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Starting chemo November 2020

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  • DanniB
    DanniB Member Posts: 49
    edited January 2021
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    Wish you a nice an easy one tomorrow Marie, will be thinking of you. x

  • JoW888
    JoW888 Member Posts: 22
    edited February 2021
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    Hi Ladies, it's been 6 days since my last infusion. I'm in the midst of my "down" days now. My legs have been achy and taste buds are off which makes cooking a challenge because I don't know whether I've added enough salt, pepper or seasoning to what I cook!

    Juli (Juju Martin) - I know you're looking forward to getting chemo done and over with, it'll come sooner than you know! Hang in there! No hair coming back yet but at least no more shedding. Each time I shower I look closely at the drain and it's always a relief when there's no hair laying there!

    Danni - Awesome to hear that your partner's surgery went well and all is good! How are you doing? I met with my radiation doctor on Thursday and I'll be having 20 rounds including 4 boost rounds. My mapping will take place mid February and then it'll be a week or two before radiation actually starts. That will give me some time to recover from chemo.

    Sharon - We made it through week 1! Hope we get our energy levels back in the weeks to come!

    Marie - All the best for tomorrow! Have you started venturing out or resuming regular activities like in-store grocery shopping, etc.? I cannot wait to do that! I'm thankful for curbside grocery pickup but nothing like shopping in-store!

  • sharon0706
    sharon0706 Member Posts: 80
    edited February 2021
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    Hi all. Jo, I am right there with you trying to make my way through this final post-chemo week.

    Generally by day 6 after treatment, I am on my way back up to mildly functional. But not this week. I had been warned about the cumulative effects of this last treatment but I am still upset that I don't feel better yet. Trying to be patient and kind to myself.

    My legs feel like I just went on a daylong hike, my bony achiness blooms over my lower back every time I stand up, my GI system is completely off-kilter, taste buds are at 50% functionality, irritability is skyrocketing, if you can't tell!

    Danni, I relate -- I have also never felt less attractive. I also feel deeply unmotivated to try to do anything to make myself look better, like put on makeup and cute clothes. It's like I'm wallowing in it all.

    I spent more than an hour today researching eye cream, as if that's going to solve anything. Also, why is pubic hair the first hair to start to grow back for me? No fair!
  • DanniB
    DanniB Member Posts: 49
    edited February 2021
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    Jo - it will start easing with every day now lovely. Do you take pain relieve? I refused the 3rd cycle and just used the hot water bottle because of sickness so was in agony, but this time i got new antiemetics and they worked a treat so was able to take zapain during the worst 4 days. i don't like them so as soon as can bear the pain i stop taking them and use the hot water bottle. I had the mapping - 4 permanent blueish dots, doesn't hurt and they look kinda cool. I start rads on 15th Feb - 15 sessions with the booster in each. I'm having VMAT curved thingy for the central breast bone. i will need to hold my breath when they do it to protect the heart and lungs. And on 1st Mar i start Tamoxifen.

    Sharon - i think you got it spot on, i think it is wallowing...i don't wan't to but maybe it is part of the process? You made smile about the pubic hair:) i don't have any re-growth anywhere yet that i can see. What does it look like? is it like after a wax or shave? Sorry, if too much information, you don't need to answer if you don't want to, i'm just trying to understand what to look out fo r to spot re-growth. I feel slightly differently about body hair, i want it all back and i want a choice when to remove or not - crazy i know... Sharon, i can see from your signature that you had Tamoxifen therapy in 2008, may i ask why and how you tolerated it?

    Marie - best of luck, can't wait to hear from you.

    It's day 10 for me today, the legs and the tastebuds are just back to being normal, GI is not yet fully recovered (i had bad constipation for 7 days) and my face has started peeling like from chemical burn, this is the last thing after all the SE for my skin. Plus i still have the numbness in the hands but not as bad as last time. It is all longer though this last time and much more emotional. The motivation to do anything is NIL. i've got to say thought the weather is not playing ball, its been raining cats and dogs with strong wind in London.

    Hope you have a good day ladies x

  • renbird
    renbird Member Posts: 53
    edited February 2021
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    Sharon0706-

    Are you done too? I'm 10 days out from last treatment. Whoosh. What a ride. Need anything? -Renbird

  • renbird
    renbird Member Posts: 53
    edited February 2021
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    Hi, November group ladies-

    Hallelujah! I'm 10 days out from my last treatment! (4 of 4 TCs) Yahoo!

    image

    I'm feeling good. Still can't believe I don't have to do this anymore. It started to feel like it would never end–– but it did!

    As of yesterday, Jan 31st, 2021, I'm finally off ALL meds to address the side effects: (nausea, stomach acid, oral thrush, and tiny tongue "papercuts" and sensitivity)

    Many of you are ahead of me with your final bows... but some are still wrapping up the last of their treatments, I imagine.

    If any of you need advice about addressing any of the above as you finish/continue your treatments, feel free to message me. Happy to help. : )

    My next and final step will be to determine if I start Tamoxifen or AI hormones. (I'm 49, pre-menopausal) so I think I may start with Tam and move to AI in a couple of years. If anyone has any advice, feel free to post it here or PM me! Thanks!

    Last, I am SO GRATEFUL to EVERYONE on this forum. So many of you have taken the time to share your experiences and feelings, and that's helped a lot over the past few months. Thank you! Thank you!

    Much love, take it easy, and be well.

    -Renbird

  • sharon0706
    sharon0706 Member Posts: 80
    edited February 2021
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    Hi all. Way to go Renbird! I am 12 days out from my final TC treatment. Started Lupron shots on the last day of chemo. Sorry if I already announced that here. Still taking Ativan to sleep but will start trying to wean myself off when the full cycle is over.

    Marie, I've been thinking about you and wondering how your implant procedure went this week. Thinking about you a lot -- hoping it was okay. I imagine it will take a while to feel anywhere close to normal again.

  • sharon0706
    sharon0706 Member Posts: 80
    edited February 2021
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    Hi DanniB - you had asked me about tamoxifen.

    I was on it preventatively (strong family history, LCIS diagnosis when I was 30) and I tolerated it well.

    I was also on an SSRI at the time as I was taking tamoxifen, and there were times when I had night sweats and I gained 5-10 lbs (ugh), but I never knew if I should blame the SSRI or the tamoxifen for those things. All the side effects eventually passed. I did have my period the entire time I was on tamoxifen which frankly I never understood.

    How is your neuropathy, skin, motivation, sense of taste? Hoping you are slowly feeling a little better. Recovery is really not a straight line, is it?

  • marie914
    marie914 Member Posts: 152
    edited February 2021
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    Sharon - I had surgery Monday for exchanging expander for implant and taking port out. Both went well and I was home by 11:15 am. i never even had to take a pain pill I just used ibuprofen. I am trying to be careful since I feel so good not to overdo it. My left side and under the arm still feels a little tight but not bad. I don't think I remember what normal feels like. I know I feel so much better than a few weeks ago after my fourth and last TC infusion. I am walking again; still trying to increase. I did 6000 steps yesterday and building up.

    Hope you are feeling stronger every day. My oncologist said after the third week after your last chemo infusion, and you don't get another one; your body will start to feel better every day. She was right for me.

  • sharon0706
    sharon0706 Member Posts: 80
    edited February 2021
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    Marie, so glad to hear all of this! All good news. Thanks for the update.

    Also, everyone, I recent joined a asynchronous video group for breast cancer people on Marco Polo after seeing this article.

    Women post their stories via video and people respond very supportively to each other via video. There are small groups -- 15 women in my group.

    (I had to go on Instragram to direct message the woman who is coordinating it, and then she added me to a Marco Polo group.)

    It takes a LOT of courage for me to post videos of myself, esp since I feel so unattractive these days, but it is another nice way to deal with the lonlieness by connecting with others who have been dealing with cancer during covid.

  • DanniB
    DanniB Member Posts: 49
    edited February 2021
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    Hi Marie - so glad to hear that your surgery went well and you are feeling good! Great news also on getting back into walking. I also did a first walk today for the first time today in a month.. only because we had to isolate 2 weeks before and 2 weeks after my partner's surgery.

    Sharon - gosh, dx at 30..thank you for sharing. I was advised by the dr to expect hot flashes. He will review the tolerance at 6 weeks so lets see. I got my first proper period after since the miscarriage and chemo, im told to expect the disappearance. I am doing better with all side effects, thank you. Neuropathy is still there when i use warm water, get warmer in general but not too bad. Taste is back to normal and skin seems to be getting better too. For motivation, i bought myself a wig Happy not sure if i will wear it but its there if i want to. Also today i got a message from the GP offering a cvid vaccine - so i got that done. Since i had a severe reaction to my chemo and am also allergic to penicillin (anaphylactic shock reaction), Pfizer vaccine is not suitable for me (i understand same goes for Moderna, but this was not available) so i had the Oxford one. No reaction so far and can not even see where the injection was. Getting the vaccine actually lifted my spirits a lot today.

    Re-Marco Polo group, Sharon. what a great idea, but I'm same, it will take a lot of courage to post videos (im not hot on social media stuff). However, I would definitely like to give back and help by offering encouragement and support to anyone going through the BC investigation, dx and treatment. I will have have a look and see if i can master some courage to do that.

    x

  • sharon0706
    sharon0706 Member Posts: 80
    edited February 2021
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    I have had heartburn for days! I thought this was because I ate Indian food on Friday night but I don't think that's it. I see now online that it's yet another chemo side effect. Tums doesn't help and Prilosec apparently takes days to work (these are the the only two things I have at home). Did anyone else have this problem and find a solution?

  • renbird
    renbird Member Posts: 53
    edited February 2021
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    Hi Sharon-

    One of the worst symptoms for me was a roiling acidic stomach and acid reflux / heartburn. I never had that pre-chemo.

    My hubby is a part time gastroenterologist nerd and full time radiologist, so I got his advice as well as from my oncologist...

    I took Zofran during the day to help with this and nausea but when that wasn't enough...

    1. One or two FAMOTADINE pill (brand name is Pepcid) per day helped. Prilosec is more like a program you start. Pepcid/Famotadine is more like when you are having a specific issue.

    sometimes with intermittent caps of

    2. Pepto Bismol (pink liquid, not pills)

    Also, little meals instead of big meals with water until your tummy calms down.

    I hope this helps!

    -Renbird, your buddy in RI now 2 +weeks out from last treatment


  • DanniB
    DanniB Member Posts: 49
    edited February 2021
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    Sharon - i had heartburn with nausea after 3rd chemo. Dr changed the anti sickness for the 4th chemo from domperidone to cyclizine and it worked a treat with an extra benefit of sleeping like a log. i also chewed small pieces of fresh ginger before i had the new meds and that gave temporary relief.

  • claire1973
    claire1973 Member Posts: 84
    edited February 2021
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    HI sharon0706 and Thank you renbird

    I have been trolling here for advice. I started chemo January 7th.

    I am on 12 weekly Taxol infusions and just had my 6th one yesterday. I was explaining my "nausea" to my oncologist and she said that sounds more like acid reflux from the pre-meds and the chemo...that it gets worse after treatment. She went ahead and prescribed daily extended release Prilosec for me to start taking now. She said she wanted to avoid a possible ulcer. I took the first one yesterday...then today. I will report back if it seems to help after a few days. I like the idea of the Pecid and not starting a long Prilosec program, so I will keep that in mind for post chemo.

    Thanks for being here everyone!

    Claire

  • sharon0706
    sharon0706 Member Posts: 80
    edited February 2021
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    Hi Renbird, DanniB, and Claire. Thanks for the heartburn advice. I am happy to report that it passed after I took Tums, Zofran, and Mylanta liquid. I think it was the Mylanta liquid that finally helped, although it was hard for me to drink that stuff. I talked to my NP the following day and she also said Pepcid and/or Prilosec.

    Renbird, way to go, making it to the end of your chemo cycle. Tomorrow is the final day of the whole 12-week TC cycle for me. I'm feeling better although there are some moments when I feel overwhelmed with fatigue. I get tired from exercising.

    I've been doing an online cancer support for the last three months, and one of the things I learned from the seasoned therapist was that post-chemo can be one of the loneliest times for patients. We're technically "done" with chemo so people stop checking in as much and assume that we're feeling better and back to normal, when the truth is that it can take quite a while to feel better. That thought has been helping me and I wanted to pass it on.
  • DanniB
    DanniB Member Posts: 49
    edited February 2021
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    Thank you Sharon - it makes sense. I had lots of different emotions after the last one and whilst the fatigue was definitely most noticeable, 3 weeks on i am pleased to report that its much better :) Here's to your final day tomorrow going smooth and easy! p.s. Maybe if you imagine that Mylanta is your favourite cocktail it will go easier? SillyHeart

    I start my rads tomorrow...

  • renbird
    renbird Member Posts: 53
    edited February 2021
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    Hi Sharon-

    Congrats on finishing up your 12 weeks... phew! Glad the heartburn had subsided too.

    I hope you get more and more energy back, and that you stay cancer free! : )

    Will you go back on Tamoxifen now? Or AI? (I see you were on Tamoxifen years ago... this was a recurrence then? Somehow I lost sight of that.)

    -Ren

  • renbird
    renbird Member Posts: 53
    edited February 2021
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    Hi Claire1973-

    Let us know how things go. We are here for you! : ) XO -Renbird

  • sharon0706
    sharon0706 Member Posts: 80
    edited February 2021
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    Claire - way to go on getting halfway through your treatment!

    DanniB - how did the first radiation go?

    Renbird - Not going back on tamoxifen since cancer arrived even though I had been on it for a total of ten years. I was originally on tamoxifen because I was diagnosed with LCIS when I was 30 and unfortunately I have a strong family history. My second Lupron shot is Monday and eventually when I'm post-menopause the plan is for AI. Planning to have DIEP surgery sometime this spring when elective surgeries are back on in Massachusetts. If it's possible, I will have the oophorectomy at the same time as the DIEP. What is next for you?

    Yesterday I celebrated the end of my chemo cycle by going cross country skiing with my teenage daughter. Twenty minutes in I was hit with a wave of fatigue. It took me a really long time to get back home, stopping every couple of minutes to breathe. I felt so weak, and I had to fight the self-criticism I felt. My daughter stuck with me even though I kept telling her to go ahead.

    I thought for sure I would fall asleep really early last night, but had I also told myself I would stop taking the Ativan for sleep at the end of the chemo cycle, so instead of collapsing into bed I tossed and turned for hours. I feel better today but am taking the day easy and hoping for a better night as my body adjusts.


  • renbird
    renbird Member Posts: 53
    edited February 2021
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    Hi Sharon0706

    Sorry to hear you are having a tough time post-chemo, especially re: energy. Are you feeling any better today? Hope so! : )

    How many days/weeks after your last round of chemo was that hike with your daughter? I'm a month out and I have had decent energy, but just yesterday I felt really fatigued out of nowhere and got heartburn. I too told myself "I'm done with all the drugs" but caved and took 2 rounds of Pepto and a Famotidine. Felt better.

    Yes, the Ativan helped with sleep. I haven't taken any in a couple of weeks, but if you need to–– do not beat yourself up about it! If there's one thing I remember from my last onco meeting, it was that when I asked, "So... how long after my last chemo until I'll feel pretty much 100% back to normal? A month? Two?" She said, "Six to nine months."

    -Have you tried Tylenol PM or just Benedryl to help you sleep?

    There are definitely starts and stops to it recovery, it's not a smooth straight line, that's for sure! You'll take two steps ahead (yay!) but sometimes one step back... but there IS progress, right? What are 1-2 things that you notice that are improving? Sometimes that helps me to keep my spirits up.

    For me, it's been little things, like: I have some leg hair back! I have baby fuzz on my bald spots! I don't have to worry about my nails anymore, they are healthy and happy. I don't need to sit in that chair and get chemo!!! : ) Hurrah!

    You asked what's next for me:

    -No rads (I had a mastectomy & chemo so can avoid)

    -No surgery (I am pretty darn flat as a pancake naturally so decided not to get implants)

    -I have one last decision to make and it's bothering me a bit. It's the old Tamoxifen vs. AI hormone therapy.

    Oncs are pushing AI but I'm premenopausal (at 49) and newly married (3 years) so I'd like to keep my estrogen flowing maybe a couple years longer, then, hopefully, if I slide into menopause I will switch to AI. I need to be on a program of some type for 5 years total, so I think I'll split the difference..?

    You must've been crushed to have a recurrence after 5 years of Tamoxifen! Ugh!!!!! Twelve years later was it? Are you 42? (I'm looking at your bio stats) We are similar in this regard: 1.3 cm, Stage IA, Grade 3 (But my Oncotype was 36! Yikes!)

    QUESTIONS:

    1. Thoughts about all the above? Are you "anti Tamoxifen" after your recurrence experience?

    2. How many shots of Lupron will you need before you can take AI? Or do they just check your blood estrogen levels at some point? Chemo has stopped my period but I've heard ot may come back.

    3. Do the shots hurt? Soreness afterward?

    I know you have surgery to contend with too, so if this is too much, no worries! I don't want to add to your stress, Sharon!

    -Renbird in RI

  • sharon0706
    sharon0706 Member Posts: 80
    edited February 2021
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    Hi Ren. Thanks for the encouragement.

    No, I am not anti-tamoxifen. Yes, I was really mad/sad/confused that I got cancer anyway. But I was on it for ten years without any cancer, and for all I know it delayed or slowed the cancer. I was 38 when I started it, after I had my second kid. Took it for one five-year course, stopped, and then got put back on it for another five. I'm 49 now.

    [My two younger sisters, both premenopausal (and both physicians actually), are thinking about going on tamoxifen because of our family history.]

    My plan with the Lupron is to get the shots for the next few months, through my first DIEP surgery, and then get an oophorectomy at the same time as the DIEP revisions (several months after the first DIEP).

    The shot is not bad, although next time I will tell the nurse that I don't want to see the needle. I go back to the chemo ward for it. I ice the area for five minutes before the shot (I have to advocate for this), the nurse gives me the shot, puts a bandaid on and it's sore afterward. Can't remember how long the bruise lasted last month.

    I told my today oncologist that sex is painful, and she prescribed Estring, a vaginal ring that you apparently keep in for three months at a time. It releases estrogen that doesn't get absorbed by the body. So I'm hoping that will help the sad situation down there.

    In case this helps others who did TC, I will say that my first full week after TC (week 13) was weirdly one of the hardest because of the sheet fatigue and body achiness. I was not expecting this! I felt so bad last week that I got a covid test (negative). My oncologist was not surprised and said it could take a month for this intense fatigue to start to fade away.

    My oncologist put me on letrozole this morning, and it seems like the combination of lupon, letrozole, and recovery from chemo is going to be a doozy.
  • marie914
    marie914 Member Posts: 152
    edited February 2021
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    Hello everyone!

    Sorry to hear Sharon that you are having these issues. I would be good to yourself and take what you need to get sleep. My husband uses SimplySleep - like Benedryl I think and helps him sleep.

    Renbird - I avoided radiation by having a left mastectomy and chemo too. I did have a breast expander on the left side however.

    I finished chemo January 8 and had my exchange surgery for my breast implant February 1. it was a little soon but I did great through the surgery and recovery. 3 weeks out and I am doing great . I have been feeling good since surgery it seems. I am sleeping well except for hot flashes which seem worse. I have not had much fatigue now but I did the first few weeks after chemo.

    I used cold capping but I lost about 40-50% after the first infusion and then it was just a little bit of shedding. About 3 weeks after the 4th infusion, I started losing hair again - A LOT! I don't have much hair left now 90% gone I think :( but I am getting new hair. You can see it coming in during the bald sections. I wear a bald cap.

    I looked at my chances of it coming back and it seems low but I know you never know. I think I am going to skip the letrozole even though my oncologist encouraged me to take it. I just don't think I want to take AIs.

    I'm thinking of all of you and hope you all are doing well as can be expected.


  • DanniB
    DanniB Member Posts: 49
    edited February 2021
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    Hello lovely ladies, hope you are managing to get good sleep and rest to help the body recover. Sorry i have been away for a while, i found the radiotherapy treatment itself is going ok. However, the trips take me about 4 hours everyday and i have been feeling progressively sensitive/anxious (not about the treatment, just in general) and tired. My skin is fine, just starting to get a little itchy and slightly red, i have 7 more sessions to go. I am the odd one who got the nausea from it but when i took the meds, i got super restless legs so am chewing ginger instead. I have been walking 4-6 km every day to try and help with all the SE and have my dr appointment today for a check up. i have also got my hair back, its only on the crown at the moment but is getting thicker every day. I haven't stopped having periods during the chemo, will see what happens with Tamoxifen which i begin taking on 1st Mar.

    Much love, Danni x


  • claire1973
    claire1973 Member Posts: 84
    edited February 2021
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    Hi all,

    Just a check in from a lurker. I started Chemo in January but wanted to update on the meds that have worked for me. I have been on extended release Prilosec for 2 weeks and have not had to take another nausea pill since it kicked in. I hope this can help someone else, too.

    Also--I was on more Ativan than I wanted to admit to my doc. i asked for something non-habit forming. She gave me Gabapetin. It has worked well. I sill wake up twice or so to use the bathroom at night but I am able to fall back asleep. My problem was not falling asleep, it was STAYING asleep. I was waking up at 3am for the day many mornings a week. This is a good medication for that, I guess.

    Hope everyone is doing well today. xoxo

  • renbird
    renbird Member Posts: 53
    edited March 2021
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    Hi Marie914-

    I too cold capped and keep about 50% of my hair after chemo, and, like you, 2-3 weeks after my last treatment (#4), it started shedding again. Ugh! I'm over 5 weeks out from last treatment and it still pours into my hairbrush every day. I can still wear a hat and fake folks, but it's getting harder and harder.

    I don't mind any of this except I just wish I had a sense of when the shedding might stop! *How many weeks after your last treatment did the shedding stop?*

    I have baby fuzz growing in too but, man... it's gonna take a long time to grow back.

    Thanks! -Ren


  • Maddy83f
    Maddy83f Member Posts: 78
    edited March 2021
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    Renbird - I stopped chemo (AC/T) last April and I would say it took about a month to start feeling enough baby fuzz to feel wind in my hair :). My eyebrows and lashes fell out about when I was starting to grow my hair - but they came back before I had expected - I wore sunglasses and a baseball hat for most of the summer. Best thing I did was to get my hair colored when it was long enough... my hair came in gray and I hadn't been gray prior to that. When I finally got my hair colored I felt like I could recognize myself again, and that felt really good. My hair is now very thick and curly - I can tame it down with product when I go out - big moment this past weekend when I could use a round brush while drying my hair and I had enough to grab a hold of the brush.

  • marie914
    marie914 Member Posts: 152
    edited March 2021
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    Hello Renbird

    I am 7 weeks 3 days and I am still losing my old hair. Not much left. I have a lot of fuzz now. It makes my head darker instead of the pink bald spots. I wear a hat.

    Maddy - I lost most of my eyebrows this past week and eyelashes a few weeks ago but they are growing back. I heard they go back and forth - shorter growth sessions. ???

  • Corals
    Corals Member Posts: 15
    edited March 2021
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    Marie914 is your hair just thinned 50%, asking because I am about to start TC and using cold cap so hoping it works for me, already use s serumon lashes and brows and will continue that hoping it helps

  • marie914
    marie914 Member Posts: 152
    edited March 2021
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    corals - My hair thinned 50% first infusion - about 17-21 days after which is the sweet spot it seems. Then the next two infusions I just had shedding. Then the fourth and final infusion I lost about 40% about 17-21 days after it. I would say another 50% but I do still have some hair. LOL so I guess I'm not 100%. I have bald spots in a few places. forehead and in the back of my head. I have a very small ponytail now and you can see bald patched underneath on the top of my head. I didn't lose by my ears like some did.

    My take is that some nurses that put the digncap on do a better job than others and some people advocate for themselves more. My nurses were very nice but I don't think they did a good job putting it on and I didn't advocate for myself. I am on a facebook group for dignicap and many of them didn't lose anything or just a small bit. They also did a good job on taking care of their hair during. Really gentle and washing 1-2 times a week. I did use a ponytail since I had medium long hair and live in tropical southwestern Florida - very hot. I didn't use a rubber band - it was a gentle ponytail tie but still.

    If you do it, make sure you advocate for yourselves, research how to take care of your hair, and I would, but this is personal, cut some of it off so it doesn't look so straggly. I want to but my husband wants me to leave it alone. It is coming in now and the bald patches look dark now and not pink bald.

    Let me know if you have any other questions.

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