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Chemo starting January 2019

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  • santabarbarian
    santabarbarian Member Posts: 2,310
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    I began chemo in August. The last of the August 2018 folks are finishing up now. Wishing you January 19's all the best with your treatment.

    A huge help through chemo was doing a brief fast or "fasting mimicking" a few days prior to chemo day. A brief fast primes the immune system to rev up & vanquish any damaged cells, and it simultaneously tells healthy cells to go into self-protection mode. Also, your GI tract is empty-ish, prior to stalling out for a few days due to chemo. It was way better for me to fast. You can search my posts about it for more info, and look up Dr Valter Longo at USC who developed it.

    To the person getting port the day before chemo: it will sting!! Maybe get port placed earlier in Jan if you can reschedule??

    take care!

  • kaylajane
    kaylajane Member Posts: 39
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    Santabarbarian,

    did you fast a whole 2 days before your chemo? Any helpful hints for those of us considering trying it? I asked my MO, he said he had no experience with it, but was OK with it if I wanted to do it.

  • B74
    B74 Member Posts: 43
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    kaylajane - I’m planning to fast 48 hours before & 24 hours after, & have done 2 practice fasts (but ‘only’ 48 hours). Do you have any experience with fasting? Depending on your existing diet etc it can take a bit for your body to get used to it. I’ve always been the kind of person who is ‘starving’ a few hours after my last meal, so 48 hours+ is quite challenging. Although - the first 24 hours are the hardest, then it seems to get easier. What helped me was lots of water (esp plain carbonated water) a bit of salt, and lots of distractions!! Some people alsohave a bit of broth for the minerals.

  • santabarbarian
    santabarbarian Member Posts: 2,310
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    I did fasting-mimicking, which is easy. It's 5 very-low-cal days. Day one is 1100 cal, then 4 more days of 800 cals. Chemo day is always the middle day (so, day 3 of five). You can eat a small amount of protein (apx 10-15% of cals - fish or a HB egg), and for the rest you can eat above ground veggies, salads, nuts, avocados & coconut, healthy fats. Roughly half carbs half fats. Can drink bone broth, green tea and water.

    I think it's important to "rebuild" and eat well after the fast... I would lose up to 10 lbs, and then I'd gain back 6-7 in rebuild. Rebuild should be nutrient dense whole foods.

  • Mgm0712
    Mgm0712 Member Posts: 12
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    B74: My trearment ... x4 -T, Cy

    Tomorrow I am going for a wig consultation with this guy...martinocartier. com

    (This site wont let me post links)

    My sister arranged it because she knew my anxiety was preventing me from making these calls. She is making it a special sister day for us. I'm excited... and nervous. I love my hair. I am going to see if I can donate it to his foundation, although it is color treated so I am not sure I can. His foundation that provides free wigs to cancer patients is called

    wigsandwishes. org

    Good luck to everyone starting treatment this week.

    Xoxo

  • Ngai
    Ngai Member Posts: 1
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    Hi B74 and everyone!!!

    I will start my chemo on Jan 3rd with 4 rounds of ACy+Taxol.

    What is it like for the 1st round of treatment? I heard I will need to be there for the whole day. =(

    Thanks.



  • B74
    B74 Member Posts: 43
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    Good luck with the wig consultation Mgm0712! I hope you find something really nice. I'm going to the wig library next Wed, and am hoping my 13 year old daughter will come with me to give advice (if it doesn't freak her out too much). I hadn't actually wanted to get a wig thinking it would look fake and be uncomfortable, but the nurse at my info session convinced me to at least give it a go. I guess even if I borrow one I don't have to wear it all the time. And even if my family & friends see me without, it might be nice to go out and not have my bald head scream "cancer patient!" to every passing stranger.

    Welcome Ngai - though I'm sorry we all have to meet like this! I can't comment on what's in store for the first treatment, I start the day after you. My nurse told me I'd be there 1.5-2 hours, but maybe it depends on your treatment centre. She did say if there are delays eg. someone getting sick, it could take longer. A work colleague who just went through AC + Taxol told me she generally had a couple of hyper days (thanks to steroids), 1 week of dragging herself around, a week of gradually recovering and then a good week before the next treatment. But I gather it's a bit different for everyone.



  • MLAnne
    MLAnne Member Posts: 65
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    Mgm0712 - there is some magic threshold number of posts you first must make before the forum lets you post links or pictures. I can't tell you the specific number but just keep trying til you reach it.

    Out of the blue today, my port began hurting when I moved my right arm a certain way. I am more than a week past the surgery and it was fine up til now. I called the nurse but she thought what I was describing was normal. Really freaked me out and made me very conscious of my movements. I can tell I will be freaking out about every SE during chemo.

    5 days and counting.

  • RdhJoy
    RdhJoy Member Posts: 14
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    Hello all!

    I start chemo next Friday, January 4th. I’m doing Taxotere and Cytoxan 4 treatments, every 3 weeks, 12 weeks total. Freaked out about all of it.....Been scouring the threads for good advice.

  • Netiseret
    Netiseret Member Posts: 3
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    Hello all! I just started my first chemo treatment (taxotere+carboplatin+herceptin) on December 27, so since I'm right at the end of December, I figured I would join in with the January crew! Infusion day wasn't bad, just very long. Next round is scheduled for January 17. Feel free to ask me whatever- fear of the unknown is the worst part of it all, so talking/learning about experiences surely helps!

  • kaylajane
    kaylajane Member Posts: 39
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    Netiseret: I think you fit right in with us January folk! You have same meds as I do (starting January 2), so I would love to hear your day by day experience with side effects. I am trying to plan some activities that involve a few hours driving (see parents, friends) for the 3rd week after, thinking that is when I will feel the best? Also trying to make sure I will be home close to husband with clippers for when hair falls out.

    Mgm0712 and B74: The wig thing is something, isn't it? I have been looking at websites, and sometimes I can do it, sometimes not. I think I'm gradually getting desensitized to the whole idea, but I think the desensitization will disappear when it actually falls out! I'm going to check out what is available donated at the Cancer Center, but I'm thinking because my head is big, selection will be limited. Plus I figure I will save enough not having hair colored every 9 weeks for a few times, that I can buy one I like! I did ask my son and daughter in law to look at some of the options when they were visiting over Christmas, that was actually fun! Ruled one out as looking like "a politician" and one as having a "take me to your manager" vibe. I didn't quite get that one. There were 2 I thought were possibilities that they liked, so I am going to wait till closed to estimated hair fall out time to order, so it will still be in the allowable return time. I am getting my hair cut shorter Monday...I have been a ponytail girl for years and years, so that will be a change!

  • Mgm0712
    Mgm0712 Member Posts: 12
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    My wig consultation was emotional, but Martino was amazing. He had a wig that was just like my hair, but more beautiful. He advised me against cutting my hair short right now (I have an appointment with my hair girl next week) since I am super attached to my hair. He said with my treatment it will start falling our around day 12-14 and it won't be sudden. When I notice it starting to shed, put it in a pony tail and call him to come in for a buzz and final wig fitting. I will walk out with the wig. He asked how old my children were and when I said 5 and 8 he said sometimes moms bring their kids and have a mohawk party first. Make it a fun memory for them, help with the emotional part for me. He'll cut a fun mohawk and let the kids spray it fun colors and take pictures before the final buzz. During the buzz process he will have my back to the mirror and will turn me around when he is done. He has done this for countless women and he is amazing. I am so humbled and honored to be getting a wig from him. (I posted above about the foundation) The ONE set back was that his last day at the salon is the 16th and he is not returning until the 6th of February. I am going to go to him before he leaves on the 16th with my family. It will be before I am really needing it, but I think worth it to go to him for the whole process. I am so thankful for this man's positivity and warmth. I cried and he understood.Sorry for the long post, this is so much to process!

    Hope everyone is well today!

    M-

  • B74
    B74 Member Posts: 43
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    Mgm0712 - Martino sounds amazing and although losing our hair is going to be tough no matter what, it's a great idea to have a Mohawk party rather than something purely sadI So are your kids coming along?

    kaylajane - no I don’t get what “take me to your manager” means either. How on earth can hair say that?! 😂

    We’re away on a mini holiday for New Years then have a couple of busy days at home (wig consult, blood test, plumber in to fix our broken toilet, shopping for a couple of kids birthday parties etc) before my first treatment on Friday.

    Just wanted to wish everyone a happy new year and all the best for everything ahead especially MLAnne & kaylajane for Wednesday!!


  • Mgm0712
    Mgm0712 Member Posts: 12
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    b74... not sure yet about the kids. This will be 7 days out from my first infusion so I am holding off telling them that coming is an option until I see how I feel. I made arrangements for them to go to my friends house if I decide not to bring them.

  • Salsa_dancer_Shannon
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    Hello all. I start 4 rounds of TCy on January 3rd. I think my signature says the rest. I may not post much but I appreciate this place to share our experiences, support and get to know each other. My general feeling right now is just wanting to start and get this over with. I delayed my chemo from December so it's been too much time to anticipate and brood. 😊 Though I'm really going in with a positive attitude. Just deal with what happens as it comes. I work full time and I'll be working as much as possible. In a strange turn of events, my supervisor at work is also undergoing treatment. She is the reason I got my mammogram after 3 years. It is so nice to have each other's support. I have a hair accessory on order (this is what I call wigs because I just don't like the word wig LOL!). Not sure how I'm going to react in real life about the hair loss.

    Look forward to getting to know you. Best of luck! 💗

  • MLAnne
    MLAnne Member Posts: 65
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    Hello Salsa_dancer_Shannon! Sorry you have to join us. It sounds like you and I are in exactly the same boat cancer and treatment-wise.

    So I beginning to gather my 'armaments' for tomorrow's battle. I have just piled up the stuff people sent me off my 'chemo' wish list without really inspecting it much before today. I open up the cold mitt package - one single mitt! Really, one? I guess I should have read the packaging/description better but still for almost $40 you would expect it to have two mitts in there.

    What is everyone packing in their chemo bag? I've got the cold mitt (singular) and cold slippers. I will bring my phone, Kindle, a real book, maybe a small blanket. What am I forgetting?

  • Jenkins00
    Jenkins00 Member Posts: 99
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    Hello ya’ll. I will be starting in January. I don’t have a date yet. 4 rounds of TC, once every 21 days due to my Mammaprint coming back High Risk, Luminal B. I was delayed due to two revision surgeries in November from my original surgery in September. I think I’m ready at least I keep telling myself this.

  • santabarbarian
    santabarbarian Member Posts: 2,310
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    ML Anne, don't forget some snacks and a beverage. And I always brought a heating pad to put on my breast.

  • Kstinekd
    Kstinekd Member Posts: 12
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    Hi All. I start chemo on Jan. 3. 4-AC and 4-Taxol. Going once every two weeks. I work and have two young daughters; hopefully I can keep up with the clients and the kids. I have terribly thin hair as it is, so I am sort of excited for wigs. Will be thinking of you all over these coming months.

  • RdhJoy
    RdhJoy Member Posts: 14
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    salsa dancer Shannon

    Sounds like we have the same diagnosis and path. I start chemo Friday. Good luck to you tomorrow!

    Great idea asking what to bring—I’m clueless....

  • MLAnne
    MLAnne Member Posts: 65
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    Here's a play-by-play of today's Chemo:

    Meet the nurse. She's very nice. She examines my port, asks me about my meds, making sure I took the steroid last night and this morning. She goes to access it and I ask about the topical for pain. "Oh, if you wanted that, we needed to prescribe that in advance." Great. Hurts but over quickly, and, yes, I do want the topical for next time. Try to draw blood, Nope, nothing coming. Flush. Tries again. Barely a trickle. Has me lie down. Vein cooperates. Blood sent for labs. Attach IV of saline and add more steroid and some anti-nausea stuff. Everything is going well. A bit of waiting on the labs. A bit more waiting. Pharmacist delivers the Taxotere to the nurse who gets it hooked up to me. He then comes over to me to go over all the post-chemo meds (plus topical for next time) and to see if I have any questions. Not more than a few sentences into our chat and I realize I am having difficulty catching my breath. Tell DH to get nurse. Immediately breathing gets worse, I feel flush and then very very hot My face is burning. My lower back begins to hurt and then seize up. Two nurses are now in the room. Taxotere is stopped and switched back to saline on a very high drip. Plus they give me Benadryl intravenously. Side effects begin to go away. Oncologist comes in. Checks me out. Says we are going to have to switch the plan. I ask about the drip rate, can we go slower? Says no, my reaction was so sudden and immediate that it would be risky. The one she wants to use, Abraxane, will need to be pre-approved with my insurance. So now we wait.....

    Scared

  • ingerp
    ingerp Member Posts: 1,514
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    Chiming in from the May group (the April group is actually a much more active thread) to say hang in there, ladies. This too shall pass. I'd highly recommend reading the threads from a few months before y'all started. So much good information in them. FWIW, a bit about my journey. . . I did not do a port and was fine getting the IV every week. I also didn't ice hands/feet--just wore sandals and said no thank you to any warming blankets. I figured if the point of icing is to cool down the extremities, I could pretty much do it by what I wore. I ended up with minor neuropathy on the bottoms of my feet but really not bad at all. I brought my own snacks/tea bags but my cancer center had a pretty well-stocked kitchen. They also offered lunch if you were going to be there midday. I tended to bring newspapers/books to read (didn't want to watch too much TV, except when the World Cup was on), but with all of the texting/updating friends, the time goes pretty quickly. For my Taxol/Herceptin, I was probably at the treatment center 3-4 hours. They checked my blood every time before I was okayed to get tx. Then the premeds (steroid, Benadryl, Pepcid, Zofran), then Herceptin for 30 minutes and Taxol for 60 minutes with flushes in between. The IV Benadryl puts a lot of people to sleep--it just made me kind of "spinny." Diet-wise, I didn't do much different *except* really push the protein (and I did give in to my weird ice cream craving--ate it every day). We had red meat probably 5-6 times/week, plus I had a protein shake every day. My blood levels throughout were really good--in fact my MO said I was the only patient she had who was actually making blood through chemo. My tx was on Fridays. The steroids kept me pretty energetic through the weekend and I'd start to get a little droopy Sun/Mon. I can't say I ever felt bad--just very heavy and low energy. By Tue/Wed I was pretty much back to normal.

    I'm just about exactly five months PFC, and I have enough hair that it's making me a little crazy (in a good way, I suppose). I never did a wig--just wore baseball caps or bandannas when I went to the gym. I stopped wearing the head gear at about 12 weeks PFC.

    Remember you will get through this and out the other side. Really you will.

  • Jenkins00
    Jenkins00 Member Posts: 99
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    MLAnne - That is so scary about the reaction, glad you are okay now. Sorry about having to wait on insurance. This is another fear of mine considering I am allergic to many medications. I dread taking anything. I developed a rash on my chest after my third surgery in November from one of the preps they used on my skin. Plastic Surgeon said I could see a dermatologist for this, but I already have a steroid cream so I have been using that.

    Kstinekd - I don't have young kids anymore but I do work full time and hope I can during this process. Luckily our company just implementing teleworking.



  • B74
    B74 Member Posts: 43
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    Oh MLAnne I’m so sorry that happened, how awful & terrifying... and upsetting that after all the waiting you didn’t even get to go through with the first dose. I hope the insurance can be sorted out quickly.

    (And yes an allergic reaction is one of my big fears too).

  • Salsa_dancer_Shannon
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    MLAnne, I'm sorry about your reaction today! That is so hard to have to wait again. The anticipation is hell! I hope you hear back and can get started again quickly. My supervisor had what sounds like the same reaction last week on her first. They gave her something and tried a slower drip, which was successful. I think I'm going to ask for a slower drip to start! Yikes!

    RdhJoy, yes similar paths. Medicating Actually looking forward to starting tomorrow. I'll let you know how it goes.

    Hang in there everyone! <3

    PS you can call me Shannon Loopy

  • Mncteach
    Mncteach Member Posts: 241
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    Oh MLAnne! How awful! Now the waiting agin.... I think that is the worst part of this, all the waiting and unknown!

    Shannon— good luck tomorrow!

    I returned to work today for the first time since my Mastectomy- only 4 hours but the kids were great (I teach 5-7 year olds) but am definitely ready for bed

    To all— we are going to beat this! 2019 is going to be our year! Sending big healing hugs to all!

  • RdhJoy
    RdhJoy Member Posts: 14
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    ML Anne I’m so sorry to hear that happened. Hopefully they can get it figured out for you ASAP.

    Shannon good luck tomorrow!

    Thanks to all the ladies for the advice!!

  • kber
    kber Member Posts: 243
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    Hi - first post here because I just found you guys, but what a great resource!

    I actually started in December and am going in for my 3rd (of 4) AC treatments tomorrow, followed by 12 taxol treatments. I guess the lingo is AC (4) + T (12).

    Once that's done, we will figure out the best surgical course of action.

  • moderators
    moderators Posts: 8,057
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    Dear kber,

    Welcome to the BCO community. We are sorry for your diagnosis but glad that you reached out to our members to share your story. We hope that you will find support and information here that will help you along the way. Let us know if there is anything we can do to support you as well. The Mods

  • Salsa_dancer_Shannon
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    Hi ladies, not much to report from me. TCy completed today with no adverse effects during infusion. I wore cold booties on my hands and feet though the hand ones didn't work well, probably cause I kept taking them out to play cribbage lol! I'll have to figure that out for next time. We'll see if any of it helped to prevent neuropathy or nail problems. I sucked on ice chips to hopefully help with mouth problems.

    DH and BFF joined me and the 3 hours went fast. I brought a blanket which I used, my meds, my BC binder, and a cooler with ice packs in it for the cold socks whick worked well.