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Starting chemo June 2021

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  • kotchaj
    kotchaj Member Posts: 214
    edited July 2021
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    LoverofJesus,

    I can't wait to see your wigs! Hang in there with your schedule being pushed back. I can only imagine how ready you are to be done with AC. I have two more then I move onto Taxol, too. I cannot wait for these next two to be over.

    I'm still amazed at how every day in between treatments, I feel different. I keep expecting some sort of pattern, umm nope. Not gonna happen. I had a salad yesterday for lunch and had a sour stomach by the time I got home from work, ugh. I've had nausea, but that seems under control this time and if I stay away from the zofran, I also am avoiding headaches. I've decided being sleepy from the compazine is better than the headaches. This second treatment has made me more tired than before. If that can even be possible. I went to bed last night at 7:30. Read for an hour then called it quits for the night. I came in tired today which annoyed me, lol. One of my good friends works with me and reminded me to not be so hard on myself and to realize that I'm going to have a bad day every once in awhile. I'm just tired of having them all stacked up in a row right now.

    Happy Tuesday my friends!

  • kotchaj
    kotchaj Member Posts: 214
    edited July 2021
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    mle42, awww thanks. I'm doing my best to be positive. I had spent the last two years growing out my color and had transitioned to completely grey before AC took my hair. I decided that I would have fun with my wigs and get something that I wouldn't normally have. I will find the positive out of this. Sometimes it may not be easy to find them, but I'm breathing, its sunny out and a million degrees. Did I mention that heat is so much more annoying this year than last?

  • hangryflower
    hangryflower Member Posts: 12
    edited July 2021
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    Going in for number #3 tomorrow and seeing my onc for the first time since diagnosis. Really hopeful she will feel a difference in the size of my tumor. I've noticed a difference, but I am not sure if it's a good response. Also, I am hoping to clarify whether this is treatment 3/8 or 3/6. I keep reading there's 6 TCHP neoadjuvant treatments, but not sure if I'm getting more due my staging.

    I've appreciated hearing everyone's progress these last few weeks. I am hoping things continue to go well for all of you. 💛💛💛


  • SRL
    SRL Member Posts: 6
    edited July 2021
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    I love your wigs. I just am too hot to wear them

  • mle42
    mle42 Member Posts: 124
    edited July 2021
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    Hangry, hope you're doing well after treatment yesterday!

    My fourth and final AC is tomorrow, I feel like I'm already starting to get nauseous in anticipation. SO ready to be done with this and move on to the taxol.

  • monarchandthemilkweed
    monarchandthemilkweed Member Posts: 166
    edited July 2021
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    kotcha, I know how you feel. I spent the last nine months growing out my hair after I cut it short in support of my sister on her cancer journey!

    My wig is hot to wear and I only wear when we go out to eat or I have to go into work. I find even hats and scarves hot on my head even though we have a/c

    Good luck to everyone getting an infusion today or yesterday.

    I’m dealing with being fatigued. This is week two of my three week cycle. So this week and next week are my good weeks. While I feel good, and my appetite is back. The fatigue is getting to me. I exercised twice this week. One day a nice long walk. Maybe 10,000 steps. Then yesterday maybe 8 miles on our recumbent bike. And last night I couldn’t get off of the couch from 4 on. I even fell asleep for a bit. I managed to throw some baked potatoes in the oven and that was dinner. I hate the fatigue. The exercise at the time felt so good I don’t regret it and I worry I’m getting out of shape. Anyhow how else is everyone dealing with the fatigue? I’m trying to drink lots of water and eat well. Good protein. Etc

  • btwnstars
    btwnstars Member Posts: 81
    edited July 2021
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    Treatment 3 yesterday, back round the cycle. I ended up sticking with Neulasta after hearing LoJ’s story. My wbc was 16, so not terribly high. I don’t want any delays!

    Monarch - I was very much more fatigued last week, I only had 2 good days before treatment. I am just trying to honor it, rest & sleep when I can. I find a few cat naps during the day help. I’m not really trying to fight it, but am fortunate to not have to care of anyone else. My Mom has become my permanent secretary, running errands for me. My SO is really picking up the brunt of things, and other things just get let go.

    Kotch - I agree on the differences. I keep trying to find a pattern but really can’t. One day at a time!

    Good luck to those of you on treatment this week… still counting down the days and glad i am over the hump with AC

  • hangryflower
    hangryflower Member Posts: 12
    edited July 2021
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    Hey all checking in after #3! Dr confirmed I'm halfway through. While that is certainly good news, it's also daunting. You mean I have to endure this again?

    So far it's day 3 and I am tired and nauseaus. Last treatment, day 4 and 5 were rough. Hopefully it will be ok.

  • Dicon
    Dicon Member Posts: 32
    edited July 2021
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    SAME HERE. My WBC count was 30, skipped Neulasta an dropped to 1.2! So the Nurse was right and the Onc and me, were wrong.

    My count is so low it may take weeks to recover. I read eating vitamin C can increase production, so will get on the oranges. There may be a shot to increase production, I will be calling Monday.

    Its a learning experience.

  • Maura1
    Maura1 Member Posts: 12
    edited July 2021
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    For those of you suffering hot flashes, I found an ice roller on Amazon that has been a life saver!!

    (I tried to post a picture but received an error that I can’t post links at this time? Anyone else having issues posting links and pictures into chats?

  • K-Gobby
    K-Gobby Member Posts: 144
    edited July 2021
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    Love these!! I am just starting and plan to get a few wigs.

  • K-Gobby
    K-Gobby Member Posts: 144
    edited July 2021
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    I felt this is my post to reply to. I have had long hair for likely 35 years. Middle of my back and for most years it was red and naturally curly. I said i would cut it one day, but have never done it. I do not go to salons, so trimming is by me. No dying at all, yet some grey coming in.......slowly and my hair has been thining and changing. I am at 60 years and i said at 60, i may cut it to my shoulders. I believe you have confirmed triple that i will cut it above my shoulders. City of Hopes hair department had called me last week, and i said not yet. This week it is time. One more time to wash and curl my hair, which i have not done in decades regularly, and this next week, let it go. All of you sharing your journey helps me. I get my first infusion in 2 weeks. Hair loss right away? I do not know, but if i cut short and get wigs that are shorter, then outside at work I will be ok. Acceptance after tears and sadness??? ................Thank you for leading the way.

  • monarchandthemilkweed
    monarchandthemilkweed Member Posts: 166
    edited August 2021
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    hi k-gobby, welcome. My hair loss started exactly 14 data post first chemo. My hair came out gradually until maybe day 17 it started to come out fast. I had my head shaved on day 16 I think because I already had short hair I didn’t love. It was like ripping the bandaid off. I’m two weeks passed my second infusion and nearly bald. Now I’m noticing how thin my eyebrows are. Not ready for that. I’ve always had prominent eyebrows and eyelashes.

  • K-Gobby
    K-Gobby Member Posts: 144
    edited August 2021
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    Monarch and the milkweed... love the name

    Luckily i guess, with red hair my eyebrows and eyelashes need something on them to be seen. As to hair, I am going to have it cut. Let the stylist at City of Hope do for me what they do for so many others. Long clumps of hair sound way scarier. Shorter less scary. All raher day really. I appreciate your time line. Another person on a post said they wish they were one of those who does not loose their hair. I am guessing that does not happen for many. Chemo starts for me in about 2 weeks. That would possibly give me time to get wigs and acceptance of myself as my hair is shorter and shorter till gone. A slow pull of the bandaid... till RIP!

  • Carlsoda
    Carlsoda Member Posts: 120
    edited August 2021
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    Hi K-Gobby! Sorry you are here but we will be here to support you! I love how you are donating your hair. I didn’t even think of it but maybe it was too short anyhow!

    I think hair loss is more dependent on the type of chemo you get - some none others all. I still have about 15% of my hair left although onco says it will all eventually come out. We shall see 😂

    Last infusion is Thursday - YAAAAAAY!!!!! I was tempted not to get neulasta this time due to all the aching bones but I think I will just so I can get back to normal life faster!!!

    Our sweet cousin had a little of puppies (purebred) and she is giving us one!! We get him 2 weeks after chemo! So excited to have a walking and hiking buddy!! Grandkids are SO excited!!

    Hugs to each and every one of you!!

  • loverofjesus
    loverofjesus Member Posts: 174
    edited August 2021
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    Hi K Gobby

    I have not shaved my head yet. Just can't bring myself to do that yet.

    I did get my eyebrows microbladed before I started and got the touch up after my second Infusion. And I still have eyebrows. I bought Latisse for my eyelashes and so far my eyelashes are still there and pretty long.

    Everyone is different as I too have about 15% of my hair. But I cover it with a wig because it is super thin and patchy. But I truly know I'm just waiting for all of this to be over!



    hugs and prayers sent to you all.

  • K-Gobby
    K-Gobby Member Posts: 144
    edited August 2021
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    Thank you all. I need to spell check before i post.................All raher day really ..........not sure what i meant.

    ...I visited my sister this morning after my up the nose Covid test at 7: 30am. Yikes. I close my eyes and say do it in all test. They know what they are doing, so do fear i say to myself and them. No worry or fear for me to see, all i thought was "What the heck are you trying to get" as she did it 10 seconds each side. Four hours later, on my City of Hope portal I have a test result posted! NEGATIVE. I have been a Red Cross Platelet donor since 1995, and have been tested for Covid the whole year. Good to know I am still Covid free.

    I need to check on Latisse. I was looking at myself and thinking even if I have light eyebrows, I still have them right now.

    Cute deal on puppies. I volunteer with a local rescue that saves dogs, cats, guinea pigs and rabbits one at a time, they say, until there are none. Priceless Pets.. Then i do not take all stragglers home. Just love them to adoption.

    Lover of Jesus.....So I was chatting with that sister and talking about wigs. She wants to take me somewhere to look at them. I sent her the TRC site one of you posted on these blogs and I showed her the City of Hope department that gives help in all these areas. Haircut for free and a wig and more low cost or free. Because of Covid, few visitors are allowed on the campus at COH. I told my sister i loved wigs in these skits I have done over the years, so I want at least 3. I had hoped i could include her in my personal consultation, so I will still ask just in case. I have a picture from my way younger years of a short style that looked good on me. A wig like that would be great. I am adding to my prayers that my hope is i do not loose it all.

  • K-Gobby
    K-Gobby Member Posts: 144
    edited August 2021
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    Carisoda-

    Thanks for reminding me i can post the drugs for others to reply.

    I am getting what looks to be one many of you got.

    1st in 2 weeks for 4 infusions every 2 weeks.- TAXOL- ANA Pacitaxel.

    Waiting for the 1st primary Care doctor to get the "Fish" results. Depending on those, I will have two more drugs possibly.

    2nd set if needed is 4 infusions every 2 weeks of Adriamycin & Cytoxan

    Looks like i have a good sie tumor that loves Estrogen. 98% . Progesterone negative.

  • btwnstars
    btwnstars Member Posts: 81
    edited August 2021
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    KGobby, sorry you are here with us. As far as the hair, I thought it would bother me a lot more. I also had long hair and it was kind of just part of me in that way. Mine started coming out day 17, after 2nd treatment of AC. It was getting dry because I guess it was falling out/dying, so I shaved it. Myself. At first I kept it longer, I did get 2 wigs, but most of the time I am bald (it's still fuzzy) at home and even just wore headscarf to hospital. I just shaved it up a bit more over weekend to get it shorter in anticipation for more loss after this 3rd treatment. It has not upset me like I thought it would and in grand scheme, feels like the easiest part bcz I know it will grow back. But everyone is different and I know it is very difficult for some, which I really feel for. I think I am more nervous about eyebrows/eyelashes, but so far no changes. I am wondering if the Latisse is worth it because that is more for new growth?

    Did you get an oncotype score? or any kind of further testing to determine benefit of chemo?

    Insomnia? Anyone else suffering this? Before I could just take the compazine and that would knock me out pretty good. But this 3rd time, I was up a lot during the night, just like wide awake. I don't feel like menopause effects, unless just being awake is.

  • kotchaj
    kotchaj Member Posts: 214
    edited August 2021
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    BtwnStars- I am going through the insomnia. UGH. I can stay ahead of my racing mind most of the time during the day, but at night..oh man. My PCP gave me Xanax which helps me go to sleep, but it doesn't keep me asleep. I seem to wake up pretty consistently around 2 to 3 am....and stay that way. I'm just trying to go with it, I read on my Kindle, journal if needed, get up if it's really bad and drink some herbal tea, then try to get a little more shut eye before my alarm goes off at 6 to get ready for work. It's the steroids. I hate it, lol, but I'm not thrilled with a lot that is happening this year and it will be over with before I know it.

    So, something else this weekend for me. How is everyone relating to their friends right now? My cousin had colon cancer 5 years ago and is doing well. She is the only one who gets how I'm feeling right now, but I was wondering how everyone else is doing with their friend group. Mine have always gotten together for dinner and they gossip. Quite a bit. I've been able to just blow it off in the past, but this last time, bothered me and annoyed the crap out of me. Our COVID numbers are spiking again so I'm using it as the reason to not get together with the group. Don't get me wrong, I love them all, but I don't want to waste my time right now talking about other people and shoes and what to watch on Netflix. My cousin described it perfectly. There is a high fence between those with cancer and those without it. You can hear them, but you feel very disconnected and lonely at times. I feel like right now I don't have anything in common with them. I love them all so much, but I'm in a different space right now and my priorities are definitely different. Just wondering how others were feeling..

  • K-Gobby
    K-Gobby Member Posts: 144
    edited August 2021
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    BtwnStars and all


    Thank you for sharing this part of your journey. I have something this Saturday online, so I think Monday I will get my hair cut. My sister has cut her own hair. I must say today, her hair is not luxurious as it was. What healthy concerns she has had have changed her. She told me some issue yesterday, but her hair is not as pretty. Heredity????

    As to the oncotype, I know the City of Hope was calling my Primary people and maybe they will do their own? I have an ultrasound Wednesday and a guided biopsy. I will message the Primary later today if i do not get results in my inbox. I have a prospective 4 more infusions......not having one yet?? My flippin mass is over 5 cm, but not spreading. I must say the fact that i have BC is amazing to me still.

    I do wonder what effects i will have. No constipation problems now or insomnia, menopause 19 years ago. I am 60. First treatment in 2 weeks or a day sooner? I will start to know then what my bosy says and how it reacts.

  • hangryflower
    hangryflower Member Posts: 12
    edited August 2021
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    Oh, KotchAJ, that fence analogy is too true, even within one's own family. One reason why I am thankful this board is fairly active. We're all on the same side of the fence.

    K-Gobby- I know what you mean, 2 months into this diagnosis and I still can't believe this is happening to me (see above, maybe I was one of those annoying people far away from the fence 😂). I sometimes catch my reflection in my computer screen and am shocked. I know this is ultimately a new part of my story, but I'm not fully at acceptance yet.


  • loverofjesus
    loverofjesus Member Posts: 174
    edited August 2021
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    Kotchaj,

    Hey I love the fence analysis. You are so right! And some “friends” that were there two months ago have suddenly disappeared. Maybe they can’t take it I don’t know. But they don’t call or come around. Sometimes if it wasn’t for this forum life could get lonely. My family is here. My mom is 81 but she is my rock. She has talked me off so really high ledges. (Not real ledges) but going through this is hard. I even had a friend diagnosed. She was having all the feels I was having until she found out she wasn’t going to need chemo. Then her entire perspective changed. Don’t get me Wrong I’m happy she doesn’t have to have chemo. But all at the same time I’m sad for me. I know that seems selfish. And I truly had prayed for her not to have to have chemo. I just guess I’m scared.

    But I know we are all different. I’m so thankful for this place. To vent, to pray with you all, to cry and you all understand

    Thank you

  • monarchandthemilkweed
    monarchandthemilkweed Member Posts: 166
    edited August 2021
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    lover of Jesus, a good friend’s husband was just diagnosed with pancreatic cancer and he started cancer. Ans my selfish response (internal) was first my sister, then me, then my friend’s husband) I will never get away from cancer. It felt suffocating for ANOTHER person to be diagnosed. It’s all hard.

    I get what everyone is saying about friends. I’ve had those feelings. I just keep pushing through.

    My rant. I start cycle 3 on Monday. Cycle 2 brought a 14 day period. A week break. And it looked like I’m starting me period again!!! I’m so annoyed. Anyone having super irregular periods

  • K-Gobby
    K-Gobby Member Posts: 144
    edited August 2021
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    KotchAJ wrote-

    There is a high fence between those with cancer and those without it. You can hear them, but you feel very disconnected and lonely at times. I feel like right now I don't have anything in common with them. I love them all so much, but I'm in a different space right now and my priorities are definitely different. Just wondering how others were feeling..

    For me, I have emailed the Dean for our department. She has emailed my supervisor in a general way as I did. The sup's Mom died of cancer a number of years ago, he comes from an authoritative place. He needs to be part of every discussion. Leading it if possible. The fence works, he is on the wrong side to do that. My Dean is on my side. Supportive. She is a science based professor turned Dean with humanities too. When i got shingles in 2016, i told her i was not going to the Doctor as it was following the timeline i found online. She said it will work it self out. Keep it clean and put on calamine for scratching. I was ok.

    I am talking with HR today, I was sent a form the College has medical personnel to fill out from alternate work requests.

    Monarchandt- Keep pushing. I am sorry for all this added news.

    Lover of Jesus- A friend of mine had her cancer come out in the biopsy 5 years ago. What??? Still, not sure which side of the fence she is on. I start Chemo Aug 13th if my insurance company approves it then. Or it goes a few days later. I did have a thought with her, that she did not face chemo. When i fist was diagnosed with a Basil cell, I thought OMG i have cancer. After that one, i have had 20 or more burned or cut out.

    I am grateful to have found all of you on this blog. To my friend on her...thank you for sending me the link to join.

  • moderators
    moderators Posts: 8,287
    edited August 2021
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    Hello Everyone, just letting you know about this!

    TODAY: Zoom virtual meet-up for people going through chemotherapy (caregivers welcome)

    Tuesdays 1:00-2:00 PM Eastern Time (US and Canada)

    Register in advance for this meeting

    After registering, you will receive a confirmation email containing information about joining the meeting.

  • kotchaj
    kotchaj Member Posts: 214
    edited August 2021
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    I'm glad you all liked my cousin's fence analogy. It really stuck with me when she told me about it. I can honestly say even though this CLUB is one that you never want to see anyone be a part of or be a member of, I'm so thankful for all of you to walk this path with me.SmileI don't feel so alone.

    I had AC #3 yesterday. One more Red Devil on the 17th, then I start weekly Taxol on the 31st for 12 weeks. Twelve weeks. I have my last one on November 16th. We talk surgery and next steps then. I'm taking tomorrow off of work as Thursday seems to be my crash day.

    We've got this, we will do this, we don't have to like it though, rightHug


  • btwnstars
    btwnstars Member Posts: 81
    edited August 2021
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    I also really like the fence analogy. While I’ve had great support, I also sense the distance some put because I think they don’t know what to say or they fear it’s contagious! It doesn’t bother me as I felt similar when I got divorced years ago. Turns out coping mechanisms for divorce and cancer are pretty similar. I don’t sweat it bcz my inner circle has been as good as can be.

    So after my insomnia on the wknd, even tho I took the laxative more regularly, I still had horrible constipation then the opposite that follows. I don’t think I am taking zofran next round, and will stick with compazine, as I don’t appreciate having my gut all jacked up for days.

    It’s already hard enough eating, my taste is horrible. Is anyone else crave spice? I keep putting garlic on everything! I just want to actually taste something.

    Monarch - no period for me, it disappeared after I started chemo. I haven’t talked to doc about it much so not sure what options are. But before dx I was back on birth control again to regulate bcz of horrible periods, so I empathize with you. That has got to be hard on your body! I hope they find you some relief. I am now wondering tho if my birth control use contributed to my bc?!

    LoJ - sorry to hear about your friend’s reaction, but I am sure it’s just fear and not knowing. The more I read and more cases I hear about, I think, as hard as it is, we are better off with chemo. Seems like so many cases where it isn’t suggested end up recurrence. That’s just my observation but I’ve read A LOT.

    Kotch - I also have 1 more red devil on 12th! Never thought I’d be excited for new chemo drug, but I am! We got this

    Stay well ladies…

  • Carlsoda
    Carlsoda Member Posts: 120
    edited August 2021
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    Guess what? Tomorrow is my last infusion YAHOO! Then 2 weeks of feeling like crap but I never have to go through this again! Let’s all finish strong!!! Oh and we are getting a puppy! He will be eight weeks old in less than 2 weeks and can come home!!

    image

  • loverofjesus
    loverofjesus Member Posts: 174
    edited August 2021
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    Carlsoda,

    Congratulations on your last treatment!!!!!! I’m doing the happy dance 💃🏻 with you!

    What a precious puppy! We have two fur babies and they are part of the family. And honestly have been comforting through all of this.

    Hugs sent to you!!!!