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Starting Chemo October 2018

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  • Each_day_2018
    Each_day_2018 Member Posts: 66
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    Good Morning All! Hope everyone is doing well with their treatments...or at least managing side effects!

    Going for Round 2 (AC) tomorrow....Not looking forward to it. I hope I had enough practice after round 1 to get better control over SEs....Not ready to be out of commission for several days again.

    Shaved my head over the weekend. While it does suck, I'm not constantly worried about when I'm going to lose the hair now. Now, if only my leg hairs would fall out!

  • Notgivingup
    Notgivingup Member Posts: 143
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    Good morning fellow warriors! I have been lazy/tired the last week. I haven't walked or exercised. Today I forced myself to go for a 20 minute walk. Just under a mile. I need to not slack on walking/exercise.

    I hope you all are doing well. Next Thursday is my 3rd round of TC. Sone days I want to not do this anymore because I am so tired from it. Other days I'm fine with it. I think getting back to walking and eating better(yes slacked on that too) will help with how I feel about this. Ok done whining.

    For those who have treatments this week, take good care of yourselves. Those suffering from se, I hope that they aren't too bad for you. Let's get another round under our belts!

  • Kjelftr
    Kjelftr Member Posts: 11
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    newfromny,

    You got this! I’m 13 days( hairl loss right on track)post first TCHP infusion. This is all about side effect management. Ladies let’s make a list of things that helps.

    Frozen fruit in water

    Peanut butter

    Pure Aloe Vera

    Sweet potato

    Walking outside

    CBD

    Powerbars

    Gatorade


  • PatriceL
    PatriceL Member Posts: 58
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    Hello Warriors!

    So sorry some of you had such a crap week struggling with se's. The blessing is that now you are prepared and not only know what to expect, but how to fight back for the next round. Remember, drinking as much as you can and eating even just a little bit helps so very much. Hydration is so important to feeling better and getting the gross out. So have a drink my friends, have several and keep going. Be sure to tell your MO and nurses about all of your se's, you never know what magic they can work to prevent them in the future. And always remember, it is just temporary, and every single day is one more closer to being done with this poison nonsense forever. We are strong and resilient and will get this done.

    My hairline is receding to the point that I just have a little poof smack dab in the middle of my head. Tried to tie a scarf all fancy this morning and looked like I was about to tell fortunes with a crystal ball. Ah well, maybe with more practice, but I did not have the patience this morning, so I am sticking with bandanas and skull caps for now. I was told yesterday insurance will not pay for a wig. So that's awesome. In other news, the razor stubble on my legs is holding on for dear life. I am led to believe that for those of us who are doing AC then T, that some hair begins to grow back during the T. Let's hope the hair that grows back is on our heads, and not those weird chin hairs we women of a certain age get.

    We are getting thru this, my sisters in arms, one treatment at a time, we are moving forward toward the light at the end of this tunnel. I am so proud of all of you, fighting on in the face of terrible reactions and shitty se's. We got this, as much as we didn't ask for it, we will adapt, improvise and overcome. Bring it on!!!

    Thinking of you all!



  • annie60
    annie60 Member Posts: 295
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    Happy Halloween!! Today was a good day. I pray that the rest of you are getting a break from from SE"s. I am still dealing with some nausea and stomach pain, but all in all, a good day. I miss Diet Mt Dew!

    Annie

  • Taurus567
    Taurus567 Member Posts: 10
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    Hi everyone, I have been snooping around this site for a few weeks now since I received my dx. I am thrilled to connect with so many women that have either gone through this, just started like me or have a few more to go. I received my first chemo yesterday. I will be having the total of 4 every 2 weeks and then the T part for the next 12 weeks on a weekly schedule. After all the drugs given prior to chemo and chemo then after, I came home and felt as I could not even climb my stairs or keep my eyes open. My tongue felt numb and I just stayed in bed until this morning. Now I feel pretty normal but my questions is this...I don't feel nauseous and I am scared to take the nausea med that I was supposed to take this morning as I feel like a zombie. Could it be that I will not take it so hard or could it be that I will get hit all of a sudden? Anyone experienced this?



  • RhosgobelRabbit
    RhosgobelRabbit Member Posts: 502
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    hi Taurus welcome! Sorry that u have to be here but welcome aboard. What they told me is don’t wait to be nauseous before u take the meds, if u wait til u are it’s really hard to get it under control. I took proactively on schedule at least for the first 5 days on the lower level med stepping up once or twice and then felt it out from there and it’s worked out well. It sounds like u got ur first chemo under your belt. Congratulations! 1 down! I am actually finishing the AC part next week onthe 8th. It’s not fun but it’s doable. Hang in there and all the best to u!!!

  • Taurus567
    Taurus567 Member Posts: 10
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    Thank you so much for replying to my post. I feel like there is so much support here that we all need. No matter how much family support we have, no one really knows unless they have had or have this dx.

    I am having chemo first, they are trying to determine if they can save some of my lymph nodes and see how I respond to chemo since I am ER+ however, we do know that I have at least one lymph node involvement as it was enlarged and showed macroscopic results on my initial biopsy. Also, I am grade 3 and my Oncotype score came back 28.

    They prescribed 3 Nausea meds of which two were highly suggested for 3 days and one of them only when needed. I have no problem taking them tonight but as silly and ridiculous as this may sound, I had bought movie tickets to see a movie that I would love to see (Bohemian Rhapsody). I bought them before my dx on a pre-sale and I am looking forward to it tonight at 7. I am scared that if I don't take the nausea meds I will get nauseated and if I do I will be so sleepy and exhausted like yesterday that I won't be able to go. Either way I seem loose. I already have had to cancel and change so many other things...I don't know what caused the extreme exhaustion and sleepiness yesterday, the chemo, the steroids, the nausea meds or all 3 but it was heavy!

    Thank you again!


  • Fritzmylove
    Fritzmylove Member Posts: 262
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    Welcome Taurus! How are you feeling today? Were you able to go to the movie? I really want to see that one! It sucks making plans around treatments. Especially things you had planned before even being diagnosed. I had to cancel a vacation I had planned months ago that happened to land a week after my first chemo. In hindsight I probably could have pulled it off, but as soon as I was diagnosed, but my husband and I chose to cancel it since we didn’t know how I’d react to the chemo.

    I hope you’re able to figure out what does and doesn’t work for you this round for keeping SEs at a minimum. Everything is such an unknown when you do your first tx, and what works for one person, doesn’t always work for someone else.

  • SmilingDawn
    SmilingDawn Member Posts: 27
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    Hi all you beautiful ladies!
    I am day 3 after my last 4/4 AC treatment. I have stayed on top of SE's which makes a huge difference! I had been dealing with horrible heart burn and acid reflux, but started taking Nexium the day of treatment, even though I had no se's, and everyday, and so far I have not suffered that se. I take Senekot each night starting the day of treatment, and it helps with the constipation, and drinking lots and lots of water keeps the toxins out of the system and helps huge! I take the meds that they prescribed always timely to make sure I do not get nauseous. I've done that from day 1, and have not delt with much nausea at all.
    So far, se's haven't been too bad yet, especially the weakness and lack of stamina. I am about 70% of what I normally feel, but we will see what the day holds and the weekend.
    I start Taxol in 2 weeks. They say it will be easier but we will see.
    I have found when getting past the days of se's, on the good days, to live life and enjoy every moment, especially the weekend before the next treatment. Having good days, doing things we really enjoy, helps get through all of this.
    Happy FriYaay and have a great weekend and be blessed! If you are suffering se's, hang in there, they will pass, but seriously take the meds, prescribed and suggested, before se's set in. It makes a huge difference.

  • Fritzmylove
    Fritzmylove Member Posts: 262
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    Debert wow!! I’m kinda jealous that you’ve been able to avoid many SEs! I stay on top of all of my meds and still feel like garbage for a week. Crazy how differently this affects everyone! I hope T is easy for you! Congrats on completing A/C!!

  • Yellow15
    Yellow15 Member Posts: 1
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    hi i remember feelng tge same way when my hair came out in clumps i cried....i finished chemo may 17th and have a head full of hair now......it to shall pass.i had 4 rund of A/C and 20 radiation treatments.....i was triple neg so had to have both....along with lumpsectomy and lymph node removal .....i look back now and think of all the love and suppport i had to get me thru this process.i did turn down the shot when my white count dropped aftr every treatment and was blessed to get it back up by the next bloodwork visit before my nect treatment....hang in there all the side affects are temporary😊😊😊

  • Sadlynew2018
    Sadlynew2018 Member Posts: 173
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    hello everyone! I haven’t posted in a couple days so wanted to check in to see how everyone is doing. Yellow, thanks for checking back and giving us hope for the future, especially as to hair! How awesome to have a full head of hair by now! The second round of AC was definitely tougher than the first. The nausea was tough but I think I needed to keep on top of my medicines better for that. I have my third round of AC this Wednesday. If all goes well, I should complete AC treatment thr day before Thanksgiving! I’ve shaved my head but the stubble is starting to hurt. Does it hurt anyone else? Mine just seems really sensitive.



  • Taurus567
    Taurus567 Member Posts: 10
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    Good morning Fritzmylove and everyone else! I hope all of you are coping well. I am feeling very good this morning. I can't believe I have not had any major SE so far. I got to go to the movies last night and made sure I took the nausea meds before going to bed. The best thing about them is that they finally helped me sleep all the way through the night. I have had insomnia for about a month now so that was huge for me! I still wonder if it will start getting worse once I get my 2nd chemo. I don't feel much different now than I did before. The worse day was the day of the chemo, which was on Wednesday. I felt exhausted and could not even get myself moving but no nausea. My arm is getting sore with the PICC line but not too bad. I am still hesitant to take my nausea pills in the morning as I hate the feeling of being out of commission the whole day.. I did not take them yesterday morning so I figured I would try that today and only take them at night. Today is my third day anyways. Has anyone that has felt minimum SE on the first round, gotten worse on the second? Just curios as I am still a bit surprised. I hope I am not speaking too soon!

    I have a question for anyone that has been on AC-T dose dense. I have to start my shots of Zarxio today since due to the frequency of my chemo, every 2 weeks, my white blood cell count will get quite low. They have indicated that this causes bone pain, have some of you experienced this?

  • anx789
    anx789 Member Posts: 241
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    Yellow15, how did you manage to get back your white count? Any tips for us

  • Fritzmylove
    Fritzmylove Member Posts: 262
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    Sadlynew yes, my scalp hurts. It wasn’t too bad when my hair was initially coming out, but now that it’s 80% gone, it is very sensitive. I’m going to bring it up when I see my MO in a week because I’ve actually started getting little bumps all over my head that really hurt. Wondering if it’s the way I’m showering, the head coverings I wear, or maybe a chemo reaction.

    Taurus glad you were able to make it to the movie! My 2nd round was tougher than the first, but I felt like I got over the SEs quicker if that makes sense. I’m not on the same chemo as most all of you. I’m doing TAC. I get a Neulasta shot 24 hours after each chemo. The first time I had bone pain, but the second time I didn’t. On round one my WBC count after Neulasta was way high (20) but on round two it was super low (1.7) I have no idea why there was such a huge difference but my MO didn’t seem concerned either time

  • TrishaFL
    TrishaFL Member Posts: 19
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    Taurus567 glad you enjoyed your movie. I'm on day 5 of my first dose dense AC-T plan. Taking regular Claritin or generic brand can help with bone pain. I started taking 1 the day before the first of my 7 self injected shots of Granix and then one an hour before the shot. Will continue to take it for 2 or 3 days after and start back up for the next round.  So far so good.

    So far my SEs have been very minimal with tiredness and a headache. And I'm really hopeful it stays that way but prepared in case it doesn't.   


  • Taurus567
    Taurus567 Member Posts: 10
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    Fritzmylove it is so interesting how we are all so different. I hardly felt anything after the first day. Is TAC the same drugs just in a different order?

    TrishaFl it seems you have a similar DX as me as well except I have grade 3. Today was my 4th day from my first chemo and was the first day I got a real bad headache since last night that lasted almost all day. I. Had to take Tylenol 3x since last night. I also felt the most tired. I have not taken Claritin but have not had any bone pain, is that accumulative? Mabe I should be taking it regardless. I gave myself the 2nd shot toda

  • Fritzmylove
    Fritzmylove Member Posts: 262
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    Taurus TAC is Taxotere, Adriamycin, and Cytoxan. I get all three, one after the other, during each treatment. I'll have a total of 6 rounds, 3 weeks apart, and then I'm done. From everything I've been told, TAC is very similar to AC+T, you just get it all at once and are done sooner.

  • Taurus567
    Taurus567 Member Posts: 10
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    Hi everyone! I pray all of you are managing well. Today I am on my 5th day of AC and have woken up to feel the best out of all 5 days. I did not take any of my nausea meds last night as they make me feel week, light headed and just not well. Obviously this would be the better than feeling totally nauseous but luckily, I did not get too nauseous and decided to test my body as I hate feeling sick. I think they gave me the headaches as well. Today I felt more "normal".

    I am dreading the hair loss and the anticipation of it. I don't want to shave until I actually start shedding, I did cut my hair short but I can't get myself around the complete bald look so I am going to wait until I see it is time.

    Fritz I see. I just dread the 12 weeks following the AC. I still have 3 more AC to go plus the 12 weeks of Taxol.

  • joules44
    joules44 Member Posts: 52
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    Hello, beautiful women! I haven't posted in awhile but wanted to check in. For all of you suffering from heartburn/acid reflux, I wanted to tell you that acupuncture has been a godsend for me in that regard. I've been going every other week and it has really helped clear up the horrible acid reflux I had plus it is improving my overall energy level and immune system. I wanted to share that with y'all in case you were interested in that form of treatment.

    I've had three weeks of Taxol and return tomorrow for Taxol plus Herceptin. Hair starting to really shed now. It's kind of fascinating to watch this stuff work. Silver lining is that those pesky little chin hairs are no longer growing in! Gotta hang on to something!

    Hope everyone has a beautiful day and you're feeling like a warrior.

  • annie60
    annie60 Member Posts: 295
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    How did you all handle shaving your hair? Did you use clippers and cut/shave it really short and then let it fall out? Shave it completely?

    Trying to get the courage just to shave my head.

  • Sadlynew2018
    Sadlynew2018 Member Posts: 173
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    hey Annie!

    It’s such a daunting task but it’s one I’m thankful for (In a weird way) once I was done. I used clippers to shave it really close. Then the prickly stubble began to fall out in the days or weeks after. I’m not sure it was the smartest way because my scalp was really sore from the stubble until it fell out. But it made the wig sit better. Good luck with yours! Just think, after it’s gone, we are halfway there to getting it back

  • Notgivingup
    Notgivingup Member Posts: 143
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    Hi Annie,

    I had cut my hair to chin length the day before I started chemo. When it started really shedding, I buzzed it to 1/4 inch. From there it fell out mostly on its own. When I only had about 10% left, I went and had someone buzz it to my scalp. I didn't "shave" it. Each step took me about a day to adjust to it.

    Also I hope everyone is doing well. I have been pretty busy this weekend. I am feeling good, so we all know what that means.....back to chemo this week. Last time it was 2 days before my birthday. This time it is the day before my 27th anniversary. We will celebrate our anniversary hopefully this weekend. Gotta keep my sense of humor through this.

  • annie60
    annie60 Member Posts: 295
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    Right now I am crying. I thought I was ready for this. I thought after passing out and being so sick from SE's, I could handle my hair falling out. Just going to bite the bullet and shave it.

    Hope everyone is doing well. We spent a great weekend with our granddaughters then drove home through the beautiful Ozarks. You have to grab those good days and run with them.

  • Sadlynew2018
    Sadlynew2018 Member Posts: 173
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    oh Annie, my heart breaks. I was the same way. It’s like we push so hard through starting chemo and get going and then boom, hair falls out. For me, it made it real. My hair was everything to me. Well, a lot. It’s a hurdle in our path to the finish line. A very tough one. You are so strong how you grip to the silver linings. It will be hard but you can do it. We are all here for you.
  • Fritzmylove
    Fritzmylove Member Posts: 262
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    Oh Annie I’m so sorry you’re having such a hard time! This whole process just plain sucks. But we’re strong warrior women. We’ll get through it

  • annie60
    annie60 Member Posts: 295
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    We will. Just seems each new development is another obstacle to overcome. But overcome we will. The tears are passed and tomorrow morning I will overcome hair.

    Thanks for all the encouragement.

  • Newfromny
    Newfromny Member Posts: 108
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    Annie60 I’m right behind you with the hair I’m on day 11 after first TCHP infusion and have been dealing with SEs every day nausea, diarrhea, no appetite, lost weight, exhausted, feeling a little better today but now I’m waiting on the hair falling out and know it will be tough, somebody said maybe it won’t, no it will based on my regimen. Overcome we will

  • annie60
    annie60 Member Posts: 295
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    Forgot to set my clock so I am up at 3:00 am. Let's blame it on chemobrain. After waking ever few minutes it seemed to brush hair out of my face and having to clean the drain in the shower, I am ready to be done with hair. I had thought about putting it off, but this is a mess! I shed more than my daughter's Golden Retriever - my hair is the same color!

    Newfromny - I am with you in this. I hope our next round is easier.

    Fritzmylove and Sadlynew201 - you are wonderful women. Thanks for the encouragement,

    You know, I never gave Pinktober much thought before. I was annoyed by it this year. But just think, next October - most of us will be done with chemo and infusions. My heart just soared typing that. Hold on, ladies, hold on. We'll ride this out together.