Starting Chemo, November 2013 Group

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  • Palameda
    Palameda Member Posts: 259
    edited November 2013


    I'm oncotype 28, mammaprint high risk. I got the mammaprint after getting my "high intermediate" oncotype. I didn't care that it cost a lot of $ and that I'd have to pay for the test myself. I'm glad I did, because now I have no doubt that I need to go the chemo route.

  • Paulette23
    Paulette23 Member Posts: 499
    edited November 2013


    looks like many of yall had dx after me....I've had delays and then only found out last week chemo confirmed and start on wednesday.... Everything took forever but now chemo is SUDDENLY! My head is spinning. ....maybe I should cancel it....I dunno...

  • Paulette23
    Paulette23 Member Posts: 499
    edited November 2013


    Pat....I couldn't get them to do mammoprint....my oncodx was 25....that's why I'm so ......

  • Veronica37
    Veronica37 Member Posts: 71
    edited November 2013


    my onco dx was 30.

  • Paulette23
    Paulette23 Member Posts: 499
    edited November 2013


    my onco dx was 25......which has me in the grey zone.....but tumor size and agressiveness. ....leans toward chemo....but I'm torn....I hate that there was not a definate yes or no....

  • Palameda
    Palameda Member Posts: 259
    edited November 2013


    Paulette, my understanding is that it's the grade 3 thing. That puts us up chemo alley. Even without oncotype, mammaprint, etc., we've got rapidly growing super-zombie cancer cells. Don't panic. Breathe and all that c__p. it's going to be ok. Eventually. It's going to suck for a while, but we will all get through this to the other side.


    I wouldn't worry about not making a million preparations. It's how some of us cope. Some of us need to know we've got every dish washed to reduce our anxiety. We've all got anxiety to spare! Seriously, maybe could you get a dr to call you in an anti-anxiety med? You're going to make yourself sick (ha ha). Many of us are medicated to get through this. I've been on sleeping pills since August. Without them I stay awake thinking bad thoughts.

  • Paulette23
    Paulette23 Member Posts: 499
    edited November 2013


    what is sleep??lol....now I can't even have a beverage to relax.....egads....

  • Yogagal
    Yogagal Member Posts: 18
    edited November 2013


    my first chemo is tomorrow TCHP. We met with a nurse for our "teach" today, and for the most part she didn't tell me anything I didn't learn on these boards - thanks everyone!


    I am an organizer wonk, so I have been busy preparing, buying, cleaning, etc. I guess I want to give myself permission to do nothing after the first round!


    I am one of the first at my infusion center to get Perjeta as part of my treatment (just recently approved by the FDA for early stage treatment), so that piece is a bit of a mystery. But I suspect any SE will roll in to all the others.


    I have lots of hats and scarves - not so worried about the hair loss, unless we are talking about eyebrows and eyelashes. That does freak me out. I got a pixie cut this weekend and I am wondering why I haven't had this cut before! So cute and so easy! Too bad I won't enjoy it too long but it gives everyone a chance to get used to my head.


    Hugs to all!

  • Dellanok
    Dellanok Member Posts: 9
    edited November 2013


    I didn't have an onc score. I am 53 post menopause with a grade 3, high nuclear grade with comedo necrosis. So I guess I am a no brainer. lol


    Paulette, clonazepam aka klonopin works wonders to combat evening anxiety and steroid high. It's fairly mild and doesn't have any morning hangovers. Just chills you out.

  • Paulette23
    Paulette23 Member Posts: 499
    edited November 2013


    I am supposta start tomorrow but am seriously thinking of canceling. No where near or ready prepared house .....is not clean which is driving me nuts .....no form of wigs scarves or anything to start treatment! I have only had less than a week to get ready for this. It seems like everyone else is so prepared in his knowledge. I have none. The doctors were so iffy . Welcome to my life, its been that way my whole medical history. I can only read so much and I'm on overload right now! My husband is like... You're going to start treatment. My whole treatment plan has been a hot mess! I thought by going to Moffitt it would be a clear plan of treatment but they left me hanging. I want to be positive and optimistic ... But being someone in the grey zone...... I just feel like I have been left alone and hanging. I don't know what to eat or not eat, I don't know what to do or not do. Normally I am someone who has all my ducks in a row nm very knowledgeable about medical care. This time I feel like I'm running blind

  • Paulette23
    Paulette23 Member Posts: 499
    edited November 2013


    what have they prescribed for nausea? I am allergic to a few of the medications listed so I only have phenergan which I now read is not very helpful.....

  • ellenkc
    ellenkc Member Posts: 173
    edited November 2013


    Paulette23: Deep breath! The world doesn't stop when you get your infusion -- you will find you have time.


    I am on day 14 of the same CT regimen. I seem to be experiencing what my oncologist's nurse predicted: first week not much happens, second week is the low point, third week you are pretty much back to normal. I have had bone pain rather than nausea, but that didn't appear until about day 4 and was manageable with NSAIDs and then Norco.


    To some of your points:


    -- If you are like me, the house will never be ready to your full expectations. So let go. You will still have the energy to do things around the house after your infusion. And if you don't ... so what!


    -- You still have a couple of weeks before your hair falls out. My hair started to shed on day 12, and is still slowly shedding. I already had a short haircut, and will get it shaved soon -- just not quite ready for that definitive step. You probably have baseball caps and other hats around the house, which will do just fine for now. I ordered a couple of hats from TLC and they arrived in less than a week.


    -- On food, listen to your body as your tastes and appetites change. I was already kind of off food (grief, stress from a tough year), but I find keeping high protein shakes (e.g. Ensure High Protein, 25 gm protein) around helps a lot. I also picked up some of the Naked Juice flavors to get fruits/veggies, along with some prepared gourmet soups (the kind that come in the tetrapaks rather than cans).


    -- On what to do, ditto on listening to your body. If you are tired, take a nap. If you have energy, go ahead with your normal daily life.


    Hope this helps a little.


    Ellen

  • Melrosemelrose
    Melrosemelrose Member Posts: 3,018
    edited November 2013

    Yogagal-  If you are wanting a little more info about Perjeta, here is a link to chemocare.com website (founded by Scott Hamilton, the former Olympic ice skater and cancer survivor)   http://chemocare.com/chemotherapy/drug-info/Perjeta.aspx.  Wishing you the best and hope for an easy time in the chemo lounger aka the Big Girl Chair today.

  • Paulette23
    Paulette23 Member Posts: 499
    edited November 2013


    thanks ellen....sniff....after years of medical pbms not sure if I have enough gusto! lol.....though I know in the li ng run I will be able to give others hope. right now my tank is empty. for years I've given hope to others.....running dry right now...

  • Palameda
    Palameda Member Posts: 259
    edited November 2013


    Good Luck to all of us starting this week! Making plans to go to the movies with husband tonight without having to worry about being in a crowd (although I'll be careful to keep my hands sanitized). I may go to some cheap local hair salon and get a pixie. I know I've time before it starts to fall out, but it seems like a symbolic move. LOL instead of going into San Francisco to my uber chic salon I'll just go to a local walk-in since it doesn't really matter! Anyone else making last hours plans?

  • smrlvr
    smrlvr Member Posts: 422
    edited November 2013


    I found out yesterday I am starting AC on Monday, 11/18. They wanted me to start on Thursday but that would have put my next treatment on thanksgiving day and we would have to schedule around that. With the neulasta the Thursday schedule would also have complicated Christmas so I will stick to Mondays. I am really scared but also looking forward to the next step in getting cancer out of my life.


    I think I am ready, but I am going to use the next few days to clean the house and maybe have my teeth cleaned. I already have a wig, scarves and some comfy hats for around the house. I don't know what to have in the way of food because I don't know what I will want to eat. I need to purchase a few items such as a wig brush and some woo lite to clean the wig. I was told to clean it after every 20 uses. I also need Benadryl, desitin and hand sanitizer. Am I forgetting anything?


    Best of luck to all of you this week. Any suggestions as to now to spend time while getting treatment. I want to take my mind off where I am and put myself in another place. Maybe on that tropical island.

  • Paulette23
    Paulette23 Member Posts: 499
    edited November 2013


    not going to do very much with my hair! Since once it starts to come out I'm going to go bald E! And put lots of glitter! Eventually point when it gets chilly I will get some hair maybe I'll go blonde this time! Tonight I'm going to go to my favorite food place and have a wonderful meal at Carrabba's! I have no clue what to eat tomorrow since after 12 midnight I can't eat because the port placement! They say don't eat your favorite foods for a while so I'm going to indulge tonight though I'm not a big eater! Perhaps I'll have some fried calamari and a yummy salad! Followed by a carrabas special trio chicken with angel hair pasta spicy marinara! Would love to go to my favorite Japanese place to have some sushi tonight as well but I don't think that would be very good! I guess I'll have to wait a few months to enjoy that! Food has never been my favorite thing since I'm recently finding out I have gluten problems as well! Yee ha all kinds of good stuff all at the same time! I don't think we'll be a problem eating my favorite meal tonight since I eat like a bird anyway! Unfortunately I will not be able to enjoy my leftovers! boohoo!

  • Paulette23
    Paulette23 Member Posts: 499
    edited November 2013


    okay everybody I need all of your input! What do I need to start chemo tomorrow! This is from a total newbie who has nothing ready! I don't have time to read 4000 post and figure out what to do!

  • wrenn
    wrenn Member Posts: 2,707
    edited November 2013


    If you do a search on this site there is a huge thread that will give you tons of info. Easier than copying here. :-)

  • inks
    inks Member Posts: 746
    edited November 2013


    If anyone is still thinking about getting a flu shot, it is not too late. I got one yesterday, 2 days before chemo. I was told that while being on chemo I will not get the full benefit of the shot, but that it is still strongly recommended.


    Anyone still shopping remember Biotene mouthwash or alcohol free mouthwash to prevent mouthsores. And some people have mentioned that potatoes still tasted the same while on chemo (baked and mashed).


    I'm here trying to chug my 2 liters of liquids to plump up my veins for tomorrow. Wishing the best to PatAlameda, Paulette and Veronica for tomorrow. Can't wait to here how it went for Yogagal today.

  • Paulette23
    Paulette23 Member Posts: 499
    edited November 2013


    praying for yogagal! hhow many of us tomarrow? how will that affect Christmas for second dose????anyone heard????

  • Paulette23
    Paulette23 Member Posts: 499
    edited November 2013


    told les than 24 hrs no flu shot....so again I'm benind the wheel....bummer. ..

  • Paulette23
    Paulette23 Member Posts: 499
    edited November 2013


    does medicare cover wigs? my pprimary does not..GEHA...DOUBLE BUMMER!

  • MandyJ
    MandyJ Member Posts: 7
    edited November 2013


    Hi all! Started Chemo 11/8 , the same day as having my port put in. Kind of a double whammy and was a very long day (left home at 5am, got home at 8pm). I think my worst side effect, so far, is from the Neulasta. The joints of my toes even hurt. Ibuprofen and Claritin have helped, and I take the pain meds they gave me for the port when it gets really bad. It had me in tears last night, but I know that's exhaustion too. Any other suggestions for this bone pain? How long does this usually last? Thank you all for posting your experiences! It really does help!!

  • lisa137
    lisa137 Member Posts: 569
    edited November 2013


    Well, I think I'm joining this group, so, hi. :)


    Technically I'm scheduled to start chemo on Monday. But I'm switching from one cancer center to another in the midst of all this---got the surgeon in one city and the oncologist in another city, and they've never heard of each other haha. Onc says get port placed ASAP and start chemo on Monday. Surgeon says he feels I'm not healed from my BMX enough for port placement and chemo yet. So I guess I'm in a sort of limbo while this gets hashed out. Certainly should sill be starting chemo before this end of this month though, so, here I am, waiting for someone to call me back and let me know what's happening. It just gets more and more fun with each passing day, doesn't it? :P

  • Melrosemelrose
    Melrosemelrose Member Posts: 3,018
    edited November 2013

    Paulette23-  Take some deep calming breaths.  I know how you feel right now.... that rushed feeling and not feeling that you are ready to tackle your time in chemoland.  It's like the train whistle is blowing and you know you need to be on that train and you feel like you are running and out of breath trying to get on a train that you aren't sure you want to get on.  Hang in there!!!  I am 14 months post chemo ( Cytoxan/Taxotere chemo regimen 6 rounds) so if you have questions, please feel free to private message me.  As for the flu shot, I did not have one before I started chemo.  Just have to make your best effort to avoid large crowds of people and keep your hands clean and avoid the hugs and handshakes that people love to give this time of year.  Go with the elbow bumps instead.  As for the wig situation, you can get a free one through the American Cancer Society's Look Good Feel Good local program as well as attend a free make up seminar where you will get a free bag of make up goodies. I did receive a free wig but opted to not wear it.  Instead, I wore knitted caps, bandanas, baseball caps, hats.... I wore everything else but a wig.  As for receiving chemo close to Xmas, you may want to ask about the holiday schedule at the infusion center.  I received Herceptin throughout the holidays last year.  Yes, there are certain days that the infusion centers traditionally close like Xmas Day and New Year's Day but the infusion centers will do their best to get you on the schedule for the week of Xmas.  I always scheduled my next infusion on the day that I received a chemo round. 

    As for  tomorrow , be prepared for the chemo round to last longer than the other ones.  It's the first one and so the chemo may be infused over a little longer period so that the infusion staff can monitor you.   If you are wondering what to take, take some snacks, a jacket and a blanket (if the infusion center doesn't have warmed blankets for the patients) and patience.  If you feel like you need something for your anxiety, ask.  It's okay to ask.  I had Ativan to help keep me calm that was given along with my pre-chemo IV drugs.  I had Ativan only during my chemo rounds and did not have any prescriptions for Ativan.  I also brought a insulated mug so I could drink icy cold water during my Cytoxan infusion in an effort to help keep the mouth/tongue sores to a minimum.  I also iced my fingernails and toe nails during the Taxotere infusion.  I iced for a total of 1 1/2 hours--- 15 minutes before the Taxotere started, 1 hour during the Taxotere infusion and 15 minutes after the Taxotere was completed.  My husband went with me to every chemo infusion and would get lunch for us at the hospital.  Yes, you can eat and drink while you are having your infusions.  If you need to use the restroom, just let the infusion nurse know so she can unplug your IV pole from the electric socket and you and your IV pole can head on to use the restroom.  I do hope you will have a significant other or buddy with you at your infusions.  It will help to have that emotional support with you.

    Here is the link to the BCO Chemo Threads for Newbies  which you will find very helpful.... http://community.breastcancer.org/forum/69/topic/785189?page=1#idx_1

    Wishing you the best tomorrow.

  • Yogagal
    Yogagal Member Posts: 18
    edited November 2013


    I am sitting in the Big Girl Chair now enjoying an uneventful first chemo treatment. Ok, maybe enjoying isn't the right word. I was so worried about the port, but the numbing creme did the trick and it is so much easier than an IV!


    Paulette23 I understand not wanting to search thru a bunch of threads, but do search for 'chemo tips' and you will find lots of tips. For me the key was to get the numbing creme for the port (I used it this morning before coming to the infusion center), hydrating day before and morning of. bring snacks, books, magazines, iPad, etc and a buddy. I also brought a warm scarf to drape around my shoulders, it is chilly here. Good luck tomorrow!


    My schedule has me getting chemo Christmas Eve and Nuelesta shot Christmas morning. Ho Ho Ho

  • audra67
    audra67 Member Posts: 521
    edited November 2013


    Denise and Wrenn-


    I had bilat. mastectomy with seroma and on antibiotics for 5 weeks, then exchanged to implants so wouldn't get infected...had that 2 weeks ago and still have my stitches in and a wound on skin barely closed and they are going for it...my plastic surgeon says all will heal and be ok just might take a little longer with the chemo...now have sinus infection last couple of weeks so worried they won't let me start Thursday either...dreading it but wanting it too...weird...


    LOVE the wigs ~ they look awesome in photos, can't wait to get mine, still haven't and ordered online, so wondering if it will be stiff or scratchy.


    Going to chemo class tomorrow ! Curious and lots of questions.


    LOVE veronica 37 letter! Terribly true isn't it!??


    Inks - love your humor!

  • Veronica37
    Veronica37 Member Posts: 71
    edited November 2013


    Well started getting prepared for chemo the whole day, cleaning , drinking plenty fluids, having a fill at PS, apt with surgeon to check port, had my chemo class and got up enough guts to go get a pixie cut (love it). While in the hairdresser chai my onco called and says we have to post pone chemo until next Tues due to insurance problems, OMG. I was ready... got so much done today with the dexamethasone,lol. Oh well, guess I will be even more prepared next week. Sched now for next Tues and Neulasta on Wed. Good luck to all of you tomorrow!

  • QuirkyGirl
    QuirkyGirl Member Posts: 383
    edited November 2013


    Onco score of 21 and chemo should cut my distant recurrence rate in half. Weird day at my dermatologist follow up for wound closure. I'm now "Bra-less for Breast Cancer" (now sporting a camisole) as she wants to keep anything from irritating the newly forming skin. Very strange as I've spent the last 13 weeks in a bra 24/7 to help things heal. Hugged her when she reassured me I'd be ready for chemo next Tuesday. Blood work Friday and steriods starting Monday. There are days I still can't believe I have breast cancer.

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