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Chemo starting October 2017

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  • scaligirl
    scaligirl Member Posts: 37
    edited October 2017

    simbobby omg I totally know that MRI pain. I had 2 myself last month. What a terrible contraption. You know a man created that Ha! Glad you're just done with it.

    Joyseeker I hope your ankle mends fast! What a drag that must be.

    Has anyone used or been on WIGSIS.COM for wigs? I've been looking all over the place (I think I've been on 15 different sites) and that site seems to have a huge selection. I still haven't been able to bring myself to order one. Yet. Maybe this week.

    Hope everyone is having a good weekend 💟

  • Joyseeker
    Joyseeker Member Posts: 247
    edited October 2017

    I found this one. Sorry. It's a screen shot. It's 460.00 Canadian.

    image

  • Jennifer522
    Jennifer522 Member Posts: 194
    edited October 2017

    Agatha--

    I was prescribed promethazine/phenergan and lorazepam/Ativan for nausea. I know Ativan is suppose to help with sleep and anxiety too. I also got dexamethasone/decadron for 2-4 days post chemo.

    Hard to keep all these drugs straight!

  • Neanie44
    Neanie44 Member Posts: 8
    edited October 2017

    AgathaNYC,

    When I was first diagnosed, I thought this would break me, but as time has gone on - I have realized that it has made me stronger. You will be braver than you think. From the time I was diagnosed to now, it has certainly been a rollercoster of surgeries, consultations and it is only now that I feel my life has some "normalcy" to it. Allow yourself time to absorb. I have 3 remaining cycles left of TC and Neulasta. My first treatment was 9/22 and that day and next were very well. By Sunday, I felt tired, although pushed myself to work until that Thursday until what I thought I was a sinus infection was more likely to be the flu. The next few days were horrible with fever, aches and no energy. However, by the following Sunday, I awoke and felt wonderful and have felt great since then. Oddly enough there were a couple of days for just a minute that I felt so healed that I almost forgot what my body had gone through since July/August. I would venture to say that most of my pain came from the Neulasta, which gave me the bone aches and then of course the fever. I have a wonderful team that gave me plenty of nausea meds - which you need - so please do not hesitate to ask. I missed the training, but I googled the facility and lots of youtube videos that helped me feel more comfortable with the process. I was also fortunate enough to have my husband and sister there with me for support for the 1st treatment, also very important. I normally wear very short hair and it has started to thin just a few days ago. What I have noticed is that if falls when it is stressed and where it is longer, so maybe cutting shorter gradually will help, which is what I plan to do. Also, speak with the hospital billing department, because I had someone reach out to me regarding a discount plan for Neulasta that can help with the cost. Also, very important-Ritz peanut butter crackers helped with the bone aches and LOTS and LOTS of gatorade - it will help with the pain of chemo meds.


    Praying for the healing of all of us!

  • tri-lady7
    tri-lady7 Member Posts: 95
    edited October 2017

    Hi eightoutof8 and vl22a- I am at Foxchase as well and will be starting chemo this week. So nice to know there are others there from this site. I was Dx in Aug and had lumpectomy in Sept so now ready for chemo. I am nervous but ready to get this started! My prayers are with you and everyone going through this with us.

  • Jennifer522
    Jennifer522 Member Posts: 194
    edited October 2017

    First Chemo (AC) done. It went well, pretty easy. Checked in at 8:30am and out by 11:45am. I have my neulasta onpro on my arm. It will go off in 27 hours and then I can remove. Was shocked when the financial person said it was $10,500 each. We are only getting charged $25 for this one due to a company rebate. Next will go towards insurance.

    My husband and I stopped by Firehouse subs and I ate while I am feeling pretty good. Will probably nap later this afternoon.

  • abatract
    abatract Member Posts: 3
    edited October 2017

    Oh, thanks for starting this topic! I'll be starting chemo this month, too. Got the call on the 5th, tests all this week and last week, and then they're starting me in chemo as soon as possible.

    I'm still reading through all these entries, but definitely wanted to post with a bit of my story (in still getting a bunch of tests, so I don't know all the details about the type of chemo or anything). It sucks that we all have this happening now, but it's nice to not feel so alone in it.

    I'm 33, and really nervous about all this--the chemo, the MRI, the test results. It's nice that you have family around (though I'm guessing having children during this is its own scary challenge). I don't have as much of a support system as is like, I lost my best friend and main... everything, really, a year ago, and then right after, I developed a thyroid thing that completely wiped me out. I've been pretty isolated, and really only have acquaintances, no one I really want to share this with locally.

    I'm planning on starting support groups, and there's a local place that has things like journaling, painting, yoga, so that sounds pretty awesome. Now I just need the energy to get out there!

    My family is really great, though. My mom is out in CA, but she already told me she'll be there post-surgery, or whatever time I decide I need her most. My sister just moved out to the East Coast (she's about six hours away), so I might get a tiny bit of help from her, though she's a lot younger than me, and I don't really want to burden her much, she's busy and has a new job, too. My team seems really great, too, and my primary care doctor is lovely.

    I just saw the ultrasound/mammogram report, and we're twins! My main tumor (also auxiliary nodes) is 1.6 cm and in my left breast. Yay?

    Feel free to PM me, anyone! Thanks for reading.

  • LisaCincy
    LisaCincy Member Posts: 316
    edited October 2017

    Well, I'm officially 6 days into treatment, out of 56, but who's counting? All went well with my first AC treatment, and I'm happy to report that I didn't experience any nausea. I did experience a low-energy day on Saturday compounded by killer indigestion. I have now made a note to avoid spicy foods (red peppers, onion and garlic) on the day after stopping steroids. I had no idea if I was allowed to take Tums, etc. so got little sleep that night. Woke up Sunday feeling better. Walked with my husband and then took a major power nap or two, then back up walking again. I can't say I felt normal, but I was fine.

    Today, I called my team about my white tongue, which is almost neon white. Thrush. They prescribed me so Nystatin, so hoping that will clear it up. It doesn't hurt, but I don't want it to turn into something major.

    This week, I'm planning on visiting a nice Cancer support group in my town that gives free/reduced medical massage, healing touch, meditation, and wig fittings. I wasn't going to get a wig, but my co-worker convinced me to have one just in case I changed my mind.

    I know that we don't see each other here, but reading your thoughts, concerns, joys and fears really does help. Quality of life is something that Western medicine often overlooks. I'm so glad to have you all here as my virtual Chemo buddies. I wish I could do more.

  • jenglutenfree
    jenglutenfree Member Posts: 12
    edited October 2017

    Mhi seemaryrock, I am 11 days into round one of AC. 4 round sof AC followed by 4 of T. My mom had BC 5 years ago but neither of us have the genes. I also,have two kids but they are 12 and 14 so are actually sort of helpful around the house:). Looking forward to supporting each other! Xoxo. Jen

  • jenglutenfree
    jenglutenfree Member Posts: 12
    edited October 2017

    Hi Lisa, I'm officially 11 days in from 120:). I'm sorry you got thrush and hope it heals soon. I have mouth sores but they have been manageable. Jen

  • LisaCincy
    LisaCincy Member Posts: 316
    edited October 2017

    Hi Jen,

    I'm actually Day 6 out of 56 for just the AC portion. The Taxol is another 8 weeks so we're just about on the same schedule. I have to set short goals to make it all manageable.

    Cheers!

  • simbobby
    simbobby Member Posts: 94
    edited October 2017

    First Infusion day today, Oct 9, 2017

    I ruminated and worried all weekend for nothing. It could not have gone better.

    I took a Xanax before I left home then went with my Sister. Prepared the port with lidocaine.

    The Nurse practioner did a breast exam for measurements. She ordered a chest X-ray for my rib cage. Pain when breathing makes her suspect I may have bruised, broken, or cracked a rib during last week's breast MRI fiasco. The pain is not improving.

    Accessing the port was painless. Never felt the infusions.

    For appetizers, they gave me Ativan and Zofran for nausea.

    No mention of any steroids.

    The main course was Adriamycin and Cytoxin.

    For desert, on board Neulasta which will trigger in 27 hours.

    This infusion took a little over 2 hours and I slept through the entire event.

    Sissy and I had dinner at Red Robin-I was famished. Two root beer floats, burger and fries.

    Came home, took 1 Claritin To prevent bone from the Neulasta - 2 Sennekot for regularity,

    Prepared the baking soda, salt water potion for prevention of mouth sores. - and used it.

    Now we wait and see what each day brings going through this first cycle.

    Thank you all for your tips






  • Jennifer522
    Jennifer522 Member Posts: 194
    edited October 2017

    Simbobby your so prepared. I haven't taken anything yet but have my anti-Nausea and Claritin pills as soon as I feel anything!

    I did use biotene instead of my normal listerene and a soft regular toothbrush instead of my electric. Worried a bit about mouth sores but also my teeth. I spent $8000 last year in dental work!

    Your right I worried about the appointment for nothing. At 45 I was the second youngest patient there out of about 8 or 10 I saw through my time. And I had hair, so obviously a newbie

  • fishingal68
    fishingal68 Member Posts: 32
    edited October 2017

    Hi, ladies.

    Today is my day to start my chemo regimen. First I have an appointment with my surgeon to look at my port, then I'm off to the cancer institute to be infused with TCHP- Round #1.

    Simbobby & the rest of our crew who have already started your Oct chemo, please let us know how you are feeling.

    Jenglutenfree, I am GF, too. Any recommendations for after-chemo meals? (I have allergies to nuts, seafood, iodine, gluten, and mushrooms, so that complicates my meal choices).

    Here's hoping for a SE-free infusion! Have a great day, everyone!

  • Trinity411
    Trinity411 Member Posts: 12
    edited October 2017

    Hi Ladies,

    I've been lurking on the boards for the past couple of months and thought I would finally officially join you all. I was diagnosed back in July at the age of 40 (my first mammogram). I am a mom of 3 boys ages 9, 7, and 2, and a Great Dane!

    I had BMX surgery on 9.26 and have been feeling much much better than I expected. It's been 2 weeks today and life is pretty much back to normal......for now. I got my final pathology back on Friday. Although, I knew the approximate size, the doctors felt there were only 2 positive lymph nodes. Turns out it is in 4 nodes and just over 5cm, which puts me at stage IIIb. Up until now my biggest concern has been how I'm going to get through chemo, but now I keep finding myself letting my mind wander to places I know I shouldn't, but this is so scary.

    Anyway I meet with my MO for the first time on Friday. I'm sure chemo will start in the next few weeks. Hopefully he will be able to give me a better outlook. For now, following your experiences and helpful ideas and tips really helps!

    Hugs to all

  • LisaBS
    LisaBS Member Posts: 13
    edited October 2017

    Hello Trinity

    When I started my journey they thought in was going to be stage 2 and when all was done ended up up to be stage 3a to 3b with 5 nodes and score of 3 (long story). I just started chemo last week after two surgeries. You just have to take one day at a time and known you can fight this. The most important thing is for you you find strength in your self/mind and use all of your family friends and community support. You got this and we are hear for you. It takes a village!

    Lisa

  • simbobby
    simbobby Member Posts: 94
    edited October 2017

    Hi Jennifer,

    I am worried about the mouth sores to.

    I mixed up the baking soda / salt water solution (1 tsp baking soda, 1 tsp salt to 1 quart water). Put it on my bathroom counter with Dixie cups as reminder. I do a quick rinse every time I go into the bathroom.

    Hope it helps



  • denise-g
    denise-g Member Posts: 353
    edited October 2017

    All during chemo, I never used toothpaste to brush my teeth just baking soda.

    Also would rinse in between. Never got any mouth sores, thankfully.

    My sister did the same thing, and she never had any mouth sores either.

    All my best!

  • littlebee72
    littlebee72 Member Posts: 19
    edited October 2017

    Hi Everyone! Glad I found this thread. I have IDC stage IIA. I had a lumpectomy on September 1st and had clean margins with no lymph node involvement. My oncotype, however, came back at a 29 which is low on the high aggressive side, so it will be 4 rounds of AC and 4 rounds of T for me, every 2 weeks. I had my port put in yesterday which hurt like a mother. My shoulder pain and neck pain is terrible, not to mention that the port sits right where my bra strap lies (great). I start my treatments this Thursday and I am scared to death. I am being very positive, but deep down I am terrified!

  • Jennifer522
    Jennifer522 Member Posts: 194
    edited October 2017

    littlebee, it took about 3-4 days before my port stopped hurting. The worse the first 24 hours. Mine is on my right side and I slept on my right side. So I would naturally turn that way and wake up..ouch, ouch.

  • Trinity411
    Trinity411 Member Posts: 12
    edited October 2017

    Hi Lisa,

    You are so right about the one day at a time mentality! I keep trying to remind myself that no one ever knows what tomorrow will bring, so it is important to enjoy today......most of the time it works. I so appreciate the support and empathy!

    Kim

  • jamorcar
    jamorcar Member Posts: 9
    edited October 2017

    My first treatment is Oct. 23. I'm nervous, but ready to start killing some cancer cells. Thankful for all these posts with advice. We are not traveling this journey alone!

    I had my chemo education today, echocardiogram on Thursday, MRI next Wednesday, and I'm waiting for a phone call to schedule the port placement. It's overwhelming, but I'm slowly starting to emerge from the shock and fog of my diagnosis.

    For those of you who listen to music during your infusions, any song suggestions for my chemo playlist?

  • Jennifer522
    Jennifer522 Member Posts: 194
    edited October 2017

    I watched The Voice on Hulu on my tablet. As for songs, lately when I find myself anxious I put "breathe 2am" by Anna Nalick on my phone. The chorus reminds me to just breathe.

    I totally get wanting to kill those cancer cells. Especially not knowing if they are floating around in my body. Since my lump is palpable. The nurse said I should feel it shrink away!

    My nuelasta went off when I was in the school pick up line (my mom was driving). Didn't feel anything just heard the beeping and clicking. Took off when done. About a hour later my heart starting beating a little faster. Nothing worrisome just I could feel each beat and my face got flushed (but no fever). Laid down for a little over an hour and napped. Felt better when I woke up


  • AgathaNYC
    AgathaNYC Member Posts: 317
    edited October 2017

    Hi, everyone!

    My first AC treatment last Friday. I would say that Sat & Sun were very good days with only 2 very brief feelings of nausea which only lasted about 30 seconds before I "righted" myself. Otherwise I felt great. Yesterday and today (chemo days 4 and 5) I think I got hit with the Neulasta. I've been REALLY tired and today my back and ribs started to be achey. It's not anything that Tylenol can't help but I was hoping that I'd feel as good as I did over the weekend. I may switch my treatments to Wed from Fri if this is going to be my "schedule". I can't keep missing work.

    The only really unusual thing that has happened is that I had insane food cravings today. My MO put me on a really restricted diet (no sugar or simple carbs) and I've been okay with it up until today. I felt like if I didn't have a grilled cheese and fries I'd go nuts. So I did! And then cake. The cheese part is really strange since I've been vegan for a couple of years and haven't wanted it in the longest time. I'll let you know if I get a hankering for meatloaf. Then you know something is really up.

    I'm so grateful that there are so many of us posting on this thread. Everyone in my life has been great, but it's so good to be able to virtually hand out with women who are going through the same thing at the same time.

    Hope you guys don't mind if I take up a lot of space to say hi:

    NewNormal44 - Thanks for all the encouragement. It really is so great to hear from other women going through it.

    Joyseeker - that wig is really cute. I like when they have highlights so that they are more realistic. Hope your wig hunt is going well.

    Tri-Lady7 - Good luck with starting chemo this week. We'll all be with you in spirit.

    Jennifer522 - Glad your first treatment went off without a hitch. Let's hope they are all uneventful. How are you liking your cute bob?

    Abstract - I'm glad you found us, although it's not the best club to be in. I'm single and live alone, too. Most of my family lives out of state as well. It's difficult to be on your own when stuff like this hits, but as I research I see that there is so much local support out there for those of us living with breast cancer. There is a free website called "CaringBridge" that I'm using to keep my out-of-town family and friends up to date on what's going on with my treatment. It's like a private, personal blog. You can make it as private or public as you like. You have to share the link so that your peeps can view it. You can post photos, links, videos, etc. It's really helped to make the people who are far away feel much closer.

    LisaRxCincinnati - I'm glad your first infusion went well. Crazy about the thrush. Let us know how the Nyastin treats you. I also would like to hear more about the support group. What exactly is a medical massage?

    JenGlutenFree - you and I seem to be on the same regimen. Would you say the second week after AC is easier than the first? I think it's the Neulasta that got me more than the chemo.

    Simbobby - I am sorry that your ribs still hurt. What will they do if there is a crack? I love the way you described the treatments like a menu. And I am a little envious of the root beer floats! I love them!! A trip to Red Robin sounds like magic and unicorns to me right now.

    FishingGal68 - I hope your first day went well. Please let us know how you're feeling. The nutritionist at the hospital sent me a "eating during chemo" handout (not as crazy restrictive as my oncologist has me on.) If you'd like to see I can figure out a way to get it to you.

    Trinity411 - It's great that you're feeling so well after your surgery. I am doing my chemo pre-op so the recovery from surgery is the big boogie man in my mind right now.

    LisaBS - welcome to the gang :-) I'm on an AC+T plan, too.

    LittleBee72 - I imagine all of us are terrified deep down sometimes. Please come to the thread and vent with us. We've got your back.

    jamorcar - I know the feeling of just wanting to get going and start kicking some cancer butt!

    Have a great week, ladies!

  • LisaCincy
    LisaCincy Member Posts: 316
    edited October 2017

    Some things I've learned (which may or may not apply to you) 1 week Post Chemo,

    Try to push off that afternoon nap or you may find yourself in a vicious cycle of waking up in the middle of the night. We need sleep.

    I was a fiend drinking water the first week because I wanted to flush out the chemo. Makes perfect sense. Didn't make perfect sense to continue to chug gallons of water every day, which disrupted sleep, and even caused me to short one of my walks because I had to pee so badly. Balance, Lisa. Balance.

    The chemo was quite tolerable thanks to anti-nausea drugs and steroids. Honestly, my worst day was due to indigestion.

    Having this "off" week has been wonderful for both my body and my mind.

    I don't need sugar to live after all! I was "addicted" to sugar, but the second I heard the "c" word and realized that my weight was probably a contributing factor, I cut back all gratuitous sugar and haven't missed it. My mom brought me cupcakes, and after she left, I tossed them. I need to eat to live, not live to eat.

    A morning walk is the best way to start the day, and can only help with the battle. I'm looking to add weights in as soon as I think my chest can handle it (after port surgery).

    There are so many wonderful people out there. Every day, I am struck by the kindness of perfect strangers. Today I met with a lady who volunteers for a private organization that fits cancer patients with free wigs and hats. She made me laugh, and she doesn't even get paid. There are models all around us if we pay attention.

    And finally, after urging from my husband, I actually tried Meditation today. Just googled Deepak Chopra's Healing Meditation and there they were, free on YouTube. I have to say, it was just what I needed. One thing that really resonated with me is when he said that without chaos, there is no change. Without uncertainty, there is no creativity. If nothing else, cancer is a wake-up call. Anyway, if you're having anxiety, check it out.

  • Joyseeker
    Joyseeker Member Posts: 247
    edited October 2017

    Ladies....I already love you all. Your responses and encouragement are so heartfelt. In all honesty, I thought I was the only one with a larger tumor with nodes, there are a few of us in this thread. I find that comforting.

    I got my cast off today and into a walking boot. Freedom!! I have lymphedema massage tomorrow, bone scan Friday, then oncologist Meeting on the 18th. Port should also some time this week. What I wouldn't give for a good night's sleep. So much worry and anxiety

  • AgathaNYC
    AgathaNYC Member Posts: 317
    edited October 2017

    Lisa - thank you for your encouragement on the sugar front. I've been beating myself up a little for letting myself down today in the food department. Tomorrow is another day. I need to get out there and walk, too.

    Also I second the meditation recommendation. I'll definitely look up Chopra's videos. I have an app on my phone that has a lot of guided meditations. It's called "Insight Timer". I've been doing them before bed and it really helps me.

    Joyseeker - there are a lot of good "fall asleep" meditations on YouTube and in phone apps. There's a kind called Yoga Nidra that I've been getting into. It keeps my mind from racing. Hope you get a good night's sleep tonight.

  • rljes
    rljes Member Posts: 499
    edited October 2017

    Hi Everyone, I see some people I know in here. Hi!

    I've been in the Aug Surgery group, Had surgery August 22, and choose to go 'flat'. Been lurking in every other place that Ive found helpful.  Probably starting Chemo in the first week of November. (procrastinating)  It will take me that long to get my 'to do' list completed.  

    I've noticed most are on AC & Taxol.  Is this because of the HER2- ? 

    I will be taking Taxotere, Carboplatin and Herceptin. My MO has already told me I will be receiving Neulasta. 

    I am most worried about the port. (besides SE's - that's a gimmie)  I had a terrible time with my drains protruding against my skin. Very painful until the drain was out. And it still hurts.

    I will be following you and wishing you all well. 

  • fishingal68
    fishingal68 Member Posts: 32
    edited October 2017

    Hi ladies,

    Today was a loooonnnng day sitting in the chemo chair. Although my port worked for infusion, it did not cooperate for the blood draw, so I had to be stuck for labs. :(.

    My nurse & her colleagues were amazing. My honey (who is not very patient when waiting) was very helpful today, too. I had virtually no chemo side effects, but I am really tired. I also have a headache. I'm hoping for a good day tomorrow so I can go to work.

    My Neulasta self-injector will go off tomorrow evening, so hopefully I can sleep through any side effects it might present.

    All in all, round 1 of fighting the cancer monster was a success.

  • LisaCincy
    LisaCincy Member Posts: 316
    edited October 2017

    Agatha, Your appetite is undoubtedly caused by steroids. Certainly this was the case with me.

    I agree that Neulasta is probably to blame for the energy low I felt +4 days after chemo. It's gotta be hard on a body to make all those white blood cells!

    rljessu, glad to hear from someone who's chosen not to reconstruct. That's probably the option I'll take. Any thing you'd do differently? I've had a port already installed. It was inserted just below my collarbone. Other than the scary looking bruising, it's actually not been an issue at all. If you do have major concerns, ask the nurses who they consider to be the best surgeon. There is an art to surgery.