Starting Chemo May and June 2024 Support Thread
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@bythebay and @justsnapd8. That’s a good description of what happens anytime I get a fresh round of IV fluid, even with atropine. Urgent, but not watery. I assume my body is expelling all the toxic chemo sludge.
I hope the port discomfort goes away soon, BytheBay!
For food, I’m just doing “the best I can whenever I can” right now. I’m trying not to be too hard on myself, even though I’m feeling overall restless and lost without a sense of purpose. The only thing that tasted ok to me yesterday was cherries, so I ate some chicken (ick taste and texture, but I pushed through) and some cherries (after 8 they started tasting weird spicy and soapy, but I got in a good double serving). Most prepared foods taste salty and mealy right now, but I’m forcing myself to at least drink, drink, drink.1 -
Not at all! this is the chat that we need here! Everyone has a completely different experience and we have so much to learn from eachother. ❤️
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@bailey.boo Doing the best you can, whenever you can…. Perfect! When my husband went through chemo and radiation, I remember him eating things that he used to love and saying they tasted like soap. I’m so sorry you’re struggling with that, too! I hope you find some foods that you can tolerate during treatment 🙏❤️
This whole experience has been a lesson in surrender and acceptance for me. Surrender to the fact that my body is fighting cancer, so I must accept that I’m gonna feel like shit for a while. When I heard how well some of you have tolerated the chemo thus far, I was judging myself as being weak (or not as strong) as you. Like, maybe I’m just a big baby and need to push myself harder.
Then I decided that I can’t control how my body is reacting to the chemo, and all I can do is accept how I’m feeling and honor it. So, on the days that my head is pounding so hard that I can’t even bear to read a text, I don’t pick up my phone. I rest and I wait out the clock until it’s time to go to bed and put that (waste of a) day behind me. Hopeful that tomorrow will be a better day. Sometimes it is, sometimes it’s not. When it’s not, I practice acceptance again. When it is, I feel such joy and gratitude. I take any little win (like being able to complete a single task a day, suddenly tasting a food that I couldn’t taste the day before, or getting a decent night’s sleep) and celebrate that!I also like to have a “carrot” dangling in front of me. Something that I can look forward to. My mother-in-law taught me that trick when she was battling ovarian cancer. It gives me something to think about on the days I feel like crap and totally defeated. My husband and I have a long weekend planned this fall when I’m done with chemo and radiation. We’re going to see some live music, tour some breweries, and go hiking in Asheville, NC. I cannot wait!!
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@bythebay I think the headaches might just be from the drugs for me. I have not had an issue with diarrhea and I drink at least 64oz of fluids every day, so I doubt I’m dehydrated! I have suffered from migraines since puberty, and these headaches after chemo remind of the pain of a migraine. I literally cannot do anything productive because they hurt so bad, and I feel like I’ve had a lobotomy (I cannot complete a coherent thought, let alone write or speak to anyone in a manner that makes sense🤪😩). No amount of ibuprofen helps. The worst days seem to be 4-8 for me thus far, but the headache lingers, simmering in the background, for about two weeks. I’m two treatments down with two to go. August can’t get here soon enough!
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Some of you mentioned the tops of your heads hurting since your hair started falling out. I found that to be true for me as well. I shaved my head a few days before my second treatment. A couple weeks later, the top of my head stared to hurt (like I have ingrown hairs). I have been diligent using the tape lint roller on my head a few times a day since shaving my head (to get the little dead hairs out so I DON’T get infected follicles), but guess it’s unavoidable. I stared putting arnica cream on my scalp where the follicles are tender and that seems to have helped. Or, they just healed on their own. Who knows! 🤷♀️
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@bythbay - Yes, we did! :-) Also, in my research, I read the chemo port surgery hurt for a few days. With me, it was well over a week. I hope you feel better soon. We will get to the other side. It's only temporary!
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@bailey.boo Thanks so much!
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I haven't been posting, but I've been reading all of your experiences. It does help to know you aren't alone.
I've had a rough go of it for the last month. My 3rd cycle hit me much harder than the first two. And I didn't start to bounce back at around day 8 like before. Then to top it off (and boy did it!) I got a cold. Migraine headache for over a week, bad sore throat, then deep coughing which gave me incontinence because I was so tired. Ended up in the docs office 4 time in a week getting fluids and magnesium. They tested me for COVID, flu, RSV, pneumonia…but decided it was just a cold that was kicking my butt. They gave me antibiotics which gave never ending diarrhea for a week. I started to get human again two days before cycle 4 was scheduled. Blood work was okay so they approved me if I thought I could handle it physically. I went ahead. Cold is just a nagging cough now, but I have waaaaay more nausea this cycle (I'm on day 4) than the past ones. I'm in awe of all of you that seem to be able to do "life" right now. I barely can walk around my house and even reading is a chore. 4 cycles of 8 down though so I'm holding on to that. Next cycle is new drugs though - first 4 were Taxol, Carboplatin and Keytruda. Next 4 are Adriamycin, Cytoxan and Keytruda. Praying the side effects aren't worse than I've been experiencing.
I've basically decided to go bareheaded most of the time. The hats/wigs just give me never-ending hot-flashes, which then increases my heart rate too much. Yuck.
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@jlhmom75 Wow! That sounds awful!! I totally get not being able to “do life”, let alone read or type. It feels like you’re being tortured some days, doesn’t it?! Your job (until treatment is complete) is to do whatever you have to do to stay sane and alive (without judging yourself). If you need to sleep twenty hours a day, then sleep. Your body is fighting a war with the cancer and the drugs, but that war will end when your treatments are complete. There is a light at the end of the tunnel! I hope your next infusion goes ok and your side effects subside with the new drugs 🙏❤️ When is your next chemo?
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@jlhmom75 its always been my fear to get some sort of sickness that just knocks me out during this. It’s already bad enough I can’t imagine it getting worse by sickness. I’m sorry you have had such a hard time.
I am on day 4 post 2nd chemo treatment and the cloudy brain has officially set in and my taste buds have once again been knocked out. My lips and tongue are numb and tingly. Such an odd sensation. I felt sooo swollen yesterday after walking around for some holiday events that I wasn’t sure I’d be able to get out of bed today, but as a mom I didn’t have a choice! The first time my worst days were from day 5-12 ish then started to get better. Does that sound pretty typical? I haven’t lost leg hair yet but feel the growth has stopped. Of all things to happen I wouldn’t mind losing my leg hair and possibly never having to shave again. lol I’ve heard that’s happened ALOT.
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@jlhmom75 So sorry you've had such a hard time of it. I'm on the same regimen, but they do the Taxol every week. It may be a tolerability thing, cardiac, or just because of my age (66). I start cycle 2, Tuesday, and I'm not looking forward to it! I'm so grateful I have my sister and SIL to help me navigate the rough waters. I don't have any children or grands. Most of y'all here are younger than I am, with jobs, kids, etc. I feel blessed aka lucky that I don't. I wouldn't be able to manage.
Antibiotics for a cold? Not sure the trade-off was worth it. Did they give you meds for the nausea? I didn't have any nausea with cycle 1. Hoping they can keep it at bay for cycle 2 as well.0 -
@ebfitzy You mentioned leg hair lol. I don't have much at 66, but I have an ortho appointment on Monday for my knee and had to shave the few I have. They were embarrassingly long! 🤣
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I ended up having nasty dull chemo hair. It was dry like horse hay. I couldn't wait to get it off my head. My sister is a hairdresser and I had her shave it. I'm going wig shopping next week. Surprisingly, I'm not upset. It feels refreshing. Here is a pic of me and my little momma. She recently lost her husband (our BillDad) a few months ago. She is still standing strong for me and has been my Angel! Oh yea, I'm a huge Georgia Bulldog Fan. Go DAWGS!
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@jlhmom75 I’m so sorry you were having such a tough time. Your 3rd cycle sounds brutal, especially with that cold on top of everything. Congrats on getting halfway through your treatment! I’m celebrating the same. I hope the new drugs are easier on you, and I hope all much better days are ahead for you now. I go mostly bareheaded at home—comfort is key right now. Hang in there! We’re all here for you.
@dw0330 You and your mama look beautiful 💕
{{{{HUGS}}} to everyone! I hope you’re having a great and peaceful weekend!
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I think the antibiotics are a precaution to stave off a secondary infection from the cold, which is common and dangerous when you’re going through chemo and the immune system is shot. Just food for thought.
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@ebfitzy My leg hair and armpit hair FINALLY stopped growing about a week after my second treatment. It’s awesome! No longer do I have to shampoo, condition, OR shave every day 🥳 It takes me longer to squeegee the shower walls afterwards than it does to actually shower 😂 This must be what it’s like to be a guy!
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@jlhmom75 As if the chemo symptoms aren't enough, hoping it moves on sooner than later. Best to you.
@dw0330 You look great! Condolences to you and your lovely Mom…you have a lot going on.
@justsnapd8 Lol on the leg hairs, I sure get it. I've had knee replacements, good luck with your knee appointment.
I think about going to other Dr. appointments and just going out in public anywhere, not that I feel up to it. I imagine we need to be extra careful about being out and about. How do you all handle it? Are you going anywhere during chemo? During my first bc I was young, kept working and did radiation on my lunch break. It just made me tired but nothing else.
4th of July we went to our daughters for dinner and fireworks with the grandkids. After I ate I got such a painful stomach and had to leave abruptly to get home. It was no fun for the night. Imodium saved me and now trying to get back to normal. I drink a lot of water and hoping for the best.
Enjoy your Sunday ladies 🌞
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yeah, we probably all need to start thinking more about being around other humans. That doesn't cross my mind quick enough. I go in stores when I'm out. Other than being a little tired and wobbly I'm not too bad of shape yet. I my hair though it's in crappy shape and it's time for it to come off. I went to my brothers for July 4. It was fun being over there with the Littles and seeing the big guys too. Otherwise I'm really a homebody as a rule. I'm going to the ortho doctor to find out what's wrong with the knee. it's not hurting right now but it doesn't take much to hurt it. It's crunchy, so it may be time for a knee replacement, but that can certainly wait until after all the other stuff.
Have a wonderful day!
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Happy Sunday!
I understand the challenges of balancing chemo and everyday life. During the first week after chemo, I mostly stay home except for appts. After that, I’ll run errands. The FL heat is tough—I almost fainted walking up my garage steps and again after leaving Publix on the 4th. I had to sit on the curb until everything stopped closing in. If I get too stir-crazy, I take myself shopping, but that’s only happened once so far in reality. I've joined a local breast cancer support group but have only made it to one activity so far due to timing issues. I'm trying to be cautious around others since my immune system is compromised. I’m itching to get to the point where I’m getting out more again!
It sounds like you're handling things well and finding lots of joy with family ❤️ Good luck with your ortho appointment—I hope it’s nothing serious.
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@bailey.boo Be careful in the heat! I'm in Louisiana so I get it. I know you want to do things that are normal for you, but passing out could have really bad consequences. Take it easy.
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@bythebay I avoid people at all costs during chemo. I order my groceries online and go pick them up (it’s a free service). I send my kids or husband to the pharmacy or store if I need something (or just order it from Amazon). My doctor told me that around day 8 to about day 15 after each chemo are when the white blood cell count will be the lowest, so not to go anywhere near crowds during that time.
I actually bought a puzzle board and had a friend bring over some puzzles. Yep, I’m doing puzzles now. That’s how bored I am! But, it’s only temporary. I’m just trying to pass the time any way I can. I read a lot (when my head isn’t hurting), I’m planning our trip to Asheville, looking up recipes to try (for the week I’m feeling decent between infusions), etc. I’m trying to be as gentle on my body as I can, not pushing myself when I’m just worn out (which is most of the time!).
My dad flew down from PA yesterday to keep me company this week before my third treatment on the 15th. I don’t actually want anyone here with me right after my treatments because I mostly sleep, have a nasty headache, and generally feel like crap so I don’t feel like talking to anyone. Plus, I can’t sleep at night, so I send my hubby to the guest room, while I fidget all night long 😂1 -
@bailey.boo I'm in Florida too. It has been brutally hot!
@justsnapd8 I'm typically a home body but found myself wanting to get out. Yesterday, my son and I, ran an errand. It's was nice to get out and feel a bit of normalcy but I am not ready for group settings yet. My biggest fear is an uncontrollable side effect suddenly coming on. YIKES!
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@dw0330 I don't get the urge to go shopping or run errands, but I am staying with my sister so I do have the mental need to go to my house often! I pick up a few things that I need or want. Usually for something to do for crafting.
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@justsnapd8 Ooooo what sort of crafting do you do? I'm finding that drawing and painting is keeping me sane. I also do collage and printmaking.
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Also waiting to hear! I feel so restless but the normal things I geek out over are too mentally intense. I need a good, fun, simple hobby or two!
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Saturday, I just wasn't ready to let go of my hair. Sunday, it got to the "too messy" point and I was emotionally ready. Monday, a stylist friend I've known forever buzzed it, at no cost, which was sweet of her to do. She wanted to take it down to zero but I asked her to leave a little on it. I read about the possibility of ingrown hairs; she hadn't.
Tuesday was day 1 of Cycle 2…. moving right along
@sarahjunefox @bailey.boo I switch up depending on what I can handle. I do jigsaw puzzles, diamond art, and I crochet. I started working on a shawl for fall, but not convinced it's right so I'm fixing to rip it out and start over. I also am going to do some chalk crafting, it's DIY home decor. I don't have much of an imagination, so I need guided projects. Let me know if y'all have any other suggestions. I'm retired and need to keep my mind busy!
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@justsnapd8 Love the pics! I’m sure it feels weird, but good, to have your hair finally taken care of! It’s good that you remembered to leave some length to grab onto so you can remove them as they die off. I used a tape lint roller on my head a few times a day until the hair was mostly gone (about two weeks for me). I still got some painful hair follicles on the top of my head during that time, but not too uncomfortable. I rubbed arnica cream on my scalp before bed whenever it was really bothering me, and that helped a lot. It’s a natural anti-inflammatory. Boiron is the brand I use.
Congrats on getting another round under your belt!0 -
My dad flew in from PA to hangout with me for the week. It’s been great! He’s getting my honey-do list knocked out!! I’m feeling great this week for the most part, so it’s been fun just hanging out with him. Took him to some of my favorite local bakeries for some indulging (we bought six different flavors of goodies, took a bite out of each one, and brought the rest home for my kids 😂). I don’t normally eat this kind of stuff anymore, but I indulged myself and enjoyed every bite! We keep joking that we are twinsies with our bald heads 😭
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@Love4All The stylist was planning to take it all the way to the scalp but I stopped her lol. There are some painful spots and I'll check out the arnica cream. I'm not familiar with that. And I do have a tape roller and have been using it a few times a day, just like you say. So glad your dad was able to come and visit. He looks wonderful as do you! Don't forget to put sunscreen on your scalp! Enjoy his company!
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