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Starting chemo November 2020

marie914
marie914 Member Posts: 152

Hello,

I hope I can find others who will be starting chemo in November. I am having 4 cycles of taxotere and cytoxan after surgery since my mammaprint came out on the lower side of high risk. The plan is to cold cap. I am seeing my oncologist 10/22 to finalize details to start the first week of November.

Anyone that is a veteran - please let us know any helpful hints. I did read the helpful hints section and it was great!

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Comments

  • MsMurphy
    MsMurphy Member Posts: 32
    edited October 2020

    I'll be there with you Marie. I meet with my oncologist on the 27th to finalize treatment and will be starting in November. Cropped my hair short recently in preperation of the hair loss. Feeling a bit boyish but haven't received so many compliments on a new style in ages so maybe going bald won't be to rough. Been putting together a chemo bag too based on everyone's advice on here.

  • marie914
    marie914 Member Posts: 152
    edited October 2020

    Msmurphy. Are you getting fills during chemo? I’m getting a few fills during chemo if I feel good enough.
    Do you know what kind of chemo you are getting?

  • MsMurphy
    MsMurphy Member Posts: 32
    edited October 2020

    My PS said fills are fine to do. I think I will only need 3, maybe 4 more to be at the size I want and have been getting them weekly so there shouldn't be much overlap. When I met with the oncologist just after my diagnosis, he talked of a couple of treatment options but I was so overwhelmed at that point and still processing what was happening, I've forgotten what they were. I should know next week though. I think he had said something about weekly treatments.

  • marie914
    marie914 Member Posts: 152
    edited October 2020

    Hello - I saw my oncologist this morning. I start chemo Wednesday, November 4. I wanted the bad days to be over the weekend if possible since I still work. I am getting taxotere and cytoxan - 4 cycles.

    I can go 20 minutes away and get chemo but no cold caps. At their office a little farther 35 minutes, I can get chemo and cold capping using digni caps.

    I think I am going to go the extra 15 minutes - it is only 4 times. I will have to go earlier and stay longer because of cold capping.

    The nurses are supposed to call me to schedule education session either Monday November 2 or Tuesday November 3. My oncologist said she will schedule it for the place they do cold capping so they can tell me more about it. If I decide not to, they can switch it back to the closer place.

    She said I could drive to chemo. I always thought you needed a driver.

    She also said that I didn't need to ice my hands and feet since this combo 4 cycles of TC doesn't cause neuropathy???? Anybody have a different experience?

    I had my 3rd fill Tuesday. The tightness is almost all gone I am supposed to get my next fill two days after chemo November 6 since next week I will be on vacation before chemo starts. My husband and I both turned 60 the last few weeks and we had our 15 wedding anniversary so we had wanted to celebrate.

    Hope we get more November chemo patients in here or the pros from the previous months stop by to encourage us.


  • MsMurphy
    MsMurphy Member Posts: 32
    edited October 2020

    It looks like my chemo is going to be delayed a bit. I was supposed to meet with the oncologist next Tuesday but had to cancel that appointment since I found out I will be having a 2nd surgery. I'll have to wait for the new pathology report to reschedule. I'm ready to get started so I can put all this behind me.

    Enjoy your vacation and celebrations Marie! I can't wait until I will be able to get away.

  • ajbclan
    ajbclan Member Posts: 396
    edited October 2020

    Hi Ladies! I feel out of the loop a bit with the cold capping....looks like it's more prevalent that when I went through chemo 4 YEARS AGO! Yes! One day each of you will be here amazed that the time has passed. I remember reading ladies on this website and how far out they were and thinking will I ever get there, and here I am. You will be too. I probably received more hints through my chemo board (Aug 2016) than necessarily with the Dr's and it's all so overwhelming...so just try and breathe and see what your body does. One thing that helped with hydration for me that my chemo friend suggested, was to partially freeze your gatorade (or in my case I drank vitamin water). Get it slushy and drink with a straw...much easier to get it down. My tip of the day :) Hang tight....use your buddies here.....one day at a time. Lots of hugs to each of you on this journey.

  • MsMurphy
    MsMurphy Member Posts: 32
    edited October 2020

    ajbclan, thank you for that hydration tip. I am so awful about remembering to drink and have been trying to get better about it. I like the slushy tip. My husband had me buy some pediapops too which were awesome in the first couple of weeks after surgery when I had no appetite. And definitely remembering to breath is the best advice of all.

  • WordGirl1968
    WordGirl1968 Member Posts: 29
    edited October 2020

    MSMURPHY: I’m starting chemo plus the Herceptin/perjeta combo sometime in the next 3 weeks or so. I noticed you are HER2+ also so perhaps we will have similar therapies. I will meet with the oncologist today to learn more specifics but she has said that I’m looking at about a year of chemo. It’s daunting but the prognosis is so much better than before Herceptin came onto the scene. I’ve been reading a lot of the research and trying to understand it all.

    I’m having the first of 2 iron infusions today; have been extremely anemic and lost a lot of blood during surgery so that has caused some setbacks in my recovery. I’ve also had worse pain in the past 10 days than in the first week post-op due to swelling and subsequent pressure on the incision. I’m not having reconstruction (just “going flat”) and I have a single horizontal incision, armpit to armpit. It’s so swollen on one side at the moment that it looks like a small boob. However, I had a reiki session last night (my first!) and woke up feeling much better.

    Also, I have to schedule an ECG before starting Herceptin since there are potential heart complications specific to that drug. Nervous.

    I’ve heard from many people about the critical importance of staying hydrated during chemo and I love the slushy idea.

    Be well, everyone.

  • MsMurphy
    MsMurphy Member Posts: 32
    edited October 2020

    Hi wordgirl1968,

    I was supposed to meet with my oncologist yesterday to start treatment but things have been slightly delayed. I have to have a second surgery next week since they missed the tumor the first surgery. My PS decided to do my exchange at the same time so I'll need a little extra healing time. Hoping to still meet with the oncologist and get back on track to start chemo soon. Mostly just because the sooner I start, the sooner I finish. Tentatively I'm looking at 4 weeks chemo and then starting the Herceptin (not sure about any combos yet), and like you, probably for a year. It depends on my final pathology report of course.

    I'm wondering if I'll need an ECG as well since heart disease is in my family. Other than this pesky little tumor, I'm healthy but still nervous since my dad is in the hospital about to get heart surgery and other relatives on both sides have had heart problems.

    We will have to stay in touch and support each other since we seem on similar paths. I've never been much for social media or forums but I'm discovering that while I have lots of support, I feel like I have to always put on a brave, positive survivor face. Sometimes though we need someone who understands what we are going firsthand.

    I hope your pain gets better soon and the infusions get your iron levels up. I'm cheering for you! 💪❤

  • LMS458412
    LMS458412 Member Posts: 288
    edited October 2020

    Hi everyone! I'm from the September 2019 board and I'm here to tell you that you will get through this! Some days are difficult, but just get lots of rest and take care of yourself.

    If you have questions, just ask. You can also look at our board, we were quite chatty!

    Marie914 - I did 4 cycles of TC as well. I iced both my hands and feet during every infusion. I started about 15 mins before the taxotere and stopped 15 minutes after the cytoxan ended. That's all I could stand. I ordered special socks and ice packs from Amazon. For my hands, I just brought bags of ice in gallon plastic bags and put my hands in empty plastic bags that I submerged in the ice bags. I have minimal neuropathy. I feel a little more clumsy in my fingers, but no noticeable numbness or other issues. I highly recommend icing so you can feel like you did everything possible to prevent neuropathy. It is uncomfortable, so I understand it's not for everyone.

    I had someone come with me each time, but that's probably not possible during this pandemic. It's pretty boring, just bring a book or your cell phone so you have something to do. You can drive yourself. I never felt bad the day of the infusion or the day after. Days 3 to 5 were the worst for me. They give you steroids with your infusion, so that keeps you going for awhile!

    I'm a cold capping failure. I did it for 2 of my cycles, but had to stop because of a rash on my scalp. I did lose all my hair, but it grew back. I would cold cap again if I had to do it over. Don't regret trying. I took an electric blanket with me and that was nice with my head, hands and feet all on ice.

    I had issues with constipation during treatment. Anyone on TC should have something on hand just in case. My doctor suggested Miralax. It wasn't enough for me, I had to use all kinds of stuff. Stay hydrated, it helps.

    Lots of food tastes weird, bad, or bland. Eat whatever you can stand. I never got nauseous. Some people do, but the doctor can give you something for that. I just got these ginger lemon drops from Target that are supposed to settle your stomach and had a couple a day just in case.

    Bottom line, chemo is temporary. It'll be behind you someday. You're going to get through!!!!


  • marie914
    marie914 Member Posts: 152
    edited October 2020

    thanks LMD in Florida. I was just reading the September 2019 thread. It is good information



  • magpie4121
    magpie4121 Member Posts: 5
    edited October 2020

    Hey, y’all!


    I’m also doing 4 rounds of Taxotere and Cytoxan starting on the 6th. A little nervous, but generally feeling ok about it all. I always feel good about everything for a day or two after I talk to one of my doctors or nurses and then get nervous when it’s just me going over it all in my head over and over. But generally staying positive!

    My hair is really fine, so I fear that trying to save it would be fruitless and even if I only lost half my hair, I’d look awfully pathetic. So I’m shaving it all off sometime next week to avoid the stress of losing it over time. My husband used the cancer card to get us into the salon after hours to minimize COVID risks. Always nice to find positives through all the cancer mess


    I also just had my first shot of goserelin, an ovarian suppressor. The shot itself was not the most fun, but it was pretty quick. Getting it once a month for the next five years. Not looking forward to the hot flashes and other menopause symptoms or to going through it all again for regular menopause in 20 years. But, hey, it’s better than cancer!


    I’ve been knitting soft hats in anticipation of being bald this winter, which has actually been really nice. Hope y’all are finding nice things in and amongst all the appointments, side effects, and general crappiness of cancer. We’ll get through it together!

  • Etincelle827
    Etincelle827 Member Posts: 6
    edited November 2020

    Hi all !! Here with you starting chemo sometime next week. Also 4x TC. Also trying cold capping, just got mine in the mail the other day. Looking forward to comparing experiences with y'all. Cheers!

    Jenna

  • marie914
    marie914 Member Posts: 152
    edited November 2020

    Great Jenna and Magpie to have a few to go through this together. I start Wednesday the 4th


    i got my cold capping stuff and trying to figure out how much my clinic does and how much I have to do. It looks complicated.

  • HopefulHeart82
    HopefulHeart82 Member Posts: 2
    edited November 2020

    I'm also starting Chemo in November, but I seem to be the odd one out. I'll be doing 12 cycles of weekly T, possibly followed by AC before my surgery. My tumor is aggressive so I understand we're trying to make sure chemo is effective on any cells that may have slipped away. I'm a bit nervous about it. Also starting zoladex tomorrow to hopefully preserve my ovarian function

  • marie914
    marie914 Member Posts: 152
    edited November 2020

    Tomorrow is the day I start! I just want to get the first one down so I know what to expect. I didn't get to go to the "training" since I was on vacation last week. So the training is tomorrow afternoon at 3 so if I am done I have to hang around and wait for it. I have to get there at 8:45. I hope the icing goes well for my feet and hands. I have to get my bag ready tonight and ice packs frozen. Pack some snacks and drinks; my phone charger, a blanket and some warm clothes since I am cold capping. I am bringing my work laptop - probably not use it but just in case. My phone is loaded up with books.

  • marie914
    marie914 Member Posts: 152
    edited November 2020

    Hello. At my first chemo. I had my premeds. Taxotere for an hour and now on cytoxan for 90 minutes. No problems so far. The nurses are so nice here. They put the dignicap on me before my premeds and I have to wear it for two hours after cytoxan is finished. This week I have to stay for a training session for chemo. I missed last Wednesday's training since we were on vacation. Port is working good. I did put lidocaine on it an hour before and just felt a little pinch. I did ice my feet for the entire taxotere and for 20 minutes after. I held come bottles and used my icing mittens for most of it but kept taking them off to do things. The bathroom is really close to my chair and they only have one dignicap unit so I'm in a section all to myself. Lots better than I thought it was going to be. The dignicap only was really cold for 10 minutes. So now to manage the side effects

    Hope everyone else is doing good

  • Elledwriter
    Elledwriter Member Posts: 18
    edited November 2020

    Hi Marie,

    I had my chemo today too. Glad to hear yourS went well. The dignicap was so easy. Barely felt cold, but I have thick hair and love the cold anyway. Must be the New England in me.

    No problems yet with the chemo. Having small meals to stave off any nausea. Have to go and get a shot tomorrow since my insurance wouldn’t pay for the other.

    One down, three to go!


  • marie914
    marie914 Member Posts: 152
    edited November 2020

    sounds good elledwriter! I did get the neulasta on my arm. It goes off tomorrow at 3:30. Hope it works. I took Claritin and will every day. They say it helps with bone pain from the neulasta. I am taking colace and sennakot since I had bad constipation with my two surgeries. I’m trying to get ahead of it.

  • juju-mar
    juju-mar Member Posts: 200
    edited November 2020

    hi ladies,

    My first chemo was 10/27. AC for 4 treatments (every 2 weeks) then Taxol weekly for 12 weeks. Today is day 9 and I am happy to say the only side effects so far is a slightly foggy head feeling day 3-8. No nausea, no vomiting, very mild diarrhea. It almost feels like a sinus infection wants to begin, but it hasn't. I take Zyrtec daily for allergies ( have for years). I also take Vit D and iron (for anemia). I was told to brush my teeth after eating anything. I do rinse with Bioteen. I feel just slightly tired, but nothing that interferes with daily living. No hair loss yet, but I hear that's more common around day 16. I feel so much better with treatment starting. I can actually go more than an hour and not think about cancer! Cheers to us all on this journey.

    Julie

  • magpie4121
    magpie4121 Member Posts: 5
    edited November 2020

    I’m so glad that it sounds like everyone is doing well so far! I start tomorrow and hoping for a good day

  • marie914
    marie914 Member Posts: 152
    edited November 2020

    Hope you had a good day Magpie! My chemo day was so much better than I thought it would be.

    I am still feeling pretty good - the steroids perhaps. I will probably hit a wall tonight or tomorrow. I did have some problems with constipation. I never have a problem usually unless I get anesthesia, opiods, or I guess steroids. I took colace, sennakot, miralax, magnesium, and prune juice warmed with butter. I finally went this morning but nothing since. I usually go 1-2 times a day so I am behind. Hopefully now that I am done with the steroids for a few weeks it will get better. I heard it can become diarrhea the next few days. One day at a time.

    I went and had another fill in my expander implant. I'm up to 450 ccs and hoping for 2 more to get to 650 ccs and then I wait for a few months until they can do the exchange - hopefully in February.

  • marie914
    marie914 Member Posts: 152
    edited November 2020

    Well I crashed last night - very tired and achy. Today has been very painful with bone aches - I think from the Neulasta. I took Claritin twice a day since Thursday once on Wednesday. I was hoping it would help. Any one else having bone aches? mostly my knees and pelvis area.

  • magpie4121
    magpie4121 Member Posts: 5
    edited November 2020

    Chemo itself was pretty easy, and I felt good for most of the day after. But last night I started to feel just generally weird and off. Been feeling both too hot and too cold, kinda tired. Took some compazine for some sort of generalized nausea.


    Marie, I also had some constipation trouble, which I was sort of expecting because I tend more in that direction. Took some Miralax and hoping it helps.


    No bone pain yet, but I only got the Neulasta shot yesterday. Decided not to do the Claritin this time, see how I felt, and decide if I needed it next time.


    Mostly just feeling a little bit off, which is definitely better than it could be. We’ll see how the next few days go

  • marie914
    marie914 Member Posts: 152
    edited November 2020

    Magpie hope you don't get the bone aches. It was terrible. The worst thing I have been through since getting my diagnosis (e.g, mastectomy, expander, port, etc.)

    I hope next time they can give me less neulasta or I take the Claritin ahead of time. I took it Wednesday night and the neulasta didn't inject until Thursday around 3:30 pm but Saturday I was in severe pain and today Sunday is better but still hurting.

    I feel off too. Nothing tastes good and so I am having a hard time getting my liquids in. I am managing the constipation but had to take quite a bit of sennakot, magnesium, Miralax, prune juice, etc. I threw everything at it and it is just okay. My stomach hurts.

  • aterry
    aterry Member Posts: 142
    edited November 2020

    Best wishes to all the members starting chemo in November 2020. I started ACT 4 years ago, today. (followed by lumpectomy and radiation.) I received excellent care at Dubin/Mt Sinai in Manhattan. I'm doing well 4 years out and I hope you all have similar positive results. Some of my side effects took a long time to lift but I experienced a steady stream of slight, very slight, improvements as I went along and that's what kept me patient.

  • renbird
    renbird Member Posts: 53
    edited November 2020

    Hi Marie94-

    I'm joining this discussion as I too will start chemo this month (Nov 19th). (4) total sessions, every 3 weeks of Taxotere and Cytoxan (TC).

    Thank you for starting this group so we can all look after each other! : )

    Just got off the phone this second with my oncologist at Dana Farber. I'm a bit overwhelmed (frankly a bit terrified!) Mostly concerned about Neulasta shot and subsequent bone pain. I plan to take Claritan and Advil/Tylenol as needed but yikes.

    How are you today?

    -Renbird in RI

  • marie914
    marie914 Member Posts: 152
    edited November 2020

    Welcome Renbird! The day of chemo and after I felt great. My chemo was Wednesday and Neulasta went off Thursday afternoon. By Friday afternoon into Monday I was in severe pain - mostly Saturday and Sunday. I took the Claritin and the Advil/Tylenol but nothing helped me. I am better today. Just the bad taste in my mouth, achy, and a mild headache but nothing I can't manage. The two weekend days were the worse.

    I called my nurse and they are going have the doctor discuss at my next appointment (11/24) which is the day before chemo (11/25) my side effects. I noticed my two infusions were almost double the usual dosage of Taxotere and Cytoxan. The Cytoxan took 90 minutes where it usually takes 45 minutes. So I either want those reduced and if my white blood counts are good this week and next week then lower dose of Neulasta too. It was bad enough that I want to give up on chemo.

    I wouldn't worry though most people seem to be able to handle it with Claritin. I am not sure why I could not.

  • renbird
    renbird Member Posts: 53
    edited November 2020

    Hi LMS458412!

    Thank you SO much for posting here as a veteran of chemo/TC. Your words are very helpful and encouraging. Please pop in from time to time... I'm going to try and find the Sept 2019 board now, unless you can supply the link.

    Thanks again!

    -Renbird in RI

  • renbird
    renbird Member Posts: 53
    edited November 2020

    Hey, Marie914!

    That was fast! Thanks for the quick reply, Marie, and for all your post treatment wisdom so far. Yikes! They sure did load you up for the first round... I wonder why? I hope they get things right for you, poor dear. That just sounded awful.

    Know you are in my heart.

    -Renbird in RI