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Starting chemo April 2019

bam320
bam320 Member Posts: 84

Hi all,

I am starting chemo on April 2nd. I will have 4 A/C followed by 4 Taxol. I still have to have my port placed and the bone scan which I am completely scared about and obsessing over any ache and pain I am having. I have my wig appointment tomorrow and also have an appointment with radiology. I also have a chemo education session and get to see where the magic happens before it starts.

Anyone else starting in April?

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Comments

  • msmarie
    msmarie Member Posts: 72

    Hi bam320!  I'm starting chemo 3-29, so I'll join you here.  This is actually my first post.

    Looks like we're on almost the same regimen.  My port placement is this Friday, 3-22.  Already had my chemo teach.  Try not to worry about your scans, I know we all tend to get anxious with all the imaging. 

    I am probably foolish, but I am doing Paxman.  I have a ton of hair, and just got a bob cut after I picked out a wig I liked.  If I can save even 20%, it'll be a good head start on the other side.  I have pretty low expectations, but who knows, maybe I'll be that gal who saves 40-50% on AC.

    I plan to work through treatments, taking treatment day off only.  We'll see how it goes. 

    Just wanted you to know I'm here with you and we will get through this.  5 months for me and then I have rads to look forward to!  MM

  • farfalla6
    farfalla6 Member Posts: 92

    Starting just a few days before April, starting AC March 27, then 12 weeks of Taxol. Also 5 months, then radiation. Wig appointment this weekend, I have always struggled with my frizzy hair, straightened it etc, so didn't want extra work of cold caps. I also want to continue working; I heard days 3/4/5 are the worst so thinking of getting treatment Wednesday then working th/Friday and taking just Monday off. But of course it’s hard to know if this will be really possible.

    They've said I don't need a port

  • moderators
    moderators Posts: 7,813

    Dear Ms Marie,

    Welcome to the BCO community. We are sorry for your diagnosis but so glad that you reached out to our members. We hope that you stay connected here and get support and helpful information for your upcoming treatment. We wish you the very best and we are here if you need help navigating your way around the boards.

    The Mods

  • msmarie
    msmarie Member Posts: 72

    Farfalla, yes I have been reading that days 3-4-5 may be the worst ones on AC.  I'll have to adjust if so. My nurse navigator thought Fridays would be a good start and then work backwards so that my worst days are on the weekend.  My husband has an easier time getting time off for my treatments if they are Friday, but I have several chemo volunteers who can come with me on other days.     

  • farfalla6
    farfalla6 Member Posts: 92

    oh, so first cycle Friday then next time in two weeks Thursday, etc? That’s interesting. Wonder if that will make it more unpredictable for work. I am going to be v anxious before the first one...

  • debrac
    debrac Member Posts: 63

    Hi ladies, I, starting chemo TC on April 2nd too. I’ll have 4 treatments, every three weeks, followed by radiation 5-6 weeks, then hormone pill (AI) for 5 years. I’m trying to focus on each treatment so as not to get it all confused. One month at a time. I’ve been reading the threads on the Chemo March 2019 threads. Lots of great info there. But glad to see a thread for those of us just starting.

    I will have chemo class next week too. Unfortunately, I went thru the chemo routine as a caregiver with my mom two years ago, so kinda know and saw how it works. But having it actually infused into me, yikes! Puts a whole new twist on it.

    Looking forward to all your posts and offering support and feedback as we go along togetherSmile

    Debbie C

  • bam320
    bam320 Member Posts: 84

    MsMarie - Good luck with the port placement. Glad we will be able to compare notes as we go through this. I have been checking on people in the March group and how things are going for them too. I am going in with the attitude that I will have minimal side effects like others - hope that is the case! Have you read that hair starts to grow back after the A/C has ended?

    Farfalla - I intend to work through this too but we shall see. I have some co-workers who had BC years ago and they worked through it. One had chemo on Thursdays. Friday was still on the steroid "high" and was able to work and then would crash for the weekend and be back to work on Monday.

    Debra C - I'll be thinking of you on the 2nd. Part of me can't wait to get started as the anticipation and unknown is so hard! I have printed out calendars and put in the days of treatment so I have a visual of when this will be over, provided it all goes as planned.

    We will get through this!!

  • dodgersgirl
    dodgersgirl Member Posts: 1,902

    wanted to share with you guys.

    I started chemo April 2017, 4 AC treatments, every other week. Then Taxol weekly for 12 weeks. With AC chemo, eat ice during the administration of the “red devil” (15 mins by syringe) with Taxol, I iced hands and feet to try to prevent nail damage.

    As others have posted here while on AC, my “bad” days were days 3,4, and 5. You should expect to feel ok the day of chemo and the following day from the pre-chemo meds (steroids and anti- nausea IV)

    I had chemo on Wednesday (which was my day off). Side effects didn’t kick in til late Friday afternoon. My eyes would become light sensitive and Brain was foggy. Saturday and Sunday I made sure to eat something every 3 hours.

    Drink lots of water, especially the day of chemo and the day after chemo.

    Make sure you take any anti-nausea meds as prescribed, don’t wait for nausea to set in as it will be harder to fight back by then.

    I did buy “sea bands” to help ward off nausea. Found that chicken noodle soup was a quick comfort food to have. Eating protein kept nausea at Bay, too.

    By Sunday evening, I felt normal again and didn’t miss work while on AC chemo.

    The AC treatment really did fly by once I knew what to expect.

    You guys can do this.

    Yes, lost my hair on AC. Eyelashes, eyebrows, nose hairs, arm/leg hair, and nether region hair— gone. I am about 18 months past chemo now. Hair is long enough to pull back into a SHORT pony tail. All the other hair has returned.

    Note on being bald— get a soft beanie to wear inside because air conditioning will feel really cold on your head. I slept with that soft beanie occasionally, too.

    Hope your chemo journey is without crappy side effects and that the chemo time flies


  • bam320
    bam320 Member Posts: 84

    Thanks Dodgersgirl! Love hearing positive experiences...well, ones without major SE's and complications. I am going in with the mind set that my experience will be the same....fingers crossed!

  • farfalla6
    farfalla6 Member Posts: 92

    I met with the oncologist today and will be starting chemo next thursday; 4 rounds of AC every two weeks, then 4 rounds of dose dense taxol every 4 weeks. Plan is to take Monday off, but work otherwise. So worried about the side effects.

  • kimg
    kimg Member Posts: 19

    I am starting 4 AC April 3rd. Port goes in April 1. Followed by 12 weekly Taxol. I am ER/PR+, small tumor, node negative. BUT high recurrence score, so oncologist is being aggressive. I'm so glad to have you guys to share with as we go through this.

  • bam320
    bam320 Member Posts: 84

    Hi Kimg, I start my A/C on April 2nd. I get my port next Tuesday and am getting more anxious about the whole thing as the days go by. Hopefully once we know what to expect it will be easier.

    Farfalla6 - Hope your port placement went okay today.

  • SparkleGirl2018
    SparkleGirl2018 Member Posts: 39

    Hi all, I am in the March group as I start AC yesterday but thought I would follow along here too. The AC treatment went faster than I thought it would. I am glad the anticipation of it is over! I took anti nausea med last night (phenergran) as I was feeling queasy. Slept through the night. I also started taking claritin to help with bone pain from the neulasta. I feel light headed today but overall good. I came into work at 10:30 and plan to work until 4 or 5 depending on how I feel. I am worried about how I will feel next week but hoping for the best!

    I received the results of my pet scan yesterday and showed an .8mm lymph node light up in my supra clavical area. Which she did not seem too concerned about. She said she is not going to do a biopsy because the chemo and radiation after will take care of it. It still makes me nervous and I read that it raises my stage to a lll rather than a ll. Is it bad I didn't even ask her about the staging. I really didn't want to know! I will probably ask later.

    Looking forward to keeping up and supporting each other though this!!

  • bam320
    bam320 Member Posts: 84

    Hi SparkleGirl,

    I am happy for you to have one done!! You are 25% done with A/C!

    I am having a bone scan next week and a ct scan of chest. I am petrified that something else will be found. I had a ct scan done of my abdomen before my surgery and that was fine but with any ache or pain I am thinking it is in my bones.

    A co worker had breast cancer 15 years ago and would have chemo on thursday, would be okay Friday, sleep the weekend away and be okay by Monday. She did not remember what regimen she was on. I cant imagine not remembering but I hope to get there one day!

  • SparkleGirl2018
    SparkleGirl2018 Member Posts: 39

    Hi Bam,

    Great to think of it as 25% done!

    I have a coworker who had breast cancer treatment 12 years ago and she kept a journal she brought in form me to read. It was really helpful to see what she went through and the reaction. I started a journal during my first treatment yesterday. On one page I write down the meds I take and if they help and how they make me feel. On the opposite page I just write down my thoughts and what is going on that day.

    The waiting for results from scans and tests are the worst!! Wishing you the best and for awesome results!

  • santabarbarian
    santabarbarian Member Posts: 2,310

    Sparklegirl,

    Another bc.o member quoted her Dana Farber MO as saying THE most significant factor is the cancer's response to treatment. Which rings true to me. It means you can have a stage 1 low grade cancer that progresses and becomes serious, or a stage 3 high grade cancer that dies. My cancer was 2B (old rubric) with a 3.8 cm primary, and 3.0 cm node. It was grade 3, Nottingham 9. By the new standards, given that it was also TNBC, that's stage *3C*. Yet my tumor began *shriveling* right away... I could feel it getting smaller after one chemo and I ultimately got a pathological Complete Response, which means that after chemo, my lumpectomy showed zero live cancer cells in my breast or lymph nodes (only scar tissue). Walked away with a lumpectomy and a huge sigh of relief! Chemo is powerful medicine!

  • msmarie
    msmarie Member Posts: 72

    so nice for you to share Dodgersgirl! We need experienced cheerleaders and their wisdom.

    Happy to see more join the thread! We can do this Ladies!

    Got my port today. Head measured for Paxman. And watching the incredible shrinking bank account. For Cx patients, Tumors should be the only things incredibly shrinking!

    Y'all, I didn't even cry today getting the port. I guess I have turned a corner and am accepting the things I cannot change. Honestly I was more amused with all the HIPAA violations. I overheard at least 10 other patients names and the procedures they were having done. And I'm sure they heard mine.

    Santabarbarian, MO nixed my FM plans. said not enough research for him to feel comfortable. Ofc he said he can't stop me from doing it, but will be against his rec. They push protein. Not sure what I'll do.

    Have a restful weekend everyone! MM


  • santabarbarian
    santabarbarian Member Posts: 2,310

    Well it's nice that he recognizes the choice lies with you.

    I think if you do it, you need to be honest w/ your MO. He sounds fact-based, like mine: they have an extremely hard time recommending *anything* that does not have a $50M randomized double blind clinical trial behind it. But some MOs do use these practices, like fasting, and have fabulous anecdotal evidence for them.

    I did several things that my MO was not wild about-- but I told him the truth.

    Not even halfway through my chemo when my lump & node were *gone* he said, with a wry smile, "keep doing what you're doing!"

    TNBC is a beast -- you kill it or it kills you-- and mine was advanced, and I wanted to up my odds. I knew getting a pCR was my goal, and only ~30% get one. I figured, if you can't tell me why it's a BAD idea, and other MOs think it's a GOOD idea, I am willing to accept the risk and do it.

    I had a consult w Dr Keith Block (author of "Life Over Cancer"- a good book), who is a very experienced integrative MO in Chicago, and he told me what supplements to take and what to eat. Much of it was specific to TNBC. He is a believer in the high dose Vitamin C IVs and Glutathione IVs also. He gives curcumin via IV which is hard to get elsewhere. I followed most of his recs by visiting a naturopathic physician in my town who has a practice in oncology support. It was comforting that her recs were nearly identical to Dr Block's. I also did hyperbaric Oxygen which boosts the effect of high dose C. It as a full time job but I am so glad I did it all.

    Another MO (who I know personally) was a great sounding board -- she was more flexible to me trying things, and she validated a lot of my 'off the beaten track' choices. She also suggested a veggie-heavy, low animal fat keto diet, which I did.

    I might have had a great success regardless -- but clearly, none of the above hurt me!!

  • santabarbarian
    santabarbarian Member Posts: 2,310

    PS: In reality, it seems to me if you avoid feeling horrible SEs, your food intake equals out. If you don't fast, and you then feel awful/no appetite for 4 days, what's the difference?

    But I would lose weight every chemo and then regain it in re-build. My weight trended down very gradually so by the end I had lost 10 lbs, Which I could easily afford to lose. Even when doing FM, I ate very healthy foods, just smaller portions. So I think net/net, I was eating an extremely healthy diet and every bit of what I needed. Dr Block recommended organic whey protein isolate (powder) in my morning smoothies so I had great protein intake even when eating lightly. I'd make a smoothie w/ berries, nut milk kefir (Califia) and coconut yogurt (Cocoyo) so it was low carb, low calorie, but great protein.

  • bam320
    bam320 Member Posts: 84

    Farfalla6 - sorry I just realized you aren't getting a port but it was MsMarie getting it today.

    How was it MsMarie?


  • msmarie
    msmarie Member Posts: 72

    bam, re:port. Surgeon did not have luck with subclavian vein, so he had to use jugular. I have an incision in neck and chest. Little sore and I guess I didn't do enough research on the complexity of the procedure. But sometimes for me, knowing less is better and less stressful. Everyone was fabulous where I had it done.

    I asked anesthesiologist for the anti-nausea patch and I'm so glad I did. I am feeling some light nausea even w patch. I have always been nausea sensitive to anesthesia. Maybe I haven't had enough water though, drinking some extra fluids now.

    I feel for the women who get their port in same day as treatment. I guess we are all different, but I am happier to heal up before getting an infusion right away. MM

  • urdrago71
    urdrago71 Member Posts: 500

    hello everyone..Im from April 18 boards, and tn board..

    Bam320 so very glad you started the thread..

    I see that someone was told they dont need a port. I believe that its up to each person what they want, or dont and advocate for yourself always.

    I want to remind each of u that we survivors from years or a year prior wanna help, and support you as u go through this journey.

    Sending good vibes and minimal side effects..

  • robinredbreast
    robinredbreast Member Posts: 49

    Hi There!

    I too am scheduled to start TC chemo in April (8th). I just completed 20 rounds of radiation (yes, I'm doing it backwards...). My Oncotype results took 3 weeks to come back and my RO and MO both said it would make no difference with my outcome if I did radiation first. So when I learned after the first week that the results were delayed (since I might not even need chemo), I started radiation. So much planning....

    I live 4 hours away from my treatment site and spent the whole 4 weeks away from home during radiation. By the end of radiation, I had caught a cold, was experiencing fatigue, and was extremely homesick. The day after my last radiation treatment I had surgery and had my port placed. I've now been home 4 days, reunited with my furbabies (I have 2 dogs), still sick, but happy. ~ sidenote - MsMarie - I too am watching the incredible shrinking bank account (which is why I sought care 4 hours away). 

    I am nervous and scared to start chemo while living so far away. I'm concerned with making the 4 hour trip home everyday after infusion and managing side effects while my MO is in a different state. 

    Seriously considering switching MO providers and finding one close to home. Has anyone ever swapped out their MO this close to treatment? I don't even know if there will be a long wait to get in to see someone local. 

    Looking forward to having someone to talk to and share the chemo journey with. We CAN do this!

  • msmarie
    msmarie Member Posts: 72

    urdrago, thanks for being here with us!

    Robinredbreast, I think your days will be harder with the added drive time. Do you have a good support person driving with you?

    If it were me, I'd seek the most reputable treatment facility closest to me, but get on it soon because insurance can be fussy and cause delays. It's important though to have faith in your treatment team so if you like the longer distance crew, you may want to stay with them and the extra driving. I have read on this forum that chemo is chemo, and if you get new closer MO he/she will likely follow what current on advised.

    Welcome and good luck w decision. MM

  • robinredbreast
    robinredbreast Member Posts: 49

    MsMarie- thanks for the thoughtful feedback. While I have an extremely helpful support person (husband) that will stay with me and drive, I agree with you, why add the stress of additional travel. I researched and found a MO close to home (only 1 hour away) that I'm going to try to get in to see. Calling Monday. Fingers crossed.

    How are you feeling? Nausea still present? Hope your better soon.

  • moderators
    moderators Posts: 7,813

    Dear robinredbreast,

    Welcome to the BCO community. We are sorry for your diagnosis and treatment and so glad that you reached out to our members. There is so much support and information to be found here. We hope that you will stay active and connect to others who can be with you through all of this. Let us know if there is any help we can provide.

    The Mods

  • bam320
    bam320 Member Posts: 84

    MsMarie - sorry the port placement was a bit rough.

    Robinredbreast- glad you have found us but sorry that you have to be here. I agree with MsMarie on finding someone closer and read that you plan to. Hope you find someone that you like and are comfortable with.

    SparkleGirl - Hope you have been feeling okay today!

    Urdrago - Thanks for the encouragement and hope you continue to check in on us from time to time.

  • moderators
    moderators Posts: 7,813

    Calling Philadelphia folks who could benefit from learning about wigs, and receive a free wig from Wigs.com. We are seeking people who are about to enter chemo, or are in treatment already. Wigs.com is partnering with Breastcancer.org and hosting a press event scheduled for next FridayMarch 29 11am -12:30 p.m. ET. Please PM the Mods if you are interested.

  • msmarie
    msmarie Member Posts: 72

    I'm still a little tender from the port, although it doesn't interrupt my sleep.

    OK so I've started packing my chemo bag for Friday. It looks like I'm going away for a week or two!

    Contents: diagnosis/treatment binder, meds including OTC stuff like Claritin, Pepcid, Imodium. Senekot, thermometer, hand sanitizer, lotion, lip balm, blankets, fuzzy socks, books, iPad, chargers, headphones, note cards, journal, pens, neck pillow, Paxman cold capping bag, ice chest,water water water, healthy snacks, cold packs for icing hands and feet, flavored ice chips/Popsicles, supportive husband to carry it all.

    Am I missing anything?

  • robinredbreast
    robinredbreast Member Posts: 49

    Lol... sounds like you're prepared! The only additional thing I can think of is a book or color book, and/or a deck of cards (so you can play with hubby). 

    I have to take my steroids on the day of treatment (am and at noon). Do you have any of your prescriptions that you need to take along?

    Glad you're feeling better from your port placement. 

    I wish you well as you start your chemo journey on Friday.