Starting Chemo May and June 2024 Support Thread
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thank you!!!
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Than you! I broke out my one from Temu! I’d like the Velcro ones the chemo sites sell, but when I add it all up, and think how I’d then need to glue or sew the other side of the strip in my hats first, I could get a whole wig for a little more with less effort. So cheap hair hats it is! Wore mine yesterday for chemo #2.
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@justsnapd8 Thanks. I am not sure what exactly I just know it's echo. Guess I will find out when I get there. I called and they said they want the PET scan done before the chemo.
I am just worried if it's OK to get a PET scan just 2 days after my port placement. I emailed my nurse navigator. She said she does not see any problem. But also told me to call the nurse navigator on my Dr.'s office. I thought she was my navigator I guess she's not anymore. LOL.
To be honest, I am not happy with the people answering calls there. I left a message for my Dr. today that I want to ask about my concern. So who knows if she will call me. I honestly am leaning on cancelling the PET scan for now.
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That sounds horrible to deal with, and I hope everything goes well and you find some helpful people soon! My imaging place is so hard to get a hold of but, chatting as much as they’d put up with from me and asking many questions each time, I managed to snag an email address of someone who is. Maybe you could ask if there’s an email address you can have for a dedicated resource?
I got my MRI the morning after port placement. I had to lay face-down, so it wasn’t very comfortable, but I got through. I know that’s way different than a PET scan, I hope you get answers soon! After poor (horrifying, to me) MRI results, I was sweating bullets leading up to and waiting for results of my PET scan. The waiting is the worst!
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@bailey.boo The hat is cute! Looks perfect for you!
@pneuma there's no reason that it shouldn't be OK to have a PET scan two days after port placement. They are made to be scanned and you will surely have a ton of scans down the road and still have the port.
I am blessed that there are two cancer centers very close to me so if I don't like the staff at one, I can easily swap over to the other one. But there are so many providers involved in our care, it's confusing. I know of two nurse navigators right off the top of my head one is for the oncology surgeon, and the other is for the oncologist. Since you've not started chemo yet, I would call the nurse navigator for the oncologist first. I'm so sorry you're having all this trouble. I have a great support system to help me navigate through this horrible experience and I would be lost without them.0 -
Hey all,
4 days out from my #1 chemo day and feeling very tired. Last night I had flu like symptoms, very achy and hot/cold. Today I feel just weak, tired and thirsty. OMG I'm so thirsty and my mouth is very dry. Not much tastes good so am drinking ginger ale, and coconut water. I've been making egg bites for breakfast and they are good, soft and easy. Mashed potatoes with bone broth is also really nice for me right now. Managed not to get constipation for the 3 days after TCHP, but today started diarrhea watch. One Imodium taken.
MY infusion went well though I had an allergic reaction to premeds - Fosaprepitant. And the Herceptin/Prejeta is given to me in an injection rather than an additional 3 hour infusion which is so great.@pneuma I'm HER2+ as well. Herceptin (which I imagine you are taking) has a possible side effect of heart issues. So you will get an echocardiogram at the beginning of treatment and every few months to verify that Herceptin has not damaged your heart. It sounds super scary on heart issues, I'm on Herceptin for the second time and things are OK heart wise so far. And it should be fine to do the echo with your port in. the same with PET scan.
@sarahjunefox hat quality - not great and very like doll hair. But I won't be close up to anyone when I take the dog out or go to the supermarket so it will work for the cost.
@ebfitzy my port area is tender still, though I really think it is because of my breast size on that side pulling the skin down. I have a rash still from the plaster they used during chemo on Monday.
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so how long are chemo sessions?? Mine starts Tuesday.
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Hi @ebfitzy, it depends on some factors. It can be as quick as a few minutes to lasting up to 8 hours depending on if you're getting an injection or an infusion.
You can read up about it a bit here:
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HI all! Hope you're all well. I'm back from Disney and Paris and it was such a brilliant trip! My hair started shedding on the second last day but no faster than it did after I had my son when it was coming out in handfuls. I'm so fixated on the hair. It's so annoying. I'm in the chair waiting for treatment 2 to start!!
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I'm starting to get anxious. Today, I'm visiting the dentist. I'm very frustrated because I wasn't aware I needed to take care of any dental issues before treatment. When I asked my Oncologist about it she didn't seem very concerned. However, when I started reading about it seems it is a pretty big deal. I believe the doctors do this all the time so they are a bit desensitized but this is my first time with breast cancer. Almost everything I am learning is from this forum, which I most grateful to you all!
DX 5/16/2024 IDC Stage11 HER2+ ER+ PR -
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@dw0330 I need to visit the dentist as well and I'm feeling a bit anxious about it too. My teeth are so sore and they're keeping me awake at night! My oncologist thought it would be fine to go in the third week after my treatment as my white blood cells will hopefully be up again.
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@sarahjunefox I went today. I explained to them my situation. They were very thorough & compassionate! I feel they went the extra mile! I'm having a tooth pulled today and afterwards will be "cleared" for treatment. I'm sorry your teeth are so sore and keeping you up at night. I hope you are able to go when your white blood cells are up. It's never fun going to a Dentist but I feel very important for us!
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and so it begins! I’m happy to have this group to really help me understand more about all of this. Hoping for the least amount of side effects while also having an understanding now of what COULD happen, but I’m staying positive and it makes me feel better that there seems to be a fix to just about everything. I hope I can still do my title abstracting (work from home.) it involves concentration and brain work so I’m slightly nervous about “chemo brain.” Anyone else work from home and still able to stay on task and do their work?
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@ebfitzy Well done on the positive attitude! I'm trying to keep that strong too. I'm working through as much of my treatment as I can. I was able to get a fully remote status until the chemo is done which I'm so grateful for. So far my SE have been very manageable, no chemo brain yet, the hair loss is the only scary one for me but when I put it in perspective, I am doing this for long term health, so a few months of baldness are a small price for ideally being cancer free!
Something I'm doing is trying to control all the bits that I can (diet, exercise, rest, getting my eyebrows done, my fab wigs) and trying to roll with the rest. it's easier some days, but I'm getting there.2 -
Hi all! I hate to join this forum because that means I am also in the club nobody ever wanted to join. Ever! I started Taxotere and Cytoxan Monday, June 3rd. They gave me a Neulasta shot the next day, which caused me severe bone pain about a day later and lasted for three excruciating days. Nothing to be done but take lots of ibuprofen and move a heating pad all around my body to help relieve the pain. I also had a reaction to all the steroids in the form of constant heart palpitations, so I had to stop taking the dexamethasone the day after chemo. I’ve never felt exhaustion like this in my life. I can only seem to do minor chores like folding the laundry and then I need to lay down for an hour. Very frustrating, but I’m hoping it will get better with time. I also got a sinus infection that started the day after chemo, so I was put on antibiotics. A week later and it’s still there, but now I have slight raw throat and mild chest congestion, too. Not too bad, but definitely not helping my mood LOL! Anyway, I hope everyone is staying positive. My mantra has been “it’s only temporary” and I repeat it whenever I start to feel down.
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Regarding hair loss, to shave or not to shave, and wearing scarves/beanies… I found a great website that has a must watch video about what to expect when you’re about to lose your hair, how to safely shave it, and tips for removing the hair that is hanging on (tape roller lint remover anyone?!). I ordered the bamboo spf 50 sleep beanie in every color! They are so soft and comfortable. I also ordered a few 100% cotton scarves (28”x28”) and they’re really soft, too. The website is www.hatsscarvesandmore.com. The lady who owns the business is a hairdresser and ovarian cancer survivor. Hope that helps some of you!
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I am starting Chemo tomorrow. I am estrogen (100%) and progesterone (70%) positive, HER2-. Stage 1A, negative lymph nodes. But, grade 3 and RS is 32. I am getting TC - only two drugs - cytoxan and docetaxel. 4 infusions every 21 days. Then radiation and estrogen blockers. They tell me I likely will not need a port.
My insurance gave me the cold cap to hopefully reduce hair loss. Anyone tried this?
I have no idea what to expect. My doctor said she is going to give me Neulasta. She said fatigue, neuropathy and constipation will be the most common side effects. The nausea, vomiting and pain - she has already given me drugs.
I read the tips for what to buy, but how bad are the side effects with the cocktail I am getting?
I feel very fortunate - I am going to Duke Breast Cancer Center. They have a little store there - you get 5 free items including, wigs, hats with wigs, scarfs, port seat belt protectors, sun glasses, etc. Infusion lazyboys. They tell me my first infusion will take 5 hours. I have already started on dexamethasone today.
Would love any and all feedback
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@klyking, I believe Unite For Her sends a care package if you register for their passport program: https://uniteforher.org
As for cold capping, we do have some articles if you're interested in reading more about it (in addition to hearing experiences directly from people who have tried it out)!
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Thank you for the information. Uniteforher.org only sends boxes to women in three states. North Carolina is not one of them.
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My start date was pushed back a week. My trip to Alaska was wonderful, but I got Covid somewhere; probably on the ship! So June 19th it is.
@Love4All I've bought some things from her on Amazon, but I hadn't been to her website. That video was very informative, so thanks for sharing.
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@klyking I'm cold capping if you have any questions? I'm using the Paxman one. The first session was totally manageable, but this week the technician put it on differently and it was sore for the WHOLE session and wasn't properly touching the very top of my head so I have a big bald patch there now 😅. Make sure it's on right!!
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Sounds like you and I are in the same boat! I had the same chemo last Monday with the neulasta shot the next day. I just felt kind of tired after the infusion and was able to eat just fine when I went home. Unfortunately my body didn’t like the dexamethasone I took the day before chemo and I had wicked heart palpitations. They give you steroids the day of the infusion, too, so my heart was fluttering all over the place. They took me off the steroids and it went away in a couple days. I took Phenergan (anti nausea drug) before bed the day of the infusion, and I took zofran the next morning and afternoon to help stave off any nausea. The meds work really well, so stay ahead of the nausea as it’s easier to prevent it than it is to stop it once it starts. I basically slept the entire next day after chemo aside from going back to the hospital for the neulasta shot. I had really bad bone pain from the shot, but I’ve heard lots of people don’t, or that ibuprofen works really well to control it. It took about four days for the bone pain to subside. The exhaustion was crazy for about six days for me, but my doctor thinks I just need a lower dose next time. Everybody responds differently to the drugs, so the first round is really a crap shoot. You’ll learn what works for you and what doesn’t so that you’ll be more prepared for the next round. I’m sure you’ll do great and sounds like you’re in good hands at Duke! Best of luck tomorrow! You got this!!
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@sarahjunefox thank you that is helpful. I have the paxman as well. I am in the cosmetics industry and I do not like the conditioner that came with it - it is filled with ethoxylated ingredients and not necessarily hair healthy ingredients. I am going to try Virtue Lab's Flourish S&C and Density Booster as well. It helps to accelerate hair growth. How do you know if it is on correctly? Mine is very tight.
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@Love4All It does sound like it. I am only taking a half of dose of dexamethasone (4mg not 8mg) and only the day before and after chemo. I have afib so I am not sure how they are handling it, but they did not mention it. They have given me Ondansetron and Prochlorperazine for nausea and vomiting. I was worried about sleeplessness because I was up all night after taking dexamethasone. Did you have any other side effects? What about weight gain, swelling, appetite, loss of taste, mouth sores?
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has anyone NOT gotten the Neulasta shot? How are you feeling? I’m dreading it…
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@klyking I knew it wasn't on right because it hurt more than it did last time, and the crown of my head wasn't cold during my treatment. When I pushed down on the top of the cap I could feel the cold. I'm so annoyed that I didn't say anything to get it fixed.
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They are having me take 2mg of the dexamethasone the day before my next treatment. I guess they figured some is better than none! We’ll see how the heart palpitations go. I also couldn’t sleep while on the steroids, so I was glad to be off of them. I actually lost a couple of pounds over the last week because I had no appetite the day after chemo and my taste buds have definitely changed. I started to get my appetite back two days after chemo, but I’m only eating small amounts. Also, I am only craving things like fresh berries and fluffy scrambled eggs with toast. I’m trying to only put natural, whole foods in my body during this treatment because I figure my body is working hard enough to rid itself of the chemo. It doesn’t need more crap to purge!
About three or four days after chemo, my mouth started to feel really weird (like my gums and tongue were sandpaper), so I keep a glass of salt water with baking soda on my bathroom sink and swish with it throughout the day to stave off any mouth sores. So far so good! My mouth seems to be returning to normal now, but my taste is still off. I can only really taste sweet things. Fresh tomatoes I can taste. Salty pretzels I cannot. So weird. I’m not having my issues with swelling either. I put a rooibos teabag (it’s a caffeine free herbal tea that tastes like black tea to me) in my room temperature water and that helps me drink lots of fluids every day. Just drinking plain water sometimes makes me nauseated, so the tea helps.
I hope everything goes smoothly for you today! I’ll be thinking of you and sending good vibes! Just take it one day at a time.
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I am going to beg for them to NOT give me Neulasta next time. I think that shot is why I had such a rough week. The bone pain was awful. I’m glad I got the shot because I want to keep my immunity up, but now I know my body did not like it! I’m going to ask if there is an alternative with less chance of bone pain. I’m guessing probably not, since it’s the swelling of the bone marrow cells that caused the pain and the shot is to hyperdrive the bone marrow into action. We’ll see what he says.
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@Love4All there are three other drugs that can be used in place of Neulasta. There was a link in this string to the Koran website and the other drugs are listed
@Love4All sounds like you are getting better. I ordered Biotene kit that is supposed to really help. Eye drops and these hydration pellets that I drop in water on the golf course when it’s super hot -nuun hydration tablets I have heard that everything tastes sweet which is bad for me because I am a salt person I do not likes sweets
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Has anyone else experienced sinus issues after chemo? I have pretty bad nasal drainage year round from pollen allergies (for which I get allergy injections every two weeks), but the day after chemo I woke up with insanely dry, bloody sinuses. It seems to have turned into a sinus infection and I’ve had a raw throat and chest congestion ever since. The doctor started me on antibiotics two days after chemo and I’m on my last dose of it today, but no improvement. My voice sounds hilarious since I have so much phlegm coating my vocal cords 😂. Just another fun perk of cancer treatment I guess!
Also, having chemo in the summertime in South Carolina is the worst because it’s too hot and humid to go outside 🥵. I have fair skin and my mom had melanoma, so I’m extra scared of the sun this summer (chemo=photosensitivity)! Is anyone else having cabin fever like me? I tell my family up north that our summers are like their winters… you just have to stay indoors until the temperature gets to a livable level!
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