Starting Chemo April 2024 Support Thread
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Oh my goodness! I got chills reading your post. I am so glad that you were able to turn it over to God! I give Him all the glory for my "sanity" while stepping through this journey. And so happy you found this group. It has been a lifesaver for me! Thank you for your kind words as well!!
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You need to stay with us in April 😉 Regarding the port, my biggest issue was sleeping the first couple of weeks. I'm a side sleeper and you should really sleep on your back especially at first. I used a wedge pillow and that helped me sleep better. As far as shirts, any semi low cut or V neck will do. Once they put the needle in, they tape the tubes to your shirt. Mine is placed right side about an inch above my boob, and about an 1 1/2 inches from the center of my chest. The placement wasn't that bad! Hoping all goes well Friday!!
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Thank you! I no longer have a wedge pillow, but I’ll definitely need one for GERD. Now I have more justification!
And I’d love to stay with the group. I should have a chemo start date before the end of today. I’m also going to try to start attending the T/Th Zoom calls, as long as my work schedule doesn’t overlap. I’m going to try to protect that time on my calendar after this week!3 -
@sarahjunefox Chemo feels much harder to me too, although after one round I am doing better than I expected and hope you will too. The day of treatment was very long, especially with cold capping. At my center, there is a medical assistant who helped prep my hair, put the cap on, and hooked me up to the machine. I took some ibuprofen in advance since I am prone to headaches. The first 30 minutes is most uncomfortable as your head cools. After that it gets a little easier. They brought me warm blankets and tea to help me feel warmer.
Cold capping adds a lot of time to the process. You wear the cap during the whole treatment (normally two hours, but I had an allergic reaction to the taxotere which added a full hour to the treatment) and then for an additional three hours after treatment ends. The best thing I could do was put on earphones over the cap and listen to an audiobook or music while trying to zone out. There is a different version of cold capping where you're not hooked up to a machine and you can go home for the post treatment part, but for Dignicap it meant an extra three hours in the chair. It made for a long, hard day, but it felt so good when I could finally take the cap off and warm up.
If you want the easiest process possible, this may not be the way to go. But like everything else in this journey, it is manageable and we do what we have to do. For me, it is very meaningful to try to keep my hair in the short term and minimize the risk of long term hair loss which can happen with taxotere. I'm hoping the second time is easier now that I know what to expect!
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@lbn2222 Thanks so much! I'm getting nowhere reading google articles about what to expect, it's so amazing to hear from someone who is actually going through it! I have an education session soon so I can find out which cold cap system I would actually use. I have SO many questions. 💕
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Cold capping isnt generally paid for by insurance either. I’m barely scraping by as it is, so I am skipping it. Plus it took my insurance forever to even approve my chemo treatments, a 3 step approval.
PS @sarahjunefox, dont read google😃😉 Join FB groups for your type of cancer. I’m in 1 specifically for Triple Positive BC cancer and 2 specific to my state of Ohio.
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Thats about where my port is as well. They had zero issues accessing it. Only concern was redness around it which I contribue to my sensitive skin. Also told him that I had picked off the derma bond glue that was still covering the site so they didn’t have to do anything with that yesterday so that it’s probably what irritated the skin and made it red however they still went and grabbed my oncologist to a fluke happened to be at the cancer center yesterday because normally her office hours are Tuesdays and Fridays. So she comes in and looks at my porch. She goes. Oh look it’s my problem child ha ha ha lol I think she meant that in a fun way because how long it took to process my chemotherapy approval.
tomorrow I have to go back in and get my Neulasta shot because my insurance does not cover the at home injection of that medicine
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wear a v-neck T. Makes it easier for them to access your port. They will then tape the IV tubing to your shirt. I was able to get up & use the bathroom with ease & I did 3 times. I pre-hydrated myself on Tuesday. So obviously that worked LOL. I cant drink plain water so I was drinking Powerade Zero.
First chemo went well yesterday. Its post chemo day 1 & so far so good!2 -
@kggenx don't read google is GREAT advice.
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Thank you for the tips! I got roped into joining a “not a MMM!” club a few months back 😄 So I have a wide assortment of supposedly junk-free drink powders coming my way. Maybe I’ll keep that membership around a bit after all.
I’m so glad to hear you’re feeling good so far and hope it stays exactly that way for you! 💕
Editing to ask, can anyone speak to this? Read it on Pinterest: “Paint Your Nails Before Chemo - Chemotherapy damages all rapidly-dividing cells, not just the cancerous ones. Thus, your nails, skin, and hair cells will likely be damaged in the process. So, one trick is to paint your nails (with a safe nail polish) before treatment sessions to help preserve them. Also, I kept my nails painted throughout treatment and was able to avoid any of them turning black and falling off. This is not guaranteed but is worth a try.”1 -
@sarahjunefox please let me know if you have specific questions I can try to answer.
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@sonia007 HI! I'm new here too! Just did TC as well round 1 last Thursday so today is day 8?? I'm not liking it at all! But i think being on here will help. I have bad anxiety so it's been really rough. I wish you luck with everything!
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Welcome!
How have your side effects been? I had my first round of chemo yesterday today I felt OK safe for some minor headaches. I am expecting the side effects to kick in on Saturday, which would be day 3 post-chemo
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@kggenx Hello! I hope you have minimal side effects! I was good till day 3, then I was soo very tired, had trouble just moving to go to the bathroom! And headache every day, today day 8, finally some relief from my head. Constipation but stool softners took care of that. I think from the Zofran? Not much nausea thank God! Mouth is burning kind of like thrush? I have a rx for magic mouthwash but they need to compound it and ship it I guess. No pain from Neulesta. Really only a ton of fatigue but thats way better today! Eating better too. I lost 5 pounds. My blood work was great yesterday! Already had times where I said I was done, lol. I think the anxiety I have makes it so much worse! Keep drinking! I needed fluids yesterday. Bad me not pounding the water. Oh, hot flashes suck but they pass quickly. You got this honey! We can be chemo buddies!
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Sounds good!! Have a good night!
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I finally got a start date. May 20th, I guess I should join the may group!
My questions are:
1. What do I need to think about doing more of in the next two weeks? Stop doing?
2. How much time should I be expecting to take off work? (I really want to keep working throughout)
3. I know we are meant to keep exercising, is the idea of running throughout my treatment completely daft?
4. Do I need cold gloves? Cold socks? or are they part of the cold capping thing?
5. What should I eat, not eat?
6. I have a 5 year old son. Will I get so sick looking that I'll scare him? (this is my greatest fear)
@lbn2222 I don't by ANY means expect you to answer any of these, these are just the things rattling around in my noodle at the mo.1 -
hi @sarahjunefox I’m ltentatively starting chemo on Tues, 5/7. I took the fastest appt where I could get to get started, but I let them know I’d like the other rounds to happen on Thursdays so I could potentially still work during the week and still good rest on the weekends. They were more than happy to accommodate that.
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Dont leave us! I was supposed to start in April but due to insurance snafu, I didn’t actually start until this past Wednesday, May 1. I don’t plan on leaving our little group here so please stay!
If you were exercising before you start treatment, I would recommend continuing to do so. I have had people recommend the ice socks and caps to me, but I don’t know if I could handle that because I am a generally cold person and even though I had my big fleece blanket at the cancer center the other day I still went through 6 warm blankets.Unfortunately, for me, I already have neuropathy in my left leg leg due to my lumbar spine issues. Today I’m having some minor bodyaches and my lower back. I don’t know if that’s just from my back issues or if it’s from the chemo. Tomorrow is day three post chemo so I am curious to find out how and which side effects I develop.
eat what tastes good to you because also from what I’ve read the chemo will affect your taste buds. The steroids have made me hungry, but I’ve been trying to eat better food. Although last night at 9 PM, I was craving a hotdog so I sent my husband to the store to get some hotdog buns. And then I watched Grey’s Anatomy.❤️
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Anybody have extremely dry skin? Or Thrush? Just had Subway and it was awful. And how about vision trouble? I'm not seeing very sharply anymore. I'm 9 days post first TC treatment. Hope everyone is having a good day and SE free!
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And I'm SUPER depressed. Any encouraging words? I just lay on the couch and cry lately. Nothing is fun anymore 😕
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@chickenlovva have you tried rinsing your mouth a few times a day with a mix of water, salt and baking soda (1 quart:1 tsp:1tsp)? I am doing TC and at about day 7, my mouth felt furry and things were tasting pretty bad. I made a fresh batch of that mouth rinse and started doing it more regularly — 3-4 times per day — and it cleared up. Hope this might help you!
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I don’t know breast cancer treatment just yet, but I remember my thyroid cancer days— looking at a basket of laundry and just bawling my eyes out because I just couldn’t mentally or physically fathom even the idea of having to do it. It took me so long to feel like me again, but I did finally!
You will feel like you again. Make some goals for when this is over, and keep that promise to yourself to do it 💕
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@sarahjunefox going to take a crack at your questions (at least the ones where I can!):
1. What do I need to think about doing more of in the next two weeks? Stop doing?
I drank A LOT of water in the days before treatment started. Otherwise didn't change too much.
2. How much time should I be expecting to take off work? (I really want to keep working throughout)For my first round of TC, I took off the day of treatment (Friday). I was back to work Monday, although I didn't work at my usual intensity or hours. I was tired and a little foggy through Wednesday and then felt much more like myself on Thursday. I work remotely and my team and colleagues are incredibly supportive, so I was able to take it easy as needed. My doctor said that many of her patients who want to work schedule treatment on Fridays so that's what I did.
3. I know we are meant to keep exercising, is the idea of running throughout my treatment completely daft?I am not a runner, but I've been walking every day since my treatment. We live in SF so walking generally involves a lot of hills. Think you should do what feels comfortable for you. My doctor said continuing exercise would help with fatigue.
4. Do I need cold gloves? Cold socks? or are they part of the cold capping thing?I haven't done cold gloves or socks. It felt like too much on top of cold capping and everything else.
5. What should I eat, not eat?I would eat whatever sounds appetizing. I'm vegan and definitely preferred plainer and non-greasy foods for the first couple of days.
6. I have a 5 year old son. Will I get so sick looking that I'll scare him? (this is my greatest fear)I hope you won't. So far, people are telling me I look fine. Hoping that cold capping helps. My son is 15 and I don't want to scare him either.
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@bailey.boo thank you so much. I appreciate you and I will. Hugs to you
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@lbn2222 thank you so much. I will definitely try it!
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Port insertion went very well yesterday. Then I woke up with an angry, hot pink, bumpy, oozy, itchy, burning rash from my shoulder to under my boob. Looks like it was just the tape or adhesive, not the port or stitches.😮💨 My oncologist is just as fabulous on call on weekends as in-person ❤️ She joined in on my call with the nurse practitioner, walked me through gingerly removing the bandaging, etc. I have always had super sensitive skin. Popped a monteklast, rubbed some benedryl cream around the sites, and I have antibiotics at the pharmacy if it doesn’t clear up in 24 hrs.
Anyone else with skin that’s a delicate little flower? What other fun times do I need to potentially know about concerning chemo, surgery, radiation, anything had experience with?
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@chickenlovva I am so sorry you are sad and having a hard time. I think all of our journey's will have ups and downs for sure. For me, the times I let my faith dim, just allowing myself to cry and get past that moment helped. After a good cry, I refocused on my faith in God and felt so much better. I didn't beat myself up over the down time.
Regarding mouth issues. I'm on TCHP and the week after chemo, my mouth was dry and sensitive. I made the mistake of eating crackers and it really caused havoc in my mouth. Ended up with blisters on the inside of the area around upper and lower lips. My tongue felt like it was on fire for a few days too. My onc gave me magic mouthwash and that stuff is amazing. Cleared it up in two days! For thrush there is another med they can give you so don't hesitate to ask your oncologist. And as lbn22 mentioned, use that recipe religiously the first week after chemo. I noticed my mouth became less dry after about a week. I'm two weeks past and have my second next Thursday. So I'm a newbie too LOL.
Someone talked about taste and my oncologists listed Lactoferrin (ordered from Amazon) for "metal mouth". I've taken that daily since chemo day and so far, just had a couple of days where I seemed to not be able to taste well. Kinda like when you have a cold sometimes. I'm not sure if it was chemo or seasonal allergies because I had a few days where pollen was super bad here and my voice was even hoarse. (common for me in the spring)
I too had foggy brain and felt like I was moving in slow motion. Almost like I was looking through someone else's eyes for a few days. It was worse day 2-5 for me. I almost felt like I had a buzz from alcohol a day or two.
I'm still needing ideas for lotion for my scalp. I'm shedding like crazy and will be shaving my head tomorrow. I know my scalp is sensitive and hope to have something to help with that. I didn't buy the cold capping stuff but did for hands and feet. Kinda regretting not doing that now. I just read how it doesn't always work and chose not to.
I hope this helps and glad you joined us!!!
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That would be me! I have extremely sensitive skin. When I had my first chemo last Wednesday, the nurses were hesitant about using the port because of the redness around the insertion site and I told them well that’s because I picked off the derma bond glue that was still covering it so y’all wouldn’t have to deal with that. It’s not infected. I’m not running a fever so my oncologist just happened to be there that day and she said yeah it was fine. It’s just minor skin irritation.
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@grammie2 thank you so much. I do feel like I lost my faith a bit again. Letting in too much darkness. Your words have encouraged me I too will turn back to my faith and try to give it to God. I have a prescription for magic mouthwash with nystatin but it's on back order I guess but will definitely be making that stuff you guys mentioned! Thank you again honey. Hugs to you
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Hi everyone! I hope everyone had a good weekend! Getting ready for #2 this Thursday. Shaved the head over the weekend. Couldn't take the shedding any longer. Feel super weird with my wig. I just can't do the bald head yet. Praying you all will have a good week!!
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