs on battery and slip on my shoes and go.

    Snacks - My husband likes apples with lemon squeezed on them, peanut butter crackers and fig newtons, so I'll probably try that to start.

    Water bottle - 2 liters a day to keep dehydration from happening, so I have my brita water bottle to filter it

    Dry mouth spray and lozenges, mints - dry mouth can hit in the middle, so I want to be prepared. Plus I hear when the port is flushed, there can be a bad taste in the mouth, so I'm packing mints.

    My favorite lemon and ginger tea - they have hot water, but I want to make sure they have tea I like - so I'm just bringing it myself

    Meditation coloring books and color pencils

    Packing now for chemo tomorrow mornin! What are you all bringing?







  • Gigilala
    Gigilala Member Posts: 57
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    Hi ladies

    I started chemo march 2017 a year ago

    I just want to give u all my support be strong ladies

    I was in your place last year I know how do you feel

    The chemo is very hard but it' s doable if I did it u can do it

  • Wildcolonialgirl
    Wildcolonialgirl Member Posts: 119
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    I just started to think about my chemo bag but one item I am definitely taking is a coloring book my elderly aunt just gave me called "maybe swearing will help."  It's filled with puns (and yes, some curses!) but I am hoping that they may help me laugh a bit during the process.  She's got a wicked sense of humor and the gift was neat (she also sent me a Brobe when i was complaining about my drains after surgery).  

    Aside from that, lots of water, some crackers and nuts for snacks, lip balm and a book.  Warm sleep socks, and some Halls citrus drops.  

    Got a hat and halo order from headcovers yesterday - one is a cool 20's style cloche.  I may wear that - I'll probably be known as the weird hat lady...

    Wishing sunshine to all!


  • ordinarybeauty
    ordinarybeauty Member Posts: 15
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    If you are in the Seattle area, there is a company that will make a full wig of your own hair...http://www.antonshair.com. I'm meeting with them tomorrow. Spendy but for me, worth it.

  • anchored
    anchored Member Posts: 1
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    Hi ladies. I'm starting chemo in a few weeks, and I must admit that I'm scared. This group (and the other discussion boards) have helped encourage me as I look ahead. Losing my hair isn't even on my radar right now. It's all the other side effects that I'm concerned about. Anyway, thank you for sharing your experiences and your advice. It's nice to have some other women going through the same things to walk along side me on this journey. Blessings!

  • Hobbyhorse
    Hobbyhorse Member Posts: 7
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    Hello ladies...I will be starting chemo on March 6th ( which also happens to be my 50th Birthday)

    Hope everything will go well, I won't have too many SE and will hopefully be able to continue working.

    Wishing all of you well on our Journey together.

  • westcoastgal
    westcoastgal Member Posts: 11
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    My first chemo was Tuesday, and so far, so good. I had Doxorubicin (Adriamycin) and Cyclophosphamide (Cytoxan). The Adriamycin has the nickname "red devil" because of the red colored liquid and the side effects. It's so toxic it has to be directly administered by injection into the vein from the cylinder, and every 10 ccs they pull back to see blood before they keep going, to make sure they're still in a vein. If it has contact with tissue it can kill it, so that's a little scary, but the staff is very skilled, so all went smoothly.

    Side note, if you get this you will pee red or pink after. No, you're not bleeding, it's the drug!

    What helped with the side effects, I think, was the two liters of water I've been drinking daily. Later that evening, I felt a little queasy, but I just started up with the anti-nausea meds right away, and have been fine since.

    Pegfilgrastim (Neulestra onpro) was placed as a device to deliver a subcutaneous injection 27 hours after chemo without going back to the clinic a day later to get an injection. It's meant to pump up the white blood cells that the Adriamycin will be pummeling. I chose stomach placement instead of the back of the arm, because it seemed much less in the way.

    When it's put on, there's a beep when it's activated, and then within 20 seconds there's a feeling like a rubber band snapping when the needle pops in. I found it more surprising than painful, and I did jump. The next day, you can shower with it on. It blinks a green light to show it's in place and ready, and you're supposed to check it periodically to make sure it's still blinking green and not red. It beeps when it starts dispensing the medicine, then beeps about an hour later when it's done. You check that.the monitor says empty now instead of full. Then you can take it off and put it in the medical sharps container to dispose of later.

    I was told to take Claritin when I got home to counteract the bone and muscle pain Neulestra can cause, and I haven't felt any yet, so I hope that's working.

    Pretty uneventful so far! I'm glad I have the port, it makes the whole process go much easier. I did make sure to rest a lot. Hope all goes well for the rest of you for your first chemo

  • westcoastgal
    westcoastgal Member Posts: 11
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    By the way, if you haven't heard of them, check out Chemo Angels!

    http://chemoangels.wixsite.com/chemo-angels-1

    They match you with 2-3 volunteers who send cards, little gifts, and notes of support. It's not a pen pal situation; they don't expect a response. I'm excited to see what I get!


  • paisleypie
    paisleypie Member Posts: 12
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    Hello to a few new folks since I was last on! Hello luxii, hello and welcome! Hi and welcome Anchored! Glad you are here with us. Hello Hobbyhorse and happy upcoming birthday! I hope you treat yourself to something nice :)

    Dagny, I hope your port placement went okay! Mine went in yesterday. Feeling a bit sore (they did a SNB too). I'm sorry that you had to adjust to a change in treatment plan.... I'm trying to remember to stay flexible, but it's hard. I like to have some certainty.

    Wildcolonialgirl, sounds like your aunt is a kick! Maybe you will share a picture of your hat for inspiration for us :)

    WestCoastGal, thanks for the tips on prepping for chemo! I got a tour of the room yesterday and it was bustling. Headphones are a must for me. It sounds like I am getting the same stuff as you - except they told me Benadryl instead of Claritin. Although maybe that was for something else. I think I will do stomach placement for the neulastra pump too.

    Keep us posted on how you are feeling!

    I'm going in today for more imaging - an echo in advance of the AC chemo, and a bone scan. Then tomorrow morning my first chemo infusion. After thinking about it, I probably don't need a huge bag of stuff - snacks, water, lip balm, queasy drops, headphones, phone, book, Kindle (for reading or netflix).

    Love to all,
    paisley

  • ordinarybeauty
    ordinarybeauty Member Posts: 15
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    I've been cleared for chemo (the infections from my reconstruction are gone). Port on 3/9 and first chemo on 3/16. Scheduling it has been quite challenging as the place is so busy, they only have odd times available for the first 3 sessions. I start at either 7AM or 5PM and am there for another 4-5 hours what with the with the blood draw, the wait for the blood work results and then the 3 hours for the infusion. I was planning on asking friends to drive me but that's a lot of time to ask of a friend. And, I hate to have my hubby take the time from work. So it's either hubby or uber!

    Paisley: Whats an SNB?

    Also, for anyone doing neulastra, why do it with a pump, why not have it done while you're getting chemo?

  • Wildcolonialgirl
    Wildcolonialgirl Member Posts: 119
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    Hi ladies, and welcome to all who recently joined!

    Ordinary Beauty - glad the infections are cleared up!

    WestCoastGal - great to hear you are doing well!  

    I had my first infusion today - TC - Cytoxan first for about an hour and then the Taxotere.  Nurse stayed during the Taxotere to watch for any reactions, went pretty well.  I had a little of the "taxotears" water eyes for a little during the infusion and a little after but then it stopped.  I snacked, drank tons of water and cranberry juice, read a little and did one page in my naughty coloring book.  

    I think the Neulasta is usually given 24 hours after the treatment, so at my center they use the pump or you have to go back and have the shot (unless you give it to yourself, I wasn't having much of that - and I'm pretty brave about needles overall).  I am close to the center so opting for the shot done there - although we're having a nor'easter on the East Coast tomorrow so that won't be fun.  Sad I started Claritin this morning, they recommended starting it a day in advance of the Neulasta.  

    Paisleypie - hope tomorrow goes so well for you!!  Sending you positive vibes!!

    Ladies, best to all - 

    Wildcolonialgirl


  • tld2017
    tld2017 Member Posts: 147
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    Hi Ladies! I start chemo March 19th! Scared to death honestly but so so so happy that I found you all that will be going through this at the same time as me - we can vent to each other! I know no one with cancer and feel guilty talking to my sweet family about it - they are already so worried about me. I will be doing the Penguin cold caps, cold mitts on my hands, and cold socks on my feet, which is causing me some stress because I know it will be uncomfortable. But....we can do this! My emotions have been all over the place, sometimes feeling afraid, sometimes feeling incredibly brave. I guess that is all normal. I hope that we can get to know each other over these next weeks and months and I am wishing each one of you much love and good outcomes from the treatment!


  • helenlouise
    helenlouise Member Posts: 363
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    Hi all,

    I started FEC-D regime on Monday. The visit at the centre went quickly although I was there almost 5 hours. I was fortunate to have my husband and son with me for most of the time. It was another big day of new information and things to learn.

    It has been a challenging few days but I feel better today than I have. Nausea seems to have passed although I still feel heady, achy and tired. I have also noticed in some conversations I can get lost for words and a tad anxious at times.

    The regime is 3 doses of FEC and 3 doses of D, each dose three weeks apart. All being well and going to plan, chemo will be done in 18 weeks. Then surgery, then radiation.

    I have been told week 1 of my chemo cycle is cytotoxic; careful with bodily fluids, week 2 is low time; careful of infection and week 3 is recovery; should be feeling better.

    To get ready for losing my hair I have had my hair cut short. The hair loss is confronting but in the scheme of things... I started looking at wigs yesterday. I wish I had know about halo!

    It's great to be able to read your posts and share my thoughts and feelings.

    Thanks and good luck to you all.

  • terrifiedBUTstillHOPEFUL
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    Hello everyone,

    I’m scheduled for my port placement on 3/20 and first round of chemo on 3/27... I am so scared! They told me I will just be “groggy” for the port placement and thinking about it freaks me out! I start to get super emotional when the sun goes down because all I can think about is that I’m another day closer to those appointments 😣

    How did your port placement procedure go? Advice

  • paisleypie
    paisleypie Member Posts: 12
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    ordinarybear - Yikes on the scheduling. Hope it works out okay! SNB is sentinel node biopsy. They injected me with some radioactive stuff right next to the tumor, and watched which lymph nodes got it first. They took those out (3 of them) and tested them for cancer (negative - yay!).

    The Neulasta shot is supposed to be given a day or two after chemo - if you get the pump at the time of your chemo, it sits idle for about a day and then automatically releases the medicine. That way you don't have to go back in. My nurse said it was the norm here, so I said okay.

    Wildcolonialgirl - thank you for the well wishes! :)

    tld2017 welcome!! I know what you mean about emotions all over the place. When it gets too overwhelming I just retreat a little bit, follow whatever the doctor or tech says to do, and trust in the process.

    helenlouise, glad to hear that you are starting to feel better. I'm going to get my hair cut short this weekend. And hello to another triple-neg like me!

    Hello to terrifiedBUTstillHOPEFUL! I think we all feel a mix of those two feelings! I like the hopeful part better. When my port was placed, they put me under (general anesthesia) because I was having two procedures done. My surgeon did talk to me about the other option - sounds like the "groggy" scenario they described to you. She reassured me that it is a very common way to do a port placement, and you won't remember much about it afterwards. I know I read at least one story from someone about how they opted for that type of anesthesia and were fine.

    The whole area around my port is still very tender to touch, a day after it was put in. There is a little bump in my skin, so you can see where it is if you know what you are looking for. I've been trying to avoid reaching up for things, or putting my arm behind me or over my head. It's sore in the way a sore muscle is sore, but concentrated all in one spot.

    love,
    paisley

  • TheSnowQueen
    TheSnowQueen Member Posts: 4
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    Hi, glad I found this post!

    I start 1st of 4 TC rounds, tomorrow. They told me to plan on being there 3 hours. Scared and nervous, but ready :)

    Anyone else not feeling like wearing or looking for a wig? I'm thinking I will use scarves, but don't want to later say “I should've gotten one"....

    Love & hugs to all ♥️

  • helenlouise
    helenlouise Member Posts: 363
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    Snow queen I would love to go scarves or even plain bald but I just don't think I will have the head for it. I have tried some turbuns but I wear glasses and I don't feel comfortable. I think it will be different when I have actually lost my hair. I have been able to borrow / rent a wig from the local wig library (part of the brave hearts charity) just in case... I am looking at other options next week.

    Thanks for the welcome Paisley.

    Good luck everyone.
  • terrifiedBUTstillHOPEFUL
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    paisleypie Hello, you are lucky you had your done during surgery. I asked if that could be done but they told me they didn’t want to complicate my healing process from my BMX and lymph node dissection. I guess I’m freaking out at the fact that I won’t be still during the procedure cause I’ll be too freaked out. My anxiety gets the best of me. I still have my drains in and I really don’t want to get the port in when I still have my drains... but seems like they’re pushing me to start chemo and it’s really frustrating