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Chemo starting November 2018

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missouricatlady
missouricatlady Member Posts: 894

This is our November 2018 group so far:

dolceb70 - October 29 - TC

Frmthahart - November 1 - TCHP

EdithMary - November 2 - TC

Jiffs - November 5 - AC + T

Missouri Cat Lady - November 7 - TCHP

MaddieBrie1 - November 8 - AC + T

LizzieBo - November 9

MDoc - November 9 - TCHP

Kym13 - November 9

Casual Book Nerd - November 13 - Taxol, Herceptin

Hazel-Nut - November 14 - AC + T

Chantalbe - November 14 - Gemzar & Carboplatin

Fighting-Mama - November 19

Crafty_Btch - November 20

Susan05 - November 20 - AC

Bookworm14 - November 27 - AC + T

JennieKeaton - November 27 - TC

RunningCats - November 27 - TCHP

Asaka - November 27 - TC

ACJ2468 - November 27 - AC + T

Emilyisme - November 28 - AC + T

HopeBry - November 29 - AC + T

Poised and Pink - November 30 - AC + T

Flower216 - November 30 - AC

Aglaja - November 30

ElsaCris - AC

kry-stal -Herceptin/Perjeta after Adriamycin

Anxiouslady - TC

Newfrony - TCHP

Su-Z-Q - TCHP

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Comments

  • WC3
    WC3 Member Posts: 658
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    Hi MissouriCatLady:

    Are you also getting chemotherapy or just the targeted therapies (herceptin and perjeta)?

    I had taxotere and carboplatin for my chemotherapy, along with herceptin and perjeta. I was supposed to have the infusions every 3 weeks but had the last three every 4 weeks due to low platelets.

    Everyone responds a little differently and things can vary from one cycle to the next. Generally though I would start to feel back to normal towards the end of my infusion cycle.



  • MoonGirlJess
    MoonGirlJess Member Posts: 211
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    MissouirCatLady—so sorry for your diagnosis. I’m HERZ neg so I don’t get Perjeta. Chemotherapy is such a crapshoot. We all handle it so differently. Many handle it well with minor SE. Try not to worry about being sick from chemo. You might fly through it like nothing and be playing music and ringing the Salvation Army bell without a care in the world.

    It’s ok to cry. I cried for months. You are newly diagnosed and it’s overwhelming. I know that depressed feeling all too well. Try to get some fresh air, a walk is always a good. I started walking again and it feels great now to move.

    You can and will get through this.

    J
  • missouricatlady
    missouricatlady Member Posts: 894
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    Thank you WC3. I don't know, I guess I will find out for sure when I see the oncologist. All the surgeon told me was there was an 80% chance my mass would shrink and he could remove it, after Perjeta. I read some of the posts on the Herceptin and/or Perjeta site and thought most of the bad stuff I might experience was diarrhea. I suppose if I am having diarrhea, playing the piano is not an option. I will look at the calendar and see where I am as far as the infusion cycle goes - that will be helpful. I hope to start chemo the first week of November. Thank you very much for your help, I appreciate it, and best wishes to you, I hope you are doing well, thank you.

  • missouricatlady
    missouricatlady Member Posts: 894
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    Moon Girl Jess, thank you. I am going to drink lots of water, and walk every day and I thank you, and the posts I've read so far on how to handle this. I looked at the calendar and should be near the end of the time of an infusion on December 15th, if I start the week of Nov. 5th, having one every 2 weeks. I plan on getting started that first week of November, I hope. Thank you for telling me I am okay to have these feelings - that helps so much. You want to be strong, and be able to face anything, but down deep, I am scared. I have a good support system, and am thankful for that, and for people like you, thank you. Best wishes to you in your journey and thank you for encouraging people (like me). Hugs.

  • Hazel-Nut
    Hazel-Nut Member Posts: 116
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    Hello, I'll be starting chemo in November but not sure exactly when or what I'll be getting. I meet with a MO on the 31st to go over the particulars and hopefully get this ball rolling.

    I'm trying not to let myself develop too many preconceived notions about treatment or how I'll feel. I don't want to automatically assume that I'll be too sick for this or that once chemo starts. I have three kids and three step kids and a full time job that I love and I go to spin class and yoga 6 days a week. The only thing I'm automatically giving up in advance is my second job and the only reason I'm doing that is because the strain of it was getting to be too much while I was perfectly healthy so I can accept my limitations and acknowledge that I need to prioritize where I put my energy. I really wish this wasn't happening right in the middle of the holidays season but I know that a lot of that has to do with the mother in me wanting my kids to have a good Christmas and Thanksgiving without worrying about mommy.

  • missouricatlady
    missouricatlady Member Posts: 894
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    Hazel-Nut, thank you for your words, I will try to do what you are doing, not get any preconceived notions. I'm sorry, sometimes I panic, I guess, and I hate that. I will try not to have any fear. Our drummer came and picked up his drums, and it kind of bothered me, like maybe he thought I was not ever going to play music anymore. I shall do what you suggested, and think positive. Thank you for listening and I hope and wish you the best with your treatment. My surgeon is on vacation this week, so I have to wait until the 5th to get my port. Good luck at your appointment and thank you.

  • missouricatlady
    missouricatlady Member Posts: 894
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    Been reading a little bit on the boards about Perjeta. Things I've read that have helped include L-Glutamine (in water), a strengthening nail coat on fingernails, and getting a shingles vaccine if you're in your 50s. If anyone has any other advice, please share. Thank you so much. Lisa

  • summerrain
    summerrain Member Posts: 10
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    MissouriCatLady and Hazel-Nut

    I am waiting in my MO's office for my (2 years!) check up. You will get to the other side, just be patient with yourself.

    Whether or not you can do the activities mentioned will depend on so many factors, but especially your white blood cell count and your energy.

    Preparing your home environment and allowing friends and family goes a long way toward managing both. Clorox wipes we're my friend for quick periodic swipes on handles (doors, faucets, toilet, car) and any shared electronics (phone, remotes). Cooking some simple meals ahead ( or purchasing a selection of ready-made) is extremely helpful, especially if you are the family cook.

    Family (including children) and friends want to understand what is happening and how they can contribute to "making it better". Give them as much information as you can, and allow them to do things to help. I found that allowing someone to make a meal, run an errand or vacuum helped me AND them feel more control over a situation which is largely out of hands.

  • missouricatlady
    missouricatlady Member Posts: 894
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    SummerRain - thank you! I appreciate your encouragement and advice. I hope your check up goes very well, sending love and prayers for you - 2 years, well done!. Patience is something I will work on, you are right. Best wishes, Lisa

  • missouricatlady
    missouricatlady Member Posts: 894
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    I found this: https://cancer.dartmouth.edu/breast/documents/chemo_relief.pdf

    Chemo Relief: Tips for Patients from Patients

    1.Sleep when you are dragging. Your body needs it.

    2. Don't push and keep going when you are exhausted, but try to take short walks when you can. Keep your metabolism going and processing the chemo through.

    3.A gargle of cold water, a smidge of baking soda, and a shake of salt gets rid of the metallic taste and helps ward off mouth sores. Do it 3 or 4 times a day.

    4.Brush your teeth more often. Film, plaque, coating, nasty-mouth all builds up from chemo.

    5.Start nausea meds when directed. Don't wait until you feel sick—that's too late.

    6.Go to the American Cancer Society's "Look Good, Feel Better" program when offered. It's free, gives you lots of practical advice, gets you out among chemo friends to get advice, and you come home with a booty of makeup! It's nice to get treated for all we are going through!

    7.Get "Tears" eye drops for moisture. Chemo dries out your eyes. Sometimes your eyes water like crazy, but that's the tear ducts overcompensating for the moisture that's supposed to be there.

    8.Fingernails start to grow in ridgy and white-striped. No biggy. Just a heads up. You won't see this until near the end of treatment. It'll clear.

    9.A port may be a pretty good idea. Your arms can get black and blue and veins swollen from all the poking.

    10.Breathe deeply and steady when nausea comes on.

    11.When going through chemo, choose foods that both your brain and your stomach say "yes" to. (I lived on chocolate shakes, tapioca and watermelon that first week after.) Drink nutra-shakes with vitamins—you've seen those TV ads. That way you'll get what you need during the "slim" times.

    12.You can go from diarrhea to constipation. For constipation, over-the-countermedications and Smooth Move Tea (found in health food stores) works well. For diarrhea, over the counter remedies can help too.

    13.Good for you for cutting your hair short before it starts falling out! You'll have it a little longer now, and you'll start to notice more hairs in your brush and down the drain. It'll get thinner and closer to your head. One day you'll say, "It's getting cut." It'll be a shocker to look in the mirror. You WILL get used to it. Get some fuzzy night caps to sleep in for cooler weather and all. Get a supply of hats and scarves or a wig, whatever feels right for you. All hair goes: legs, under arms, pubic, eyebrows thin. If you want, use an eyebrow pencil.

    14.Watch your temperature during that first 10 days after treatment. A temp of 100.5 degrees is the marker for calling the hospital, because infection can spread quickly. Try best to stay out of crowds to avoid germs. Wash hands constantly. Drink lots of water, liquids.

    15. Don't read too much cancer material. It gets overwhelming and depressing. Read what you need to get information, and then pick up fun books and magazines, go for a walk, have a friend over who makes you laugh.

    16.Do things that make you happy. Take lots of walks, even small ones, just toget out. Use lots of sunscreen when outside. Your skin is really sensitive withchemo.

    17.Buy a nice nightgown or bathrobe—something that makes you feel really feminine. It's hard to feel feminine when you're sick and bald and recently scarred and with drains hanging off you.

    18.Accept offers of help: casseroles, drives to the hospital, someone to take the kids, etc. Folks WANT to be of help. Give them practical ideas when someone asks, "What can I do for you?" You'll be able to return the favor later.

    19.Don't hold your tongue. Bark at the insensitive folks who bug you. Speak up when someone says something utterly stupid about you having cancer. This is YOUR time. Draw the curtains, lock the doors and get your nap in. Do what you need for you. Expect some crabbiness.

    20.Hang a "Do Not Disturb" sign on your doorbell when sleeping. (We had neighborhood kids who came around to play. I had to control their knocking and ringing to get some rest. Then I had to call some moms when the kids didn't "get it.")

    21.Don't change the kitty litter if you have a cat, and always wear gloves when gardening. Avoid germs, infection.

    22.Keep needed numbers handy: nurse's station, doctor, social workers, drug store, babysitters, etc. Call someone whenever you have questions or want to talk. You will get through this. Just pace yourself and take all the help that's offered.

  • WC3
    WC3 Member Posts: 658
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    Great tips! I'm just going to offer some alternatives though for those who are interested.

    6. Cut back on spending your energy adhering to social norms, feel better.

    10. Nausea might be from low blood sugar. Have a cane sugar soda on hand to sip.

    13. Cold cap.

    17. Buy something nice for yourself that you have been wanting for a while or that will make your life easier.

    18. Yes.

    19. Definately yes.

    21. Get your cat tested for toxoplasmosis. If your cat doesn't have it, then it will be safer for you to change the kitty litter but best wear an N95 NIOSH masks with a face seal that fits (You will likely have to order these online) and gloves if you have to do it.

  • CasualBookNerd
    CasualBookNerd Member Posts: 11
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    Hi everyone, I was diagnosed in late August, had a lumpectomy a few weeks ago and will be starting chemo on November 13 (taxol). I'm feeling pretty overwhelmed. I'm a planner, so to reduce some of the anxiety and uncertainty, I'm trying to develop some set responses to the "what can I do?" question since this feels like one area I can kinda control. Does anyone have any they'd like to share? For the record I'm married, no kids, working full time (and hopefully will continue to do so).

  • EdithMary
    EdithMary Member Posts: 24
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    Hi, everybody: CatLady and I both started a thread which is now being combined. Here was my original post on the other thread. As for below, I have been cleared from my endodontist for the chemo, since the abscess is almost healed! And thanks to Cat Lady who responded to this originally and reminded me to take this one step at a time! That is great advice!

    EdithMary wrote:

    Hello, everyone. I did not see a group for chemotherapy starting next month, so I decided to start a new topic. I am doing 4 rounds of Cytoxan/Taxotere, starting November 2, if all goes as planned. It may be delayed since I have a healing abscess, left over from a root canal done last week, and they will not start if it is not completely gone. I am extremely nervous, and not entirely sure that I should have chosen the chemo, though my entirely family thinks I have made the right decision. I am only 1A (though right at the top of that, a 2 cm. tumor was removed), but the fairly high grade, other indicators made my oncologist nervous, so she ordered an Oncotype. I came in at 27, which is still intermediate, but getting close to "high risk". She says that chemo gives me a 4-6 percent better survival rate, which doesn't sound like much, but ends up being 90% survival with the newer hormone protocols. I have all kinds of questions--like the percentage of high-risk side-effects, as with liver and heart. Also, though I am 64, I love my longish white-grey hair, and am sad that I will almost probably lose it. Anyway, I want to be around in 20 years when my youngest grandchildren (I have 17, with three new babies this year) are graduating and getting married, and so this gives me the best chance, I guess. Three months of chemo, 5 weeks of radiation, and 5-10 years of hormone therapy feels really daunting! I am a believer in a loving God, and guess that this ordeal will test my faith.

    Anybody else feel like venting?

    Edith Mary

  • EdithMary
    EdithMary Member Posts: 24
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    Lisa (Missouri Cat Lady), I am reading through this thread and having the same problem with knowing what I will be able to do and what not. I am glad to hear that you ring the Salvation Army bell--my husband and I were officers for 7 years, and I have a love for the Army, though we are not part of that community any more. I play oboe in a community band, and have decided to sit out this concert, since my third chemo treatment is two days before it--seems unlikely I will feel well enough to play, and I don't want to cause problems. I am sorry about the concern you have regarding bills--that is always difficult, and worse at a time like this. big hugs! We will both get through this! How long is your chemo regimen?


  • missouricatlady
    missouricatlady Member Posts: 894
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    I am so happy we are together in our group, EdithMary, thank you for reposting so we can be together, I was worrying about that. My surgeon told me every 2 weeks for 3 months will be my chemo with Perjeta. I see the MO Thursday and will see if he is adding anything to that. My step-mom is a nurse, and she has been going with me to my appointments, along with my DH. I'm really glad you are cleared to start treatment, this will be your third treatment? What side effects did you have with the other treatments, if you do not mind my asking?

    Casual Book Nerd, I am a little slow, but I figured out I can go back and look at the Chemo starting, say, October 2018, and kind of read over what others are going through too, and that helped me. I'm sorry we are all in the same club here, one that is very scary at times, for me anyway. I had a thyroid cancer survivor give me a coin about trees bending with strength, and I have another one now, with The Lord is My Shepherd verse on it. It does help me to have those and try to have courage. I get a port put in on Nov. 5th (my surgeon is on vacation this week, or we would be doing it today!) and, hopefully, start next week. The girls that started in October 2018 talked about cooking individual meals and freezing them, so you can have dinner when you don't feel like making it, if that helps any.

    WC3, thank you for adding to that list. I did check into that Look Good, Feel Better program, and the American Cancer Society does offer that class for free. If anyone is interested in that, just look up your local American Cancer Society to find out where it is offered near you. I am glad we are together here, it is comforting for me to be able to talk to you, and I hope I don't talk too much, or have too much anxiety. I try to be calm in from of my co-workers, my husband, my children, but there are times (in my shower), where crying is just something I do. Thank you for listening. Hugs and love to each of you.

  • moderators
    moderators Posts: 8,052
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    Dear CasualBookNerd,

    Welcome to the BCO community. We are sorry to hear about your diagnosis and upcoming chemotherapy but glad that you reached out to our members for support and suggestions. You raise a good question about being prepared with answers to the "What Can I do to help" qustion. Here is a link to information on our main site about how to respond to questions from relatives and friends and a link to a podcast about When a Friend gets sick that might provide some tips. We are sure that others here have ideas but as MissouriCatLady says above it is important to offer practical and concrete ideas to those who want to help. Does anyone have examples of what they have asked for in the way of help?

    The Mods

  • missouricatlady
    missouricatlady Member Posts: 894
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    Here is a good post from the forum "can we have a forum for older people with bc" that has help tips. (I'm not sure, if it is not okay to copy/paste, please let me know and I will remove). I have just figured out Perjeta is "targeted therapy" and not chemotherapy. Duh. And then I read this, which I found helpful:


    Oct 2, 2018 04:19PM ChiSandy wrote:

    Welcome, Robyn, to the sorority nobody wants to pledge. I was a year older than you when diagnosed, but had Stage IA Luminal A--"invasive ductal carcinoma lite"--and so was able to get lumpectomy, skip chemo, proceed to short targeted radiation and then 5 yrs of aromatase inhibitor. (Almost 3 down, 2 yrs to go). But there are many, many ladies here who had "HER2-type" hormone-neg. like you. You have two systemic adjuvant "arrows in your quiver:" chemo & Herceptin/Perjeta (the latter two biologic "targeted therapies" never given w/o having had chemo). Maybe some of our HER2+ sisters here can chime in. Meanwhile, search the Active Topics threads--there are several that may be on-point.

    Best of luck to you. Following are some pointers gleaned from these threads and Dr. Susan Love's Breast Book (the breast cancer "bible"):

    Stay hydrated, rest as you need to, avoid infections as best you can (maybe get a flu shot at least 2 weeks before starting chemo, so that you have that immunity in place from the outset; don't eat raw & undercooked foods like green salads, oysters, sushi, tartare, rare meat, runny eggs, etc. and try to stay away from public transit and crowds). Always carry hand sanitizer & wipes. Ask if you can get the Neulasta On-Pro device the day of chemo so it auto-injects you the next day, letting you avoid having to go back the next day and sit in a waiting room full of possibly infectious patients.

    You can expect little-to-no nausea or vomiting: these days, the anti-emetics and steroids they give you will help a lot. Ask for a prescription for a protective (aka "magic") mouthwash to desensitize your mouth. Stock up on popsicles to suck on during infusions, bring reading matter to help kill time. Friends tell me that LemonHeads candies help mask any odd tastes in your mouth (the chemo suite at my cancer center--where I get my Prolia--has baskets full of them).

    Ask your MO for a prescription for a "cranial prosthesis," so your insurance will cover at least part of the cost for a wig. The American Cancer Society gives out wigs for free. Find out if there's a salon w/in a reasonable distance that specializes in wigs for cancer patients. (Here in Chicago, there's one, Chrysalis Hair, that accepts only cancer patients as clients). Do it now while you still have your hair so they can match color, texture & your desired style. Get some polypropylene fleece (not necessarily knit, which can hold on to sweat or be itchy) caps or beanies to keep your head warm when not wearing a wig--REI has great ones that'll make you look like an outdoor athlete and not a chemo patient.

    You can eat reasonable amounts of foods that contain antioxidants (colorful washed & peeled fruits & cooked veggies) but don't take antioxidant supplements during chemo and for at least a month or two thereafter. The supplements have large concentrated doses. What chemo does is kill rapidly-dividing cells. What antioxidants do is protect all cells. Just as chemo can't tell the difference between cancer cells and rapidly-dividing normal cells (e.g., hair follicles, stomach & mouth linings, bone marrow--which are basically collateral damage) and therefore can't kill only the cancer cells and leave the others alone, antioxidants can't tell the difference either and can't protect only the non-cancer cells. Cell damage is desirable during chemo or radiation: it's the whole point of these treatments.

    If you live in a medical-marijuana state, ask your oncologist to certify that you have a qualifying condition, and apply for an ID card as soon as possible. Some hospital systems won't allow their doctors to certify MMJ applications, so contact your nearest dispensary for a list of doctors who will take you on as a "patient" (but not have to actually treat you) just long enough for their certification to satisfy state regulations. Of course, if you live where recreational marijuana is legal, the "budtender" at the marijuana store can steer you to strains that help with appetite and pain relief. You don't have to smoke or even vape it--tinctures, oils & edibles are available.

    And for pain and anxiety relief, industrial-hemp-derived CBD oil is legal in every state (as long as it has less than 0.3% THC) and if you don't have a nearby shop (vape or health food) that carries it, go online. My MMJ doc recommends Receptra brand--highest quality hemp grown in CO. I use the drops and also the topical balm for my musculoskeletal pain after orthpedic surgery, as well as my post-root canal pain. My MO says it's perfectly safe.

  • Hazel-Nut
    Hazel-Nut Member Posts: 116
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    Thank you for the list Lisa, and the additions WC3 they're very helpful. I didn't think to have my cat tested and was worried about the struggle of getting DH to take care of the litter box. I adopted the cat under extreme protest from him and he swore he would never touch the litter box. I think BC may get him to pitch in but who knows, maybe changing the litter will be one bridge too far for him LOL!

    I downloaded a few new books to my Kindle (post apocalyptic fiction, my guilty pleasure!) and I'm working hard to read something everyday that doesn't have anything to do with cancer. There's so much to research, follow up on, or get completed my calendar is quickly filling up with all sorts of appointments. Which reminds me, gotta schedule my dental cleaning! I feel so guilty for all the time I'm taking off at work and the strain I'm putting on my assistant and other coworkers. They don't mind, it's just me, and my assistant loves the opportunity to shine independently and show she can be trusted to do these higher level tasks. I haven't talked to the kids about my diagnosis yet. My oldest step daughter (17) knows but the rest of the kids are in the dark so far. I'm going to talk to them Friday - give them the weekend to process before returning to school. I have to tell them soon, they need time to adjust before I start chemo and I don't want to just dump this on them right as I'm about to go through all of these physical changes.

  • missouricatlady
    missouricatlady Member Posts: 894
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    ah, yes, the cat litter. My DH is helping, Hazel-Nut, so you just never know!! And he doesn't have to yet! He also had to clean up the puke pile this morning. The day the doctor told me, DH had called our children before I got home from work. I stood in my kitchen and cried, and he hugged me. He isn't big on hugs, but has more now than I ever thought possible. The boys are both grown, and one has a little girl who is 2, but one lives in Oregon, 2000 miles away, and has had girlfriend depression and it is just hard to live there, things are expensive. I understand it is not easy. Some days it is hard to find the easy again. I am thankful they are not little children, like some ladies have. I am 55 years old.

    Good for you for getting something that takes your mind to a different place, something you enjoy! Cancer reading overload is a problem for me too. I was looking at ordering Susan Love's Breast book and I thought, just wait now, not yet. There is a lot of stuff on this site, and I am thankful I have met YOU and our other November chemo ladies. Many hugs. P.S. My Oregon child texted me, how is Dad? I was very grateful for that.

    Hug

  • poisedandpink
    poisedandpink Member Posts: 21
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    Hi All,

    I'm 33 years old and diagnosed with ERPR+ breast cancer. I'll be starting chemo on 11/30 (currently undergoing fertility treatment first for egg freezing). I'll be starting 4 rounds of AC then 4 rounds of T. My tumor is large and close to the skin so I will be doing chemo before surgery.

    I welcome any advice! My Oncologist has not suggested a port and thinks I'll be okay with just IV for treatments. Any experience with this? Should I push for a port? I've read a lot of how to prepare for chemo and from what I can gather claritin, fluids and biotene. I have a wig consultation scheduled before I start. Anything else that might be helpful to know with this treatment regimen?

  • missouricatlady
    missouricatlady Member Posts: 894
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    Hi Poised and Pink and welcome to a club nobody wants to belong in. I wish I knew what to tell you, but someone will come along and offer you some advice. I am doing chemo before surgery too. Sending you a hug and hoping your egg freezing all goes well, is that a hard thing to do - I hope not.

    Hazel-Nut - I know you go see your doctor tomorrow. Good luck. You ladies are in my thoughts and prayers. Hoping you all have a nice Halloween and lots of treats for the kiddos. Poised and Pink, thank you for joining us. Best wishes to everyone. Lisa

  • EdithMary
    EdithMary Member Posts: 24
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    Hi, everyone. Missouri CatLady, Friday is my first chemo of four (four in 12 weeks), and so I am quite nervous. I am hoping that my veins will hold up for 4 infusions, and I don't need to get a port: I swim for relaxation, and take baths, and that would be out of the question for 10 days or so. We will see how it goes.

    Thank you to ChiSandy for all the information, especially the good news on nausea and diarrhea! I really hope this is true for me, and the meds work, as I had a terrible time with both before I was diagnosed with celiac disease, and still struggle routinely with IBS, ever since I had my gallbladder removed. PLease, what is the deal with medical marijuana? What does it help with? I am very reluctant, since I need my brain for work--I teach graduate school.

    Thank for the tips about wigs. One of my meds has hair loss as almost certain, and even eyelash and eyebrow. I am getting my hair cut tomorrow (it is silver, and past my shoulders), and quite emotional about it because my husband loves it, as do my kids. I never thought I'd be the type for long grey hair, but I have really enjoyed growing it since I went grey, and it is a nice color. I had thought maybe I'd only do hats (I hate feeling hot, and have a lot of cute cotton hats that I use already), but perhaps a wig for special occasions might be fun. We have a wandering wig clinic in Pittsburgh that I need to investigate.

    I have a friend who is about a month ahead of me, though she is on other drugs than I will have (I am scheduled for Taxotere and Cytoxan, will be given the steroid Dexamethasone before, during and after chemo day, and have been prescribed Zofran and Compazine for nausea.) She has her worst days as day 3 and 4: I am hoping that I don't have very many "worst days", and also praying for no reaction during treatments.

    Best to you all!

    EdithMary


  • EdithMary
    EdithMary Member Posts: 24
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    EdithMary, not Marie! (though I did live in Quebec for many years!)

  • Hazel-Nut
    Hazel-Nut Member Posts: 116
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    The anxiety leading up to these appointments is the worst. I didn't sleep hardly at all last night because I was too busy worrying about a thousand different things that I have absolutely no control over but if there's one thing my brain loves it's worry and stress.

    Met with the oncologist today who wants to start me on dose dense AC+T in 2 weeks. In the mean time it's a lot of running around getting even more appointments taken care of. IDK if it's the stress or anxiety just building up but I am just plain annoyed by this whole process and in a dang hateful mood over it. Nothing happens at one place and I used to think I lived in a good, centrally located area but now I'm being dragged all over God's green Earth for these appointments and Baltimore/D.C. traffic is the pits. I nearly cried when they told me I would have to go all the way north of Baltimore for my Echo. It took us over an hour to get there last week to meet with the breast surgeon, I don't want to drive all that way just for a 20 min test. I had to push very strongly for a port - my MO doesn't like them but I don't like getting stuck for an IV before I've even had time for the bruises from the last IV to fade. Nurses make the worst patients lol.

    I saw on another thread about prepping for chemo to get a shingles and pneumonia vaccine but I asked about it today and the MO said it wasn't necessary. I think I'll float this question by my PCP. I work in a nursing facility, all sorts of germs come my way.

  • missouricatlady
    missouricatlady Member Posts: 894
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    I'm sorry, EdithMary, I spelled your name wrong. You should be on the top of this board, if I had paid attention, and I'm so sorry about that. I can't even get your name right, good grief.

    Sad I'm sorry about your hair, I guess I will find out tomorrow for sure, but am planning on getting mine cut too; most likely it is going to fall out as well. I've read you can wear a cold cap to try and save it, maybe you might be interested in that. I don't know much about that. It is good to know about the steroids and the anti-nausea medication. I suppose if days 3 and 4 are the worst, I shouldn't schedule mine on a Friday if I want to try and work - good to know that too. Please do let us know how things go, it helps to know what to expect. I don't really know what to expect. I wonder if we need to buy a bunch of toothbrushes and Magic Mouthwash to take care of our teeth. I hope you get to keep swimming. I am getting an echo and a port on Monday and expect to be at the hospital all day. Our hospital, thankfully, is about 30 minutes from my house, in Joplin. It's a really nice hospital since they built it after the tornado. They sent home a can of foam for me to use after I shower, and an instructional video of how to apply it. Sterilization! I have a cold and saw my PCP yesterday and got a flu shot, steroid shot and antibiotics and hope very much it goes away, because I want to start next week.

    Hazel-Nut, good you work in a nursing facility, can ask people questions and I hope you can stay away from the germs. I'm sorry you have to drive so far in a lot of traffic, I wouldn't like that either. My PCP asked me yesterday, how are you handling this, and I was able to speak without crying. I hate it when I cry, so I am hopeful when I see my oncologist tomorrow I am able to maintain control over myself. I don't want anyone thinking I feel sorry for myself, because I don't. It is just scary for me. Thank you for letting me say that here. I am so thankful to have you to talk to, and EdithMary, thank you for helping me get your name right. We are having trick-or-treaters here at work and they are such cute little kids. I hope you all have a nice Halloween and send you big hugs. You are in my prayers. Lisa

  • Newfromny
    Newfromny Member Posts: 108
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    Hazel-nut I know exactly how you feel about all the appointments, so many tests and many were scary, pet scan bone scan. Once treatment starts less running around but having to deal with the SEs is tough, but we’ll all get through this with help from each other. It’s good to have a place to vent

  • missouricatlady
    missouricatlady Member Posts: 894
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    searching a little this morning, about my new word, Perjeta, and found this article. It brought me hope, just thought I would share.


    https://www.curetoday.com/share-your-story/a-secre... I have not read part 1, but there is a link in here, I think. I hope you have a blessed day.

  • MaddieBrie1
    MaddieBrie1 Member Posts: 112
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    I'm scheduled to start 4 rounds e/o week of the A/C followed by T weekly for 12 weeks. 20 weeks total with the neulasta injections for sure during the A/C regimen. Next Thursday is my first infusion and I'm nervous as heck... Had the port put in on Monday on my right under my clavicle around my bra strap. Been seeing a lymph specialist for ROM therapy for left and she worked a little on my right yesterday - so sore sore sore right now. Have a crazy blue/black/green/yellow bruising on my R neck and under the strap where the port is placed (normal). I hadn't expected not to be able to complete an actual yawn though! I guess that's too much stretching on the neck so early in the healing from the surgery. Been having problems sleeping so I pulled the bed wedge back out again last night - I think I slept 4 hrs straight!

    Given the breadth of knowledge and sharing on this site (and provided by the Drs), I feel pretty well prepared for SE's but just nervous to start the whole process. For a very long time we were just waiting for labs, then more labs then waiting for 2nd opinion, then waiting for final pathology and I was ticked off it was taking so long. Now I'm ticked off bc it's moving too fast and I feel a bit out of control. All in all I guess this is pretty normal. One day at a time....

  • missouricatlady
    missouricatlady Member Posts: 894
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    Hi MaddieBrie1 - you've had your surgery already. I can relate to waiting for labs and scans and appointments. And that word you used, control. I told my husband today I don't like to touch my breast because I know there are 2 lumps in there and they are hard and one is getting large and he told me, you don't like not having control. Yes sirree. My surgeon told me I'd get Perjeta for 3 months and, since I have little experience in this stuff, I thought, okay, I can do that. I met with my oncologist today and he told me I'm having TCHP (Taxotere, carboplatin, Herceptin and Perjeta) 6 treatments, one every 3 weeks. That stretches it out and 4 drugs. Great. I've been advised to fill out my FMLA paperwork. Hmmm. Okay. He told me to take Claritin and Aleve before and after each treatment and to use tea tree oil on my fingernails. MaddieBrie, my oncologist gave me a choice if I wanted to have surgery first, but he suggested I have this first, so I guess that is what we will do. Hugs to you. My hair is coming out. I've got to go get that cut in the next week. The American Cancer Society has a nice catalog of wigs and hats my stepmom gave me. One day at a time is right....

  • missouricatlady
    missouricatlady Member Posts: 894
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    and I hope you sleep better tonight. That is good to know, I get my port Monday. Did they put you out to do that? I was wondering about that. Thank you. God bless. I'm going to have a beer.