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Chemo starting June 2018

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Comments

  • InnaB2018
    InnaB2018 Member Posts: 766
    edited June 2018

    Thanks for the link, Domzie! I always thought that there was a typo on my path report when they listed my stage as IIA not as IIB because of my tumor size. But now I see that they were right and I was a doom and gloom idiot second guessing my doctors! Upgrading myself from IIB to IIA! Best news I had in months!

    In case you were wondering why I didn’t just confirm it with my doctors, it’s because they are not holding anything back from me, and I wasn’t ready to hear more depressing prognosis. I’ve read enough..

  • Kat22
    Kat22 Member Posts: 93
    edited June 2018

    I see after clicking on the staging link, that it's noted that neoadjuvant staging is different than post-surgery staging. Maybe that's why I'm different. Feeling pretty crappy today :(

  • hollywood1968
    hollywood1968 Member Posts: 35
    edited June 2018

    staylynn

    I was extremely tired right after also. I did not get tired that fast the first time. Today is not bad just a little tired. I will probably have to shave my head this weekend also. Mohawk could be fun. My only fear is my granddaughter not recognizing me or being scared

  • Crystal_sola
    Crystal_sola Member Posts: 7
    edited June 2018

    staylynn thanks for the tip on scarves! Head scarves can get expensive if you want an assortment. I wanted to mohawk too but by the time I shaved it was coming out in handfuls so couldn't do it. It was really hard to buzz it but I was glad after it was done cause hair was falling everywhere.

    I agree that hydration is key, I really hydrated before my first DDAC, and had no issues. Didnt drink as much as I should for second, was nauseous, and extremely exhausted. Indescribable exhaustion. Will try to super hydrate for number 3. My cancer center also offers to patients who dont feel well to come in and get fluid infused.

    I've been lucky so far, hardly any side effects. The only food I remember they said to avoid was buffets, raw fish or meat, and I cant peel my own seafood because of bacteria on the shells.

    How important do you think staging is? I haven't been formally staged because my PET shows internal mammary nodes but they wont biopsy because of proximity to aorta. So we dont have a definite node count. It wouldn't change treatment plan anyhow.

  • hikinglady
    hikinglady Member Posts: 625
    edited June 2018

    #1 TC--I'm sharing how it's going, hoping this might help others plan or prepare....60 years old, retired, thank heavens, although this wasn't my dream plan for how to spend my first year of being retired, after 38 years of teaching high school!

    Days 1-3 I felt pretty good.

    Day 4 was a total loss. Couldn't eat much, felt vaguely nauseated, and was more or less glued to the bed and napped a lot. I suppose it's because the Neulasta kicked in (on-body injection evening of Day 2) and also I probably came down off of the 3 days of steroids (Days -1, 1 & 2). Some Zofran helped for part of the day, and I took a Claritin which definitely helped, and some Ativan for another part of the day; that took the edge off the icky-pukey feeling, and I did NOT throw up. YAY!

    FOOD: I'm trying to pack in the protein, for good cell repair. Sometimes a smoothie with fruit + yogurt + banana + protein powder, meat and cheese, eggs, cottage cheese....

    CONSTIPATION: Not a terrible problem---some days I need Miralax in the morning, or 2 stool softeners in the evening---if I have a good activity day, I seem to be okay.

    Day 5: I got up and walked 3 miles and maybe that's all I'll get done, but I seem to have a bit of an appetite, and will hydrate.

    ENERGY: I need a nap after lunch, but I'm also just 5 weeks past BMX/SNB. Besides coping with chemo SE's, I'm also uncomfortable from TE's behind my pecs, so I occasionally use 5 mg Cyclobenzaprine for that spasming.

    Oh, and I had foot surgery in February, and had no weight-bearing for 4 months, so immediately after that, when I was starting to get to use my foot, I got my bc diagnosis. This has been a rough 5 months! Anyway, I am lucky to be retired and able to plan my day around what my energy allows. Thank heavens my foot is repaired now, so I can deal with all this!

    I'm keeping a journal of how I feel, what I eat, what medications help, and hopefully that will help with the future infusion rounds....

  • lilych
    lilych Member Posts: 176
    edited June 2018

    Hi Ingerp,

    Yes, per the link Domzie30218 provided, HER2+ may not necessarily be a bad thing Happy , as it always ranks the stage lower or equals to the one with HER2- but the other two are the same.

  • Punzle
    Punzle Member Posts: 2
    edited June 2018

    I just had my first infusion one week ago. About day 5 I started feeling crummy. Body aches, chills, night sweats. Nothing tastes good, except sweet or bland. Feel like I have had a constant lump of grossness in the back of my throat. Not much of an appetite. I thought I was doing so well, and then this all hit. I've been using doTerra peppermint beadlets to help combat the queasiness. I'm taking Zofran, but it doesn't seem to help with this weird, full feeling. It sucks because I know how important it is to keep my nutrition up. I've lost 4 lbs. since my first tx. I'm not sure what to do. Just gonna roll with it and eat when I can.

  • Punzle
    Punzle Member Posts: 2
    edited June 2018

    Hi there Staylynn! I was fortunate enough to have a session with a dietician. She recommended increased intake of omega-3's like walnuts (she said 4 walnuts a day give you your daily allowance), salmon, chia seeds, avocado etc. Lots of fruits, veggies, protein rich foods, probiotics, turmeric. I'm supposed to eat every three hours and within an hour of waking to keep blood sugar levels stable. No raw foods like sushi (wah!!!), no grapefruit, no juicing, no edamame or soy-based if you are estrogen positive. I guess overloading on antioxidants during chemo can counteract the process. The tough thing is that my appetite is gone, so I'm just trying to do little bites here and there when I can. Nutrition is so important, but it's tough when you don't feel like eating...

    Good luck to you <3

  • InnaB2018
    InnaB2018 Member Posts: 766
    edited June 2018

    Punzle, have you tried Lemon ginger tea? I find it helps me with nausea. Actually, anything with ginger helps, if you can stand the taste

  • sherylann987
    sherylann987 Member Posts: 10
    edited June 2018

    Staylynn - thanks for the info on searching for scarves on Amazon!! Especially sizes to watch for. Have you ever heard of any local stores that sell them where you can try them on? I guess I could just go to Walmart, eh? I'm afraid to order something that I don't know if I will like it. Actually I probably won't like anything because wearing it just shouts out loud that I have cancer! I'm not real crazy about wearing a wig either though; although I am going to go look at some on Monday.

    HikingLady - thank you so much for sharing your journey! As a newbie, I really appreciated it! Sounds like we've both had a terrible 2018!! 2019 just HAS to be better, right?!!!

    Punzle - thanks for sharing about your dietitian session. I also found that helpful!

    Today steroids kicked in and OMG I haven't felt this good in years! I feel so good that it is making me even more afraid of the crash ahead. One day at a time, right?

    Hope everyone has a good weekend. I'm so grateful for this site and this group!

  • hollywood1968
    hollywood1968 Member Posts: 35
    edited June 2018

    sherylann987,

    The wig store I went to sold scarves and caps

  • rachelcarter35
    rachelcarter35 Member Posts: 256
    edited June 2018

    Day 14 after first of four treatments of Taxotere and Cytoxan every three weeks. One week till 2nd round. I feel great! I'm going to enjoy this week -get the house clean - weed and visit with friends (who are healthy).

    I wore my comrad billed hat yesterday and today I wore my fedora. I didn't shave to the quick so until I lose it completely it looks acceptable.

    I haven't wore make up in years but got eyeliner and applied a bit so I can get used to how it looks. I'm hoping that when the lashes go it won't be a complete shock that way. I'm thinking of penciling in my brows a bit too so its an easier transition.

    At the front end of my diagnosis when there was such a steep learning curve and so many decisions to make I was so scared and wondered when I could wake up from this bad dream. Now I realize I'm so much more peaceful. I'm coping better. There's an acceptance that happens. Also I've found that most of my worries haven't come to fruition so I'm crossing bridges as I get there more. I guess I also have seen my strength at each stage and have come to trust I can be brave again.

    Don't get me wrong I'm newly spooked and understand now more than ever that life can change on a dime. But getting through this first round of chemo is a point to breath and have gratitude and see that I ....we can get through this. If I could have a glass of wine I'd be having one to celebrate tonight.

    Changes for this next round:

    1. take a laxative the night before and stay on top of constipation from Zofran

    2. heating veins on my way so hopefully they won't blow my IV again

    3. Take my first Zofran in bed the day after instead of waiting till breakfast

    4. Take Zofran more days or Adivan while I'm going off the steroids. I was a little tweekie and emotional....stay on top of constipation while doing this.

    5. Take benedryl if I react to the Taxotere with itchiness again.

  • 3LBirds
    3LBirds Member Posts: 8
    edited June 2018

    Hi everyone, thanks for all of your posts! They have helped me prepare for today, my first day of neoadjuvant AC followed by Taxol. It was weird seeing Adriamycin going in. I guess it just made it that much more real, like this really isn’t a just a bad dream. The Cycclophosphamide (C) gave me some nasal pressure and a tingling scalp. It wasn’t bad, just made me think my hair will fall out sooner than two weeks. Thanks again for sharing

  • jaboo
    jaboo Member Posts: 368
    edited June 2018

    Hi, I am reading here while waiting for the July2018 group to emerge.... I haven't met my oncologist to plan the treatment yet, but I'm pretty sure chemo+herceptin+hormonal will be all necessary. I have an appointment on July10th, after I heal after the two surgeries (due to close margins at the first one, the second one was also close, but acceptable, they say)

    I have one question (I suppose a bit dumb one) concerning staging that has been discussed here... what is that actually for? does it tell anything? like treatment or prognosis or whatever? I haven't been able to find anything.

    I thought I am stage IIB, but according to the new staging I would be IB. While I like the downgrading, I have no idea what good is that for :-)

  • domzie30218
    domzie30218 Member Posts: 47
    edited June 2018

    Hi JaBoo, the staging just gives an idea of overall prognosis but probably best not to focus too much on it. For most of us, the treatments are pretty similar even with different staging. The biggest take away from the new AJCC staging that came out in 2018 is that it goes beyond TNM and includes the biological markers of the tumor. Good luck on your chemo treatment!

  • rachelcarter35
    rachelcarter35 Member Posts: 256
    edited June 2018

    JaBoo: I think reading through previous months is helpful because you get to hear about the 'getting through' part. At the the beginning of each new month there is a lot of unknowns and fears and as the month progresses you hear about what helps and how the side effects (if any) can be managed. I wish I'd known this when I was going into chemo. This is a super list:

    https://community.breastcancer.org/forum/69/topics...

  • jaboo
    jaboo Member Posts: 368
    edited June 2018

    Domzie, thanx, thats what I thought somehow... I thought there may be a list of stages with prognoses and I liked the idea of being Ib :-) insgead of IIb. well, whatever. Good luck with your chemo, I see you are even younger than me... any kids? (mine are 7 + 4 years old)

    Rachelcarter, yes, I got the tip to look at previous months in another thread here. Very helpful I think! Thanx for the link, I have already gone through the list and I think I will have to make notes in my cancer-notebook. The products are unknown to me (I live in Central Europe, hence my weird English), but the list is very helpful nevertheless. I just have to ask at the pharmacy for the specifics...


  • Giveityourall
    Giveityourall Member Posts: 62
    edited June 2018

    Kat22, How are you feeling and doing? I ask because I care and because I feel like crap. I know that the feeling is not a nice one and perhaps my message should drip with positive phrases... but I can't pull them out. Finishing my fifth treatment of TCHP on June 17, 2018, I feel like a wet noodle. I have a hard time feeling energetic or bubbly. In fact, I don't feel it at all. It is not that my spirits exactly match my physical “crapiness." I am not giving up. I remain my best and strongest advocate, but I literally have no energy. I want to be productive, but I can't. That's what sucks. Zapped of energy with a hemoglobin of 8.7 and RBCs of 3.21, I am struggling.


    You are not alone. I feel like crap, too.

    Giveit

  • lulabella
    lulabella Member Posts: 48
    edited June 2018

    hi Giveityourall...I have a really low hemoglobin & RBC too. Almost the same as yours (8.9 and 3.8). My doc said he was going to give me an iron infusion at my next chemo. So maybe that will help? I'll let you know and I hope you feel better. Are you doing 6 rounds of TCHP? If so, you are almost done so hopefully the struggle gets easier.

  • Kat22
    Kat22 Member Posts: 93
    edited June 2018

    giveit: Thanks for asking. I had my 2nd TCHP Wednesday and neulasta for the first time Thursday. Today I waved the white flag of surrender. Called off work and have spent the day doing nothing but drink water and sleep. Like you, the spirit is decent but the body is just saying "not today". My numbers were strong after round 1 except WBC, curious to see how I bounce back this time. Labs and fluids next Friday. Trying to stay focused on the end pont.....

  • out_and_about
    out_and_about Member Posts: 27
    edited July 2018

    Hi everyone, sorry to hear so many are feeling lousy again. My round 2 will be on Thursday (pushed back 1 day because of the July 4 holiday). I have been feeling pretty good since about a week out from my first. I bought a house! (my first). I have spent the past few days from morning to night working on the house, painting, etc. Luckily I have had a small army of friends helping me. Movers come on Tuesday to bring our stuff in. I am hoping to have it reasonably unpacked before my next round.

    Unfortunately the hair loss has gotten pretty bad. The bathroom garbage can looks like there is a squirrel in there or something. My part is widening on the top of my head and I have started to wear a buff to catch all the hair that is coming out, since my hair looks like crap now anyway. My wig shop is going to shave me, but they can't get me in until Tuesday, and I am not sure there will be much left by that time. My scalp is pretty itchy and sensitive too. The house has been quite a distraction, especially since feeling better, but the hair loss makes it real again.

    Honestly I am getting nervous about round 2 also. I feel like myself again right now and I don't want to go back to that. Does anyone know if TC gives you similar side effects, or if it builds each time? I know going in that I have to be really on top of the motrin and hydration this time. Hopefully I can ward off some of the awfulness by using what I learned the first time.

  • timetobebrave70
    timetobebrave70 Member Posts: 65
    edited July 2018
    I just had my 2nd tchp Wednesday and first time doing the neulasta and I am not doing well either. I am super tired and having bone pains even with Claritin. Nausea and my period that was supposed to be over started again!
  • timetobebrave70
    timetobebrave70 Member Posts: 65
    edited July 2018
    I just had my 2nd tchp Wednesday and first time doing the neulasta and I am not doing well either. I am super tired and having bone pains even with Claritin. Nausea and my period that was supposed to be over started again!
  • InnaB2018
    InnaB2018 Member Posts: 766
    edited July 2018

    Had my third AC on Friday and am crushed by fatigue. I squeezed in exercises yesterday, not sure about today. Timetibebrave, I feel my period is coming as well. It’s not pouring, but there is a light smear. I bet it adds to my fatigue.

    I wish everybody a good Sunday and a great 4th of July not marred by the side effects.

  • Kat22
    Kat22 Member Posts: 93
    edited July 2018

    timetobebrave: Good morning, my sister in suffering lol. Very glad to see you, although very sorry to know you're having a rough go as well. I was worried about you, as we are on the exact same treatment and timing. Hope you are better today, along with everyone else. We'll get through this, I'm told.

    As for me, I kinda like being alone on the worst days. My DH has a hobby that keeps him away on the weekends which is fine with me. I was OK Thursday, tired Friday. My son brought me some dinner then I went to sleep. And stayed that way. I woke up about once an hour, drank water, and went quickly back to sleep. All night Friday, all day Saturday, and last night. I ate a little at some point. I don't know that the Claritin helped me much, either. I still had pain and seemed jittery. Tylenol didn't seem to help much but I think Aleve did, IDK I was soooo tired. Happy to say that today I feel much better and am about to get a shower and go to work. IDK if I'll make it the whole day, but if not, I'll leave. I have to get up and feel human again. Here's hoping.....


  • rachelcarter35
    rachelcarter35 Member Posts: 256
    edited July 2018

    This Sunday morning I'm praying for our caregivers.

    The whole family has cancer right now. The leader of my support group says sometimes its harder for the caregivers. I called her in tears and she said he was EXACTLY on time. She sees it all the time. So rather than being angry at him I'm getting that he's suffering.

    My guy has been so supportive through my surgery and recovery but has hit a wall with this chemo. We have always had a really peaceful easy relationship but he's grumpy and overwhelmed and we've had an incredibly rough few days. This last Wednesday I think if he could have he would have jumped in his truck and gone to the mountains for a month.

    I'm going to leave him alone as much as possible, lean on girlfriends and try to talk about anything other than cancer. I may get the Sunday NY times just to have some new topics in the house. I've been so single minded about cancer and missed his cues.

    We took a drive in the country yesterday, and just healed. I didn't mention cancer once. Its kind of a glaring presence with this new bald head but we tried to take a break. Inside my head I see myself on the other side. I plan to get back to the easy, playful, fearless me. I think he'll be around to see that. I'm doing this whole thing so that we can get old together. There is so much life to still live.


  • Washington48
    Washington48 Member Posts: 35
    edited July 2018

    Following first AC, a few days tired and had fierce headache. For next round on July 3, a change in nausea meds will hopefully eliminate headaches. Advice=hydrate, hydrate, hydrate, and walk as much as possible. I was doing and feeling great, then went in for blood test. White count low so am home in isolation until infusion. Extra Neulasta shots forCycle 2.—7 days instead of 5. That is okay as Claritin kept bone pain gone! Hair started falling out this morning. Grandkids want a haircut party, but am not sure about the four year old with shears.

  • Washington48
    Washington48 Member Posts: 35
    edited July 2018

    Rachelc... yep...hubby on time too for a caregiver crash. Suddenly he was sitting staring into space and just looked sad and angry. Phoned our son and asked him to issue golf invite... a couple of hours away, and my supportive guy is back. Caregivers need breaks even when they say they don’t. Sent him to our favorite dance venue last Friday and that helped too! Friends supporting him was wonderful! He is my rock and I do not want to over-use his strength. I now have friends on board inviting him to ballgames and other “guy outings”—. As long as my white cell count is low, I either limit who I see or have to wear a face mask-and I really hate that. But that should not limit him.

  • timetobebrave70
    timetobebrave70 Member Posts: 65
    edited July 2018
    Yes I totally agree that it’s very hard for the caregivers. As much as we long for our lives to go back to the way it was so do they. We have the cancer but we have to be sensitive to their feelings too. I felt so bad that I almost lost it with my husband when he asked me what’s wrong. I was about to yell what do you think is wrong! Thank goodness I just started crying. Lol. Then I felt better.

    Kat22, I am glad you are having a better day today. I sure did too. I was able to eat little more and move around little more. I wasn’t as fatigued as I was last few days. I feel achy when I am laying down or sleeping. Not so much when I am moving around. I am just so bummed about my period. I have to call my oncologist tomorrow and see what she says. I was really looking forward not having periods! When mine started after week two of my first infusion she said that would be my last one but it never ended and started being heavy again!!! I have to say tho I am not having the hot flashes like last time that caused me the rashes. But then again that didn’t start till like day 6 and 7. I hope I didn’t jinx my self. Lol

    We will get through this everyone. It’s not easy but we are all fighters. We will have bad days but it always gets better. Hang in there. Let’s kick cancers ass!!!!
  • Washington48
    Washington48 Member Posts: 35
    edited July 2018

    How long dies it take once hair starts shedding before shaving it all off? I am shedding and leaving a trail of hair in my wake!

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