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

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  • lemonadehk
    lemonadehk Member Posts: 106
    edited April 2015

    Hi Sssonia, I am heading for my 2nd AC too tomorrow. I am nervous too coz it hit me pretty hard last time and I haven't completely recovered from a cold. But look at the bright side, we will be done with half of the AC (I guess you only have 4 ac too, right)? Anyways, stay calm and good luck with it!

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  • lemonadehk
    lemonadehk Member Posts: 106
    edited April 2015

    Littleblueflowers, I love your pics! Your husband and brother are soooo sweet!

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  • ThePrincess
    ThePrincess Member Posts: 424
    edited April 2015

    Headed to AC #1 in 20 minutes! Will think of all the ladies getting treatment today and hoping those that got it yesterday feel well!


    LET'S DO THIS!!!

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  • Alibeths
    Alibeths Member Posts: 656
    edited April 2015

    Good Luck Ladies. : )

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  • gingeel
    gingeel Member Posts: 102
    edited April 2015

    Well, hello, ladies! I'm new to this group, but I've been following you all from Day1. I just didn't want to jump in until it was official. I start my AC/4 on 4/22, then T/4. I'm 36, married with 3 kids (4, 7, 11), triple neg, but luckily had clean margins and no node involvement. Getting my PET, ECHO, and Mediport starting tomorrow.

    I never do self exams. Well, God must have told me to check myself, cause, I found a lump, and after Mammo, Sono, Biopsy, Lumpectomy, SNB.....I'm here!

    I have to say, that this group has given me a lot of information that the Docs don't tell you, and a great deal of comfort. It's so helpful to hear what you are all going through from your first day, and how you are handling it, preparing, etc. I feel lucky to be a part of this group, of course not lucky we have to meet under these circumstances.

    Wishing those that are starting today, best of luck, and for everyone else, min of SE's.

    -Gingee

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

    lemonade, Yes! Heading out for a 3 or 4 mile walk in a few minutes...water bottle in hand!!! I am glad you are feeling better. Hope #2 goes smoothly for you!

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  • Fran2014
    Fran2014 Member Posts: 140
    edited April 2015


    Hi  Ladies,

    By any chance is anyone else getting this combo: Cytoxan, Epirubicin, 5-FU (I must say this one is appropriately named!!) and Herceptin? I don't know if it's the combo of these drugs or that my body is a bit shot after the 3 months of the neo-adjuvant chemo, the BMX and now more chemo but boy am I wiped out! Just feel plain exhausted! I had my treatment last Thursday and I'm still not "bouncing back" all that well.

    To everyone getting treatment today-my best wishes and positive thoughts :)

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  • Alibeths
    Alibeths Member Posts: 656
    edited April 2015

    ging--I am 37 as well....1st diagnosed at 35..I am in Florida now but originally from NJ! Actually got married in LI!!! : )

    I had a recurrance, so i have to do this AGAIN. I cannot even believe it.

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  • Positive_spirit
    Positive_spirit Member Posts: 218
    edited April 2015

    Hi all,

    I wanted to tell you that even in the worst case scenario, the possibilities for good outcomes are great. I went in for my first chemo session for TC (docetaxel/cyclophosphamide) . The scheduler was pretty horrible and I decided that I would book everything through my MO and nurse practitioner instead. My nurse at the infusion center was Kathy...oh so skilled and phenomenal. LOVE the woman.

    cyclophosphamide went in well and I asked for massage or acupuncture which is also offered. I got acupuncture which was fabulous. Then the docetaxel..within 30s, I went into anaphylactic shock. But my nurse stayed with me the whole time and gave me all the right directions. The med team of 20 arrived, but I was warned about that. And within a few minutes of a drug infusion the symptoms subsided. I was back to normal within 15 minutes or so. Scary but in good hands with my medical team. They rechallenged me...this is protocol in some places as patients often react the first time and then manage it fine in the second treatment. I had the same reaction and the infusion was stopped. The second time was milder but indicated that I had a truly hypersensitive reaction to Docetaxel.


    An hour later my regiment was changed to AC and I got the doxorubicin adjuvant therapy. That went fine. My day began at 7am and ended at 11pm. Today I feel fine and managed to walk with ease around the block. I look forward to picking up the kids!!

    I want to let folks know that if you do have as severe a reaction, the team is really equipped to handle it. And I felt fine within a few minutes and was walking around with ease an hour after the reaction.

    I am grateful for today, to have been at MGH in Boston, and that at the end of this chemo will get my body to a better place in dealing with cancer. Thankful for the little things.

    GIngerchi...how did it go?

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  • Positive_spirit
    Positive_spirit Member Posts: 218
    edited April 2015

    GingerChi just read your post! YEAH! So happy for a good infusion experience. I am now on AC - so we will have exactly the same schedule and I am excited about this.

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  • GingerChi
    GingerChi Member Posts: 252
    edited April 2015

    Welcome to you ladies joining us! :)

    I just got back a bit ago from getting my Neulasta shot. If I have bone pain, how long before it would start? I'm feeling better today, not so "drugged" and my headache is much better. Still a little queezy... I dont get hungry but am able to eat. My friend took me to lunch at Longhorn after my shot, I was surprised I ate most of my lunch. I've been eating Popsicles, grapes, bananas and Goldfish for snacks so my stomach doesn't get totally empty.

    Positive Spirit, so glad to hear things worked out for you, your team sounds phenomenal! And to be offered massage and acupuncture...how nice!! :):)

    Kbee, you are wonderwoman, I wish I felt like going for a 3 mile walk. lol Thanks for the advice on taking my Zofran during the night, I did that and its helped. I notice it starts wearing off when it gets close to dose time and I'm glad I got up last night to stay ahead of it. Thats great that you and your friend are able to take treatments at the same time!! Yesterday I was the youngest person in the room, everyone else was much older and there was no conversation.... several of them couldn't take their treatments due to low counts, etc. :/

    Julie, so sorry to hear about your clot, I hope it resolves quickly! I have thought the same thing about going to the ER....if I run a fever during the night I was told to go to ER and I thought ...but what about all the sick people there?? lol

    ksusan, glad yours turned out to be normal healing...loved your ER pic! lol

    LittleBlue...you look great..and the picture of you and your husband is so touching!

    Karen30, I am freaked out over the hair too. I really dread when I start losing it, I think its gonna put me in a funk..... but cant bring myself to shave it yet. I found a wig I like pretty well. I've been so sore from my BMX that styling my hair has been a challenge...I was thinking today it may be a relief when all I have to do is throw my wig on and go! lol

    Kbeee, Rasiemeup, ssonia, ThePrincess, anewbeginning, Stacy: Fight Like a Girl today and kick butt! Sending well wishes to all of you!!



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  • Alibeths
    Alibeths Member Posts: 656
    edited April 2015

    are any ladies using cold caps?

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  • allicat1214
    allicat1214 Member Posts: 84
    edited April 2015

    Hi everyone. I had my first TC last Friday. Did fine over the weekend. Yesterday afternoon, day 4 my fever spiked TO 100.7. Called doc & nurse said to head to ER. At ER TEMP WAS 102! They admitted me last night and are running a lot of tests to determine source of fever.

    Good luck to all getting treatments this week. And remember your thermometer at home may not be so accurate. It's better to call and be seen.

    I'm on my iPad and hands are connected to IV so more later. Just wanted to share my experience to help others

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  • Karen30
    Karen30 Member Posts: 135
    edited April 2015

    I thought about cold caps but my MO was against it and his reasoning made sense- I'm just not willing to take any risks so I decided against it and am having a wig made out of my own hair instead- should be interesting.

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  • GingerChi
    GingerChi Member Posts: 252
    edited April 2015

    Allison, so sorry to hear you're in the hospital!! I hope they get to the bottom of it quickly and your feeling better soon!!

    Karen30, that is so neat that you're having a wig made out of your own hair!!! At least you know it will be the right color!! Are you having it done in the style you wear now?

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  • melb44
    melb44 Member Posts: 130
    edited April 2015

    Alibeths -


    I have been researching cold caps all day. I am having a real hard time with the hair loss idea.

    I think the one risk is that cold caps could cause the chemotherapy medicine from reaching cancer cells that may be in the scalp. I have no lymph node involvement and am ER/PR positive. The only reason I am doing the chemo is based on my mammaprint results that show that it decreases my risk of recurrence by an additional 12%. I am most likely having TC and 6% off people never get there hair back with that. So that is a risk too.

    I am having my MDC meeting tomorrow and I hope to talk about cold caps then. I left a message with my oncologist, nurse navigator and surgeon. None of them seemed all that excited about it but they just mostly said that it was a hassle and that you could get a cold headache. I think I might be willing to deal with that to keep my hair. Not sure yet though.

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  • Vanmama
    Vanmama Member Posts: 103
    edited April 2015

    positive spirit, I had the anaphylactic reaction, also! My MO said he would not rechallenge me due to that. They were very calm and took care of me quickly.

    This week I will try CMF. My doctor assures me I will be fine!

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  • gingeel
    gingeel Member Posts: 102
    edited April 2015

    Alibeths! My fellow 30 something! Whereabouts in LI did you get married? I'm sure I know the place. I also lived in FL while in Middle School...Cape Coral.

    Karen30 I have really long hair, like down to my butt, long, and it's been hard to imagine losing it. I'm going to try to have a wig made from my own hair as well, Hopefully I will have that option.

    Littleblue You have actually got me thinking of just rocking the bald look....you look really hot!

    Allicat Sorry you're in the hospital.

    KBee Hope I feel as good as you next week!

    I thought about doing coldcaps, too, but it's not worth it. Seems like a lot of trouble, and it's too risky. I want my whole body to receive the meds.

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  • gingeel
    gingeel Member Posts: 102
    edited April 2015

    oh, and Alibeths, It sucks that you're having to do this all over again. Cancer sucks!

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  • Crossmom
    Crossmom Member Posts: 1
    edited April 2015

    Hi All!

    Glad to be in touch with others in same situation. Diagnosed on 3/24/15 with stage 3 IDC. Had first treatment on April 8, 2015. TCH for treatments. I have had side effects. Lots of fatigue. Not a lot of nausea, but a dragon has taken up residence in my stomach! No real D but Big C. I have not been able to eat due to reflux. I'm still so weak I can hardly climb stairs in my house. This is upsetting. I have a huge support network and a wonderful hubby! (We think he is having "sympathetic chemo"!!) Just hoping that this fatigue lets up. I am an AWFUL sick person.

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  • Karen30
    Karen30 Member Posts: 135
    edited April 2015

    ugh- well everyone around me have colds and now today i have a blocked/ runny nose- I cannot get sick- need to get this treatment started on Friday- in my crazy head this cancer is spreading while I'm waiting to start so have to get started- why does this type of thing always seem to happen when one least need it!

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  • lovlilynne
    lovlilynne Member Posts: 405
    edited April 2015

    Hi - hope everyone at the "spa" today did ok - Allison, Tina - and those back for a 2nd round - KB and Stacy.

    AnewBeginning, I don't think I welcomed you. For some reason, I thought you had already introduced yourself and you were just popping back in, but I saw that I didn't have you on my cheat sheet: https://docs.google.com/spreadsheets/d/1Goesf6x_13... Unfortunately, we are numbering up to 46 now :-( You asked about an advocate - I had one from my insurance company call me, then they sent me a letter, so I called her today. She was nice, but not really that much help. I asked her if she could find out if my insurance company would pay for me to take my Neulasta shot at home, and she couldn't find out. I also mentioned how I had heard that it caused muscle and bone-pain side effects, and she said - no, most people do not get pain from the shot. At that point, I sort of lost respect for her. Best wishes at the "spa" tomorrow.

    Margarita and lemonadehk, best wishes with round 2 tomorrow. Not positive Margarita is on 2wk schedule.

    Gingee, welcome, I added you to our cheat sheet (see link above).

    Allison, thanks for the tip on the thermometer. I don't remember if it was on my shopping list, but I bought a new one (I thought I might be given one from dr./hospital, but dr. reminded me to have on that works - so I assumed I wasn't going to be given one :-)

    Crossmom, welcome - I've added you to our list (see above). It's sorted by the date of our respective first spa day, but feel free to sort it anyway that helps for you.

    Lorraine, glad to hear you survived your allergic reaction - talk about adding insult to injury. But, boy, that is an example of why I love this DB so much - Laura had an allergic reaction also, so I know it can happen and that it's scary but survivable, etc. I bet they don't tell you anything about that when they "train" you.

    I added another column to the cheat sheet (I know, I'm such a geek!). I wanted to see where we are all from in one place, so I added it where someone has shared it. If you aren't sharing your location here, but want to add it to our sheet, please feel free (or let me know and I will add it).

    Going for my training tomorrow and port placement after. I have a list of questions I want answered at training:

    1. Exactly what meds will I get/have to take before/during/after treatment. This is obviously the most important, and I plan to walk away with written instructions.
    2. Can I get a script for Emla (if not already)?
    3. Should I eat before? What? How much?
    4. Will my insurance cover Neulasta shot or will I have to come back for that?
    5. Is there anything not allowed during treatment (certain foods forbidden? I know they don't allow talking on cell phone).
    6. Do they provide warm blankets?
    7. Do they provide any ice for hands or feet (I don't think I would take advantage, but want to know if it's there).
    8. Do they provide any food or beverages?
    9. How many visitors can I have with me? Where do they sit, and what can they do?
    10. What is the "kitchen" like and what "privileges" do we have (can I store food with name on it?)
    11. What kind of clothing should I wear?
    12. What if I have an allergic reaction? What can I expect?
    13. When do I come back for blood work? When do I see MO?
    That's it for now. I expect that the training will cover most of these if not all, but I just want to make sure I don't forget anything. Can you tell I'm a "need to know" person? Except for what this is actually doing to my body. Then I don't really want to know.
    Lynne


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  • lovlilynne
    lovlilynne Member Posts: 405
    edited April 2015

    Karen - lots of fluids, maybe OJ for the vit C, and rest! You'll be all better by Friday.

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  • Karen30
    Karen30 Member Posts: 135
    edited April 2015

    thanks Lynne - I'm wondering whether to take some cold and flu medicine but right now I'm nervous to take anything!! I'm from Seattle WA- please add it to the list I tried but couldn't on my iPhone.

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  • ThePrincess
    ThePrincess Member Posts: 424
    edited April 2015
    Ginger - hope you're feeling well tonight and have a goodnight's sleep!
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  • ThePrincess
    ThePrincess Member Posts: 424
    edited April 2015

    Thanks Lynne - hope your training goes well!


    Tina

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  • Alibeths
    Alibeths Member Posts: 656
    edited April 2015

    I got marriend at the Crescent BeCh Club!!! You know it?

    I am doing the COLD CAPS starting 23rd. I lost my hair last time and it took 2 years to look normal. : (

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  • Karen30
    Karen30 Member Posts: 135
    edited April 2015

    I've heard of the crescent beach club near port Angeles but have never been there- can't wait to hear how your cold caps work out for you- the whole hair issue makes me nauseas and I haven't even started chemo yet- still at least I will have my own hair and yes in the same style/ length etc so I'm trying to just accept and be grateful for that-

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

    Alibeth, 2nd time around here too. I was always a throw my hair in the ponytail and go girl....I could finally make a tiny ponytail again when diagnosed. Luckily I also am a ball cap girl, and I amassed a really nice collection. Glad you are abe to try cold caps this time.

    Lynne, Great list of questions!

    Karen, I hope the cold goes away. Maybe saline flush (neti pot) will help relieve the congestion...along with all normal cold remedy stuff...chicken soup, OJ, rest.

    Crossmom, welcome! I hope the fatigue eases. It is great to hear you have such a great support system. I do too, and am so very grateful!

    melb, hope you get answers from your MO.

    allicat, So sorry you are in the hospital. Did you get Neulasta? I did not with my first few TC i fusions and landed in the hospital for a neutropenic fever too...was so frustrating. I hope they get that fever down, get your counts up, and get you feeling better and returning home soon.

    Gingerchi, the pain from Neulasta is usually within a day or 2 of it. Not everyone gets it. Keep taking Claritan! Glad you are able to ge some food in. My oldest daughter knows I like yogurt, and also fruit...and also that frozen things are soothing on my always sore throat. So...she spread yogurt on a tray, put a bunch of fruit in there and froze it. I just break pieces off for a snack. Yum!!!!!! Why hadn't I thought of that?! It's great!

    Positive spirit, That reaction must have been very scary! It sounds like your team is really on the ball, and addresses things quickly. I hope they gave you Emend beofre the "A". It also looks like they have great ammenities there for you.

    Fran, I think FEC is commonly used in Europe and sometimes places in Canada. It sounds like a really effective regimen.


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  • gingeel
    gingeel Member Posts: 102
    edited April 2015

    I actually don't know where the Crescent Beach Club is. lol

    I have a question for all you ladies, How do you "break" the news to everyone you see on a daily basis. My kids attend a music school weekly, and I see the teachers, parents, etc. I also pick them up from school. So, I see these ppl everyday.....Do I one day just show up with a headwrap? Or bald? How did you handle this? I know this is something so very trivial....but, I've always been a social, bubbly person, so this is one of many things that is bothering me.

    Thanks! Gingee

    P.S. Thanks for adding me Lynne!

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