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Starting Chemo December 2019

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  • Eigna
    Eigna Member Posts: 256
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    Hey Marmotka - have you told your kids what’s going to happen with your treatments and all? I haven’t told them yet. Don’t want them worrying for no reason. When I will start the treatments I will tell them.

  • Bejeweled
    Bejeweled Member Posts: 22
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    I am doing the Compazine and Zofran rotation. I haven't been successful with anything else (did try some ginger tea, but not sure what other variation may be useful). I go back for a toxicity check on Wednesday and if I am the same, I will see what else can be done. I won't be able to go on like this. At least I am not vomiting- but the nausea just never goes away completely.

    I am glad others are hanging in there - stay strong!

  • Hmbscit19
    Hmbscit19 Member Posts: 13
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    Bejeweled, I’m so sorry to hear you’re having such a rough time. Hopefully your MO can come up with a solution.

    I start tomorrow and the nausea part is my biggest worry.

  • Marmotka
    Marmotka Member Posts: 19
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    Hi Eigna, I told my kids Saturday. My son has been having plantar warts lately so used that as a parallel. I explained I had a very serious disease but that doctors where very confident they could kill the cancer (somewhat like a wart that wants to grow and spread). But that it would take very strong medicine to kill it and that it would necessitate that I devote all of my health and energy towards eliminating it, and that I would be tired. He understands from the wart medication that some good cells will also be damaged in the process, like his skin around the wart, but that this will happen throughout my body. I told them it was not contagious and that is important, I think.

    Both kids were mainly fixated on the hair loss though. So we spent a lot of time discussing how I would look, and how it made them feel. They started crying a lot by that point, realizing I would no longer work, etc. There is a young mother on YouTube called Dee Doherty who has wonderful videos that I used to show my kids what it would be like. And they were reassured.

    Good luck! Let me know.

  • Hmbscit19
    Hmbscit19 Member Posts: 13
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    Greetings to all!

    I had my first AC today and so far so good. No side effects yet but I know that won’t last. Happy to have my port because it made everything very easy.

    Sending good vibes to you all 💗

  • Eigna
    Eigna Member Posts: 256
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    Thanks Marmotka for sharing your experience with the kids. I will probably tell them this coming weekend or on the day of my first treatment. Will check the Dee Doherty you tube videos. Thanks.

  • halezma
    halezma Member Posts: 13
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    My children are 19 (girl) and 7 (boy). When I told my son about my breast cancer about 2 weeks before my mastectomy. I told him cancer was in my boobs and the only way to get it out was to take them off and get new ones. Then when they upstaged my cancer and said chemo and radiation I told him that cancer can be very sneaky so the doctors have to give mom medicine to find any sneaky illness but the medicine is super strong and will make Mom not feel well and will make my hair fall out. He actually went with me to my radiation consult and keeps talking about when I get to go play with the lasers :) He did struggle a little last week when he had a cold and couldn't cuddle with me. Now my daughter is funny. I told her back in July when I was diagnosed. She cried for 5 minutes said are you going to die I said no then she said ok let's kick cancer's a$$. She has been my comic relief in all of this. She's in college about 90 miles away so she's close enough to make quick trips home. She took my son and nephew to her house over Thanksgiving break to give me a break before my 1st chemo. I did tell my son's teacher about what was going on so if he seemed different at school that she would know. Kids are smarter and tougher sometimes than we give them credit for. Good luck talking to your kids....we're all here for you!

  • maryjv
    maryjv Member Posts: 269
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    Good afternoon all! I have been following along in the posts and learning lots of valuable insight...my name is Mary 34 yrs old. I'm from San Antonio...recent diagnosis of TNBC IDC 1.8cm, not sure staging (ct scan of lymph nodes pending for Tuesday), hoping to start chemo next week (sounds sad to write that)...just had my port placed today ❤️ Very happy to find a place to share and learn from all of you who are going through this journey along with me🙏 Oh! I also have a 7 year d daughter...have told her but certain she does not understand or grasp what is about to happen...worried for her of course

  • Eigna
    Eigna Member Posts: 256
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    Mary -Welcome to our group. I'm starting chemo on Tuesday and I have two boys 7& 9 yo. So we can encourage each other. What kind of chemo are you having? I'm doing 4 cycles of TC. Haven't told my kids yet. Probably this weekend or on Tuesday. Let us know how things go next week.

  • maryjv
    maryjv Member Posts: 269
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    ❤️ thank you Eigna! I have 5 months of chemo...4 cycles of doxorubicin and cyclophoshamide (every 14 days),followed by weekly doses of paclitaxel for 3 months..the ct scan of lymph nodes will determine staging and treatment post chemo (radiation). I am waiting for genetic testing results to determine if I will also need mastectomies (I feel that even if genetic testing is negative I am still going Forward with mastectomies because I have two maternal aunts who had breast cancer young as well-no genetic markers for them). Are you working through chemo? This is a major fear I have but all my doctors are advising me to power through treatments (I am a dietitian. And i work with dialysis patients). Also, where do you live? How as your journey been? How is your family coping?? So many questions!! Getting ready to go shopping for all the chemo meds they are recommending before start!
  • Eigna
    Eigna Member Posts: 256
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    Mary- wishing you best of luck with your treatments! We can do this! Actually today was my last day of work. I took a medical leave till I finish my treatments. I feel sad today. But I know right now i should focus on myself and to get better. This journey has its ups and downs for sure. It’s not easy but we will get through it one day at a time.

  • maryjv
    maryjv Member Posts: 269
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    Eigna-so glad to hear you are taking some leave...still considering at this time. You are right, need to take this one day at a time...today when I had the port placed I woke up very emotional, up until this point I have only had the initial diagnosis breakdown but waking up from anesthesia I bawled to my husband and profusly appologized and kept telling him this is not fair to him and my daughter, laughing about it now of course!!! What a journey we are on!!


  • margo53
    margo53 Member Posts: 131
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    Hi Mary... welcome! Glad you found us....I’m sorry you are going thru BC and can’t imagine doing chemo for a long time. I hope your treatment will be very successful.

    I have my 2nd of 4 treatments on Dec 23. My side effects from the TC have been tolerable. The Neulasta was difficult for me. My main side effect right now is my taste buds aren’t working right. Nothing tastes right....everything is bland blah tasting. I got my hair cut very short but it hasn’t fallen out yet.

    Eigna.... all of the best to you on Tuesday. Are you cold capping? Sorry I know you have probably already written about that. Glad you were able to take some time off work.

  • Ivana
    Ivana Member Posts: 16
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    Best of luck to you! I will start my chemo on Dec. 31st. Getting port put in this coming Friday.

  • Ivana
    Ivana Member Posts: 16
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    Hello fellow warriors in a fight we didn’t want!

    Has anyone out there done the cold caps? I am trying to decide if they are worth the expense and also how tolerable they might be. Any insight would be helpful.

    A bit about me: first diagnosed in’07, had chemo, lumpectomy, then radiation in left breast. Now, recurrence has occurred after 12 years! At least is seems many advances..hope to tolerate chemo better this time around. Now in right breast, two tumors, main one is HER2 positive, about 1.8cm, but also smaller dcis tumor and lymph node involvement.

    I have two sons, 13 & 15 year old. The 13 yo is more sensitive and concerned, but I’m sure the 15yo is worried too. Trying to stay positive and focused on work and holidays thru this journey!

    Look forward to chatting here with you, Ivana.


  • maryjv
    maryjv Member Posts: 269
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    Hello all! Thank you Margo for your encouraging words and Ivana very sorry you find yourself on this journey once again...I thought I had posted earlier but for some reason it didn’t capture! I am very glad to have found this place to connect with all of you as we go through this journey and fight!!!! ❤️🙏
  • chelsea1
    chelsea1 Member Posts: 5
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    Hello, everyone. Glad to have found my sisters in this journey. I started Taxol last week and will be treated once a week for 12 weeks. Will also be getting Herceptin for a year. I was pleasantly surprised that I had a very mild reaction to the chemo last week - just a little bit of wooziness. I thought this boded well for the next few weeks at least. I had my second treatment yesterday and the outcome was different. Woke up early this morning very queasy and by 7 full blown nausea. I haven't had much to eat today - drank a lot of ginger tea and am chewing ginger gum. I took Zofran this morning but a friend told me I should take it prophylactically next time to try to avoid the whole situation. Has anyone tried that? Did it work? I'm worried now that the side effects have escalated so quickly, what will happen next? 12 weeks of surprises? This is all so hard to manage emotionally. How's everyone else managing?

  • Eigna
    Eigna Member Posts: 256
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    Hi Margo - how are you feeling today today? Are you feeling better than the first few days? No, I’m not cold capping. Too much to think about. Don’t want to worry about cold capping. I’m so nervous about Tuesday...

  • kat333
    kat333 Member Posts: 38
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    Hi everyone

    I'm so happy to have found this site. Mary I had the same experience yesterday after port placement. Diagnosed in September, double mastectomy in October, and begin chemotherapy Monday. Still trying to sort out why waking from that simple procedure was so traumatic. Thankful to have you all to go through this journey with.

  • maryjv
    maryjv Member Posts: 269
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    KatToday the pain at the port site is so much worse! Of course yesterday it was numb but today has been very uncomfortable!! Just took some pain meds and hoping to get some good sleep tonight..

    Chelsea-The chemo educator told me to take the nausea meds prophylactically as well and said you can base your side effects on the first week of treatment...so if you get sick on day 2 should stay the same or symptoms as well, but not sure as I have not started chemo!

  • Marmotka
    Marmotka Member Posts: 19
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    Hi everyone, I'm getting my first round of AC on Thursday afternoon. PICC line will be installed the day before. I'm a nervous wreck! Trying to keep a brave face for my two kids (4 and 7).

    I'll try a diy cold cap with the advice provided by Karen from the November club (with links on page 2). It may not prevent hair loss but protects hair follicles. But I agree it's yet another thing to worry about when there is already so much.

    If anyone else is doing AC then taxol, let me know.

    ! I'll update after my first chemo. Good luck Eigna and Kat on your first round of chemo. We can do this!

  • kat333
    kat333 Member Posts: 38
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    Mary today the port site is sore but nothing compared to the cut, above it, on my neck. It was so painful when I woke this morning. A pain med did nothing so I took off the clear, ultra sticky, bandage and left the area completely open. The pain subsided immediately. I also removed the covering on actual port and replaced it with a band aid. I hope that you get some relief from med and are able to sleep.

  • kat333
    kat333 Member Posts: 38
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    Hi Marmotka ... I'm a wreck too. Am interested in checking out the diy cold cap and will try to find the post with info. Thank you and Good Luck on your first round too. Yes, indeed, we can do this!

  • maryjv
    maryjv Member Posts: 269
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    Oh no Cat! Glad you figured out a way to get some relief!

    Marmotka-I am doing AC then taxol, 4 cycles of AC then 12 cycles of taxol for total of 5 months! I am ready to get this chemo started but so worried about all the possible side effects, immune system drop but want to kick this cancers butt already!!!
  • Bejeweled
    Bejeweled Member Posts: 22
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    Chelsea1,

    Just wanted to answer your question about the nausea. I had my first AC treatment on 12/4. I am doing Taxol but not until a little later, so I can't speak to Taxol specifically. The AC knocked me out with nausea though. I didn't actually throw up because of all of the Zofran and Compazine, but I can only describe the nausea as debilitating for a few days. I had a hard time getting enough hydration as a result as well.

    In terms of taking the Zofran prophylactically, I don't know for sure. My MO tells me to take it at the first twinge of nausea to stay ahead of it. Mine was bad enough that it would wake me out of a sleep, so I would just rotate between the Zofran and the Compazine and it would reduce it, but it never went away. The medication they gave in my port during the infusion worked well until overnight of the first night - I think it was called Emend. I ended up back in the office for fluids and IV nausea meds a week after the infusion.

    All of that being said, they have decided to have me come back 2 days after my infusion and hang fluids to ensure hydration, and also more anti-nausea medication, to try to stay ahead of it through the weekend, which was the worst of it last time. We will see if that helps. I will say that I had pretty bad headaches during that time, which can be caused by the Zofran, but also by dehydration. They eased up a lot after the day I did the fluids.

    By 8 days after the first infusion I felt basically normal, except maybe a little tired and winded when moving around too much. I am not looking forward to going back this week, but I appreciate that they are trying to change things up to lighten it up.

    People keep telling me different tips and tricks and I have tried several. Sucking on a peppermint hard candy helped a little, as did Gin Gins (hard ginger candy). Tea did not help, nor did ginger ale, but everyone is different. MO had me stock up on Pedialyte popsicles in prep, since the general idea of drinking much made my nausea work.

    I wish you luck and hope you feel better!

  • Jlpeterson63
    Jlpeterson63 Member Posts: 2
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    Hi everyone: I just joined this group. My chemo start date is Dec 30, but I’m hoping it can get started sooner. I see the surgeon on Wednesday and hope to have my drain removed and be cleared for me. Of course I’m not looking forward to it, but I’m anxious to get started, because waiting and worrying is just awful.

    It’s nice to hear from others who are experiencing this right around the holiday season.


  • Ivana
    Ivana Member Posts: 16
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    Hi Mary,

    Thanks for your encouragement, we all need some of it! I am anxious to get started, yet scared of the chemo side effects, because I hope to keep working, at least part time through my treatment. I guess we’ll find out more once we start. Be sure to work closely with your oncologist to manage the side effects. When I did A/C last time, the nausea was bad until the third anti nausea med they tried on me, Emmend!


  • Jlpeterson63
    Jlpeterson63 Member Posts: 2
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    Hi everyone:

    I just now joined this group

    I'm scheduled to start chemo Dec 30 but I hope to get going sooner. I see the surgeon on Wednesday to have a drain removed and hopefully get cleared to start chemo.

    It's nice to have others to talk to during this dark holiday season. : (

  • Ivana
    Ivana Member Posts: 16
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    Hi Marmotka,

    I’m starting my chemo on Dec. 31, but having Herceptin,Perjeta and Taxol for my tumor with lymph node involved this time.

    As far as cold capping, thanks for your tip, I looked at the links. I'm thinking of trying this one, since the regular ones are so expensive:

    https://www.amazon.com/gp/product/B07TCBSMFJ/ref=ox_sc_act_title_3?smid=A2QK9I3AAORRZQ&psc=1

    I was going to order an extra set of the gel inserts to replace halfway thru treatment. I am scared of losing my hair since that was a side effect that I had a lot of trouble with the first time, even though I had a wig. Just felt so un-human, so unattractive & ugly version of myself so I want to do it differently this time.

    Let me know if you’ve bought any cold cap and how it feels? Besides the high cost of the ‘real’ ones for chemo out there, I’m afraid that if it’s too uncomfortable and too much hassle, I’ll give up after a chemo session or two.

    If anyone else here has any experience with cold capping, please let me know...have to decide which way to go this week in preparation.

    Have a nice Sunday all!


  • maryjv
    maryjv Member Posts: 269
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    Ivana-right there with you! Gonna try to work through chemo but willing to accept medical leave if needed...

    welcome JLPeterson63❤️ like you I am hoping to start chemo ASAP...ultrasound and biopsy of lymph nodes on Tuesday and then seeing oncologist on Friday...hope the insurance is verified by then!!! Scared of the side effects and going to the store to purchase all of the tips and tricks everyone has been recommending...