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Chemo Starting August 2018

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Comments

  • MoonGirlJess
    MoonGirlJess Member Posts: 211

    hug-I’m so sorry you hate your wig. If it hurts you scrap it and wear a comfy beanie. We’ve all had enough pain as of late. I have no doubt you are beautiful regardless

    Liv—tinnitus? Oh, that sucks. CBD and CBG are VERY neuroprotective and cytoprotective. Max out on those. My friend (the researcher) recommended CBD and CBG to me. His mom is three years out of triple negative BC. I’m not experiencing any nerve problems as of yet and I want to continue that path. I take a lot of CBD daily and am now on the CBG bandwagon. Girl, the sound of those clippers up against my head put me in a trance. I was so empty. Out of body. I couldn’t cry. I was beyond in another place.

    I finally went out shopping with my daughter. I wore a beanie and she hated it. She wanted me to go bald. I was not going shopping with my bald head because I look like Gollum. She keeps telling me it’s cool to be bald. Meh, maybe if it was on my terms.

  • MoonGirlJess
    MoonGirlJess Member Posts: 211

    Kelley-Anne—I also stopped getting my hair done post-diagnosis. My hairdresser texted me to see if I dumped her. No. I’m just not dropping a few hundred bucks on cut and color when all that hair is going to end up in the trash next month. I cut it myself to my shoulders then buzzed it when the shedding was ridiculous. It just sucks

  • Sunshine89
    Sunshine89 Member Posts: 56

    Hey everyone, i am facing alot of head spining and foggy feelings. My first infusion was on friday, and on monday my energy level was so down today i am feeling bit better but again feeling foggy head. Can anybody give me some solution to it :

  • Livlife
    Livlife Member Posts: 36

    MoongirlJess

    I called my MO and asked if that was a side effect from chemo (buzzing in my ears), she said no. But I'm getting paranoid again. But I did stock up on my CBD spray and been using it at night, i think i need to use more!I will use the vape too when SE's shows up this week. Do you think youre recovering quicker this time from 2nd session?

  • Bostoniangal25
    Bostoniangal25 Member Posts: 177

    sunshine- hello! What is your chemo regimen? I m on TC , so on my first chemo 3 and 4 day I had feeling that I was drugged like in mental institution drugged and at some point I felt that I will pass out-I took one and a half tablet of Ativan . 1 tablet contains 0.5 of Ativan /I was so slow and could not watch my news. The nurse said it's bevause first time taking steroids - I hated that feeling . Please call the nurse and ask what is good to take! Good luck!!

  • Kelly-Anne
    Kelly-Anne Member Posts: 62

    I’m awake. It’s 1:27 and no sign of sleep. Spent all day so tired I couldn’t hardly keep my eyes open and now nada.

    Just read through posts in this group again. Thank you everyone for sharing bits of your lives, it helps to know you are there. Hope you are all sleeping soundly and will be back here tomorrow.

  • Sunshine89
    Sunshine89 Member Posts: 56

    Bostoniangle25, i am feeling exactly same you described about youself. I am no AC right now. Can you tell how are you feeling now? Did you feel better on day 5 ? and one more thing first time steriods means we will not face it for rest of the cycles ? I really hope

  • Bostoniangal25
    Bostoniangal25 Member Posts: 177

    Sunshine, so from now on back to day 5 I feel normal myself and drivin everyday so weird feeling was on day 3 and 4! After that - good, I had some issues with g I took Imodium and everything back to normal .

    Steroids should be taken with each chemo treatment, I was explained Taking the first time steroids and withdrawal after makes it worse- but now I m thinking that I felt like ubnormal dude on 3 and 4 days when I had to take them , after on day 5 I was better . So for me start taking steroid made me so bad. But nurse said every time taking steroids with treatment will improve me feeling better. It just the first dose yucky. Well, I hope she is damn right!

    I think it’s chemo itself add everything.

    And your regimen is more strong , but keep remain strong for yourself!!!

  • maiyen
    maiyen Member Posts: 25

    Hello! I will have my first TC infusion this Thursday (4 doses). I'm scrambling around trying to get everything that I need by then since I had to make my appointment date sooner than expected.

    Wishing everybody happy thoughts to get you through your treatments.

  • kwilli
    kwilli Member Posts: 94

    Thank you for the welcome Bostoniangal25; isn't it such a surreal club to be part of?!

    Kelly-Anne - one thing I KNOW for sure; hair WILL grow back. Your hair doesn't define the strong, amazing person you are. I think your strategy is awesome! We're all there holding your hand for the cut, lady. ox

    My scalp has been tingling and when I scratch it, it hurts. I'm not sure what time frame I have until mine falls out; I guess we'll see!

  • MoonGirlJess
    MoonGirlJess Member Posts: 211

    Liv—yes the second AC was so much easier to handle. Fatigue was insane but not nearly the same degree of nausea, headache, stomach ache, body and bone pain. Last Monday I had chemo, and on days 3 and 4 (Wednesday and Thursday) I just laid in bed so tired. I could eat and drink some. I started the CBG last week (CBD I had been taking) for protection against neuropathy. I also took religiously the delta 8 thc. (Delta 9 thc is the typical thc people know of, delta 8 thc is the nausea destroyer). If you haven’t found it let me know.

  • Livlife
    Livlife Member Posts: 36

    MoongirlJess

    Thanks so much, that’s a relief to hear. I have been taking the oils lately and I just finished my 2/6 today. And I hope I bounce back quick too like you.

  • MiCyn
    MiCyn Member Posts: 29

    Sunshine89 , Boston ..

    I think MOs are not all the same with steroids. I've seen many post about doing them each cycle from the beginning. In my case, they give you steroids 1st cycle only, unless you have certain SEs & need them ea time. I had so many SEs, my MO added for each cycle. I had chemo #2 today. I started steroids yesterday AM (2xdaily) for 3 days. I was dreading it. I have not had any issues this time around at all. I thought maybe it's a lower dose doing it over 3x instead of @ infusion, or maybe my body has adjusted to it. It's been OK ..so far.

    maiyen... good luck on Thurs..I hear ya bout the rushing to get everything ready for that 1st day. I was in panic mode few days before. The 1st round is the scariest. Fear of the unknown I think. All the reading about others experiences, prepping etc. did help to calm my fears a bit. Today #2 was so different. I felt completely prepared, looking forward to getting closer to the finish line. So much better it was. Prayers & positive vibes for an easy start!

    Goodnight girls! I'm beat...🤗Cyn

  • Bostoniangal25
    Bostoniangal25 Member Posts: 177

    maiyen, easy first chemo to you!!

    Micyn, sunshine , I noticed increase in appetite with steroids. My husband also was taking for joint pain some couple of years ago- I was so tired of cooking for him- he was worse than hungry pregnant lady...

    I don’t want to feel that drawsinness and druggy! And panicky ... that sucked so much!!!

    I have to take steroids for my TC regimen til the end!!!

  • Hughope1
    Hughope1 Member Posts: 116

    Hello Everyone, Please let me know if you are on TCHP (Taxotere,Carboplatin,Herceptin,Perjeta) as your treatment. I think some of the side effects are different with this treatment. From the 3rd of Aug first treatment until day 8 back in for fluids things have been pretty good. Shaved my head two days ago. Heading in for blood draw in a couple hours to get ready for round two Friday. My weight loss has gotten stable finally. I have 6 treatments scheduled each one is about 6 hours long. three weeks apart. I am stage IIA Grade 3, can't get it to post on my link. Will do surgery after chemo. Chemo should be finished Nov. 16th.

  • Hughope1
    Hughope1 Member Posts: 116

    Has anyone seen SarahNola back on the site since the 15th? I know she had first round on the 17th. Her and I are on the same exact treatment plan and then surgery. Its been six days and I know that that was the worst time for me. Please reach out to her, I'm sure she could use the support. Thank you my group of strong women. You are the ones that have helped get me this far.

    Heart

    Hello SarahNola,

    Just checking on you. I have gone back through the post and have not seen you back on the forum. I know you had treatment on the 17th, how are you doing?My first treatment was on the 3rd, dropped me for the first six days, then thought I was turning the corner on the 9th, but then on the 10th I could not get out of bed. "I had dehydrated, and potassium had crashed, the hospital handled this issue and got me hydrated. After that things turned back around. I have been pretty good ever since, except for my hair started coming out in clumps, it was to my waist. On the 14th I had my hair dresser cut it above my shoulders."Hoping this would help, but it did not only got worse as the weekend approached. My husband and daughter shaved it Monday night on the 20th. I hate that we have to fight so hard against this illness and have to lose our hair to go along with it. But it to will come back. At first I was vary depressed and did not think I wanted to continue treatment, but thanks to the support of many of these women on this site, I'm still hear and still in treatment. Look at me giving someone else advise. LOL Waiting to hear from you.

    Heart

  • Kelly-Anne
    Kelly-Anne Member Posts: 62

    Hi Segamay! Just checking to see how your A/C went. Hope you are starting to feel some better. I suspect we are close(ish), I’m in southern Ontario. My daughter is 15 same age as your oldest son. FEC chemo started for me Aug 14. I’m doing better on my feet the last 2 days.

  • maiyen
    maiyen Member Posts: 25

    Thank you, bostoniangal25.

    MiCyn, I appreciate it. And you're right, the fear of the unknown is one of the worst parts of all this. I've been online like crazy looking at different tips. Now I'm trying to decide if I paint my nails black, or not, as I keep reading contradictory info.

  • ChasSuz
    ChasSuz Member Posts: 3

    Hi All! I got first infusion of AC yesterday and my Neulasta Onpro is ticking away as we speak. So far I feel really weird and space. Had Zyprexa last night and had horrible restless arms, could not sleep, so that's being discontinued. I have Zofran, Ativan as needed, and steroids through the end of this week. Hoping I can remain active and work as much as possible.

  • RimRoc
    RimRoc Member Posts: 22

    hello all! I'm so sorry to hear so many are having such a rough time. There's no doubt—. This all truly sucks. Sometimes people will say “you're so strong— you've GOT this!" I know they mean to be encouraging but I just feel pressured into being a Good Soldier when I really feel like curling up in a ball and crying all day. So friends- if you need a good cry- set aside some private time and space and let it rip!! I usually feel better after half an hour.

    I had two episodes of huge facial burning and peeling after one treatment with TC. Plus my left fingers started feeling numb and tingling. Since I had a pre-existing degree of peripheral neuropathy, esp in my feet, this was a scary development.

    So no more taxanes for me. I'm being switched to AC for the remaining 3 cycles. I don't have a port and I'm quite worried about getting adriamycin theough a peripheral vein. Anyone getting AC this way??

    I know the nausea and fatigue will be worse but at least no Neuro SE. and it will be a 2 week cycle, so I'll be done sooner :-)). Not sure what the trade off is in terms of lesser efficacy. Not too much I hope.

    So far I'm able to work part time; we'll see how it goes.

    Any one with a PICC line rather than a port?


  • santabarbarian
    santabarbarian Member Posts: 2,311

    Late to this thread. :-) I also started chemo in August. I have TNBC (3.8 cm, grade 3, stage 2a, 2 axillary nodes).

    I am getting Taxotere/Carboplatin every 21 days x 6. Then surgery (lumpectomy). Them maybe more chemo (if not all cancer is dead upon removing the tumor). Then radiation. TNBC is a scary one, but the silver lining a very low likelihood to recur if you pass 5 years.

    My tumor has shrunk a lot after just one chemo. It may have lower reaches that I cannot feel, but hat used to feel like a walnut now feels like a pea. Something to keep my mind on!

    I came through chemo well, no nausea but did take zofran for about 4 days because I was so *afraid* of nausea. My main complaint was being super super tired, and very polluted-feeling on days 3, 4, 5, like I was made of mercury glass, with zero appetite, cancelled digestive system, and un-slake-able thirst.

    I did a few things which might have helped me, so I will pass them on:

    First, I read about something called the fasting-mimicking diet, and did it for 4 days prior to my chemo and day of chemo. (Basically 800 cal virtually all veggies and healthy fats/nuts.) Hunger/deprivation sends a signal to immune system to ramp up, to protect healthy cells. And, to conserve energy, it simultaneous tells flawed cells to die.

    Also, I kept a lot of heat on my tumor and my axillary nodes, for about 1 hour sessions to the point of magenta skin, on the day before, day of, and day after the chemo. Heat damages cancer cells at a temperature several degrees less than what it takes to damage healthy cells. And at the very least, it brings the chemo-laced blood to that area.

    I figured I would try to deliver punches 1 & 2 and let the chemo come in for the KO. :-)

    Starting w round two I will be icing feet hands and scalp. I bought some freezable caps that migraine sufferers use online. In the reviews someone had used them for chemo successfully. You bring them on dry ice. I will be icing for chemos 2-6 to try to lessen damage to scalp and nerves.

  • Bostoniangal25
    Bostoniangal25 Member Posts: 177

    ohh, I like Santabarbarian nick- so cool 😎 especially I m dreaming to visit South Cali - have a friend there!!!

    Thank you for tips, but I would afraid of using heat - is it approved by docs?

    Another advice about eating veggies before chemo- great , super!!!

    I started cooking caps Paxman caps from first chemo, it’s better that way, otherwise ladies are loosing hair before 2 chemo. Good luck for us!

  • DClive79
    DClive79 Member Posts: 5

    Hi my wife had her fourth treatment of Taxol and Herceptin (TH?) today. She's “not really a message board person" but I don't want her (us really since I've been trying as much as possible to support her) to miss out on the opportunity to learn from others and share what we have experienced.

    We have been using Penguin cold caps, which makes our total day about 8 hours door to door (including 60 minutes of driving in and out). My wife has a really thick layer of curly hair on her scalp that she can't braid or relax or do anything with, making us wonder whether enough cold is getting to her roots - we had someone else in our infusion center quit using hers after an hour on the first day because of the cold and while she isn't super comfortable during the capping she is nowhere near the point where she wouldn't want to move forward!

    Now we are waiting for hair to start coming out, at which point we should have a fair idea of whether we've just been waisting time or not - in the meantime I'm becoming quite the pro at strapping her in and switching them out as needed and on schedule.

    Thanks and good luck everyone with your treatments!

  • moderators
    moderators Posts: 8,736

    DClive79 - Welcome to Breastcancer.org! We're so happy you found us and decided to post, we know you'll find great support and information here! Looking forward to hearing more from you and your wife soon.

    Sincerely,

    The Mods

  • Sunshine89
    Sunshine89 Member Posts: 56

    Hi everyone, i am still feeling quite rough. I am facing serious anxiety and depression...My head is spinning like anything...But i think most of that part is due to depression...I am away from my family and i miss thm alot. I didnt even tell my parents and siblings...I am with my husband and he is taking good care of me with his job. Most of the time i stay alone and it increases my depression...i am thinking to go back to my parents to complete my treatment who live in another country...there are my friends and nieces and siblings i hope it will be better for me to go there. Otherewise this depression will kill my mental life. I thinking to take my complt treatment plan from my ONCOLOGIST and go back to my country where my cancer was first treated in 2014

  • DClive79
    DClive79 Member Posts: 5

    Thanks so much! I hope I can be a good proxy for my wife on this platform.

  • kwilli
    kwilli Member Posts: 94

    RimRoc; I had a port put in before my first AC treatment, but they couldn’t get blood return so it wasn’t useable. A PICC was put in and I had chemo through my arm with that. Nothing weird, minimally invasive. It’s a pain in the behind to shower with the PICC.

    I’ve since had the port revised and the PICC removed; so 2nd chemo will go through the port.

  • MiCyn
    MiCyn Member Posts: 29

    Oh Sunshine..I'm so sorry you are having such a hard time..Maybe you should put a call in to your MO.. Depression is not a good thing..Let Dr know what is going on. You have so much on your plate, it's totally understandable you are feeling as you do. Please talk to someone about it. Vent away here to us all of course, but let someone close to you know your feelings as well . Prayers for things to turn around for you, Big Hugs, Cyn

  • Bostoniangal25
    Bostoniangal25 Member Posts: 177

    DC live79- welcome aboard , best health wishes to your wife , it so nice when husbands support their wife so much and write here!! Sure is phenomenal and support is tremendous!!!

  • Bostoniangal25
    Bostoniangal25 Member Posts: 177

    Sundhine 89 , please please talk to your doc - there might be local support group of young ladies like you - which state are you in?

    I m also from different country - Latvia 🇱🇻, but live here for almost 20 years , let your mom or siblings to come here on visitor visa if you can , don't go back . Which country you were born?

    Please stay strong you can do it!! We can chat on the phone ... pm me!!! Please

    Hugs !!!


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