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Starting Chemo in November 2017

Aymerz33
Aymerz33 Member Posts: 41

Hey all! I love these threads I have seen, and since I will be starting in November (just around the corner) I thought I would get one started. It took me a long time to come to the decision to do chemo (stage 1a, Node negative) but because I had an Oncotype of 25 and a High risk Mammaprint I decided that I needed to just go for it. I start 4 rounds of TC on November 6th, and decided not to go with a port. I am going to be using Polar Ice Caps too, to try and preserve my hair. I am 33 and have a lot of life left to live. I can't wait for all this to be over, and I am so grateful that I do not have to do it alone. I'm sure that most of my fear will go away once I have gone through the first infusion, but right now I am pretty much terrified about how it is going to effect me. I am an education coach and I work in classrooms daily, so I will not be able to work while I am going through treatment. It makes me sad! I love the work I get to do!

Anyone else starting in November? Let's support each other!


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Comments

  • Corduroy
    Corduroy Member Posts: 4
    edited October 2017

    I'm starting chemo next week. Not sure what regimen I will be doing. Will use Penguin cold caps if getting a TC regimen, might skip it if an AC regimen. Dreading it.

  • Aymerz33
    Aymerz33 Member Posts: 41
    edited October 2017

    @Corduroy - I am too. I feel like my life is going to be on a huge pause... like, the me today is going to change significantly and I am really not sure how I am going to ever feel normal again. I'm scared and already feel so tired just thinking about it. Trying to stay upbeat, but man it's hard when I know what's coming.

  • hopebringscourage
    hopebringscourage Member Posts: 4
    edited November 2017

    I started in September and am happy to support you all in any way possible:) I just finished round 3 of 6 last week- trust me the way you feel is normal. If you have questions fire away!😁

    Having a positive outlook goes a long way and making sure you get good solid sleep at night is, so important for healing and overall health!

  • Aymerz33
    Aymerz33 Member Posts: 41
    edited November 2017

    Thank you, @hopebringscourage! How are you tolerating things? What tips do you have? :) thank you for being here to support us

  • Trdew
    Trdew Member Posts: 1
    edited November 2017

    Hi all,

    I'm also preparing to begin chemo treatments this month, this week actually! My first of 6 TCH treatments is scheduled for Friday, Nov 3. I am a researcher by nature so have read, read, and re-read what to expect during treatment. It may be crazy but my strategy is "expect the worst and be pleasantly surprised when it isn't that bad!" It is scary, but I've always felt like I can do anything for a little while...and this is just my current reality.

    Prayers for all of us as we prepare!

    Terri


  • Lisette27
    Lisette27 Member Posts: 1
    edited November 2017

    I am doing 8 rounds. 4 rounds AC. 4 rounds T. I started today. I can say the in hospital experience was great. As good as can be expected. Got a little fatigued on way home (wasn't the driver) and now feeling some muscle aches. I had normal cravings and ate normal for dinner but don't expect it to last. I found app (Correction) ChemoWave, I have the direct link but it won't let me share it here. I think it is and it looks like a good walk to report lots of data to yourself. .what you eat, drink, side effects, sleep, appointments. ..good luck to all. We got this!

  • TimesLikeThese
    TimesLikeThese Member Posts: 6
    edited November 2017

    Hi all! I’m starting neoadjuvant chemo tomorrow (PTCH - 6 rounds - every 3 weeks). Ready to get this show on the road. Like many of you, I’m an analyst by nature and have been consuming breast cancer information at an alarming rate ;) Ready for a brain break. I’m definitely learning some valuable life lessons about letting go and being flexible.

    I haven’t gotten my port placed yet, but I will have it before the next round. I’m a little leery of the whole IV thing, but I will suck it up for tomorrow.

    I love to run, so I’m going to get up early to get a run in before treatment. That’s really the thing that keeps me sane these days. Hoping I will be able to keep it up.

    Best wishes to everyone!

  • hopebringscourage
    hopebringscourage Member Posts: 4
    edited November 2017

    Tips:

    Things you should have handy post chemo.

    Tums, Pepto, Imodium (take 2 Imodium with first loose stool. Don't wait to see if you have it again - you likely will😁

    Tylenol/Ibuorofen (for bone pain caused by the Neulesta) this to me felt like flu aches ×50. Getting up and moving actually helps with this and fatigue - try to walk trust me I know it's difficult.

    Super hydrating lotion for face and body-I was using my night moisturizer during the AM too!

    Biotene mouthwash and toothpaste

    Salt/ baking soda rinse (for mouth sores) use severel tines each day.

    Ginger beer or ginger root work well for nausea. I ended up using Ativan/Compazine combo x3 days every 6 hours after treatment.

    Buy hat's or scarves before you loose your hair its much more enjoyable. My friends had a party for me everyone brought one as a gift. Headcovers.com is an awesome site.

    Rest.. rest.. rest!! And learn to say no. It wil catch up to you if you don't and you will become so fatigued.

    After your 1st treatment some of the anxiety disappeared its the unknown that was scary for me.

    Push as much water before and after chemo we need to stay hydrated and it also helps with the nausea. No matter how sick I felt for some reason could always drink water! jello and popscicles count too!

    Well that was a bunch of informatiom!

    YOU GOT THIS!!! There is a rainbow waiting for all of us💖🌈

    I forgot I have been icing my hands and feet along with chewing ice during Taxotere to help prevent neuropathy. So far no signs or symptoms!


  • Aymerz33
    Aymerz33 Member Posts: 41
    edited November 2017

    This is all such good information! I'm so glad that there are a few of us going through it at the same time so we can support each other.

    I'm honestly still really feeling anxious - I am going to have to push myself hard to go through with it, even though I have already agreed to it. My anxiety feels really tedious right now.

    My nurses didn't seem to think that the neurophathy would be a big deal. @hopebringscourage it looks like you are getting the same chemo as I will be getting. How have you felt through it all so far? I'm worried about feeling really fatigued and nauseous. How often are you going in? I can't wait for it to be over with.

  • rljes
    rljes Member Posts: 499
    edited November 2017

    Hi All! I'm sorry we are here, but thankful for the information and support. And Thanks to Aymerz33 for starting this for Nov.  
       I'm in several topics (Surgery in August, Triple Positive).  I am absolutely terrified of starting Chemo and getting a port.  I've postponed my surgery once, and have let my chemo slide for 3 months. But with the encouragement from others from these sites, I have scheduled my Port: Nov 14th & Chemo starts Nov 28th.  Yeah Me. 
       I had a lot of issues with my Dbl Mastectomy, the incisions not healing as they should, my drain tube tried to protrude thru my skin - very painful - that's why I'm so worried about the port.  I have thin skin, plus auto-immune disease. 

      Want to say Hi to HopeBringsCourage! She made a great list. I'm going to add a few other things that I've read about.  (I feel like I have an entire drugstore in my closet) 

    I have been reading and I have found out Everybody Has Different Side Effects. You just never know how your body will react. 

    - Plastic silverware - metal taste at times 
    - soft toothbrushes 
    - Smooth Move Tea for constipation (Target) 
    - satin like pillow cases when/if you loose your hair
    - Sennekot - constipation
    - HopeBC mentioned Baking Soda/Salt/Water - I heard to have Dixie cups and pre-made solution and swish at least 8 times a day. 
    - Nose bleeds - use Arya Nose Gel and get a Humidifier 

       My MO has already given me a list of what I will pick up at the drugstore prior to Chemo:
        Rx Dexamethasone (steroids) 
        Rx Zofran & Compazine for Nausea 
        Rx Lorazepam (anxiety) 
        OTC: Imodium AD & Claritin - (for neuropathy)

    I realize I'm going overboard, but I live alone and have no one to go run to the drugstore if I get a Side Effect I wasn't prepared for.  As Trdew said 'expect the worst and be pleasantly surprised if its not' 
        Good Luck Trdew, Lisette27, Corduroy and Timesliketh - I hope your 1st Chemo goes well. 


  • lovepugs77
    lovepugs77 Member Posts: 108
    edited November 2017

    I was in the May chemo group and finished in August. For those of you who are getting neulasta, Claritin can help with the bone pain. Be sure to get plain Claritin (not D), and start taking it before the neulasta shot. I took it the day of the neulasta shot and for 4-5 days afterward.

    Good luck to all of you getting started with chemo

  • dodgersgirl
    dodgersgirl Member Posts: 1,902
    edited November 2017

    I was in the April chemo group. Finished chemo in August. I am wishiing for minimal side effects for those about to start the chemo journey. My treatment plan was for 4 cycles of AC and 12 weekly treatments of Taxol.

    Drink lots of water around your infusions including the day of infusion.

    If you were prescribed anti nausea meds, TAKE them as prescribed don't wait til you feel nauseous to start.

    Reference nausea, ginger tea, ginger ale, and Sea Bands for nausea helped me.

    As lovepugs77 wrote, if you are getting Neulasta on pro device take Claritin to try to avoid bone pain (I didn't have this SE)

    If you have AC, try to eat frequent small meals as keeping food in your stomach helps with nausea.

    If you are taking steroids or will have steroids in your pre-meds, you may find sleeping all night to be difficult until the steroids wear off. Also due to the steroids, you should feel pretty good the day of infusion and the following day, too. I called those days "riding the steroids"

    For me AC had different SEs than Taxol. If you will be doing Taxol, read the Weekly Taxol thread. Lots of great ideas there. Many people got thru Taxol without too many issues. I found it very drying

    You can get thru this. It is much scarier beforehand as the unknown is a scary place. One day at a time. Post questions here. There will be suggestions. Post experiences to share later for those starting chemo next year. Together we are fighting a beast and together we are strong

  • hopebringscourage
    hopebringscourage Member Posts: 4
    edited November 2017

    YES YES!! I forgot about Claritin. I took this the day before chemo and for the next 5 days. Everyone has different SE but I will share my experience. Within 27 hours of my first treatment I was SICK-nausea, stomach pain, bone aches beyond anything EVER. I lost 9 pounds in 11 days and didn't know how I would survive another round. BUT then slowly I felt better and had about 5 good days before round 2. So gping y into round 2 I was MYSELF. I had switched my eating to mostly clean (I was eating anything that would only last less than 14 days in my kitchen) I started this just prior to round 1. Round 2 was polar opposite- the only thing different I did was take compazine and ativan together every 6 hours for 72 hours. The nausea was my worst SE from round 1 and they use Ativan for nausea. I only had 2 days that round my tummy felt squirerly- but SO tolerable. Really no bone pain and I took Claritin the same as round 1. I just completed round 3 a week ago did most everything the same nausea was tolerable for 7 days soI far (feels liike tolerable morning sickness) more bone pain than round 2 BUT I wasn't faithful with the Claritin but round 1 was the worst. Also feeling a bit more fatigued but this is draining.

    All and all it could have been much worse. I'm so thankful every time was not like round 1😁

    My treatments are every 3 weeks for 6 rounds

    Truthfully I only used the the salt swish 1st round and switched to Biotene with the nausea swishing that mixture all day wanted to make me vomit. I have had more trouble with tastes and my tongue feels like a half healed "burned tongue" everything I eat tastes so spicy even the most bland salad.


    TMI??? LOL LOL🤣

  • PauletteK
    PauletteK Member Posts: 1,279
    edited November 2017

    Hi ladies, I belong to July and August groups and I always park myself in September and sometime in October too. I saw question about neuropathy, I have that SE, my MO suggested to take B6,and B12. After all I soak my feet and hands with epsom salt also. At the same time, I ice my hands and feet during my 3 hours taxol infusion. You got that right I have reaction on taxol infusion so it is 3 hours long for my taxol infusion time. I even do some hand exercises to help my numbness for my fingers. Many people don’t have bad neuropathy just some of us do.

    I still have two more taxol to do, tomorrow will be my infusion day. Honestly I’m nervous already because my reaction. I found Ativan really helps my anxiety and it helps nausea also.

    I think Hopebrings, rlj and DodgersGirl covered all of them. Chemo is doable just remember to stay of top of it and listen to your body do not push it.


  • TimesLikeThese
    TimesLikeThese Member Posts: 6
    edited November 2017

    Hey rljessu! I felt all of those things leading up to my first chemo (which was yesterday). I actually had a major shift in treatment plan laid on me just this Tuesday when I went in to see my MO for a follow-up. I was originally scheduled for surgery (BMX) next Tuesday, but the team met and decided they wanted me to have neoadjuvant chemo to try and shrink the masses first. So, they said -- Hey, let's start your chemo day after tomorrow! I ran around like a madwoman trying to pick up everything on the shopping lists from the forums here (super helpful) because I live by myself also. I didn't want to have to drag my butt out to the drug store if I needed something. I ended up getting everything done in one day, including the prescription pickup (Zofran, Dexamethasone, Compazine, Tramadol).

    My port hasn't been placed yet, but will be done before my next round. Yesterday's treatment was super long -- 6 hours -- but it went very smoothly. IV placement was easy and no big deal (thank God - that was one of my biggest fears). I drank lots of water leading up to the treatment and also did an easy run yesterday morning. Once I got checked in for my appt, I met my nurse (who was amazing). They started with the pre-meds Dexamethasone and Zofran, which lasted about 30 minutes. Next up for me was Pertuzamab (Perjeta), and that took a little over an hour. Then Herceptin, which took 1.5 hours. Then Taxotere for another 1.5 hours, and finished with Carboplatin for a little over 30 minutes. All of those included about a 15 minute flush in between. I never felt anything weird at all. The Taxotere gave me a funny taste, and the Carboplatin felt really cold going in. But it was all pain free and pretty uneventful. I had my mom with me, which was awesome, but I feel like I could do the next round by myself and be totally fine. The nurse also placed a Neulasta on body injector, which will give me an automatically scheduled immune booster later tonight so I don't have to go back in. I'm just supposed to remove it once the injection is done. Super convenient, and also pain free (felt like a mild rubber band snap when it activated).

    Last night, I slept a little restlessly (probably due to the steroids) and have been keeping up with my Zofran. No real adverse symptoms as of this morning. I had a bit of breakthrough mild nausea late in the night, so I took some Compazine as instructed. That knocked it out and also knocked me out :)

    I've been working with an online therapist (through Talkspace), and she has me doing mindful meditation every day. I have found it to be extremely helpful in managing my anxiety. I used to take anxiety meds in my earlier years, and was considering asking for them again (still will do it if necessary). But so far, it's been really empowering to apply what I've learned about centering my mind and grounding myself in the moment to overcome the brain drain that anxiety causes. Running (and just being outside in general) also helps keep me sane.

    Sending prayers, peace, and good vibes your way!

    --Leanne

  • rljes
    rljes Member Posts: 499
    edited November 2017

    TimesLikeTh- Thanks so much for giving such a great detailed description of your day at Chemo.  That helps a lot to know what is going to happen.  I suspect the routine will be the same for me, they said the first time would be at least 5 hours. 
      I'm attending a 'Feel Good, Look Good' (?) Seminar next week, provided by the Cancer Center. Hopefully I can get some hats/scarfs (I'm not going to try to save my hair) I'm rolling the dice and hoping it comes back thicker and curly! 
      HopesBC - No such thing as "TMI" in here. Tell it like it is, I say. 
    Trdew - How did your first day of Chemo go for you? Wishing you all well 

  • cwb1998
    cwb1998 Member Posts: 2
    edited November 2017

    Hi all! I have been lurking on the boards for a while and decided I better jump in. I had my first chemo treatment (AC) on Wednesday and it was not too bad at all! I did have some nausea later that day so I should have taken the nausea pills earlier. I took them as directed all day yesterday and was wiped out. Today I felt almost normal and was able to go to work (I work part time) and eat normal foods. YAY! So I guess now I wait to see what happens over the next few days. Take it easy ladies and good luck to all of us that side effects are minimal....

  • Aymerz33
    Aymerz33 Member Posts: 41
    edited November 2017

    @cwb1988 yay! I'm so happy to hear that you had a pretty easy experience! This gives me hope! I have been SO scared about how I am going to feel!

  • rljes
    rljes Member Posts: 499
    edited November 2017

    Hi cwb1988 - Yes, it gives us hope.  

  • mkn86
    mkn86 Member Posts: 129
    edited November 2017

    Hi :)

    I'm from the september thread. was taking EC (3 out of 4 doses) and starting weekly taxol + carbo next week. skipping 4th dose of EC.

    taxol + carbo tips welcome :)

    also EC was manageable for me. mostly had to deal with fatigue and loss of appetite. food with ginger or tamarind helps with the metallic taste in the mouth. (Think tom yum soup without chilli). also water with any citrus juice (lemon, lime, orange,) will also help with the metallic taste. the sourness of it also helps produce more saliva in the mouth so that you avoid mouth sores too. haven't had a single mouth sore so far.

    I take Emend. and then another prescription for the first 3 days to deal with the nausea. i have hyperacidity meds (esomeprazole) on standby in case that happens during first 3 days after infusion. or i take them too on days that i have prescription meds and stop after day 4.

    Also probiotic drink (yakult) or a small serving of yoghurt or keffir maybe 3-4 times a week to rebalance good gut bacteria. especially on days i have meds/antibiotics. tons of water and fiber... and also prunes for constipation. for some, figs also help.

  • PauletteK
    PauletteK Member Posts: 1,279
    edited November 2017

    Just drop in and see how’s everyone doing. It seems to me everyone got themselves all prepare and ready to go.

    If you do not like ensure milk, there is ensure clear, they actually taste pretty good. Good luck to everyone and have a great weekend.

    I finished my infusion it was uneventful. Thanks God. Now I, trying to pack my stomach since I’m on steroid high. One of my big challenge for chemo is appetite, I lost only 8-10lbs so far so it isn’t bad. But I don’t want to lose anymore. Eat some meat and keep your wbc and RBC high.


  • TimesLikeThese
    TimesLikeThese Member Posts: 6
    edited November 2017

    Hi Mkn86. I was wondering about Emend. I’m on day 2 post chemo, and it seems like the Zofran is not doing it’s job. It will work for a few hours, but then the nausea comes up out of nowhere. I’m thinking I may ask for a prescription of Emend and see if that will be better for me. I also have Compazine, but it really doesn’t need seem to do anything except make me sleepy.

    Best of luck with your taxol + carbo. I did have taxotere and carbo on my first round and so far, nothing unusual except nausea. My next infusion is scheduled for the day before Thanksgiving. I’m thinking this will be one year I don’t stuff myself into a food coma - LOL.

    -Leanne

  • mkn86
    mkn86 Member Posts: 129
    edited November 2017

    Paulette, so happy to hear your infusion was uneventful :) one last infusion to go. you can do it!

    eanne, they give me emend regardless if i have nausea or not. it's one of the drugs i start with right before chemo along with the other drugs. :) and then i have another one that i take along with Emend for three days. :)

    -Kat

  • marleigh
    marleigh Member Posts: 13
    edited November 2017

    I start my chemo treatment next week on Wed. My plan will be AC every two weeks for 4 treatments and T every two weeks for 4 treatments. I got my port put in this past Thursday. 

    I have found a tremendous amount of information on this site and thus think (hope) I have gathered together necessary supplies to help me deal during treatment.

    My MO has already started me on B6 and B12 to get ahead of neuropathy to either prevent it totally or lessen the symptoms. He said if these don't work sufficiently he will put me on L-glutamine next. If neither of these work then I will go on some prescription meds that are specifically for Neuropathy (but I can't remember what he called that drug)

    My MO also has given me my prescriptions but they are only Zofran and Ativan.  I specifically asked why not Compazine and he told me he doesn't use it anymore but he didn't say why. 

    So here we go - all of us Nov chemo sisters will fight this monster together side be side and reach the light on the other side of this road bump we have come across. I feel we can do this!!! 


  • frozentoes
    frozentoes Member Posts: 48
    edited November 2017

    Hello. In four days, I am getting a port and on the 14th I will get the first of 12 weekly Taxol treatments. Following that will be 4 cycles of AC every two weeks. I am grateful to have found these forums. Reading about the experiences of others and hearing their advice has been very helpful. I know I will be reading (and hopefully participating) a lot as I continue through this fight.

    I feel like I am on a constant roller coaster of emotions. I'm trying very hard to keep my composure for my family but getting chemo scares me. Rationally, I know this is the right step for me. No matter how much I educate myself, I can't seem to make self less scared of the possible side effects. It's the unknown that scares me the most.

    For now, I'm off to get a hair cut! At least I can control that for now.

  • castigame
    castigame Member Posts: 336
    edited November 2017

    Marleigh,

    I did 4 DD AC followed by 4 DD taxol.

    About antinausea meds, it is good for nausea but SEs are constipation or diarrhea. Unfortunately you cannot win too much while chemo. I was fortunate enough to minimize nausea meds at home. I took the meds for 2days after 1st chemo. SE kicked in promptly and dropped 10 pounds before #2.

    Ativan is good for anxiety, heart palpitation and mild nausea. Part of chemo, I took up to 2mg per day w no issues. I was able to reduce it to .5 mg overnight wo any withdrawal affer chemo was done. The drowsiness made me sleep quite a bit. It was what I needed bc the ample sleep let my body heal thru chemo and all other meds such as Neulasta,


    Stay strong you can and will do this,

  • rljes
    rljes Member Posts: 499
    edited November 2017

    Hi Everyone 
    Marleigh - How did your port placement go on Thursday? I have mine next week, and have very thin skin. I hope your B Vit help with possibility of neuropathy - I had neuropathy with shingles, and was put on Lyrica - couldn't take it (made my skin crawl and very groggy) Some have very strong reactions with Lyrica, Be Careful if prescribed! 
     Hi Frozentoes (I used to live in MSP - Burrrr)  we will have our ports in on the same day.  I am so afraid mine won't heal and be painful. Everything is such an unknown.  Everyone has Different Side Effects. That's the scary part. Unfortunately My family thinks "its just breast cancer, you'll be fine" attitude - so I have zero support.   I got my haircut very short a few weeks ago. I actually like the look.  Have you had surgery yet? 
      Mkn86 - I have never heard of Emend for Nausea.  I will add it to my list to ask my MO in case the usual doesn't work - Thanks! I absolutely Hate being nauseas. I have almost daily Migraines.  Its like having a Gigantic Hangover without the drinking. (Where is the fun in that?) Then the medication I take for Migraines makes me tired and sleepy, the steroids I take for my auto-immune disease won't let me sleep - so I'm a mess before taking Chemo.   arggggggg. 
       So, everyday is a rollercoaster.  One day I'm ok with the thought of going thru the challenge of chemo, and the next I want to cancel and take my chances without. 
       take care, rj

  • dodgersgirl
    dodgersgirl Member Posts: 1,902
    edited November 2017

    rljess-- I think I was most afraid of nausea and vomiting before starting chemo (April 2017). I took the anti nausea meds as prescribed by MO on time for the first 3 or 4 days (even waking up to take them at night for the first night) I also HAD to have something to eat every 3 hours or so (even if it was just chicken noodle soup), drank hot ginger tea once I stopped the anti nausea meds (or ginger ale) and on the day I felt most queasy I wore Sea Bands to fighting nauseousness. Kept everything down and queasy feeling was never too strong. (This was for AC chemo.... no real nauseousness with Taxol).

    You will find what works for you. Keep a journal as to what you ate and how you feel.

    Oh-- and make sure you really push water the day before, day of, and next day of infusions

    You can get thru chemo

  • mkn86
    mkn86 Member Posts: 129
    edited November 2017

    rj, yes please ask your MO about emend :) helps so much. usually my downtime for my 21-day cycle starts day 3 and ends day 5. things start to pick up after that.

    dodgersgirl is right. keep track of food intake especially on days when you don't have appetite. keep munching on small items throughout the day like soup or broth or mac and cheese or crackers or unsweetened dried fruit. sometimes i find warm roasted unsalted cashews (just a few minutes in the oven) to be such a treat. :) or almonds and pistachios. keeps you satiated with just a handful. variation infood texture also helps once everything tastes metallic

  • PauletteK
    PauletteK Member Posts: 1,279
    edited November 2017

    I keep a journal so I know which day is good day or bad, also I know my appetite, bowel movement, my waking log, how I feel and sleep. So you can go back and check. Believe me we have chemo brain so we might not remember all the details.

    How are you doing mkn and rlj? Rlj - do not overthinking sometime you just need to jump in and do it. If you have problem talk to your MO they are very helpful.