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Chemo Starting August 2018

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sunnybear
sunnybear Member Posts: 19

Hi all. Just wanted to start an August Board. I know some of us started at the end of July but figured those of us that started could hopefully provide support for those about to start.

Welcome and good luck to all you strong people!

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  • sunnybear
    sunnybear Member Posts: 19
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    So, I am sitting here for my first of 4 TC treatments and must say I am no longer extremely anxious, happy to get this started as that means closer to the end! The only wrinkle so far is my insurance denied Nuelesta unless I demonstrate a need. I will be monitored next week so we'll see. My MO is trying to get the shot I would administer approved but not sure yet. Hang in there those scheduled to start in August! We are all in this together and will help each other through! Couldn't have made it this far without the support.

  • moonrabbit59
    moonrabbit59 Member Posts: 21
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    hi sunny bear! I’m starting my chemo this Friday but I figured that it was so close to August that I would join this thread. I’m feeling like you... just ready to get this started. I’m going to go with a strong determination and hopefully I’ll get through everything ok

  • sunnybear
    sunnybear Member Posts: 19
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    Hi Moonrabbit! Welcome, a strong determinationa and positive outlook definitely helps! Because this board is so helpful I am prepared with an aresnal of meds, etc and have been drinking a lot of water and hope to continue to excercise but i know there will be down days too. What treatment are you having?

  • moonrabbit59
    moonrabbit59 Member Posts: 21
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    I’m having AC 1 time every 2 weeks for 4 treatments m followed by taxol 1 time every 2 weeks for 4 treatments. Then I will have my expanders exchanged for implants. Then onto radiation (still waiting to meet with radiologist for the regiment but looking like 5 weeks of that.) then I’ll be given a monthly shot to force me into menopause followed by the post menopausal pill for 5 years. I’ll have to edit this later because all of the actual drug names escape me.

    I am also armed with some anti nausea medication. I am awaiting a shipment of items I bought from an online hat/scarf store that I hopefully will get before the hair falls out. Otherwise, I’m busy with kids and the usual summer stuff

  • Bostoniangal25
    Bostoniangal25 Member Posts: 177
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    Hello, ladies!!! It’s looks like I will join you soon!!! I believe my treatment will be TC 4 treatments every 3 weeks. Had an appointment with oncologist and radiologist. My case will review at Bostin mass general hospital to decide if I need 5 weeks radiation course. It’s a pity they can’t taylor treatment for each patient to shorten the course!


  • Bostoniangal25
    Bostoniangal25 Member Posts: 177
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    Moonrabbit, why you will have your implants and then radiation? It’s will deform the implants!!!

    I was done mastectomy and immediate reconstruction, and I might have radiation as well, they could put expanders. But if radiation will damage my implants , I have to do revision surgery- ughhh


  • Bostoniangal25
    Bostoniangal25 Member Posts: 177
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    Sunnybear - hello to you!!! I wish each of us to be strong and conquer the evil!!!! I m doing this for my 14,13 and 5 y o kids .

    I m 41! I think , you and Moonrabbit are young as welll!!

    I m grateful to have such s huge group of supporters , do much learned here!!!

  • Livlife
    Livlife Member Posts: 36
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    Hello Ladies!
    I kept on checking if anyone would start this group, thanks for creating it!

    I am having my 1st treatment of TC (x6) on August 1. I was given 2 option either do x6 of TCH or x12 of Taxol- with Herceptin for a year for either treatment. I chose the TCH. I asked my Onco if I can only do x4 but she strongly suggest to do 6 if I can. She said that’s the goal but at least 4.

    I have 2 Kids and 37y/o and wanted to be done soon, then I’m doing x20 of radiation after. Good luck to all of us. I’m super worried of the SE’s. Have you guys prepared your chemo bag yet?!
  • moonrabbit59
    moonrabbit59 Member Posts: 21
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    Bostoniangal: I’m at Mass general too! Love my team there. I did forget to include that in between the chemo and radiation I will have my exchange. I start chemo this Friday. I’m from CT so I will not do my radiation there though because it’s a hike to get there everyday for 5 weeks.

    I have a 15, 12, and 3 year old so we have a lot in common. I’m 43. Maybe we’ve already run into each other without knowing!

    LivM: I’m going to prep my bag today. I’m also getting the haircut because mine is really long and I don’t want to shock my 3 year old. Thinking about dyeing it too for fun but I don’t want my scalp blue if I do a bad job at it. Anyway, I’m bringing a book, some magazines, I like to knit, and I’m making felt playfood for my preschooler, so I have a lot to keep me busy

  • OCDAmy
    OCDAmy Member Posts: 289
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    Hi ladies, just wanted to pop in and tell all of you that my chemo experience (four rounds of TC) was not bad at all. I was really surprised. I needed very little nausea meds and was able to work taking off on chemo day Friday and the following Monday. Drink lots of water. I iced my hands and feet. Once you get through the first time you'll know what to expect and it will get easier. Best of luck, you've got this.

  • MiCyn
    MiCyn Member Posts: 29
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    Hi all, I will be starting Tues July31st so close enough to August. I'm going today to chemo class. Can't wait to get this started. I will be doing TC x4 ,although my MO says if I tolerate it well, may go 6. I have soooo much to do before Tues. Getting hair cut (not shaved) Monday. I have longish, super thick, curly hair. Haven't had short hair since high school, so will be interesting. My DH reminded me yesterday, I have been talking about doing a drastic hairstyle change for years now, so GO FOR IT! I'm hoping I like it so much I don't go back to long. I think I may be the oldest one here. Sad & shocking to see how young you all are. Hugs & Blessings, Cyn


  • sunnybear
    sunnybear Member Posts: 19
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    Good morning - I am in my 40's - 48 (which is why I am here - over 50 no chemo) with a 17 and 14 year old. They have been so supportive, along with my husband - I am blessed.

    LivM - Welcome. I took others suggestions and packed a bag with my binder, a soft new blanket, water, snacks, tablet, phones, etc. I had everything I needed but wished I brought more snacks or a lunch - they had some crackers, water, ginger ale there so we indulged a little but next time I may pack a small sandwich. We arrived at 9:30 for blood test, dr visit and then infusion and left around 3, so plan for more time the first time.

    Bostoniangal and Moonrabbit - Funny, my husband is from the Boston area and we often visit that area since his family still lives there, a little north and west from downtown but I am familiar. We live in the philly area so sports rivals have been fun.

    If you don't mind I will give you some updates on SEs. I felt great the first day (they say you do), I was able to run and work when I got back. Trying to eat small meals just in case. No SEs yet so fingers crossed.

    I will pass along a tip from my nurse navigator. She recommended Bryan Joseph eyelash and eyebrow gel to apply every day starting before chemo (if you can). It is available online https://www.brianjosephs.com/html/lash_brow_conditioning_gel.html Not sure if it will work but certainly worth they try. I go for my wig fitting and cut tomorrow so hopefully I will feel better after that. I am dreading the hair loss but trying to be positive about it - nothing we can do about it.

    Good luck tomorrow Moonrabbit! Will be thinking of you!

  • sunnybear
    sunnybear Member Posts: 19
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    Hi Cyn. I also thought about getting my hair cut - I only had short hair once in my life too and often want to do it but never have the guts - My DH says now is my chance. So when it's growing back i can experiment. Good luck on Tuesday! You will do fine!

  • dodgersgirl
    dodgersgirl Member Posts: 1,902
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    SunnyBear- ref Neulasta; check with your navigator as I was provided a card from the drug company that would pay for all but $25 for each OnPro pod. I didn’t end up using it as insurance covered. It may be available to you??

  • moonrabbit59
    moonrabbit59 Member Posts: 21
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    thanks for thé tips! I will add a blanket. I had planned to bring some water and snacks because we’re leaving around 5:30 tomorrow to get my blood drawn at 8:00, meet with oncologist at 9:30, then chemo at 11:00. This was planned real quick so the times aren’t ideal, and then we stay until a plastic surgeon fill at 3:45. With traffic, we won’t be home until probably 8:00. Long day. I’ve had my hair short once, but only to chin length. Never as short as I’m planning

  • moonrabbit59
    moonrabbit59 Member Posts: 21
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    update: haircut is done. I ended up getting a shorter messy bob, so the longest part barely tucks behind my ears. Not as short as I was thinking to originally go, but I wasn’t ready to lose the bangs that I love so much. The back is short Though. Btw: i added an extension cord to my chemo bag for my phone, so i can keep texting my kids on how im doing.

  • sunnybear
    sunnybear Member Posts: 19
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    The haircut sounds great. I should do something fun like that! Like the extension cord idea! I will do thet next time, the cord I had could have been longer. Thanks.


  • MiCyn
    MiCyn Member Posts: 29
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    OCDAmy...Thanks for stopping in & helping to calm my fears about this ordeal. Sounds like you breezed through it with no issues. Yay ! I'm on same trearment as you..

    SunnyBear...So glad to hear first treatment went very well. Im going to be given Neulesta shot the day after my treatment. I was told insurance doesn't always cover entire cost, and it is ridiculously expensive. Social worker at Karmanos has applied for card that will cover any co pay that I may have. I am more worried bout hair loss then anything at the moment. Sounds so silly in the scheme of things I know. I have to keep telling myself, this is temporary and one day I can look back & be grateful for getting through it all. Hope you are still doing good, and wig fitting helps with hair loss fears.. I soooo get it. Funny thing, I have no fear about eyelash/eyebrow loss. I have had blonde skimpy eyelashes & eyebrows my entire life. I have always told my DH, I feel so sickly looking without makeup.

    Moonrabbit5...Sending you positive vibes for your big day tomorrow! I'm actually getting excited about starting Tues. I went to chemo class today, and also the monthly support group. The stories I heard made me feel like I can conquer anything.

    LivM...You start day after me I see. My MO is starting me with TC (x4) but may change it to 6..Then 2-3 week break before 5 weeks rads.. I was also very worried about SEs, until going to chemo class today. Onc RN went over EVERYTHING I was so worried about. We will be OK.

    Maybe we should post before & after pics of our Hair ...I plan to take pics of my long, unruly hair that I have battled with my whole life, and pics of my first short haircut in 40 years! It will someday be a distant memory that I will never forget, and can tell my (future) grandkids about..Blessings to you all, Cyn

  • Gingerobrien
    Gingerobrien Member Posts: 13
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    I start my treatments August 23. Taxol/Herceptin for 16 weeks. Then of course Herceptin for a full year and radiation . Glad to finally have a plan in action and know when this is going all and hopefully . Looking forward to hearing how it goes for you getting tips and ideas how to make better for me

  • sunnybear
    sunnybear Member Posts: 19
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    Moonrabbit - Thinking of you today and hope it all goes well!!

    MiCyn - My insurance did approve Neulasta and I was able to go in yesterday for the the shot! Yeah! I agree about the hair. I have my wig haircut today so maybe that will alleviate my fears. I did buy a beanie for sleeping and originally was so distraught about the thought of wearing it but even though I tried in on over my hair, it wasn't terrible. As I take more steps in this journey I am finding acceptance easier - of course we have no choice but any positive outlook helps!

    Gingerobrien - Welcome - glad you have a plan of action - that definitely made a difference.

  • Bostoniangal25
    Bostoniangal25 Member Posts: 177
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    ok,

    Moonrabbit- good luck again to you!!! Wish you get over this faster today!!!! ❤️Please update us how did it go!!!i sent you a pm today!!!

    Liv, Gingerobrien -welcome, Now we all be a good friends here supporting each other!!!!

    OCDamy- you made my day!!! I wish we all can say the same!!!

    Sunny bear- I wish you kept continue to update us and have easy less s e treatment! Thsnk you for tip!!! We went to Boston downtown past Saturday- it’s sooo beautiful, wish you were here!!!

    Micyn, why you can’t try cold caps- it’s a cryotherapy for keeping hair during chemo, we have some thread about it . It’s not covered by insurance but there are several options!!! Especially it would be better since your hair is thick !!

    I m going for chemo class August 1 and port placement on August 6, have bad veins.

    See you around, pleSe post updates, hug you All!!!


  • Livlife
    Livlife Member Posts: 36
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    Thank you all for the wonderful tip, specially the eyebrow eyelash product. I haven’t had short hair since elementary and I just had my my hair layered and cut shoulder length. I have very thick hair so now it’s so puffy lol. I am not doing cold cap though I thought about it for a long time. Picking up my wig next week. And my chemo class I still have to take it the week after my 1st treatment. Always hoping the best for all of us! xx
  • sunnybear
    sunnybear Member Posts: 19
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    Such a great group already! Thanks for all the support! I am on Day 3 and still feeling good. I thought I would crash today since I don't take the steroid anymore or was expecting bone pain or nausea but nothing so far. I am taking anti nausea meds regularly but still functioning normally. I am still running and feeling good. I even have slept good the past two nights. I pray it continues but wanted to give you hope!

    LivM - I too considered cold capping but knowing it may not work makes it not worth the trouble. One more thing to fuss with or worry about during chemo. I think once I/we embrace the bald and rock the wigs we will be fine!

    Hugs to all! Happy Friday!

  • MiCyn
    MiCyn Member Posts: 29
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    Sunnybear.. SOOOOOO Happy to see things are going well day 3..Yay!!! Gives me hope too.

    LivM.... Sounds like you have a plan in place, and are ready to Go.I will be getting my hair chopped Monday so I can donate it. I was told that's not possible once I start tx. I also have very thick hair with a mind of its own. Im trying to approach this as a new beginning

    Bostoniangal...I did look into cold caps a little. After watching video, reading up on it, I decided way too much hassle for me. Not sure how accurate this is, but someone had said it seems to be more effective with thinner hair because it needs to get to scalp completely. I have enough hair for 2 or 3 people, seriously. Are you doing it?

    Moonrabbit....Keeping you in my thoughts today. Hope the day went well. I'm sure you will let us all know how you are doing when you can. Wow, what a LONG day it must've been. Awww, short messy bob sounds so cute! Sweet Dreams tonight!

    Blessings to all , Cyn


  • jimiwithani
    jimiwithani Member Posts: 10
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    hi everyone.

    I have chemo school on July 31, port placement August 1 and my first treatment August 2. 12 months of going to get treatment every three weeks seem surreal - around December/January I’ll have surgery and then radiation

    I’m HER2- in my breast but HER2+ in my lymph notes.

    Question. My doctor told me I’m on home quarantine until I see her the week following my chemo. No visitors and no going out. She said she wanted to see how my white blood count was before she decided where I could go etc. is this the same for you folks?

    I’m look forward to getting to know all of you better. I’m in North Carolina.



  • sunnybear
    sunnybear Member Posts: 19
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    Welcome Jimieithani. Not sure about the quarrentine but I know we are told to be careful in case of infection since our blood counts can get too low to fight something, so probably just an extra precaution. My dr told me not be a hermit but use common sense.

    Day 4 and I am feeling some minor bone pain from neulasta but definitely managable. I feel like I have a flu and just want to rest but otherwise fine.

    Moonrabbit, thinking of you and hoping everything went ok yesterday!

  • moonrabbit59
    moonrabbit59 Member Posts: 21
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    thanks SunnyBear! So my experience is so far: a huge headache that has yet to go away (told it was from one of the iv anti nausea drugs), acid reflux that is now gone, dry mouth, tired here and there, constipation, a little foggy in the brain, but ok. I’ve been able to drive as long as I don’t take any anti nausea which so far I haven’t needed. The only problem is that I’m exhausted and can’t sleep. Up now at 1:22 am and trying to fall asleep.

  • RimRoc
    RimRoc Member Posts: 22
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    I everybody, I'm new here. Likely to start TC x 4 cycles in mid-August but no specific date yet. I'm ill at the thought! My MO and quite a few of you are so encouraging, I know I need to let go of the fear factor a bit...

    I am now 5 weeks post left mastectomy and found out only 4 days ago that I need chemo; previously my MO told me I wouldn't need it. But my Oncotype DX came back with a high score (49) AND said the tumor was ER-, so here I am.

    My problem is that after surgery and after they initially told me I wouldn't need chemo, I planned a trip and bought tickets and now I'm wondering if I'll be able to travel. This has me all a bit PO'd as they say.

    Side effect question: my MO said taxotere didn't have much in the way of peripheral neuropathy side effects...more like hair loss and GI stuff. Is this what you're experiencing??? I already have some neuropathy and really really don't want it to get worse...do the cold treatment gloves and socks work???

  • sunnybear
    sunnybear Member Posts: 19
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    Moonrabbit - Sorry about the headache. I know that can be a side effect. I hear you about being tired but not being able to sleep. I was restless. I ended up taking a childrens benadryl and it helped. The rough days for me were 4 and 5, by day 6 (yesterday) I felt pretty normal. I haven't been taking any meds, other than claritin. Although I did need stool softner due to the Zofran. That helped tremendously. One dose. Next time try the benadryl (if you can) for sleeping. I asked if it was ok and was assured it was.

    RimRoc - Take a deep breath. I too was a mess when I was told about chemo. All along (the past 4 months) I was told no chemo but oncotype came back intermediate. 7 days later I started my first treatment. It was a stressful week but once it started I feel better. The SE haven't been terrible and I keep thinking about how this will keep me cancer free. We are here for you every step of the way!

    BTW - I asked about icing to prevent neuropathy and was told it wasn't necessary with 4 rounds TC chemo. They said they would evaluate symptoms as we go and use if necessary.

  • RimRoc
    RimRoc Member Posts: 22
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    does any one know: is it generally considered safe and acceptable to travel during weeks 2 and 3 of taxotere/cytoxan chemotherapy, assuming one is normally healthy and has a usual/standard immune system?

    or is it so common that white counts drops during this chemo that it is pretty futile to plan air travel???

    anyone have any info?