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Chemo starting December 2018

Hi,

The threads for folks starting chemo each month have been enormously helpful to me and I'm sure to others. Let's start one for December 2018.

I will have my first dose of Taxotere/Cytoxan (Docetaxel/Cyclophosphamide) tomorrow morning here in San Diego. Four rounds of 21 day cycles = 12 weeks.

Not going to lie, I'm more than a little afraid. But it's time to put my game face on and kick some butt. Spent the last few days getting ready - getting ready for side effects, getting ready for meal planning, getting ready for Christmas, saying goodbye to work for awhile.

This will be a December to remember. So, let's do this ladies and I hope we can help each other through this experience.

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Comments

  • thenerdylinda
    thenerdylinda Member Posts: 3

    Hey Lillian! Been lurking/waiting for the Dec. one, so thanks for starting the thread. Good luck; I'm hoping it goes fast and smooth for you!

    I start AC on Tuesday, port installation tomorrow, and am also nervous about both but have been compartmentalizing it into "just what we have to do" as well. Are you thinking like me in that every last meal could be the last time things taste 'normal?' (and others starting this month, please chime in!)

    -Linda

  • cherd
    cherd Member Posts: 4

    So glad this group is started! Be great to have the ability to trade our "war" stories and get advice. Start TCH + perjeta a week from today 12-10. 6 cycles/3 weeks in Arizona. Port tomorrow. Meet with my onc (who I really like) today to confirm plan. Feel a tad overwhelm with what will happen in this first cycle, not in denial just thinking about all that could happen to my body this month. I will also have dexametharone and the OnPRo neulasta injection. Costco trip this week to get all stuff I need to fight this crap.

    Linda I am like you in that I am planning to eat all my beloved foods this week. Bring on carnitas and spaghetti/meatballs. We had plan to leave the day after chemo to head to Colorado for Christmas but as I will soon learn that my plan isn't "the" plan and it looks like we have to hang around for a week after chemo for follow up appt as to how my body is tolerating the 4 drugs . . . this chemo is getting in the way of Christmas plans, darn . . .

    LIllian thanks for starting the group, I am nervous too!

    Cheryl

  • lilliangish
    lilliangish Member Posts: 54

    TheNerdyLinda (love that name!) ~ I hope your port insertion went well today. And yes, I had tacos for dinner last night and said my sweet goodbyes. I'll miss my favorites. Boo! But good luck tomorrow. I'm sure you'll do great.

    Cheryl ~ sorry about your trip. That must have a been a bummer to be surprised like that. It's kind of different having this happen over the holidays. My next chemo treatment is on Christmas Eve. :(

    I can tell you so far, this is going well. Yesterday, I took my decadron and didn't feel anything but a lot of energy to decorate the house for Christmas. On Saturday, I went to CVS and bought every remedy know to mankind...just to be sure. It felt good to be prepared. Today I found out I needed Claritan because of the Nuelesta shot that was put on my stomach today....that will inject 27 hours later.

    The chemo treatment was no big deal. Calm and no pain. I had T & C, and it took about 3 hours. I'm home tonight and feel just fine. I hear the next couple days may change that rosy outlook, but until I feel it, it won't happen!

    Nice to meet you both ~ we can do this!!!

  • thenerdylinda
    thenerdylinda Member Posts: 3

    Lillian, thanks for the encouragement, and glad you ate your favorites too. I hear taste doesn't go right away if it does, but stuff can taste different right after starting too. I'm so glad it went ok for you! Here's to hoping for minimal SE's.

    Port surgery went fine, though we didn't leave the hospital until about 8pm, and chemo is at 8:30am (possibly why I keep waking up). Awesome spouse is babying me, hoping everyone has a sheepdog(or what's best for their style; he's worried and knows this isn't something we can much control) helping out during this whole ordeal.

    Cheryl, hello too, yeah timing seems to be rough right now around the holidays, parties, family gatherings. I hope your port goes well too. I was nervous about sedation since my mother's heart had issues when she was under general years ago, but it went fine (and of course I did mention this to the anesthetist). Care has improved so much over the 30 years since then though, shouldn't have even worried. Sounds good to have a little time between port and chemo. Maybe they can move your second dose up just a day so you can keep travel plans? My onc mentioned this possibility.

    I guess I need to update my sig details too, I'm getting chemo neoadjuvantly, no surgery yet till it shrinks and they can hopefully take fewer lymph nodes at that time, April/Mayish, I think, since it's in two lymph nodes but nowhere else on PET (yay for the good news we can get sometimes).

    Good luck to everyone. We can do this and be on the other side of treatment someday soon. <3

    -Linda

  • santabarbarian
    santabarbarian Member Posts: 2,311

    I recently completed chemo, but am visiting here to share with you that a brief fast, or a slightly longer semi-fast, can be an enormous help to reducing side effects of chemo and potentially boosting your response.

    Take a look at the work of Dr Valter Longo at USC. I did 5 days of "fasting mimicking" and had a very good response to chemo w few SEs. Did not take any anti-nausea drugs for the last 3 chemos, as I simply didn't need them. Fasting has the benefit of weakening cancer cells while fortifying healthy cells, on top of the benefits to SEs. You can do a search on this forum under my name and read other more detailed posts about it.

    Mostly you will hear "eat whatever you want, have a milkshake if you want." Fasting is rarely mentioned but there is more and more clinical data, and several of us August chemo people had very good results doing it.

    -santabarbarian

  • anx789
    anx789 Member Posts: 241

    Lillian, thank you for starting this group, for a while I thought I'm the only one doing chemo in December 2018.SmileMy chemo starts tomorrow, 12/5, I'm also doing TC but I will have 6 rounds every 3 weeks. I am also taking Decadron 8mg twice a day for 3 days. I started today and Oh boy!! I have lots of energy, i hope I will be able to sleep tonight. I'm glad your first day went fine. I am nervous too for tomorrow, I'm thinking of bringing my anxiety pill just in case I need it.

    Linda, I hope everything went fine yesterday.

    Cheryl, me too have plans for, we were planning spend New Year's Eve in Las Vegas... not anymore.

    I hoping everybody will have a minimal SE.

  • lilliangish
    lilliangish Member Posts: 54

    TheNerdyLinda ~ thinking of you today and sending support for your first chemo treatment. I hope it was calm and uneventful like mine. Glad port surgery went well. Aren't helpful hubbies great?!

    Santabarbian ~ thanks for the tip on fasting. I will check that out.

    Welcome Anxiouslady! You aren't alone. Ever. I'll be thinking of you tomorrow and sending support cybernetically (I don't know if that's a word, but I'm using it anyway)! The treatment seemed easy to me on the day of the infusion. And yeah, isn't that Decadron something else? I think I took an Ativan and fell asleep around 11:30 that night. I took some more Decadron today too and feel a little buzzed. Skipped a nap today so I'll sleep tonight.

    They put a Nuelasta box on my stomach the day of treatment. It didn't hurt. The little box dripped some white cell boost in me 27 hours later. That didn't hurt either as it quietly drips in after giving you a five minute warning. Thought I'd give you that tip in case they do the same for you.

    I'm at the end of the second day, and feel a little light headed, but otherwise just fine. I've been careful to follow all the prescription medication instructions - like taking Advil and Claritan two hours before the Neulasta drip this afternoon. My treatment may differ from you ladies, but I'm trying hard to stay ahead of side effects. In my head, I'm not expecting a side effect...I'm expecting to be fine until something comes up. Got out and walked today and it felt really good to get some fresh air.

    As someone told me recently, you are stronger than you think. And now we are going to prove it. I bet you'll get through these days, handling anything that comes at you. We are all capable of doing hard things. :)

  • Mariett
    Mariett Member Posts: 9

    Hi all

    I will more than likely be joining this group so just had a quick question. I had a bmx on November 23rd. I see my oncologist next week to talk about treatment. I have a dentist appointment today and I'm sure I need a tooth pulled. Is it ok to have dental work before chemo starts? I'll ask my mo when I call her later but just wanted to see if anyone had experience with this.

  • BC2chick71
    BC2chick71 Member Posts: 7

    hey there,

    Been waiting for this group. I'm putting my game face on as well. I'm scared but we gotta do what we gotta do to kick cancers butt!!

    I'm here after a DMX with immediate diep flap in 2016.

    Recurrence Oct 1st, 2018, lumpectomy Oct 24th. Redid my oncotype dx & it spiked upwards from 14 to 27. Original tumor was 7cm. My chemo treatment will be TC every 3 weeks for 12 weeks, then rads everyday for 6 weeks.

  • nanette7fl
    nanette7fl Member Posts: 412

    Hello Everyone

    Hopefully going to start my chemo today (waiting for results of my echocardiogram done yesterday at last minute). I'll be doing 12 treatments of Taxol and Herceptin.

    Nice to meet all of you


  • Esperanza12
    Esperanza12 Member Posts: 1

    Hi, Everyone,


    I started chemo a week ago. I am doing TCHP. My side effects included nausea the first day, some constipation the second day, then bone pain the following two days because of the Neulasta injection. The last few days, I have developed digestive problems and my mouth is sore. I get a little tired of clinicians minimizing the side effects, though . . . I am 44 and active, and am worried about getting through 6 cycles that can make side effects worse at each cycle period. My husband told me that this is a marathon. It is helpful to hear from all of you on this topic -- nice to meet you all. Thanks for the tips.

  • anx789
    anx789 Member Posts: 241

    Mariette, I had two teeth pulled before chemo, is it actually advisable to take care of all your dental problems before going to chemo, make sure you'll have enough time to heal from dental works before starting chemo.

  • Newfromny
    Newfromny Member Posts: 108

    esperanza12 I have my 3rd infusion of TCHP on Friday and the SEs have been tough for about 10 days each time, mostly fatigue, nausea, diarrhea and lack of appetite. We’ll get through this but it is a relentless marathon

  • thenerdylinda
    thenerdylinda Member Posts: 3

    Hey look at the December club growing, glad to see you ladies, not glad about cancer.

    Santabarbarian: Thanks for the tips. I had read your posts before and will try it for round 2. Sounds really helpful. First infusion for me was ~12hrs after we left hospital for port surgery, so didn't want to fast after that, esp. with medication for it. The nurse hadn't heard about fasting, or ice chips to protect mouth lining, so I'm glad you guys can guide us better from the patient side of things. Thanks. :)

    Anxiouslady, we're all in this marathon together, and there's a definite end to it where things will be better again. It's not going to be easy, but seems like every hard life experience makes us appreciate the good times better.

    Mariett, I was advised to get all dental work done before chemo so there's no increased chance for bacterial infections in the mouth. Bleeding gums and lining issues are common with these chemo drugs, I hear. Good luck.

    BC2chick71, sorry to hear about recurrence, that sucks. Did your docs watch it closely since the first case and catch this one early?

    Esperanza, I feel you. The doctors and nurses do seem to minimize the impending side effects, unsure if that's a placebo-effect attempt. I'm using an app to track my symptoms, as I think my memory won't be great about the first few days if they ask 2 weeks later. They didn't think I'd need nausea pills for 3 days but I started burping and feeling sick on the second half of the long drive home, at which point I tried transferring the prescription from my mail-order default pharmacy to a local CVS. They stated 1hr till ready but took 2.5. Lucky for them I didn't use the ziplock gallon bag I brought with me to pick them up.

    Nanette7fl, good luck to you today too. Don't know yet about Taxol, but AC was fine going in but feeling like poison afterwards in the day and night. Tired today. I hope you get good rest. 💜

    Tip: Apparently if you try to fill a narcotic prescription for port surgery or similar (Norco, 5mg), CVS won't fill it prior to contacting the Dr. if you're filling it >40miles from the doctor. Since we're about 80 miles away from the cancer center, we learned the hard way after 6pm.

    Good morning (timezones permitting) to everyone, and onward towards treatments and recovery... 💗

  • Mariett
    Mariett Member Posts: 9

    Thank you Anxiouslady. My mo told me the same thing, get all dental work done before chemo starts. I got the wisdom tooth pulled and they gave me an antibiotic to take for 7 days so I will probably call the mo again just to make sure I can take this.

  • mnsotamom74
    mnsotamom74 Member Posts: 28

    Glad you created this thread! I start chemo December 14. December 7 I meet with the oncology nurse and was told I'll be given information overload and to bring someone with me. I don't know what drugs I'm being given yet but assume I'll find out then. I've ordered a wig and a couple hats to be prepared. I'm not scared as much as just wondering if I'll be really sick. I do daycare for my best friends three kids, I'm concerned about being able to watch them during this time, thankfully the daycare my daughter works at can be a backup at a moments notice. I'm so glad for these boards, it's truly made going through this much better.

  • anx789
    anx789 Member Posts: 241

    I had my first TC done today. It took around 2 hours for the infusion. So far so good. I was given the Decadron 8 mg to take twice a day for 3 days starting the day before chemo, the PA said i can skip it tonight. Any body taking Decadron?

  • lilliangish
    lilliangish Member Posts: 54

    I did the decadron..,.gave me lots of energy. Took my last pill this morning. Didn’t have any issues.

    Glad you day went well Anxiouslady!

  • anx789
    anx789 Member Posts: 241

    Lillian, do you take the Decadron only in the morning? I cannot sleep with Decadron, I did not sleep last night, and today, I took a nap for a few hours only and now I'm wide awake.

    Marriet, you're welcome. I took an antibiotic too for 7 days and use Peridex when they pulled my teeth.

    It is 6 hours after my infusion, so far no side effect yet except I am wide awake. I am not getting Nuelasta but instead I am getting Neuprogen, I have to go my doctor's office for the next 3 days to get the shots. I was not given any instructions on what meds to take before the shots.

  • wanderweg
    wanderweg Member Posts: 487

    Good morning, I just wanted to stop in an offer encouragement. First, I’m sorry all of you are having to join this sucky club. But, I finished four rounds of TC (with neulasta) on November 2nd and wanted to say that while it is a tough road, it is doable. Be gentle with yourselves and accept help - you are walking a path most people don’t have to. I wanted you to know that I’m cheering you all on and hope the round where you get to ring th efinishing bell comes quickly!

  • sweetolyve
    sweetolyve Member Posts: 9

    Hello ladies, I found this thread which was suggested by another user. I start my first chemo therapy today. Just trying to figure out what is the best plan of action before going there this afternoon. I do plan on bringing a large cup of ice water (it's something I do anyway), something to read (hubby will be with me), and really I'm not sure what else. Oh a small soft neck pillow because I've seen those chairs and I'm pretty sure the pillow will help comfort-wise. My A,C,+T will be administered via a power port that was installed on Tuesday. I did have the training session with the oncology nurse, but I don't remember most of that, although she did give me a ton of stuff to read. I just don't remember what she may have said about the prescribed anti-nausea meds, except that they now have an on-site pharmacy so I don't have to drive all over picking up meds. We shall see when we get there.

    Thanks so much for sharing your stories. I'll see y'all on the other side.

    Debbie...(0;

    ><>

  • anx789
    anx789 Member Posts: 241

    Sweetolyve, welcome to December 2018 group. Don't worry, you'll be fine this afternoon. You probably want to bring a small blanket just incase you get cold, and if you're planning on icing your hand and feet, bring a towel with you, too.

    I had my first infusion yesterday, I went faster than expected as I was very chatty and hyper due the effect of the Dexamethasone (steroid pill) that my Onco prescribe me to take day before the infusion. Some people get the Dexamethasone via IV. The anticipation is sometimes worst than the actual infusion, I even brought my anti-anxiety pill just incase I panic before or during the infusion, but thanks GOD I didn't need it.

    Today, day two, so far no SE, no nausea or anything yet (I hope I am not speaking too soon). After infusion last night, I ate a very light dinner, it probably helped in preventing nausea and stomach upset. Today I am planning to eat oatmeal hoping that it will prevent constipation.

    Good luck to you, you'll be fine.

  • MarnieMay
    MarnieMay Member Posts: 15

    Hello., I started my chemo treatments today. I was diagnosed Aug 30th, caught early, triple positive. I had a diep flap double mastectomy on Oct. 15th. I will be taking Taxol once a week for 12 weeks and Herceptin every three weeks for a year. I had my port put in last Friday. A nurse called me last night to answer any questions I had and I had a lot. I asked what people complained biggest about and she said back pain, itching and hot flashes. I was curious all night and morning about the back pain answer. I ended up asking another nurse and she didn't know. My husband and I thought it must be uncomfortable chairs. lol Well I find out what that's all about!

    My port works but was tender when I tried to move my right arm. The nurse did a blood draw and then taped down the access so it could be used for infusions. I was moved to a different room. they started with Benadryl, A steriod (decadron?) and pepsid. All those are to counter any reactions to the chemo. we waited 30 minutes and then taxol was hooked up. She walked away and I had a few sharp twinges in the lower back. Like a zinged nerve. I hit the call button thinking I was being needy and then my whole body locked up. every muscle, I became a stiff straight board and the zingers were from my thighs up to my shoulders (all back side) The pain came in quick pulses. I had four nurses there in seconds, carrying a kit and was given another dose of benadryl and pepsid and in about one minute I was all better. I think it was under 5 minutes total, but such a shock. The said wait 30 minutes and we try again. They said its very uncommon to happen twice. And it didn't The rest went smoothly. Taxol went 1 hour, herceptin was a loading dose and took 90 minutes. I'm at home and have taken advil for a achy back, and i'm leaning on a heating pad, sore muscles from tensing maybe, and the benadryl made me super tired, but its slowly going away. hope steroids do not keep me up all night.

  • insideout2
    insideout2 Member Posts: 108

    Hello Everyone,

    I started Chemo in January 2018 and finished May 2018. I was diagnosed in December 2018. I had my first PET scan post chemo, surgery, and radiation. It came back clear. I will continue to have scans and understand this journey is a long one.

    I wanted to reach out to you as others did for my group. Stay strong, ask questions, and allow others to help you. Reading threads of prior groups will be helpful. Think of any topic, you will find it hear.

    I listed a few chemo tips. I had 6 four day cycles every with a two week break in between. These may not work for you. Everyone is different, your chemo nurses will have tips for you.

    Take medicine before side effects occur. Chasing nausea etc is not fun.

    Protein shakes and peanut butter are good snacks.

    Sucking lemon drops when having your port flushed removed the metallic taste.

    Pack a chemo bag with snacks, cream, heating pad, chapstick, etc.

    Drink plenty of fluids.

    Avoid spicy/hard foods during chemo days/week. I had mouth sores during my second round because I was being rebellious.

    Ice on hands and feet helped me during treatment.

    I found it hard to believe, but exercise was my friend. (Walking)

    Hot flashes are real. Keep cool drinks and a fan near.

    This journey is not easy, but we will get through it. Everyone told me to fight. As if they needed to. No one explained what fighting looks like. Please know each day you wake up and place your foot on the floor you are fighting.

    Every appointment you get dressed for you are fighting.

    Your commitment to school, church, family, and health changes are part of you fighting.

    Each pill you swallow, every bite of food you eat, even the hours you sleep you are fighting.

    Take care and love yourself.

    Insideout2



  • sweetolyve
    sweetolyve Member Posts: 9

    Hello,

    Thanks for replying. I can honestly say that in spite of what it was that brought me to this place, my first ever treatment went off without (nearly) a hitch. I had two wonderful nurses who explained everything to me and made sure I stayed very comfortable. They started with antiemitics, followed by the "red devil" and by that time I was too drowsy to keep up with it all...lol. the one hitch was that the tube for the main drug hadn't been primed, so they had to take it back to the lab and get it primed.

    All in all it wasn't too bad. I came home and drank lots of water, took my phenarghan, laid in bed and watched TV. During the night that wore off and I had to take more. What's crazy about that was I didn't feel nauseated at all. I was told to keep taking at least 3 days, or more if needed.

    I will be going for a walk later on this morning to keep my strength up.

    I'm so thankful that I have access to great care and my wonderful husband who has not left my side.

    I pray that all of you have an easier time than expected during all of your treatment.

    Sincerely,

    Debbie

  • mcbaker
    mcbaker Member Posts: 1,833

    My port will be installed on the eighteenth, with first infusion the nineteenth. Same protocol as Marnie's. I don't want to have to do this. I am 68 years old and not yet a grandmother.

  • BC2chick71
    BC2chick71 Member Posts: 7

    Replying to insideout2

    Love this! Thanks so much for this!

    We are FIGHTING!

  • nanette7fl
    nanette7fl Member Posts: 412

    I'm on day 2 1/2 after infusion... I say "1/2" because it's the middle of the night lol. I too got a pre-cocktail of Benadryl, Dexmethasone and pepsid for anticipated nausea etc. I started at 1pm and was finished with both the Taxol (got that one 1st) and then Herceptin. The nursed did push the Herceptin some in the last 30 minutes because they close up shop at 5pm but it was fine. I felt really tired that night when we got home but I think it was stress let down and because I was SOOOO very bored being 'tied down' to a recliner for 5 hrs was not my idea of fun. I did have to get up and do some stretches because I have 3 crushed discs and 1 slipped disc in my S1-L3 (lumbar) and my sciatica was being naughty and painful. Yesterday was a good day nausea was at a 3 today the runs tried to start but stopped without meds....the nausea is playing games with me today fluctuating between a 5-6 and I did take some of the Zofran and it helped some.

    Looking back I'm really grateful for the Benadryl and Dexmethasone because I had a horrid case of hives from the Betadine washing from my port insertion. Thanks to the added meds my rash is now G-O-N-E and I just realized this earlier tonight when I realized I hadn't itched at all today ThumbsUp

    I do have a question for any of you (or the Lurkers).... has anyone started having leg pains?? I know my pains from my back and how it affects my legs but this is different. Trying to go to sleep my knees and hips and ankles are really achy. Also my shoulders hurt/ache. Could this be SE from the Taxol or the Herceptin? Singing

    Anyhow I'm glad those of us who have started are doing well. Prayers to all of you and of course to those who'll be starting up treatment soon.

  • ingerp
    ingerp Member Posts: 1,515

    I also wanted to pop in and say I am sorry you all are having to go through this over the holidays but you *will* get through it and come out the other side.

    I did Taxol/Herceptin without a port and it went fine. I did not ice hands/feet but always said no thank you to blankets (and wore sandals, but it was warmer then!). I figured if the point of icing is to keep the extremities cool, I could do that by keeping my body a little chilly through treatment. I ended up with some mild neuropathy on the bottoms of my feet but nothing in my hands.

    I also *really* pushed the protein. Had red meat 5-6 times a week plus a protein shake every day. My blood levels throughout were *great*. (One day my MO said I was the only patient she’d seen who was actually making blood through tx.)

    Other than that, be gentle to yourselves. I really craved ice cream through tx so ate it every day. And it seems like a really long time but this too shall pass. I had my first haircut yesterday!! 18 weeks PFC but it was great to be in a salon.

    Hang in there, ladies. You’ve got this.

  • MarnieMay
    MarnieMay Member Posts: 15

    MCBaker- I feel for you and wish you didn't have to do this either. :( I am not much of a blogger and usually only lurk on boards like this, but seeing other woman already post with how there appointments went and I can compare my experience to, is already helping. I had my surgery first like you did and I was more scared of that and I made it through. Looks like ours were both caught early. Please post after your port and infusion and let me know how your doing.

    I had mine on the 6th and on the 7th I felt like I was ready to slay a dragon. I have never had steroids and they gave me extra because of my prior mentioned reaction and i was talking so fast and couldn't sit still. My back pain plaguing me for months, let me sleep with no complaints for the last two nights now. I'm am sure I am headed for a crash probably today. Woke up with a bit of a sore neck and knees. Worst thing yesterday was a small tightness in my chest, maybe acid reflux, worse when I bent down and I was super away of my heart beat in my chest.

    nanette7fl My doctor told me bone and joint pain are common with one of the treatments Taxol/herceptin I can't remember which.