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Chemo starting June 2018

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DTR808
DTR808 Member Posts: 21

Hi,

Anyone else out there starting chemo next month?

Just starting this so we can all support each other throughout this process.

Start date for me is TBD, but likely mid-June.

I am stage 2A (2 tumors, 2.2cm, 2.3cm), ER/PR+, HER2-, 1/7 lymph nodes. Am currently waiting on OncotypeDX and MammaPrint results. MO already gave me two chemo options, AC-T or Taxotere/Cytoxan and so torn on which one to do (the onco and mamma tests will hopefully push me in one direction). I REALLY want to try and keep my hair (giving cold caps a try)and know that the chances are not as great with AC-T, but I guess I've gotta do what I've gotta do. Anyone else also confused about what path of treatment that they should go with?



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Comments

  • GreenEyes81
    GreenEyes81 Member Posts: 66
    edited May 2018
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    Hi DTR808---after a month of thinking chemo was off the table...foudn out today I just don't fit with normal "treatment" plans. My MO litterly said I needed to listen to my gut, do what it says and have the best chance of "peace of mind". I respect that 100%...my gut has been huge to me. I knew it was cancer before I got a mammo the first time. My gut says chemo, thus would be starting first part of June also.

    I found it very interesting you posted you had two tumors. Were they on the same side? Muliti-focal? I had multi focal last July, 3 tumors. 10 months later...I am back again. There is not a lot of research on multi-focal early stage hormon positive cancer...thus the "gut" direction.

    I am really curious to see what your onco dx ends up being!

  • DTR808
    DTR808 Member Posts: 21
    edited May 2018
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    GreenEyes81- I’m so sorry to hear that you have to deal with this again...and so soon. :(

    Yes, multi-focal on left side. I, too, am anxious to get both my OncoDX and MammaPrint results back as this should help guide me in the right direction, treatment-wise.

    Have you gotten the OncotypeDX test? Have you thought about getting the MammaPrint test? I would highly suggest it if it’s an option for you.
  • GreenEyes81
    GreenEyes81 Member Posts: 66
    edited May 2018
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    My first onco was 15, they ordered a 2nd time and it was denied. Since it is meant to detirmine the chance of a recurrence...they say I don't qualify as it is a recurrance. My MO is calling to see if he can explain how it would help being multi focal and that some of my pahology is different from the first time. I asked about a mammaprint today actually, its not a test my doctor is familar with to be honest. I don't know much myself, he just prefers the onco dx. He feels it gives more info rather than a yes/no from mammaprint. It's on my list to read up on. As is, I would be getting TC.

    If you can add you stats to your signature it will be great for others to chime in also.

  • LibbyLouWho18
    LibbyLouWho18 Member Posts: 37
    edited May 2018
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    Hi all,

    I am also waiting for the Onco results to determine if chemo is needed. My oncologist suggested TC x 4 followed by radiation. I was on the fence and confused if chemo was the right treatment, and she suggested this test as a way to make a more informed decision. Tuesday will be 3 weeks, and the waiting is terrible!

    DTR, when did your dr order the test?


  • DTR808
    DTR808 Member Posts: 21
    edited May 2018
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    LibbyLou - my Oncologist just ordered the tests this past Monday so don’t expect results back for another 2 weeks or so. I had to push him to order it as he was of the mindset that he would recommend chemo regardless of whatever resulted from the tests. I think he’s just the aggressive type and wants to throw the kitchen sink at it because I’m relatively young (44 yo). Not good enough for me though. I’ve been doing my research and have a coworker whose cousin is neighbors of the founder of Mammaprint so have been well versed in the specifics and positives of having this test done.

    I am sending you positive vibes for a LOW OncotypeDX score! Hang in there.



  • RiRi11
    RiRi11 Member Posts: 70
    edited May 2018
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    Hello!

    Im starting Chemo in June 11th.


  • DTR808
    DTR808 Member Posts: 21
    edited May 2018
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    RiRi- best of luck to you! Please keep us in the loop on how you’re doing. What type of chemo are you going to be on?


  • RiRi11
    RiRi11 Member Posts: 70
    edited May 2018
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    thank you! Im doing CMF

  • EveyHammond
    EveyHammond Member Posts: 1
    edited May 2018
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    Good morning lovely ladies!!

    This is my first time posting, and I wanted to share a POSITIVE experience. Lord knows we need more of it. I had a patient that works in radiation that gave me hope and I hung onto that for dear life during my treatments.

    I have one more week of radiation to go, so technically I'm a May Girl, but I wanted you all to know that you can do it. Here I am after 25 radiation treatments. One more week to go.

    I was so worried about burns and fatigue, but I have not missed a single day of work (I have 2 jobs) and am doing really well. Once the team dialed in my schedule, the only fatigue I feel is just the running around here and there to treatments. All very normal and completely understandable. I even added some walks after work which I hadn't done much of during the chemos.

    The Rad team gave me instructions of twice daily aloe and nightly Aquaphor. I had a harder time finding 100% aloe and was using the CVS brand with Aloe listed first. I developed crazy, crazy itching at about week 3 so I found an organic 99% aloe gel. This dried out the skin more, but I felt it helped the itching a little. The Dr put me on a hydrocortisone 1% cream, but that did nothing. They called in Clobetasol Propionate cream .05% and it was magical. Just start there.

    I also use Miaderm and My Girls some of the time and on weekends when I can walk around the house lubed up. The Miaderm has a nice smell to it, but the My Girls just plain ol stinks. Looking back, I would honestly get the Miaderm.

    They sometimes use something called a bolus which is a gel pack to mimmic fatty tissue and it helps bring the radiation up to the surface of the skin. The redness increases after the bolus, but goes right back to normal after a day or so. There is scatter radiation that bounces off my sternum and clavicle, which you can see in red. That's where the Clobetasol works miracles.

    If you have any questions, I hope I can help. I have gotten so much out of this website and others that have gone before me. Good luck, and you CAN do this.

  • InnaB2018
    InnaB2018 Member Posts: 766
    edited May 2018
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    Hello, everyone. I start AC+T regimen on June 1. Scared out of my mind.

  • RiRi11
    RiRi11 Member Posts: 70
    edited May 2018
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    InnaBIm scared as well. One day at a time. I will be thinking of you. Stay strong ((hugs))

  • caligirl22
    caligirl22 Member Posts: 1
    edited May 2018
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    InnaB2018 I start chemo on June 1st as well. I’ll be doing AC for 4 rounds then Taxol for 4 rounds. I’m definitely nervous but talking with friends who’ve been through chemo has helped. I’m trying to really take one day at a time

  • DTR808
    DTR808 Member Posts: 21
    edited May 2018
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    innab and riri - exactly why I started this topic. Please know that we are here for you and to support you! Good luck and stay strong - this is temporary and too shall pass.

    Caligirl - the regimen that you are going to go through is what my Onco is suggesting as well. I'm scared! He is giving me the option between that and TC. Waiting for my OncotypeDX and Mammaprint scores to help me decide. I really want to try and keep my hair so going to do cold capping. Are you going to try this? I've read that it's tougher to keep hair on AC-T than on others types of chemo but I am going to try regardless.

  • rockcity
    rockcity Member Posts: 155
    edited May 2018
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    dtr808- there is a thread for coldcappers. The ladies are very helpful and will answer any questions you may have. They have helped me immensely through my capping. I've completed 5 sessions and have my last chemo and capping tomorrow. I don't know what the final results will be but it really has helped me psychologically to mostly look like myself by keeping most of my hair ( so far) during chemo. It does seem like AC is tougher on hair retention but most women are happy they capped.

    Good luck with your chemo and capping. It feels like chemo lasts so long, but here I am ready to ring the bell tomorrow! You will be there before you know it too

  • wonderland
    wonderland Member Posts: 2,769
    edited May 2018
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    Hello Everyone. Thank-you letting me share a quick story with you, especially for those of you who are deciding to buzz your hair. A good friend of mine has been diagnosed with Hodgkin's Lymphoma. She had made the decision to buzz her hair as it started falling out during chemo (she started in March). A few years ago I read on BCO the suggestion to throw your hair in your yard so birds can collect it to build their nest. I told her about it and she thought it was a fabulous idea. Well, this week she found a nest in one of her hanging baskets with her hair woven in it by mama and papa bird. How cool is that!

    Wishing all of you the best during chemo and through the rest of any treatments you may have. Heart

    image

  • DTR808
    DTR808 Member Posts: 21
    edited May 2018
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    Rockcity - how exciting! Congrats on getting through chemo! Tough hill to climb and I’m sure you’re so happy to be finally done with it tomorrow! Are you doing radiation as well?

    Can I ask you what type of capping you have used and how happy you are with your capping so far? I have read the cold capping forum, but there are just too many posts to look through although I’d say I read through a good amt of them. I’m trying to decide if I want to do the Paxman, Dignicap or the Penguin caps. Seems like the Paxman and Dignicap is less hassle as you don’t need to swap caps out every 30 mins and make sure you have the correct temp on the caps at all times, but seems like most people use Penguin with pretty good success. Sigh.

  • DTR808
    DTR808 Member Posts: 21
    edited May 2018
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    wonderland - I love that! Thank you for sharing that beautiful story! :

  • Weeeddie
    Weeeddie Member Posts: 17
    edited May 2018
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    Hello ladies I just thought I pop in from April girls, I have just finished my 4 round of AC today, I will be having 12 rounds of Taxol as well but just to let you, it is doable, a little piece of advise

    1 Drink fluids fluids and more fluids , i aimed 2 to 2.5 litres per day.

    2 Clarityin worked really well for me as I got Neulasta Injection, I started day before chemotherapy and took it for 10 days as per advice on previous thread and it worked for me

    3. Don't be hard on yourself, take it one day at a time

    4. Check previous threads some great ladies with great advice has helped and no doubt will continue to help me through.

    You will get through it, we are all fair stronger then we think, best wishes and prayers to you all

  • rockcity
    rockcity Member Posts: 155
    edited May 2018
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    dtr808- because I'm HER2+, node positive, HR positive, and had a lumpectomy, I win the prize for getting everything they can throw at this. It's going to be a long year. I'm getting a breast MRI and follow up mammogram in June. It it's fine, radiation starts in June, alongside with continuing HP infusions for the rest of the year. However, finishing chemo and those pesky cold caps is a big milestone for me.

    You can check to see if your infusion center has Paxman or Dignicap. They are less hassle and don't require a cold cap helper every infusion. The nurse fits you once and you just wear it for the required time. Penguin, arctic cold caps, or chemocaps are labor intensive for your helper. You also need to get dry ice and bring all of your supplies in a cooler. I use penguin cold caps. I think they are more adjustable and I can get a better fit with all of the Velcro. My infusion center also does not have Dignicap or paxman so I am on my own. I have heard that you can ask penguin for used caps and get a reduced cost per month. Wish I had known before I started. Reading a lot of posts on the cold cap thread, AC tends to cause a bit of hair loss early on , but some people start to grow their hair back on taxol. I have TCHP as my regimen so I’m only speaking from what I read.

    I think all of the caps are shockingly cold at least at first. You may want to consider taking some tylenol, or ibuprofen and an Ativan before the infusion. I hate taking drugs so I did without for the first infusion, and regretted it. I now take those meds to get me through the capping a bit easier.

    I hope your infusions and capping go well with minimal side effects

  • InnaB2018
    InnaB2018 Member Posts: 766
    edited May 2018
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    caligirl - I will be doing the same regimen! Hope we will both have an easy time with it.

    Riri, dtr - good luck with your chemo!

    Just got my bone scan and cat scan results back. Both are good, thank God. Had a few glasses of wine to celebrate the good news. Can’t believe wine will be out of limits for 4 months. I am afraid rads are in store for me as well, since i had lymphovascular invasion. Thats’s what I get for missing 3 years of mammogramms. This has been a shitty year altogether. And it all started in January, when my dermatologist found a tiny pink dot on my arm, biopsied it, and informed me that it was melanoma in situ. I got scared and went to all the doctors to check for other problems. All was well until March, when BC was found. Evidently, my karma is compromised! All i need is a bald head.

    My MO didnt recommend a cold cap in my case. I have thin hair, and she said I will lose at least 50% of it, which will leave me half bald anyway. Going wig shopping tomorrow.

    Your support is priceless! Talk to you tomorrow, ladies.

  • rockymountaingirl
    rockymountaingirl Member Posts: 48
    edited May 2018
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    Hi, everyone! I'm scheduled to start chemo on June 11, doing four cycles of taxol (paclitaxel) and carboplatin. The taxol is to be given weekly, and the carboplatin every three weeks. My cancer is triple negative, and with triple negative, it is just assumed that of course you're going to have chemo; the only question is how much and what kind. In my case, the cancer identified through mammography was actually pretty small, none of the other assorted "stuff" that an MRI found in my breast was additional cancer, and my lymph nodes were clear. Based on that information, my oncologist decided that twelve weeks of taxol and carboplatin will be enough. (She had initially suggested that twenty-four weeks of chemo, involving four different chemical agents, would be needed.) I am a little nervous about not doing the twenty-four week plan, because triple negative is so aggressive, but I think the oncologist knows what she's doing. And I know that chemo is always a balance of risk and reward, and sometimes more just isn't better.

    My chemo uniform has been selected with care and is ready to go. I have a Wonder Woman tee shirt in a size large enough to go over whatever else i may be wearing, and a pair of dress riding boots to remind me of better days to come. (I was going to wear my regular riding boots, but since at any given moment they are a) scuffed and dusty, b) very dirty, or c) incredibly filthy, depending on conditions at the stable where my horse, Rosie, lives, I decided that it would be better to wear something a bit more presentable. And less likely to get me kicked out of the chemo facility for bringing filth into a place that's meant to be clean.) Unfortunately, I will also be wearing a "dignicap," since I intend to try to keep at least some of my hair. I say unfortunately because the "dignicap" looks like a prop from an old science fiction movie, and in it, I look an alien from some other planet. There's only so much that a Wonder Woman tee shirt and a pair of dress riding boots can do to counteract that.

    Good luck to everyone who will be starting chemo in June. I wish for all of us that we should have an easy time, with no side effects, and that the chemo should do its job well!

  • RiRi11
    RiRi11 Member Posts: 70
    edited May 2018
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    wonerland-thank you for sharing that beautiful story and picture

    Weeedie- thank you so much for popping in and giving us advice (I read about the Claritin and plan on asking my MO if I can try it)

    InnaB- you or karma did not do this! I dont know why we were delt this hand, don't blame yourself. I was doing that to myself since my DX and nothing good came from it. Now Im ready to fight and you are too Happy

    Rockcity-Congrats on getting to the bell! Good luck today and ring it loud!!!

    I will not be cold capping and wasnt even given a scrpit for a wig. My MO said I may not lose hair, maybe 25%. I will let you know during my journey and also post in a CMF thread to help ladies just starting.

    Hope you all have a great day


  • InnaB2018
    InnaB2018 Member Posts: 766
    edited May 2018
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    Hello, ladies. Did anyone try juicing? Some people swear by it, but I just can't believe anyone has thetime to make fresh juice every hour! I do like the juices, though. It's the prep and cleanup that kills the joy for me.

    Picked the wig today. It has more hair than I do, but the shop owner said it can be thinned out to match my luxurious locks (that was sarcasm, if you didn't catch it 😋). It will be dyed and cut to make it look close to my color and hair style. Believe it or not, I am trying to hide my condition from my 82 year old parents, so I want to look like myself for as long as I can. They know I had a surgery and will have a series of infusions, but I told them it's because I have fibroadenomas. It will be much harder once I lose my eyebrows, I imagine, but will think about it when it happens. I hate cancer!

  • DTR808
    DTR808 Member Posts: 21
    edited May 2018
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    rockcity - thx so much for the recommendations! Super helpful!

    RockyMountain - welcome and good luck! No doubt you will kick camcer’s ass!!! Please let us know how the Dignicap ends up working for you!

    RiRi and InnaB - pls let me know how your first treatments go! I need to mentally prepare myself for AC possibly!

    Thank you all and so glad you are all on here!

  • LibbyLouWho18
    LibbyLouWho18 Member Posts: 37
    edited May 2018
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    I joined this group thinking that I might be starting chemo and/or radiation in June.

    As of Friday, I'm still waiting on the Onco Dx test results.....almost 4 weeks after doctor ordered the test. (Lab, Dr. On Vacations, and insurance have all caused the delay).

    The waiting is so difficult, but I've enjoyed reading that you all have your struggles too! We are all here together, right?

    Sincerely,

    Anxious in Atlanta

  • InnaB2018
    InnaB2018 Member Posts: 766
    edited May 2018
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    Right, LibbyLou

  • YYC_Girl
    YYC_Girl Member Posts: 5
    edited May 2018
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    Hi Ladies,

    Well it looks like I will be joining your June2018 Chemo group. I see my MO tomorrow for a full rundown on the treatment plan, but have been coached by my nurse navigator to expect the "full meal" deal as I won the lotto on having all the elements you can possibly have. I hope the MO is a patient one...I have a LOT of questions. I will check in with you all once I get the treatment plan.

  • juliechris
    juliechris Member Posts: 1
    edited May 2018
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    I found out yesterday that I join you all and start chemo next Wednesday June 6. My oncotype test came back a 29. :(. My oncologist kind of set me up for a letdown there, telling me she thought it would come back low (I don’t even know what she was basing that assumption on). I do 4 cycles of Doxorubian and cyclophosphamide and weekly paclitaxel for 12 weeks. (Is this AC-T?) I have 2 daughters, 13 and 16. My husband is supportive and does a lot at home, but has a really demanding job. No extended family anywhere close. We’ll be okay, I know know there are those with less support, that’s for sure. And I am lucky I work part time and can go on hiatus from my library job. But I’m still scared. I’m underweight; I switched to vegetarian diet after diagnosis a month ago- that plus anxiety and I lost 12 lbs in a month that I couldn’t really afford to lose. So I’m trying to eat a lot of good fats and just more food in general so we’ll see. Rockymountain-I am doing the Dignicap too. Oh- my onco said I might have to self administer neulestra shots? Ummmm, no. I will be asking about options on that; I was too overwhelmed by info yesterday to process that until now(!)


  • domzie30218
    domzie30218 Member Posts: 47
    edited May 2018
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    Hi Ladies,

    This is my first post ever but have been reading these forums for support. I start chemo on June 8th. I'll be doing TC for 4 cycles (every 21 days). I'm also going to use Penguin cold caps and am hoping for good results! Wishing you all the best of luck!!!

  • LibbyLouWho18
    LibbyLouWho18 Member Posts: 37
    edited May 2018
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    Hello ladies.

    I finally got the Onco test results today after waiting almost 4 weeks due to Insurance delays. I had a lot of time to think and prepare about the possibilities, and my MO had suggested TC as a potential treatment.

    Looks like I will start TC x4 on Thursday, June 7th. At this point I'm so grateful for the support on these pages. I feel prepared and ready to fight!!!!

    My husband is a different story. He is having a difficult time processing everything, and questions everything. Please keep us in your thoughts....he's going to drive me nuts with all of his questions! :)

    Julie-- my score was a 28, so I understand your anxiety, and agree with feeling overwhelmed with information. Does your MO have a nutritionist that could help you with food? That might help you BEFORE starting treatments. Also...give yourself a shot??? That seems dangerous. I know there is a Neulasta Onpro that may be an option for you.

    Domzie--wishing you the best with treatments. Will you also have radiation?