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Starting Chemo September 2021

HummingbirdAZ
HummingbirdAZ Member Posts: 93

Thinking perhaps we start a thread for those of us staring at chemo in September. How are you preparing; physically, mentally and emotionally? I know I've been doing research, asking questions, stalking past chemo threads and messaging ladies here. While I am pretty scared, I thought I was mentally prepared. But as I prep to have the port placed tomorrow, things are getting very real and I don't think I'm as prepared as I thought. I've never taken any drugs other than an occasional Ibuprofin and have never used my insurance for anything that isn't routine. The thought of intentionally putting toxins into my body is gut wrenching, not to mention adding more drugs to combat the side effects of the initial drug. It's somewhat overwhelming!

My first infusion (AC+T) is Friday, 9/3 and I'll report back but would love to hear from others and how they are coping.

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Comments

  • 1982m
    1982m Member Posts: 224

    Good morning Hummingbird!

    I hope your port placement goes well tomorrow. Do you know if they put your port in your arm or chest? My friend is living with BC and she got her’s in her arm. I’m not sure how they decide chest or arm.

    I’ll be starting chemotherapy and targeted therapy in September sometime. I’m playing the waiting game though and tired of it. Waiting for genetics, waiting for med oncology appointment, waiting for pathology results…. I’m hoping I get 12 weeks of taxol based chemotherapy with herceptin so that I can be done by Christmas. I turn 40 in Jan next year, so I’d also really like to be done in time for my 40th birthday.

    I’m feeling out of sorts not really knowing the regime I’ll be receiving or the time line.

    Today I’m getting a pre chemo hair cut. I also want to get some soft hats for sleeping/being around the house but not feeling up to going and buying some.

  • AMG2
    AMG2 Member Posts: 90

    Thank you, Hummingbird!

    I'm starting Sept 1. Got my port placed at the time of surgery, so that is ready to go. I got some cold socks and gloves to try to help with neuropathy, and I've got my cold capping lesson by Zoom this evening. My cousin and daughter are going to try to be there with me throughout this first 12 weeks of chemo. I know it's just taxol and herceptin, but still, mentally and emotionally -- AAAAAAAHHH! Scared half to death, and freaking out about what is going to happen at work. My coworkers, friends and kids are so supportive. I'm just trying to remember they are there for me, and they always will be and gain strength from that. I'm hoping once I'm into it, it won't be that bad and I'll feel silly for having been so terrified. It's odd to think my biggest hope right now is to feel silly in the future.


    Ooh, 1982M, just read your post, and I hope you can be done for that, too. Mine (too bad for me) is end of Sept, and I will be sitting in the chemo chair on it. Sad face. No, truly, I know the chemo I'm about to do is a life saver, and I need to do it, so honestly, is it that awful a birthday present? BUT, my baby's 21st birthday is end of Nov, and I'm hoping to be done with my 12 weeks and able to buy him a beer on it. Here is to us celebrating your and his birthdays taxol free by the end of the year.

  • AMG2
    AMG2 Member Posts: 90

    Hummingbird, hang in there. I hear you on the suddenly very real part. I think we prepped basically the same way - research, read the experiences of others, got protective gear lined up, but now it's in our faces as being next week. Big hugs to you. I hope your port placement goes well. Mine bugged me a ton for about a week, and now - I don't like how it looks, but it doesn't hurt, and I'm getting as used to it as I think I can, and I'm really glad it's there.

  • swimgal
    swimgal Member Posts: 60

    Hi, All. I happened upon this post, so I thought I'd add my experiences so far with chemo. Tomorrow will be No. 6 of 12 with Herceptin/Taxol. I am using the cold gloves and socks and the cold cap (Dignicap). I have not had any neuropathy so far and from what I can tell zero/very minimum hair loss. I only shampoo twice a week and no hair dryer. On the days I work or on Sundays for church I do VERY lightly and gently use a curling iron on the lowest setting to turn the ends of my hair under. This goes against Dignicap's guidelines, but I've got to do something Loopy. I am using the hair products from Chemo Hair & Skin: shampoo, conditioner (only once a week since you can't use it treatment days), the scalp cooling booster system parts 1 and 2, and the hair growth spray. I also keep clear nail polish (strengthening) on my fingers and toes.

    I stopped all alcohol intake because I wanted to have the best chance at staying healthy. I enjoyed having a glass of wine or a drink while making dinner, but I was surprised that I have not even wanted alcohol.

    I am exercising at least 3 times a week - a walk, bike ride, some exercises with hand weights.

    So far I have not missed any additional time off from work other than treatment days and going for labs. I am tired on the day of treatment, but not after that day. I'm fully aware that the effects are cumulative, so this will likely change as treatments go on, but I'm grateful for every treatment without SE.

    I am pretty strong, but I will say on the first day of chemo when I was going into the treatment room and had to leave my husband I totally broke down sobbing because it was about to get real Scared. After that I've been okay.

    Last, but most important for me, LOTS of praying!!!

    I hope this info is helpful. I am so thankful I found this site because I learned so much from so many ladies here and it really helped me prepare as much as possible.

    Blessings to all!

  • mindthief
    mindthief Member Posts: 62

    Thanks for starting this thread, Hummingbird! I’m scheduled to start dose dense AC-T on September 10 so I’ll be a week behind you. I would have liked to start sooner but my oncologist decided to get a second opinion on the pathology/protocol from the major cancer centre in my area. I had an echo this morning, so that piece is done, and I’m not doing a port. So now there’s a lot of sitting around, waiting and psyching myself out!

    I hear you guys on things suddenly seeming real. I got my hair cut off yesterday and even though I’m not overly attached to my hair, it hit me hard what’s coming.

    Is anyone else thinking about fasting or fast mimicking diet around chemo days? I’ve read some interesting studies and am considering this, with my MO’s knowledge and cautious approval (her concern is that I will lose too much weight as my BMI is fairly low already).

    Swimgal, thank you for stopping in to share your experience. It’s such a comfort to hear from people getting through this

  • HummingbirdAZ
    HummingbirdAZ Member Posts: 93

    Hey Mindthief, I normally eat Keto and my naturopathic oncologist gave me a couple studies on the fasting. I'm pretty close to that anyway, mainly only eating 9am-5pm and it seems the zero sugar and ketones are the main advantage of the fasting, so I will try it. Of course, he gave me the caveat that if I crave a shake, eat a shake because calories can be more important than nutrients. Not sure I agree.

    I ordered some hats + scarves from headcovers.com yesterday and made an appt with my stylist to get my head shave 2 days after my second AC treatment. EEEK.

  • 1982m
    1982m Member Posts: 224

    AMG2- I hope your done and drinking beer with your baby for their 21st bday too! Sorry your birthday is in a chemo chair. No fun, but your right- gotta do it.

    Mindthief- I wasn't overly attached to my hair either- I actually had cut it pretty short during Covid to allow my natural colour to grow in. However, it was a bit difficult to get it cut short. My hairdresser was amazing and did a cute pixie cut and didn't charge me. That also made me tear up a bit.

    I normally do intermittent fasting - 16 hrs over night. I'll prob keep that up. I looked a bit into fasting but honestly the longer fast might aggravate me…I feel so apathetic to everything like icing and cooling or painting nails. I think its great but I'm not sure I have the energy for any of it. I removed my mirena IUD a few weeks ago and am a bit curious if hormones are levelling or something. I'm normally pretty chipper but I'm feeling pretty emotionally flat lately.

    Swimgal- thanks for popping in. Glad it seems to be going well!

    Hummingbird- I also got one hat today- I ordered one of Etsy and it's very soft. I'm glad I have one. My friends knitting me another slouchy type hat. I've never worn hats but I guess I'm a hat person now. Lol.

    I forgot to mention the one ‘prep’ thing I did was get my eyebrows micro bladed and some tattooed eye enhancement last week. I never would have though about doing either of those things pre cancer- but really glad I did. I feel so fancy with nice eyebrows!


  • mindthief
    mindthief Member Posts: 62

    1982M - I had to have my Mirena removed as well. I haven't noticed a change in moods but I have acne for the first time in 15 years, so that's fun :( I bought a couple of soft hats on Etsy as well. I'm in Canada, where it seems a bit harder to find wigs and things without going into one of the specialty stores in Toronto, but maybe I just haven't been motivated to look much.

    Interesting that a few of us are doing intermittent fasting. I've been doing 13-14 hours regularly but so far max out there because of cream in my morning coffee. I tried a trial run of the fast mimicking diet for the past two days and it seems manageable, although I know that may change during treatment. If it lets me get away with less steroids, that alone will be worth it, and if there's any chance it helps enhance the chemo's efficacy I'll take that chance too -- my pathology is ridiculously aggressive.

  • Cinderella57
    Cinderella57 Member Posts: 6

    Hi,

    I'm starting in September also. Found out yesterday. Crying randomly and very scared. I keep hearing the words in my head "I don't want to do this". I guess if we weren't scared that would be pretty unusual.

  • Cinderella57
    Cinderella57 Member Posts: 6

    I will be getting Taxol also. Does it ALWAYS cause hair loss? My husband wants me to wait and see but my oncologist just straight out told me that it will cause hair loss.

  • Cinderella57
    Cinderella57 Member Posts: 6

    Is your doctor allowing you to continue to go to work? Mine says I can only work if I can work from home which I can but wish I could go into office.

  • 1982m
    1982m Member Posts: 224

    Hi Cinderella57,

    I’m sorry your joining September club. It sounds like you have a lot to take in just finding out. I found out I needed chemo July 21st and am so anxious to get started.

    I work from home but I’m feeling like I don’t want to work. I’m all over the place. I haven’t seen my oncologist yet until I know for sure my final pathology- so they said I would get an appointment pretty soon after my pathology is in since I’m already referred and chemo would start soon after. I’m hoping they write me off work.

    Have you considered or looked into cold caping? Maybe that would be the right choice for you if your really worried about hair. There is a weekly Taxol group that’s active that could tell you more about that regime.

    Again, sorry you found yourself here.

  • Cinderella57
    Cinderella57 Member Posts: 6

    I'm thinking about the cold capping but it seems after reading posts that it has mixed results. Seems like a lot of women still lose their hair. I'm going to work from home...doctor's orders but honestly I'm with you. I can't seem to find the energy and focus to WANT to do my job. It feels like having cancer is enough work and I've only just had surgery so far!

    Good luck to you. I hope that you get through chemo without too many issues and that it does what it's supposed to do.

  • Cactushouse
    Cactushouse Member Posts: 8

    I also am starting my Chemo journey on September 7th. Taxol and Herceptin for once a week for 12 weeks and then Herceptin for an additional 40 weeks. Radiation every day for a month once the Taxol is complete. I am nervous, scared and anxious but also can't wait to begin the journey , to get closer to the end of treatment. I don't know what to expect- do most people have some sort of reaction to these drugs? Is hair loss a for sure thing? I am all over the board with emotions- and can't seem to really accept that this is going to happen. Any insights welcome.

  • swimgal
    swimgal Member Posts: 60

    Cactushouse, your treatment is identical to mine. Sorry you have to join us, but welcome. Had 6th Taxol treatment yesterday. You may find the weekly Taxol group and cold cap users group (to prevent/minimize hair loss) useful.

    Yes, it's hard to wrap your head around all this, but I found this site to be extremely helpful. Remember, one step at a time.

    Blessings.

  • HummingbirdAZ
    HummingbirdAZ Member Posts: 93

    Morning Everyone. I had my port surgery yesterday and feel pretty sore today-more than I thought. I now have 5 incisions to wreck any future swimsuit competition! I also got my confirmed chemo appointment for next Friday. 5.5 hours in the chemo chair???? OMG. I'm even doing the labs and oncologist appointment the day prior, so that means every chemo day is pretty much all day going forward.

    My daughter gave me a vitamix to use while going through the chemo so I can try to stay on my keto diet. I'm not sure if it will help to drink smoothies instead of eating real food but if anyone has suggestions of what to prepare without sugar, would love to hear them!

  • Forever_fitt
    Forever_fitt Member Posts: 4

    Two (2) questions for DigniCap users only:

    1. I have my DigniCap kit and have tried on the cap without the liner. I was planning on using wired earbuds to listen to movies on my iPad (and not disturb the other patients). (Everyone says that Netflix saves the day during their sessions, and I assume that each patient doesn't blast the volume on their personal device or the TV in front of their chair). The buckles on the DigniCap are inconveniently placed over the earholes, and the buckles may put undue pressure on the earbuds (even though my earbuds have very soft cushions). If you are a DigniCap user, how did you listen? (Or did you use closed-caption). I've heard that the refrigeration machine can be loud and annoying, so that's why I'm approaching it this way.

    2. Can I use dry shampoo while going thru chemo while using Dignicap? If yes, would the use of dry shampoo count as one of the 2 allowable washings per week?

  • oldladyblue
    oldladyblue Member Posts: 302

    I am assuming that I will be starting chemo this month. Sobering thought, as I've been a fan of health food stores, vitamins, avoiding medicines, avoiding toxins, eating sensibly, little alcohol, etc. for most of my life. Now, it seems odd for me to be fending off well-wishers in my life who say I shouldn't do chemo, but something alternative, so I don't poison myself. I know they mean well, but I think it's best for me to follow the doctors' advice. Thank you to those on this thread for posting so I don't feel so alone.

  • HummingbirdAZ
    HummingbirdAZ Member Posts: 93

    I hear you, oldladyblue! I've never taken any medication in my life so this deep dive into big pharma has thrown me for a loop. I very much feel out of control but also feel like you, that I need to do this (at least once). I guess the alternate ideas might come into play if chemo does not work....hang in there and just concentrate on what you need to do to get back to normal.

  • WC3
    WC3 Member Posts: 658

    HummingbirdAZ:

    I wasn't initially thrilled about the idea of putting toxins in my body either but most of your healthy cells can tolerate the chemotherapy better than the cancer cells. Once my chemotherapy got underway, I felt a lot less anxious. I envisioned the cancer cells dying and felt like I had some control over the situation.

    Chemotherapy wasn't fun but more tolerable than I envisioned it would be.

  • 1982m
    1982m Member Posts: 224

    Good luck on your first infusion tomorrow HummingbirdAZ! I hope it all goes well.

    Today was week 3 from surgery and still no pathology. A person I know who had surgery the Monday before me got their pathology today so I’m hoping by Tues I’ll have it. Ready to get the show on the road!


  • K-Gobby
    K-Gobby Member Posts: 144

    I get taxol then carboplatin. I am asking the doctor tomorrow with my 4th infusion why 12 in 12 weeks. I look to not have anything noted anywhere but in my breast. A Pelvic ultrasound monday that showed a cyst, but nothing else. Chemo started for me August 14th on a Saturday. All others are on Fridays. I see many of you have 4 hours? I had thought that was mine, but my wait in the waiting room is usually an hour till the actual infusion and VAD wait. The infusion is one hour plus 30 minutes. 2 hours in the seat. Immediate tired with the med they give and by the time I leave, the tired wears off. I pray all of us go through each one the best possible.

  • DebbieM1958
    DebbieM1958 Member Posts: 105

    Good morning, I am new here and recently diagnosed with Triple Positive BC. I start my chemo on Sept. 9th. Got my port placement done yesterday, a little sore today but not too bad. Nervous about the effects of chemo but ready to get this going so I can look back on it in the rear view mirror. I have 18 weeks of chemo, each infusion 3 weeks apart. Looking forward to hearing from others who recently started, and sharing progress stories. I am a 63 year old female in California. Like everyone else my emotions are all over the place, but trying to stay super positive for me and for my hubby/adult kids.

  • DebbieM1958
    DebbieM1958 Member Posts: 105

    Hi Cactushouse - I feel the same as you do - not sure exactly what to expect with first treatment on the 9th. I am getting Taxotere, Carboplatin, Herceptin and Perjeta. Nervous about potential side effects and hoping I can ace this. Hair loss sounds certain and not sure how I will deal with this but really not my main concern right now. Never thought I would be here. Fingers crossed and prayers for everyone who is going through this process for a very positive outcome.


  • HummingbirdAZ
    HummingbirdAZ Member Posts: 93

    Thank You 1982M! I'm T-minus 2.5 hours away from the first drip--have a 5 hour appointment for today's infusion. I'm going to shower and put the EMLA cream on to numb it as long as possible. Yesterday I went in for a blood draw and the first time through the port. It hurt more than I thought but she said it was the first time and will get better. I'm wondering how it will feel after the needle being in there for 5 hours...

    Yesterday, the oncologist went over all the potential side effects again, which was depressing, but no one typically has all of them. She said whatever occurs after the first one will be "my side effects" and the same every time, so easier to deal with. As usual, I'm preparing for the worst so will hopefully be surprised. My son came in from California to take me and will stay for a few days, thankfully. I'll report back with my experience and pray everyone has few side effects and can rock the bald head in a few weeks!!

  • 4kids4dogs
    4kids4dogs Member Posts: 22

    HI ladies. I'm 53 years old and was diagnosed August 9th with breast cancer, ER+ Pr+ and HER2+. I guess this is the triple positive kind. I just started chemo yesterday. Was there for 8 hours. The doctor wanted to start aggressively. I feel ok today, but think my tastebuds might be changing already. Nothing tastes the same now. I will be getting chemo every 3 weeks for 6 cycles, then surgery, then radiation. I think that's my plan. Doctor said side effects usually start around day 3 to day 7. Hoping side effects arent too bad! I am at stage 1B, which i'm so thankful for. My doctor said he expects to cure me, so that helps so much with my mental health! I'm also a strong believer, and i depend on God to help get me through this also. I also have a good family support and friends. I know i'm very blessed already! They found this cancer through a mammogram. So far no other close family member has breast cancer, but i am having genetic counciling on September 17. Anyone else have that? Good luck to you all! We can do this together!!!!!

  • AnnMarie318
    AnnMarie318 Member Posts: 1

    This whole thing is scaring me to death! My port goes in a week from Tuesday and my echo will be later that week. It is all too much for me to wrap my head around. I was diagnosed mid-august and have been to the doctors offices so many times. It has my head spinning! Chemo will start the end of September and I really just don’t want to do it. As a teenager, I watched my mom going through breast cancer and chemo in the early 90s and it almost killed her. Later in life she had Alzheimer’s/dementia brought on by the chemo drugs she had. Is surgery ever an option for triple negative? I plan to have a double mastectomy done as soon as I can. I want it gone. I can’t stand the thought of it in me and also the thought of these toxic drugs. I feel like a basket case. My mom passed away a little less than a year ago and I think all of these things together have made me feel like my world is spinning out of control. Top that with the fact that we moved halfway across the country as COVID started, so I don’t have friends or family close by. I just want to be done with it all! Has anyone had their hair NOT fall out? What about horrible reactions to the chemo? I am seriously allergic to so many things that I (and my doctor) are very concerned about how I will tolerate it. Luckily my oncologist was also my hematologist so he knows my history well. Just want to be back to normal though.

  • MEandJax
    MEandJax Member Posts: 15

    Hi HummingbirdAZ, So sorry you have to go through this. I pray that you come back stronger.

    I'm scheduled to start chemo on 9/14/21. Every 3 weeks for 6 sessions, then radiation starts.

    I had R+CHOP for non- Hogkins Lymphoma in 2015/2016, (every 2 weeks for 6 months). The common med with breast cancer chemo is Adriamycin (aka Red Devil) so I am getting a different regimen than some.

    I've not had a port so am no help there.

    One important thing with Chemo for me is kick the nausea ahead of time. It was a rough road but I made it and plan on making it through this too.

    I am not sure anyone can really be prepared, just remember after each session that's one less treatment left to go.

    ME



  • Mithz
    Mithz Member Posts: 1

    hello

    I am 48 diagnosed with IDC grade 2 triple positive so would begin with Chemo plus Targeted therapy anytime soon. I am in for second opinion so exact date not in ...also wont put a port cause one am type 2 Diabetic and two get infected quite quickly.

    Irony is my tumour just sprang suddenly and I noticed it only cause my left nipple had blood discharge.which now has changed to yellow/green colour

    I so don't want to open my eyes to what lies ahead...I hope to get the strength to move on with this cause my tumor has blown to 10cm within 45days...and PET CT shows 2more tiny mushrooming on the aux

    Reading through this forum does give strength of not being alone and sharing the same kind of feel.

    Thank You and good luck to US

  • JHam
    JHam Member Posts: 1

    Hello-

    First time poster. I was diagnosed with DCIS in 2011 at 40. Had lumpectomies (3) for clear margins and radiation. New diagnosis July 2021 of IDC located in my lumpectomy site. High grade, ER/PR+, HER2-, 50% ki67. 2.5 to 3.5cm. One known positive lymph node. I don't have full staging, yet. Treatment will be AC + T, dmx, proton therapy, and Tamoxifen or AI. Rebuild will be DIEP. I started Chemo on Monday, August 30th. So far so good. I have had very little nausea. The worst part was the steroid. I was so jittery and jacked up that I couldn't type or concentrate. Even watching TV was difficult. I had to take some anti-nausea meds yesterday (Zofran), but rode my Peloton, had friends over for dinner, and had a pretty normal day. I did have to take a nap after my workout :) I was extremely worried about nausea, as I was very sick with both my pregnancies. I am so glad this round has not been bad.

    I am gearing up for the hair loss, which will likely come the end of this week. I have some wigs ready to go. What is everyone doing about eyebrows and eyelashes?

    Good Luck to those who are starting this week!