Starting Chemo May and June 2024 Support Thread
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Yay! You got one treatment down!! So sorry you are having such vertigo, though. I definitely am dizzy for about a week after chemo (although I’m not on the same meds as you), but it improves every day after that. I hope you continue to improve each day ❤️
Also, I am having the opposite of diarrhea after the second round of chemo. It has not been fun! I was taking stool softeners, but finally broke out the Smooth Move herbal tea yesterday. Let’s just say “that shit works” (pun intended)! I feel like I just prepped for a colonoscopy, but holy cow do I feel better 😂🥳!!
I keep a little notebook to write down my symptoms every day. That way I can reference back to it during my next round of chemo. It’s amazing how much you forget once you start feeling better. I was like, “Oh yeah, I forgot how long the headache lasted and when my taste buds started to improve.”
Hang in there and remember my motto…. It’s only temporary! You will feel like yourself again!!4 -
Peeking in to say hi! I’ve been part crazy-busy, part mentally overwhelmed and drooling.
I wish I’d have checked in sooner— all of your pics and positivity are so uplifting! You all look beautiful and strong! I'm still playing with wigs and scarves. I have one "good" long blonde one that looks like my natural hair, which I use for meetings to keep a consistent appearance—I work remotely, and not many people at work know I’m dealing with breast cancer. The others are freebies, cheapies, and second-hand. I prefer tying scarves myself over using pre-tied ones. My head is part shiny bald, part prickly, and randomly tender, mostly at the center, so I have a reverse friar tuck going! 😂 But I can play with wig colors—no gray roots to worry about! I haven't tried any wild colors yet. I need to stop myself because I probably won’t want to wear a ton of wigs when my hair starts growing again in this FL heat!I'm on day 3 of TCHP chemo #3 of 6, celebrating what I hope is the halfway point! Getting fluids and atropine with my 2nd chemo helped, so they did it again this time, along with potassium and magnesium. I go in for more fluids and atropine tomorrow. I still pop Imodium like it's candy, and more IV fluid seems to trigger a bout of diarrhea each time, but the cramping stays away, making it much less painful than round 1!
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Not sure if this will help, but one of my wigs are too big and slides all around. I bought a band-cap combo, and the extra thickness keeps it snug and in place on my head. There’s also YouTube videos on how to sew and tighten the caps— I’ve bought thread, but who has time and energy to sew right now? ☺️
Now I had one wig that was just too small and kept popping off of my head, but I ruined that one in a series of unfortunate events trying to tone down the gold color with purple Rit dye, which turned the cap and part of the front band dark purple so it showed… then I tried to trim the band and accidentally cut the lace front.
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I get eye twitches too! And sometimes random flashes of light out of the corner of my eye, mainly during the first couple of days. I’d say that’s my weirdest symptom.
And to answer the other question, I still have my eyebrows and eyelashes after 3 rounds. They are getting thinner, but I have low thyroid issues, so mine weren’t thick to begin with. I hear they go near the end. And I hear the eyelashes are also the first and fastest thing to grow back!
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@bailey.boo I’m so glad you checked in! I was wondering how you were doing. Halfway done 🥳🥳🥳 I love the creative wig alterations (purple RIT dye?!) 😂😂😂 that was some MacGyver level thinking! Sorry it didn’t work out, but you got a funny story out of it 🤷♀️🤣
I hope you continue to keep the good attitude and you definitely look amazing! I also have low thyroid levels (from Hashimoto’s Thyroiditis) for which I take two medications, so my eyebrows were already halfway gone before I started chemo. With my bald head and barely there eyebrows, I told my husband I look like a mannequin 😭. I did not buy any wigs because I hate having anything tight on my body (I can’t even stand to wear yoga pants). I’m just living my life with no hair and trying not to think about it. Let’s just say I avoid mirrors and don’t leave the house much at this point. Thank god for online grocery shopping and instacart from Costco! It’s a little more expensive, but it’s only for these few months. I figure I’m saving money in other ways, what with the no alcohol while on chemo rule 🤬!0 -
@sarahjunefox How did your third treatment go today? Hopefully uneventful. I’m sure tomorrow will not be fun, nor the next few days after that, but I’ll be thinking about you and sending good vibes ❤️❤️❤️
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@ebfitzy Wondering what you decided to do about the Fourth of July bbq? Gonna celebrate tonight before your infusion tomorrow? Also, what part of PA are you from? I grew up in Bucks County outside of Philly, but haven’t lived there since college. My parents, brother and sister all now live in Allentown. Once my parents retired, they decided they’d rather stay in PA near my brother (who went to Kutztown University and just stayed in that area) than down here in SC near me (too hot for my Dad here!)
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Checking in for Chemo start 6/26…hello to all going through this journey and sharing to help others.
I had right side mastectomy in May, opted to wait for reconstruction decisions. Oncotype says Chemo so thats where I am. 4 rounds of Taxotere-Cytoxan-Fulphila.
My first round needed to start before my port could be put in, so it was IV. Port goes in tomorrow, not excited about that for sure. I decided that since this whole journey is mainly out of my control I would try to control my hair loss and doing cold capping. It was suggested by my Oncologist if I was interested.
Day one 6/26, upon arrival, set up with IV for drip and hydration my capper started my cold cap. Quite labor intensive for the capper who is a wonderful kind, young woman. It is changed every 20 minutes and kept at a continuous temperature. One hour of hydration, then Premeds: Kytril (nausea), Dexamethasone (steroid). Next Taxotere and then Cytoxan, flush and done. 4 more hours of capping to keep the chemo from hair follicles. Very long, tiring day.
Day two 6/27 return for Fulohila injection which was given in the underarm fat of opposite arm.
Day prior to day one started Dexa steroid and for 3 days after infusion. It really hyped me up, took some Benadryl to help get to sleep. I feel very lucky that I have not had horrible side effects, generally tired, little headache.
Day 4 my stomach finally starting to get regular, thankfully no full on constipation or diarrhea. I have hydrated like a champ and hope to schedule some extra hydration infusions along the way.
I took Pepcid prior to Dexa for the days I used it. I started Claritin before injection and continue for 5 days, did not have any bone pain so far.
If anyone has any tips on anything from getting port to care tips for remainder of treatment, I'm sure we are all open. I would be happy to answer any questions regarding the cold capping if anyone has any.
Sending you all the best for the treatments to come…🌺
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@bythebay Hey, I'm sorry you're here :( I'm right behind you age-wise at 66. The port was a breeze. They used glue on mine, so no taping whatsoever. You will be grateful you have it next time. Besides, your veins can't take long-term abuse from the drugs. I don't cold-cap, but make sure your capper doesn't miss any spots. One of the girls here has a bald spot because she didn't say anything. I do get ice packs on my ankles and wrists to try and head off neuropathy in my fingers and toes. I'm still early in this dreadful process but others here will be along with tons of helpful info.
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Thanks for welcome @justsnapd8. I hope the ice packs help with neuropathy, I will read more about that. Looks like we are both one treatment in. Port wasn't a piece of cake, I would have preferred to have been knocked out lol. Its done and I'm glad. I go back on 7/17, how about you? I would say the worse constant is headache and tired. Thanks!
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@bythebay They tried to completely encase my hands and feet in ice packs but I couldn't take it. I was knocked out for the port; I guess I assumed that was common practice. Shame on me! I go tomorrow for the 3td treatment of cycle 1. Looking forward to the diarrhea protocol in the coming few days. Yes, I was joking! 🤣
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@justsnapd8 Sending good vibes for tomorrows treatment. How often are your treatment/cycles? I was able to keep the diarrhea at bay for last couple of days, yucky stomach tho. Stay up!
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@Love4All treatment 3 down and it was WAY better than the last one! My cold cap was fitted properly and I didn't feel poorly at all throughout it. Just bored which is a win right?! Halfway there with you @bailey.boo 🤞
My fab pink wig never arrived so I need to find another one. I have just been wearing a wooly hat most days, it's way comfier than the wig and our summer in Ireland hasn't really kicked off yet so I can manage it.2 -
@bailey.boo I have been thinking about you since I think we are on the same chemo/schedule! How are you doing?
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@bythebay The regimen is called Keynote 522, it's for triple-negative breast cancer. I'll do 4 cycles of Carboplatin, Ketruda, and Taxol, which is what I'm finishing cycle 1 of today. They infuse all 3 the first week of the cycle, then just Taxol the following 2 weeks. Next week I'll start cycle 2 with all 3 meds. After the 4 cycles, I'll do 4 cycles of Adriamycin, Cytoxan, and Keytruda. Then surgery, then radiation.
Thanks for the kind words. My niece loaded me up with Immodium, I'm ready! 😂1 -
I need a bit of advice from everyone….. I had my 3rd chemo on 6/26.. I am on TCHP every three weeks for 6 rounds. The first two were a piece of cake, just a little fatigue, bone pain, loss of taste and diarrhea for a day or two. I was doing all my normal things after the first two… working full time, socializing, bike riding, hiking, etc.,. This last one kicked my butt - I have no idea why. I have been absolutely exhausted.. I have been hydrating as much as possible, exercising when I can, taking it easy when I can and it's just not working this time. Does anyone have any suggestions to head off the fatigue? I am so frustrated - I am not a person to sit still and have never been a "napper" (even when I've been really sick with the flu) but this time around, I have NO energy. Thank you all so much ☺️
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@sarahjunefox I was just telling @bythebay that one of the girls here had a spot missed when they were capped, and to say something if she feels it. There are some cheap thin headcovers at TEMU. Do y'all have that in Ireland? I live in Louisiana US, so I know how the heat is!
@amesisland715 @bailey.boo Just checked in the other day. Scroll up a little and you'll see her beautiful face!1 -
@Love4All "Let’s just say “that shit works” (pun intended)! I feel like I just prepped for a colonoscopy, but holy cow do I feel better 😂🥳!!" OMG soooo funny! Thank you I needed a laugh today. :-)
@bailey.boo - Yay 3 of 6, you are half way through! You look amazing! Love the hair color choice and your eyebrows!
@bythebay - I started my treatment on 6/24/2024. I had my port inserted 10 days prior to my treatment. I was bruised and sore for about a week. For me, I'm glad I chose to have a port. On my treatment day they cleaned it and numbed it with spray. Told me to to take a deep breath and I didn't feel a thing. Now that I'm healed from having it inserted, I can barely feel it.
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@amesisland715 I'll only say to give yourself grace. Life is going to be different for awhile. Hugs
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@amesisland715 @justsnapd8 +1 to giving yourself grace. Fatigue is telling your body something important for sure. Having said that, I think I have managed to avoid major fatigue and GI issues with a crazy strict diet that I can ONLY stick to because I know it's only temporary. I am not a person who can sit still either, I'm always active, running , hiking, or walking the dog. I've slowed it down a LOT since starting chemo but am still managing my step count and a couple of runs a week.
My diet was recommended by a pal who went through a very aggressive chemo regime a few years back (red devil) and at the time she did a lot of research into the foods that work with and against chemo drugs. It's kindof based on the FODMAP diet (someone mentioned that already here?) but with a few tweaks for oestro boosting and limiting foods. My writing is so messy sorry. I don't have it on the list but I'm 100% dairy free anyway by personal choice. It's worked well so far for me, even if it's just a placebo it's a feeling of control over my health.
I'm also drinking immune boosting juices for week 1 and 2 after my treatment which I order from a local cold press place. It's expensive and I definitely can't keep it up forever but it feels manageable for this four month period. And lots of kombucha and lemon water.
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Hi @bythebay! I’m sorry you’re going through all this. 🧸❤️ I was only partially knocked out for my port placement but dozed through most of it. My issue was skin allergies. Despite sharing my running list of allergies, I still had bad swelling, blistering, and contact dermatitis, which delayed my first chemo by a week.
@dw0330 I’m so glad you’re feeling better! 💩
@amesisland715 , Overall, I think I’m doing good! I’m mainly feeling fatigued and achy. The fatigue is real, and I’m like you- I usually go go go, and I can never take naps, even when I try. Enter TCHP, and everything has changed! The steroids are also likely causing some insomnia this time for me, so I’m equal parts wired and exhausted. I think this is what’s increasing my fatigue the most. It’s likely taking my adrenals and cortisol for a wild ride. After nights of trying to find music on YouTube, I dug up some old yoga meditation music that helped me this morning. I feel like I should be moving more for my well-being. But I’m pooped!
Some other ramblings and possibly share-worthy stuffs:
During this chemo session, I did have to take off my ice mitts. My hands started insanely burning and tingling, and my fingers were swollen and bright pink. The nurses were concerned I was having a reaction to the chemo, especially since my main oncologist is on vacation. They wanted to stop the chemo, but I insisted we continue because I don’t want to risk recurrence, especially after being bumped to stage 3 and testing positive for the CHEK2 gene mutation. We tested by alternating the mitts and chemo, and it turned out to be the ice. Next time, I’ll use the tight surgical gloves and thin cloth gloves under the mitts like I did the first 2 times.
TCHP Chemo #4 is on 7/18, and my last one is scheduled for 8/29. My DMX is aimed for the end of September. I meet my plastic surgeon towards the end of this month, and I’ve met with my radiation oncologist for the initial consult; if pathology is good, I’ll start 6 weeks of radiation a few weeks later, Monday through Friday, totaling 30 sessions. She mentioned I’ll likely need to downsize my cup size with all of that and my sensitive skin. Sigh. She mentioned possible temporary lung issues months after radiation, so I need to research that. I have a lot of questions and need to get samples of radiation burn creams for allergy tests. I want to find out if there’s to be a gap between TCHP chemos and my ongoing treatment shots because of surgery and radiation. I’m curious when the port will come out. I have tons of reconstruction questions. I keep running lists on my phone for each medical team. I didn’t keep up with journaling like I should have. I need to go back through my posts here and gather. This is like a job. I’m feeling better about my decision to just delay my master’s program to next fall.
Thank you for sharing that list @sarahjunefox ! I need to dig into that! I met with a nutritional oncologist who just wants me to eat period, and I get confused sometimes on what to add and avoid, being HER2+ but ER and PR negative.
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@Love4All i am just hoping that the fourth I’ll feel okay. Lol today’s my hubbys birthday and I’ll be getting my chemo most of the day, but my 16 year old daughter is going to make him a cake! So thankful for that.
I did forget to take steroids this time before chemo so I hope it’s not going to make me feel worse this time around. Not sure if they will give me any prior to infusion or not.
My head is also very sensitive. I do find it more comfortable to sleep with a head cloth. It’s very uncomfortable laying my head directly on the pillow. So weird.
I hope everyone can try to enjoy the 4th!
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@amesisland715 I’m sorry to hear the chemo has knocked you off your feet. Sounds like you had managed extremely well with the first couple rounds, but the chemo is finally taking over (not surprising…. They are powerful drugs!) 🤬. Although it is frustrating for a person as active as yourself, if you’re feeling really tired, then rest. You WILL get your energy back when this is all over, so hold onto that knowledge.
I found the exhaustion the most life-altering side effect. I haven’t been able to exercise at all since starting chemo because that’s just how my body reacted to the drugs. It pissed me off for a few weeks, but I finally accepted the reality that it’s out of my control for a little while. The brain fog and headaches even kept me from reading or watching TV for a week. I literally just stared at the wall. It was all I could do. Very demoralizing! But, one day I woke up and found I was feeling better. It happened that quickly. I had a week of feeling like my old self before my next treatment, then it started all over again. But, I knew it was temporary and I just had to get through these bad days until I started feeling better. You can do this!
Also, make sure you let your medical oncologist know how you’re feeling. It could be a signal that you’re anemic, or something else that they might want to treat. My doctor lowered my chemo dose by 20% because of how I reacted to my first treatment and that made a huge difference for my side effects. I still get credit for the chemo (meaning the efficacy of the lower dose is the same as the higher dose), so it doesn’t mean I have to have more treatments. Because you had such a sudden downturn after the third treatment, they might want to lower your dose. It’s worth asking 🤷♀️Hang in there! You sound like a tough bird, and I know it’s hard for you to sit still, but try to surrender to what your body is telling you. It’s trying to heal. All of this bullshit is temporary! You’re fighting now so the future you can have a life! ❤️❤️
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@sarahjunefox I drink kombucha every day, too, but found that it burns my mouth the first week or so after chemo. I had to stop drinking it until my mouth heals. Such a bummer!
@bailey.boo The food that you put in your body absolutely matters, especially during chemo. I was so disgusted with the dietary recommendations the oncologists gave my husband when he was going through treatment for throat cancer five years ago. Ensure and Boost liquid drinks are full of chemicals, not real food! The doctors want you to get calories and protein, but they don’t consider the sources. Seems counterintuitive. A hundred calories from potato chips is not nutritionally equivalent to 100 calories from fresh veggies. You can make high calorie, nutritious smoothies so easily at home using actual real food. Avocado, coconut, nuts, seeds, fresh fruits and veggies, collagen peptides, turmeric, ginger, lots of greens, etc…. There are endless recipes online. Or, use a local juice and smoothie shop if you’re not into making them yourself. When I’m not feeling good, I preorder a week’s worth that I freeze in separate containers, then put one in the fridge every morning to thaw out for the next day. Consuming anti-inflammatory foods is super important during treatment. A quick google search will help you identify what you should and should not be eating. “Let food be thy medicine and medicine be thy food” Hippocrates ❤️
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I hope that last post about nutrition didn’t sound preachy 😳! I know everyone is doing the best they can (myself included). I just get so frustrated with doctors who know nothing about nutrition (because it’s not taught in medical school), and nutritionists who don’t promote eating real food 😤. Something that comes in a box or bag with a list of chemical-sounding names is not real food. It’ll fill your belly and probably tastes yummy, but it will not nourish your body. I can crush a bag of chips or pastries as much as the next person, so I can’t keep that stuff in my house… it’s like crack to me 😂. Anyway, sorry if I sounded like I was judging anyone 🙏
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Oh, no, not at all! I love to share info like that. I’m a big fan of natural, whole foods. I’m so sad since I moved from VA to FL— no more backyard hens, no more good non-GMO or free range farms, no herd share in driving distance! I used to do so much home canning and brewed my own kombucha, and I feel like I’m so far away from that now and in the land of processed, all around, pumping crap and now more crap into my body! I welcome any and all of the nutrition chat and info! 💕
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BTW, I also have hashis. I take Armour and tirosint. Not sure if I mentioned it on this thread, but I had a total thyroidectomy for papillary thyroid cancer in 2010.
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@dw0330 we started pretty close to one another. I needed to start chemo sooner than they could put the port in so I had to have it by IV, which is not really good for your veins. My port was yesterday and I have to say its pretty sore. Glad it doesn't have to be used for awhile. Today was actually worse day of headache and stomachache. Not diarrhea, but often. Trying not to go one way or the other and stay moving. Today I just sat…it was awful, unlike me. My head has hurt all day, pray tomorrow is different. Glad your stomach is ok now.
@bailey.boo thanks for the shout out. You all sound so brave and determined, happy to have found this.
I believe in healthy eating but my tastebuds just don't know what they want! After fasting for the port placement on the way home my husband got me some pancakes and I woofed them down. I don't ever order pancakes but they worked. Today he went to Pressed Juicery and got me some nice hydration juices and a yummy healthy frozen treat. I just don't know what I feel like eating today.
@justsnapd8 thinking of you 😊
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@bythebay I had "soft, often, but not diarrhea," last week (waiting to see what today brings), and then my sister thought that our definition of diarrhea might be different than the medical team's so she whipped out the diarrhea protocol (immodium). Consider your hydration loss when making that decision. Dehydration can land you in the hospital. I'm thankful to have a 2nd party who can help me with those decisions. I live alone, but staying with her and her hubby through this. She does try to see that I get a lot of healthy protein, etc. 🤗
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@sarahjunefox Thank you for that food list. I'm not a health-food person, but I learned a long time ago to be a "perimeter shopper ", avoiding those nasty processed foods.
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