Starting Chemo May and June 2024 Support Thread

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!!

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.

@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 🤬!

@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!)

@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.

@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! 🤣

@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.

@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! 😂

@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!

@amesisland715 I'll only say to give yourself grace. Life is going to be different for awhile. Hugs

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.

@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! ❤️❤️

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 🙏

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.

@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. 🤗