Come join others currently navigating treatment in our weekly Zoom Meetup! Register here: Tuesdays, 1pm ET.
Fill Out Your Profile to share more about you. Learn more...

Starting Chemo August 2023

Hey All, If you're starting this month, please let's join together here! 🤗

«134

Comments

  • moderators
    moderators Posts: 7,685

    @cindylou416 Created for you by request from your lovely friends on the April thread!

  • cindylou416
    cindylou416 Member Posts: 33

    Hi all

    Thanks for this! You guys are so awesome

    I am scheduled to start chemo in Boston next Tuesday. Very nervous cuz i want this to work and go smoothly with no allergies etc. or delays

    Just met my oncologist today, shes amazing and im glad to have her. Our meeting today took over an hour, soo much information! I just had a series of updated tests Tues: u/s showed 1.3 cm, and clear nodes MRI however showed 2cm so that’s the size they are going with for trtmt. Because i am right at the 2cm cutoff, they are going to do chemo first plus immunotherapy to kill off the tumor. Then surgery will be after that

    I have a trtmt once a week for 12 weeks to start (Taxol and carboplatin) Keytruda once every 3 trtmts i believe

    Anyone who is newer to chemo or just starting out, lets keep each other company through this journey❤️

    Cindy

  • fireflyhill
    fireflyhill Member Posts: 27

    Hi, Cindy,

    I am so glad to see this August group start. Ive been lurking all summer after 5/2 diagnoses. I had surgery (partial) in June and was to start Radiation in July….but grade 3 tumor and high risk Mammaprint sent me to chemo first. Had first attempt of Taxotere/cytoxan on 7/31 and had a SEVERE (rare) reaction to Taxotere so had to stop immediately. MO changed me to AC(4treatments-3wks apart)….which required a ECG and port (I didn't have)…so more time delays getting those procedures. Finally had first AC on 8/9, barely made the 8 wk recommended timeframe. Since diagnosis it has seemed very drawn out with ups and downs that I'm thankful to feel like I'm moving forward again. So, 9 days past 1st dose and Im doing okay. I see your treatment course is different but it will be nice to have a buddy support group. There must be others too and I hope they chime in.

    We Can Do This!!

  • njdogmom
    njdogmom Member Posts: 181

    Greetings! So glad to see an August thread started and happy to see two of you here.

    Just stopping by to cheer you on. You can do this! You'll have an amazing team of infusion nurses who will take great care of you, an oncology team monitoring you every step of the way and you'll have each other. I can't say enough about how much the near daily check ins on our thread helped me get through this. Candid chemo buddies are the best! I wish you the camaraderie, support and friendship that we experienced. ❤️ We were just commenting in the April thread how the months have flown by. It didn't feel that way in the midst of those days but here we are. Millions have gotten through this before us. You can do this! 💪

  • ms meow
    ms meow Member Posts: 6

    i started chemotherapy I July. 4 infusions 21 days apart. My third is next week.
    First round I had intense bone pain day 6 after infusion. Taste blindness, fatigue and headaches.
    Second infusion-taste blindness for a week, aches, slight bone pain, brain fog, headaches and increased fatigue.

    I had no clue losing my hair would actually ache and my scalp would hurt. I had but my long hair to a short bob before chemo. It took a couple weeks before it started coming out in clumps. I shaved it with a #4 guide. The next day it was coming out in the shower. My hands were covered in gobs of hair. I shaved it. Now I’m just stubble. Some is light and some is dark. I thought it would be smooth by now. Hmm. Kooky.
    I like going hat free but wear these great bucket hats my friend made me. They’re so lightweight! She used fabric I picked and I love them to shade from the sun.


    I thought I’d lose weight. I have gained and I’m puffy. I’m uncomfortable in my skin.

    Despite all the icky I’m really working on keeping a good attitude.

  • cindylou416
    cindylou416 Member Posts: 33

    thank you dogmom, so nice of you to set us up and check in! I am so grateful to have a little group started just as im about to embark on this journey of the unknown.

    Fireflyhill and ms meow- so great to meet you both! I know what you mean with the time delays Oh my Goodness! Meow, love your hats- very fun and functional

    I just made my appointment with a local wig shop- just gonna let them shave off the hair and fit the wig before i have to deal with it, no thanks. and also I’ll probably get a couple of baseball hats with a ponytail for around the house

    Looking forward to sharing our experiences! I will be hopefully starting treatment on Tuesday, August 22 if everything goes well with my insurance approval. I will be getting Taxol, carboplatin, and key Truda, at DanaFarber in Boston. There’s so many hoops to jump through before getting things started, it makes me crazy. I had to get an MRI, another ultrasound, another mammogram, and now I have to go to the dentist Monday and get a filling before I start chemo.

    I was diagnosed on7/24, sought a second opinion. Glad i did because the second opinion offered me a chance to combine immunotherapy with my chemotherapy, since I met the criteria of tumor size (2cm) which was picked up by MRI - US showed 1.3cm

    I will be on chemo once per week for 12 weeks to shrink the tumor and hopefully get rid of it completely. Then I’m on a second set of meds (AC) every other week for eight weeks (keytruda every 3 wks for the entire duration) then surgery 4 wks after that

    I think i will be finishing up right after the new year

    Gonna buy a large calendar like someone else on this site had posted about, and mark off each treatment with a big X so I can see my progress and stay motivated👍

    If you gals have any tips to share sbout prepping for day #1 or anything that helps you get through it better please share!

    Talk to you soon

  • iamnobird
    iamnobird Member Posts: 229

    Just stopping by from the April 2023 chemo thread to cheer you all on! You can definitely do this. I just finished my chemo (9 weeks of Paclitaxel, 3 EC chemo) this last week. It seems like an endless road when you first start out, but goes somewhat quickly once you get into the routine.

    I can’t tell you how much I have appreciated our April support group. Definitely lean on each other. It is so helpful to have friends going through the same things. We saw each other through hair loss, all sorts of fun side effects, plus plenty of small triumphs and wins. ❤️❤️♥️

  • fireflyhill
    fireflyhill Member Posts: 27

    njdogmom and lamnobird- thank you for your support. You April Ladies have been rocking it and providing much encouragement to all. 💕

    ms meow—I love those hats. What a good friend to make those for you!

    My post treatment sides have been similar. Bad mouth taste/feel, nausea/queasiness, fatigue, bowel disturbances (both ways), dripping nose and sometimes watery eyes…just general yuk. Have 2 minor mouth sore to day even with using the salt/soda rinses. Even on Claritin, I had very bad lower back pain on day 8. It came on very sudden and lasted a day. I am not sure if was from the AC(post day 8) or from the rolvadon injection(day7) but I was not expecting it that far post. I am afraid to stop the Claritin now. I also have had some sleep disturbances. So far, everything I have experienced is on par with expectations.

    I am somewhat terrified of losing my hair. I had very long hair, and Just a few weeks after my DX, decided to cut it to shoulder bob and donated my hair to Wigs For Kids. That seemed best with my breast and lymph sx on the right side and I am right handed.. Made my post care easier. Now that I know I will most likely lose my hair, I have even more space in my heart for those kids that need real wigs. 💔 I have yet to find a wig I like or looks good on me, but I bought one with a short hair style(so unlike the past me) just so I have it. So far my head hair is staying put…..but my thighs are strangely smooth and I have a weird missing patch down, under south of the border area, so it is not looking good😔YIKES!

    cindylou-drink plenty of water/fluids pre and post treatments. I felt sorta hyped up the day of and next day of treatment from the IV premeds(steroids). On day 3 I literally could not get out of bed. Everyone is different but I keep telling myself: Take One day at a time…..and Each Day, take One hour at a time….as I find how I feel can change on a dime.

    ms meow and cindylou—-looks like you both will get infusions this week. Good luck and keep us posted. I will be thinking of you and sending all the good vibes. We can do this! We are kicking cancer to the curb, We are💪!

  • red_lioness
    red_lioness Member Posts: 9

    Hello all,

    I am starting chemo tomorrow. Begin with 12 weekly Taxol rounds before AC. The last few days are up and down with the anticipation and preparation. I feel so lucky to live in a time where we can be so connected to many other people going through this same process. Thank you all for sharing.

  • fireflyhill
    fireflyhill Member Posts: 27

    Welcome red-lioness- hope all goes well today. Will be sending all good vibes your way.

    cindylou and ms meow- hope your treatments go smoothly. check in when you feel up it it.

  • cindylou416
    cindylou416 Member Posts: 33

    Hi everyone and welcome red lioness -happy to have your company 😊. I am also on 12 weeks of Taxol/Carbo then 4 rounds of AC. Let us know how your first one went. My first was Tuesday, what a long day! Between the labs, setting up the IV, getting the premeds, doctor consults, and the infusions are slower the first couple times we were there from1145- 630. With a 1 1/2 hour ride home.

    Feeling ok but having some digestive issues today.
    Firefly- i hear you on the hair, I am also terrified. My hair has always been long and I have always gotten it highlighted at the salon. I have an appointment August 31 to go get fitted for a wig and get my hair trimmed off gosh I can’t believe I’m saying that. 🤦🏻‍♀️but it’s temporary remember that.
    Regarding the steroids, I had a consult with the pharmacist at Dana-Farber, and she told me i should take 4mg of dexamethisone when i wake up for two days following my trtmt(not sure for how long though so i will have to circle back with her )

    I have done this and it has helped because I feel good and I’m not nauseous. Im concerned about how i will feel tomorrow and the remaining 3 days before next treatment


    here is a pic of my vacation to Wells Beach, Maine July 24th First day of vacation- you cannot tell i had just received a phone call from the breast center advising me that i had breast cancer. It was a difficult week

    Looking forward to hearing from all of you

    Have a safe and comfortable night❤️

    Cindy

  • red_lioness
    red_lioness Member Posts: 9

    Thank you for the warm welcome!

    Yesterday went ok. Lots of waiting for and between appointments. Not as smooth as I would have wanted, but the first one is done. I fell asleep hard last night but now up with the insomnia.

    Feeling queasy, sour stomach, slight headache, and my ovulation spotting started with more than normal. That was a bit disturbing. I am staying hydrated.

    I started attending a virtual qigong class and I will be heading to acupuncture this evening. Meeting with the oncology nutritionist next week as well.

    Addressing the hair loss, I distract myself looking at wigs and turbans. I have never not been a red-head so this feels like a big opportunity, during a miserable situation.

    So thankful for this group.

    Betty

  • rugger11
    rugger11 Member Posts: 9

    Hi everyone. I started chemotherapy (TCHP) for IDC stage 2b HER2+,ER/PR-, grade 3, last week. I'm having a really rough time with the side effects. I have baseline GERD which has just been very severe since day 2 post treatment (taking prilosec). I'm nauseous pretty much all day and have loose stools so having a hard time staying hydrated. I had IV fluids a couple days ago, which felt like they just went through me. I'm just so surprised at how long the side effects are lasting. I've been taking Zofran for the nausea, however its not really helping. I started immodium yesterday to help with the loose stools. Right now I'm feeling discouraged as this was my first of six treatments and from what I hear sx compound as you progress. If anyone has any other suggestions on how to deal with the nausea I'm willing to try anything at this point! I have a 20 month old and I just feel like I'm having a hard time being a good mom right now which has been devastating. I am usually a very independent and strong person, but this has really knocked me off my feet. I'm trying to stay positive but this first round was a lot harder than I thought it was going to be. I'm sorry if it feels like I'm just complaining. I'm just used to being able to figure things out on my own to help myself, but I can't this time.

    I am happy I found this group, definitely makes me feel less alone in this!

  • moderators
    moderators Posts: 7,685

    Hi @rugger11, and welcome to our Community. We're so sorry for the reasons that bring you here, but we're really glad you've found us! You're sure to find our amazing members a wonderful source of encouragement, advice, information, and support — we're all here for you!

    You're sure to get some great answers here as we know others will be by soon to offer some advice to you. In the meantime, we wanted to point out these pages from our main site on managing nausea:

    Also, some of our members have had great luck with Enterade — it's a plant-based medical drink that helps with GI issues of chemotherapy treatment. They even offer a reimbursement program to help offset costs!

    Also, many members find medical cannabis and ginger as good alternatives to helping them through nausea.

    We hope this helps you get started with finding some relief. Let us know if there's anything else we can help with and welcome again!

    —The Mods

  • fireflyhill
    fireflyhill Member Posts: 27

    Hello rugger-11 welcome to the August group. Be sure to let your medical chemo team know how much trouble you are having with the gerd and nausea. I assume you already have but I'd say do not let up on keeping in touch with them.

    From my research it looks like every chemo center seems to maybe do everything a bit different….but my center had me do an intense 3 day minimal nausea alternating regimen of Zofran and Compazine so that I was taking something about every 4 hours. It seemed to keep serious nausea at bay for me. I was given 2 different IV meds for nausea as premeds prior to my infusion so I'm sure that helped as well. I am on A/C so not suggesting yours would be the same, but just that it sounds like you need a different approach with your medicine. There are all kinds of different meds for nausaea so Hopefully your chemo team can change some meds around to help you.

    I have been very depressed last day or 2 as my hair is now coming out by the handfuls. Tried to prepare myself but it is still emotionally draining and sad. Having read your post, my heart goes out to you and I now know that going bald is a nothing burger compared with trying to care for a toddler and being nauseous and sick. I know that must be very hard for you.

    I have tried to maintain a positive attitude also . I have at times employed the "fake it til you make it" approach too which is not my personality at all. Truthfully tho, I find the positivity waxes and wanes and sometimes I just have to cry, vent, and let the horror out. You have no need for apology here. This is our safe place where we can whine, complain and cry as well as cheer each other on and celebrate the positive moment. I wish I could help more. Virtual Hugs! We can do this!💝

  • katg
    katg Member Posts: 206

    I will just add a few thing…I had 12 taxol/carboplatin. I put a bracelet on for the first 6 infusions and took one off for the last six until there were none.

    Come here and share it all. Nausea, poop issues, eating and hair loss. I wanted to say i too had long hair, cut to my shoulders after the first chemo as our positive image stylist at COH suggested. Then real short a week later. Clumps are scary, but know, hair grows back. And your hats ms meow, I have about 20 already like that and more. I got beanies for my bald head at headcovers.com. Soft and feel very good on the scalp. The website and more are fun to look at ….if you have a friend to make them? Bonus!!!

    You can do this a day at a time…….

  • red_lioness
    red_lioness Member Posts: 9

    I am so sorry you are going through this rugger11. You are not alone. I hope your care team will be able to assist you with these miserable side effects.

    I was not expecting immediate fall out from yesterdays treatment, but I was sequestered all day with a migraine (haven't had one in many, many years). My mom is flying back to the east coast tomorrow and I am sad to say goodbye to my nurse mom who has stayed with us through my surgery, port placement, and first chemo.

    I hear you on the staying positive fireflyhill, it comes and goes, flames and flickers.

    This Irish blessing comes to mind for this journey we are on.

    May the road rise to meet you,
    May the wind be always at your back.
    May the sun shine warm upon your face,
    The rains fall soft upon your fields.
    And until we meet again,
    May God hold you in the palm of his hand.

    Betty

  • suckitbc
    suckitbc Member Posts: 19

    Hello all-I too just joined the August treatment group. Unfortunately this is my 2nd time, ummmm thank you BRCA1?!? In 2013 I had a bilateral mastectomy and ACT. I stupidly thought all that torture would mean no more cancer. I mean, how can one get bc again when they haven't had breasts in 10 yrs?!?!? Well apparently you can. New diagnosis came this May. At first I was told surgery and then radiation, but after the surgery in June the pathology report showed high grade triple negative receptors and a tumor board consisting of 20 oncologists agreed CMF chemo 6 mos, then radiation 5.5 wks, then Lynparza for 2 yrs. What a punch in the gut! I started chemo 8/16 and am already having a tough time. I was told days 3-5 would be the toughest and I felt like I had a virus but it was manageable, mostly just achey. Then day 8 I started puking, diarrhea, stomach pain, couldn’t eat/drink, migraine, my GERD was out of control, insomnia, and the body pains-ughhh. Luckily I felt more like myself today but I could barely walk when I woke up this morning from the muscle fatigue. I already feel like I aged 20 years. I can’t believe what a long road lies ahead. This really blows, but I’ll try my hardest to stay positive and take it 1 day at a time. Feels good to vent!

    I want to say to all you ladies that are sad about losing your hair, I had really long hair my whole life. However, when I lost it 10 yrs ago it was actually nice and freeing to not have to worry about it. I know how important hair is to women, but it will grow back and while it does you get to have a bunch of different hairstyles you never would have tried otherwise. And the options are endless while still in treatment whether it’s wigs, scarves, etc. My great aunt had Lymphoma a few years ago and wore a green wig to symbolize it the whole time. Try a pink wig! Besides, hair doesn’t give warriors their ability to fight, that comes from within. You are all beautiful no matter what’s on your head!

  • cindylou416
    cindylou416 Member Posts: 33

    hi everyone

    4 days out from 1st trtmt- last night woke up 4 times, felt nauseous. I should have taken the before bed. Had bad dreams all night too. Todsy i have a sore thyroid gland(i am on meds for hypothyroidism). So i left a msg for doc in the portal.
    i ordered a hairpiece that u can wear with a baseball hat from headcovers.com. Trying to stay ahead of this


    katg- love the idea of the bracelets!! I really want to do something like that to count down😊

    welcome rugger11- glad you found us and sorry for your difficult times. Trying to be a mom to a young child requires so much energy and focus, i cant imagine juggling that with the self care you really need. I find that one small win at a time will keep us moving forward to where we want to be which i believe is at a place of normalcy again. We will get there one day at a time with the support of our group here and our friends and loved ones not to mention our own inner strength

    suckitbc- welcome and so sorry you have to go through this again❤️‍🩹. I also have tnbc and i am doing chemo 1st then surgery then radiation. Im glad youre feeling a little better today hopefully you have some good meds in your arsenal where are you getting trtmt?

    No doubt its a hard road -i keep hearing how important gratitude and positivity is right now. I know I want to look way ahead and have this just be over but since it’s going to take a while, I feel it’s more productive to be present and any good and happy moments that we can embrace or enjoy in the moment will help distract us and get us closer to that goal. I know that I have to prepare to be somewhat of a hermit this fall and winter, staying away from the germs and people and crowds. I don’t think it’s going to be easy but it’s so necessary. I feel that I just need to make a solid plan and stick to it and I can get it done. We got this👍

  • suckitbc
    suckitbc Member Posts: 19

    Hi ladies! Can someone please explain why I have been told repeatedly that I would be soooo tired and yet I have had insomnia since treatment began? Thank goodness for streaming tv!

    Cindy-I live in central NJ and receive tx local to my home, although those 20 “2nd opinions” I received were from MSK in NYC and I consult with an oncologist there as needed. TNBC is an aggressive beast. In addition to my current one, both of my tumors were also TNBC in 2013. I guess that’s why they are trying to be aggressive with the tx. I will say that they have come a long way since my first time, we definitely have more options now. What kind of surgery will you get?

    I just wanted to recommend a tip that I learned during my first diagnosis 10 yrs ago, STAY AHEAD! Stay ahead of the pain, stay ahead of the nausea. Don’t wait until you're nauseous to take the meds, just take them. The same goes with pain such as after surgery. Don’t wait to see how bad it is, be preventative. You got this!

  • cindylou416
    cindylou416 Member Posts: 33

    Hi everone happy Sunday

    thank you suckitbc for sharing. Looks like you were ned for 10 years and now, like you said, more trtmts are available to us. I look forward to all of us helping each other through this. I had a bad night last night, pretty much my own fault. I didn’t know if I should take Advil or Tylenol for my headache so I took nothing and my head throbbed all night. I also am not sure how to use my Compazine so i havent taken any yet - Is that some thing you just continue to take as needed or just for a couple days after treatment ? I had some sea bands from when I was pregnant so I wore those to bed last night and they seemed to keep things in check. I will definitely be addressing these questions when I go in for my infusion on Tuesday but I’m curious to know what has worked for you.?

    Also, since we are all early in our trtmt plans, are you all still visiting public places or are you thinking of scaling back? Who is still going into work and what do you do? I work in office/ boss is letting me remote for duration of trtmt

    My treatment plan is 12 weeks of TC with keytruda every 3rd week, then four rounds of AC with keytruda every 3wks, then surgery. Dr. King said it would be a lumpectomy and then radiation.
    I’m trying to find ways to get through this period of time, (aren’t we all!) and my plan is to think about spring, planting my garden, going to the beach…. but at the same time I want to live in the moment and enjoy everything that’s right in front of me so it’s going to be a balance. I really want to drive to the beach and just walk and process… i hope everyone has the best day possible.
    cindy❤️

  • cindylou416
    cindylou416 Member Posts: 33

    Hi everyone

    Please share what type of activity if any you are able to manage regularly - walking? Yoga? Stretch?

    Thank you

    Cindy

  • red_lioness
    red_lioness Member Posts: 9

    suckitbc, the insomnia is such a bitch. They at least warned me about it upfront from the steroids. Quick question, do you know why some are reviewed by tumor boards and others are not? My aunt thought mine would be, but then I did not hear my surgeon or oncologist talk about this.

    Cindy, I am so sorry to hear about your difficult night. I was told I could use Advil/ acetaminophen as I normally would. I was instructed to use zofran, compazine, or ativan at very first sign nausea and rotate as needed. My first treatment day was thursday and I used at least one antinausea medication friday-sunday. It is difficult to want to take medicine when I still feel like its "not that bad."

    Since I am starting treatment with the Taxol ( I am not familiar with the other treatments you are getting, I will have to read about them) , I am still going to public places. We will see how long I will want or feel comfortable with this. I am already noticing some underlying OCD tendencies to be creeping up in these situations. This leads me to believe I will not feel comfortable come winter.

    I have my own business (taxidermist and entomology artist). I have not done any work since diagnosis. Between all the tests/scans, surgeries…. I haven't had the mental capacity or physical energy to devote to my work. I am hoping to find a way for me to create and engage with the part of work that is fulfilling to me through this difficult time.

    I had my DMX end of July which is to be followed by 12 taxol, 4 AC, before radiation, and estrogen blockers.

    I am with you on thinking about spring and the beach! The air quality has been awful here in the Puget sound region and I desperately want to drive to the coast to walk on the beach. Also planning on a spring family vacation to look forward to.

    As far as activity, I am an athlete and have been trying to build back a little post surgery. Started off walking, yoga, resistance bands, riding indoor bike trainer, and 4 weeks post surgery I was able to get out on a little jog. I was told I would be allowed to swim after I healed from port surgery. I am looking forward to the gentle resistance of the water on my upper body. Since I typically am very active or following a training plan, not being able to do my normal movement has been another layer of stress. Now, I am setting smaller, everyday goals to complete. I typically am racing my bike every weekend starting September-November 😭. Not this year! Cindy, what are you feeling comfortable with as far as activity?

    I know you all understand on life feeling like it is put on pause or the rug being pulled out. I still can't believe all that my brain and body has been through since I received my first (and only) mammogram at the end of June. It is too much to be able to process.

    I hope you all take care and have good rest,

    Betty

  • katg
    katg Member Posts: 206

    Red lioness,

    I agree. For Nausea, I was told by an infusion nurse for the 3 day-4 days following an infusion, to rotate Zofran and Compazine every 24 hours. It worked. Only when i thought i felt fine in those 4 days and did not take the med, did I feel nocuous and thought crud. I took the pills as suggested for all 12 weeks. Just remember a laxative.

    Those 2 drugs will stop you up.

  • fireflyhill
    fireflyhill Member Posts: 27

    Good evening all! I am a bit tardy in posting but…

    Welcome suckitbc, how dreadful for you to have to go through this all again. I agree with your tip to stay ahead of any sides as much as possible. I have been trying to do that as I just have a mental block about taking medicine but I took it anyway and I think it really did help to stay out in front of it.

    I try to walk some everyday. I did better the first 12 days post infusion than this last week. I am now tracking my steps as I keep reading how important it is to keep moving even if all you can muster seems small. I am NOT an athlete, far from it, but I have been thinking about trying to do some video exercises, yoga, and strength training. For me it would be a level 1. Red-lioness- I had to look up what qigong was! so interesting, hope you enjoy that. I watch Marina Blackford youtube channel some. She is inspiring in her fight against BC, so positive and active. I think she ran the Boston Marathon not long after her dmx.

    I have been mostly staying home and out of public. My WBC was very low 1 week after my infusion. It should be fine now from the injection kicking in last 2 weeks. I was all excited expecting to have my 9y and 6y grandchildren stay the weekend with me but my grandson caught a bad cough at school last week and was sick. I was so disappointed I didn't get to spend that time with them. Now, I am 90% BALD and I am just sick about how I will look next time I do get to see them. Will be 2 weeks more now before I can see them, as I get next treatment on Wed and will be out of commission this coming weekend.

    The last 5 days have just really been hard for me. I have lost nearly all my hair in just a few days. I don't know why but I thought it would be a slower process. NOT!! My hair is not super thick so maybe that is why it gave up the ghost so quick. My scalp is very sore and I don't think I will be able to wear my wig on treatment day. Will have to wear a headwrap, ugh. So far, all of the head covers I have ordered look totally ridiculous on me. Maybe I need a different type of mirror, LOL.

    Losing my hair and not getting to see my precious grandchildren dropped my spirits very low. I am trying to pull myself up out of it before my treatment day after tomorrow. No good wallowing in self-pity.

    rugger- how are you? I hope you are feeling some better. Check in whenever you can.

    Hope everyone has a good day tomorrow.!! We Can Do This.

  • suckitbc
    suckitbc Member Posts: 19

    Hello all,

    Love all the encouraging words and insight!


    redlioness-Regarding your tumor board question-I was just lucky that the oncologist I met with was going to attending a tumor board the following day and it was going to be run by an authority on BRCA so she was eager to present my case. I’m so glad she did because I got a large consensus on my treatment plan. However, I don’t know how common it is.

    Fireflyhill-sorry you’re feeling down about your hair and seeing grandkids. Warriors get robbed of so many things. At least we live in a technology world and you can FaceTime/Zoom the kids sometimes. Good luck with your next tx.

    Cindylou-I have to started to pull back from public places. Since the side effects are cumulative and we grow more immunocompromised I’d rather be safe than sorry. During my first chemo experience I pretty much hibernated except for going to doc appts. and was able to avoid getting sick (outside of the chemo stuff of course). That was pre-covid and pre-having germy kids for me, so now I feel like I have to take extra precautious. At least in NJ right now the weather is still beautiful so there are still things I can do outside for the time being. Also, as far as exercising, a little bit if walking is all I can muster right now. For the nausea-This round I took the zofran on days 2-6 and didn’t have any nausea…until day 8 when I puked and had 45 other side effects! I don’t know about you ladies but my onco nurse said days 3-5 should be the worst days, but that wasn’t the case. Hope it’s not my norm.


    I am about to be 2 weeks out from my first round (round 2 is next wk). This was a very challenging round for me and at this rate I won’t be able to tolerate the next round let alone 7 more. So I reached out to my onco and he told me to come in tomorrow to tweak the meds. I’m sure he’ll add more steroids and maybe even change the dosage of the chemo drugs. My point in telling you all this is that any form of suffering should be communicated to your oncologists because they probably have a lot of tricks up their sleeves. Don’t suffer in silence! My body is telling me I can’t have this same experience again and again. Listen for what your body tells you!

    You’re all rockstars!

  • cindylou416
    cindylou416 Member Posts: 33

    great insight suckitbc- thank you so much for sharing your experiences and wisdom and saving us some unnecessary suffering!

    I want to share….. for those of us that are having neoadjuvant treatment, I am completely turned off by the fact that this cancerous tumor is still inside my body, and I have a really hard time acknowledging my right breast. I wear a sports bra to lessen the chance that I will bump into it and feel it by accident. When I take a shower, I don’t want to touch my breast. It just mortifies me at times, I keep wishing that it could be taken out already and the thought of waiting another 20 weeks just doesn’t sit right with me. I pray that the treatment works. I wonder if any of you feel the same?

    Cindy

  • red_lioness
    red_lioness Member Posts: 9

    Hello all,

    As much as you should not have to be going down this road again suckitbc, I agree that your wisdom in this group is very much appreciated. I am glad your team is going to help you manage the side effects. When they told me taxol side effects would be 3/10 and I developed a nasty migrane- my thought was "how am I going to do this (for this long) if this is a 3?!" The mental game is so difficult.

    fireflyhill, I hope your treatment day was smooth. This entire experience is so odd. At first, I was not concerned with loosing my hair amidst all the other treatments/side effects. But now after starting treatment, I am nervous at every itch or tingle and how its going to be another layer of grief. I was feeling so positive Monday and Tuesday, and today I am so emotional with the anticipation of treatment day tomorrow. We are all with you. I am wishing you all the best to see your grandchildren asap. I was thinking of having bracelets made with my nieces and nephew's names on them to help me through this time.

    Oh Cindylou, I can only imagine. I would be feeling the same way if I still had that lump there. Once that diagnosis rolled in, I couldn't get it out fast enough. I thought for sure I was going to be neoadjuvant, but that was not the case. One thing I keep telling myself is that my care team wants the best outcome for me. I am doing my own research but I also am putting my trust in them all to get me through this.

    And on the days that are more difficult, I keep reminding myself I am not in this alone. So thank you all for being here.

    Betty

  • cindylou416
    cindylou416 Member Posts: 33

    Good morning ladies! It’s a beautiful fall-like morning here in western Massachusetts today the air is cool and dry, I went for a walk, and it felt amazing. Four days post treatment, I usually start to need my Compazine by now…. I told my husband today that I feel like maybe we could order from Applebee’s tonight, I really feel like having their grilled chicken, bacon ranch sandwich

    I wanted to share, went to the hairdresser Wednesday night and got my hair chopped from mid back all the way up to my chin. I’m OK with it I know it needs to be done and I know it’s temporary. Emerald(the hairdresser) helped me pick out a really nice wig that matched my hair. Almost perfectly, she thinned it out and I think it’s going to be good. I also bought a couple bamboo head covers from them they are very soft and comfortable and have an SPF 50.

    I would love to hear from everybody, share if you have any plans on this holiday weekend or what your current status may be. Miss meow haven’t heard from you in a while. Hope you’re doing well. Please chime in.❤️

    Cindy

  • rugger11
    rugger11 Member Posts: 9

    Hi everyone! Sorry I have been MIA. We've had a lot going on in my family the past week.

    fireflyhill - Thank you so much for your suggestions. I've met with my oncology team and we're trying to adjust my GERD medication because I/we think a lot of the nausea is being exacerbated by the GERD. So hopefully this next round we can get ahead of it a bit better. I'm so sorry your hair has started to fall out. Mine started to the last 4 days as well and you're right, even if you try to mentally prepare yourself, seeing/experiencing it is a much different process. For some reason, I decided to collect my hair and put it in a bag. I'm not really sure why, but I think it's been helping me process it a little better. I'm not planning to keep it forever, but for whatever reason it makes me feel better. Thank you so much for your compassion regarding my situation with my little guy, but don't let that minimize your feeling with your hair loss. It all just sucks. I have been using a Benadryl gel on my scalp which has helped with the soreness/itchiness from hair preparing and coming out. Thank you again for your suggestions and positivity! You're right, we CAN do this! I hope you are doing okay after your last treatment! Hang in there!

    katg - I love the idea of the bracelets! I'm going to do this now too!

    redlionness - I agree! After my first treatment, I thought how am I suppose to make it through the additional treatments if the side effects are suppose to compound as you go! Hopefully our care teams can help us manage the side effects to make it easier. One thing my doctor mentioned is that you don't really know what side effects/severity of side effects going into your first treatment, so now that we've had it, we know what to expect and can make adjustments to meds to help combat those side effects moving forward. Hang in there!

    suckitbc - I am so sorry you have to go through this a second time! I can't imagine everything you must be feeling. I'm glad to hear some of your side effects seem to be resolving! I also had long lasting side effects, it wasn't until day 10 or 11 that I started to feel a little better. I think we are on a similar treatment timeline as my 2nd round is also this coming week (9/7). Good luck with your next round! Fingers crossed the adjustments ease some of your side effects!

    cindylou- You're absolutely right about the small wins! I totally relate with wishing they could've just taken the tumor out! My cancer's also in the right breast and I definitely had some avoidance towards it. It also felt like all of a sudden it started to feel heavy like it was weighing me down on that side. It is hard just waiting and hoping the treatment is working and not spreading. It does feel like it's started to soften on that side, so that makes me hopeful! I'm also trying to go for short walks to keep myself active, but I am fatiguing much faster than usual. I felt good Thursday morning and mowed our front lawn and pulled some weeds in the garden, but I was pretty wiped out after that, so I'm just trying to stay as active as I can without overdoing it.

    I hope everyone is doing well today and is able to get outside for a bit this weekend to enjoy the end of summer!