Starting Chemo September 2021
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Hi again Ernnelson my treatments are also 3 weeks apart - total of 6 before surgery in January (masectomy). I am Triple Positive as well. My chemo meds are Taxotere, Carboplatin, Herceptin and Perjeta. What are you meds? I am one week post Chemo Session #1 and feeling a whole lot better this morning.!!!!!
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Happy you turned the corner DebbieM! I have had a very productive and great week, feeling fine and getting out some. Looks like that will be my MO; one week exhausted and one week productive, rinse and repeat. I believe everyone is different but similar, depending on treatment.
I've got my second treatment tomorrow morning and an appointment to have my head shaved Saturday afternoon. My hair is already different, so I know my timing is right. I've been feeling around on my head hoping there aren't any weird bumps or marks and thinking I'll probably need to tan it to match my face and neck. Never in a million years would I have predicted this thought!
As far as food, Ennelson, my naturopathic oncologist said to try and eat as normal as possible but make sure to eat. I had no problem with nausea or food taste (yet anyway) so was able to keep my normal keto diet. The water thing, though!!! I had heard many say it tastes metallic or rusty but for me, it tastes really sweet like COTTON CANDY. I'm still able to drink it but really don't like it. Has anyone else experienced this?
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Well, I'm on day 7 today and it's been a bit up and down, but I'm generally functioning okay at this point. I seem to have got most of the side effects (fatigue, constipation, headache, a couple days of achiness from the lapelga injection), but generally on the milder side, except that early nausea which was intense. I've been walking every day, and yesterday even got in an 8km bike ride. I'm very grateful that I'm off work and my kids are a bit older (11 and 15), so I can take advantage of the times I'm feeling okay and then rest whenever I need to. My hat's off to those of you who are going through this with other things on your plate.
DebbieM, glad you're feeling better! I've been napping as well, for the first time in my life.
oldladyblue, I got a second opinion but it was arranged by my MO (my pathology was weird, so she wanted it rechecked at a bigger research hospital). Both my MO and the consulting MO gave me a choice between AC+T and TC but favoured AC+T marginally and it was my preference to treat aggressively. It does sound like a second opinion would you help you get some clarity. I was told AC+T is the most aggressive treatment option, and does come with some small but serious risks, so I wouldn't go into that lightly especially if you're being told chemo may not even be necessary in the first place. I'm not sure if anyone answered your earlier question, but yes, the taxol is a separate part of the treatment -- my first 4 doses will be AC and then 4 of just taxol. I don't think it's typical to run AC without the T afterwards but I could be wrong.
Emnelson, welcome to the group! That's awesome you got your head shaved ahead of time! I wish I could pull off the bald look. I'm pretty sure I'm going to look like Mr Potato Head. In terms of food, I would just say to go easy on yourself. My intention was to eat very healthy but for a couple days I really could stomach nothing but crackers and some sweet potato. The general advice to go bland was accurate for me; on day 3 I had what seemed like very plain vegetable soup but not plain enough and I was tasting it for a full day afterwards...
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Hummingbird, I just saw your post and YES to the sweet water thing! In fact I find most things taste weirdly sweet and I have a gross sickly sweet taste in my mouth in general, even after brushing my teeth. I've also been craving saltier food, which is unusual for me, but I guess helps to disguise it. Good luck tomorrow!
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Mindthief--well, good to know I'm not a weirdo. Maybe it's the AC that does that. And I agree on the salty, too. Even though I eat a keto diet, one night I woke at 3am and gobbled down a bowl of tortilla chips like I was going to die if I didn't have it!!!
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Good morning!
I lost track of this thread a bit. Lots of action to read through. I finally got the firm plan and it’s weekly taxol for 12 weeks and Herceptin every three weeks. I start next Wednesday.
I haven’t read through all the post yet but would love to hear from some other people getting weekly taxol with Herceptin every three weeks who are a bit ahead of me.
I’ll read backward too! Good luck everyone!
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Thanks for all the food tips - I have chicken soup in the freezer as someone told me homemade soup would be good! I am worried about the water tasting bad that you have mentioned - that is my primary beverage!!!
DebbieM1958 - I am not sure what my cocktail is at this moment. My oncologist, who has been great, threw a bunch of stuff at me Monday & I did not retain anything except that treatment was starting 9/17😒 Its all so overwhelming!
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I had my best day today - woke up feeling good and lots of energy, no naps needed. I even drove to the end of my street to the main road to watch a funeral procession for a fallen officer. I was out in the fresh air and sunshine for about an hour - masked and distanced from others of course. Then in the afternoon I got the runs and its been on and off all evening. Taste is still off, nothing tastes good so I havent eaten much other than the BRAT diet - toast, applesauce, banana, etc. But I will take the small victories and my friend who is months ahead of me said I will keep feeling better each day till the next Chemo treatment. That's 13 days away so I am happy about that!!! Hair is still intact and its Day 8. We'll see.... Have a good night everyone.
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Hi everyone,
This is my first post- I am late to finding this thread, but very glad I did! I started my AC+T chemo regimen on 9/2, and just had my 2nd treatment yesterday. My 2nd treatment hit me way quicker and harder than my 1st...but I'm hanging in here. Fortunately I had compazine to help. I saw some of you have naturopath/homeopath providers, and I would love to hear more about some things they recommend for natural/nonpharmacological compliments to help with side effects, especially the GI side effects. First time around I was battling constipation for the 1sr week after my infusion, followed by lots of cramping and diarrhea once I started to feel better and get my energy back.
I'm a single, working mom of a very energetic 4 year old who is a total mama's girl. That may be the hardest part of being sick and exhausted from the side effects, not being able to do all the things she wants me to do with her. I feel really bad about that. But I am very grateful to have a lot of support from family and friends, and I am very good friends and have a good coparenting relationship with her father, which helps tremendously. I am going to try to buzz my hair off soon once I am feeling up to it, because my hair started falling out quite rapidly a couple days ago. Her father and my mom are going to do it with me in solidarity, which I am very touched by.
Foods and tastes have been interesting. Like a couple of you have said, I have been craving only homemade soup- I pretty much ate only that and saltines my whole first week after treatment! I found an empty stomach really agitated my abdominal pain and nausea, so I try to have something at least small every few hours.
I've really enjoyed reading about each of you and your experiences. It is so helpful to know you have a community of people going through a similar journey as you. I look forward to continuing to follow you all on yours and provide solidarity and encouragement along the way!
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Thanks ladies for all your posts. It really does calm me down to see everyone helping each other! swimgal I am glad your surgeon and MO were on the same page! ernnelson thanks for your vote for crazy hair! I have to do something creative. Thanks for the update debbiem1958, glad you are feeling better. Did you get your port butterfly47? How are you feeling mindthief? Hope it goes well for you today spades2525 for your first treatment.
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First treatment today! It is so helpful to hear about what people are experiencing with side effects to make sure I am wrapping my head around that in advance. Mindthief- my kids are similar ages 12 and 15, and while I appreciate how self sufficient they are, emotionally this is hitting them very hard and it is more challenging to support their fears than my own most days.
I love the empowerment of shaving your head early or dying your hair bright beautiful colours. Important to take those moments of control when we can
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Spades, good luck today! I hope you have an uneventful infusion and easy recovery. I'm sorry to hear your kids are struggling emotionally as well. My son (11 year old) has been clingy like a toddler, literally just wanting to be cuddled next to me all the time. My daughter on the other hand is withdrawing, especially when I was visibly sick last week, and it worries me that she seems to be bottling up her fears. This was already going to be a tough year, transitioning back to school, and it breaks my hurt that they have to deal with this as well. Have you informed your kids' schools what's going on or sought any extra help for them?
Meleander, welcome to the group, although I'm truly sorry you have to be here, especially with such a young daughter. Are you feeling any better today?
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Question to all my new friends on the diarrhea part of things. It is my Day 9 of Chemo Cycle 1 and I still have to take Imodium every day, at least once.. In fact, I've been through a whole box of 24 Imodium since this started. Anyone else have the same issue? When does this stop or is it just part of the new regime? Very small appetite but other than that I feel so much better. Hope everyone had a good day today. Oh, also today I had my first nosebleed, that was fun (NOT). Apparently pretty normal side effect of the meds. Subsided in about 10 mins. Checked with the nurse and she said yes, mucous membranes are all affected by these meds. Only an issue if it doesnt stop
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Hi friends!! I have been reading your posts and get a lot of support from them! Got my port yesterday. The actual placement went fine! Great med staff! Last night lots of pain, bruised bad. Today painful and tired! So thankful it has time to heal before first chemo on 22nd!
I was reading about you all with kids ! I have a 28, 21,18 yr old boys and a 12 year old girl. All act differently! Even my adult children are taking it hard! Especially my 18 yr old. We are all just waiting to see how I do on with side effects of chemo. I will be doing 4 drugs for 6 sessions every 3 weeks then 2 drugs every 3 weeks for a year. This surprised me but I trust my doctors. I try to be strong for them but also vocalize it’s okay to not be okay!! I am positive but not the point of unreasonable! It’s ok to be scared, cry etc. but know that I am strong and can do this and frankly have to!! Although I really do notwant too!!! Ugh! Mon dr appt tue mammogram on right breast and wed the chair. Yay!!!0 -
I love this site - its a webcam of an uncrowded beach in Oahu - with sound. It's my happy place to go whenever I need a moment. Hope some of you will enjoy too!!! Happy Weekend
https://explore.org/livecams/hawaii/hawaii-pipelin...
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Welcome Melander! Sounds like you and I are a day apart with same treatment, I had my second AC today. My cancer center has a naturopathic oncologist, which I love. I told him water tastes super sweet, like cotton candy to me, and he prescribed Zinc to help mitigate the taste buds. 30mg once per day. He said, in many patients this brings tastes back to normal. I was also prescribed Turkey Tail (a mushroom compound) last month and have been taking religiously. All my labs were normal and WBC was out of the world high, so the Neulasta is working. I hope you are feeling ok today.
I felt fine after my infusion and am tired this evening but didn't sleep well last night, so hopefully that's it. The onco nurse said that in all likelihood, my symptoms will be exactly like the first one and that, if anything, the body starts to get used to the drugs so may even lessen over time. I love her, she is so helpful. I still hate the port; it still hurts.
Spades--good luck and let us know how you are doing. I shaved my head today since the scalp was starting to hurt and the pubes were falling out (weird chemo event). It was inevitable. When I got in the chair, my stylist's phone rang and I was surprised to see both of my sons on FaceTime also shaving their heads. None of my daughters did it, but boys love their mommies. They are special. I was originally opposed to the wig idea and was going to just rock baldness, but he had one and put it on me and it was beautiful and made me look 10 years younger, so I might change that plan.
Debbie--hope you start feeling better. Not fun and you need time to build your strength before the next round. I'll be praying for resolution.
Butterfly--hope your port situation is waaaay better than mine!!
Good luck to all and happy weekend. Get outside and connect with nature if you can. Love to all!
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Hummingbird- I didn't realize our courses were so similar! Thank you for the tips about zinc and the Turkey Tail- has the zinc helped with the taste of the water at all? I had a breast cancer dietitian recommend Liquid IV to help with hydration, but I found I can't drink it during my harder days because sweetness makes me nauseous. I was given a name for a well-liked naturopath in my area and am thinking of consulting with him to see if he has any suggestions for helping with my sensitive GI system. I teared up when I read that your boys surprised you by shaving their heads too. It feels good to have that support, that was really sweet.
I am feeling better today, thankfully. More consistent with my 1st treatment. I was able able get some sleep last night too, which was much needed. Steroid induced insomnia is the worst. Have any of you found anything to help with that? I meditate, which has always been my go-to strategy to fall back to sleep, but even that isn't cutting it.
Butterfly, I loved what you said about modeling coping for your children and showing them it is okay to not be okay sometimes. That is the best way to help them through this, showing them things are hard, and it is normal for the hard feelings to come along with it, and if you allow all the feelings instead of fighting them, you will feel better and get past them a lot quicker to the okay and even good feelings again. I am being as open and honest with my daughter as I can (in 4 year old language), to help her understand what is going on and why all these changes have been happening, and to show her it's okay to not be okay sometimes. She is doing okay. There are more meltdowns and needing me, but that was already there before the diagnosis, so it was expected while she adjusts to this new normal for a while. I've found that when I don't feel well my patience goes down the drain. It's hard.
DebbieM1958, thanks for that webcam link- that is really cool! The beach has always been my imagery happy place- when I was getting all my scans that were in tight spaces I imagined myself in the wide open beach and it got me through it really well. I'm sorry you ate having so much trouble with diarrhea. I had the same thing happen to me around days 8-11 after my first round. At first it was fighting constipation, then it switched over to fighting diarrhea after I was feeling better and getting my energy back, even though I'd stopped the constipation meds. Almost like chemo-induced IBS. I found that when I pushed myself too hard physically it happened more too. It did go away around day 11 or 12. I hope it has already begun to subside. What does your oncologist say?
Now that my hair is really falling out, I've started reconsidering wigs. My first reaction was that I didn't want to do wigs, it didn't feel like "me." I've never been a huge hair person anyway, but the more I have begun looking for scarves and hats it's become a little overwhelming...what have you all been planning for head covering, if anything? Any websites with good scarf tying tutorials or cute scarves, hats, or wigs you've found? I have no idea what I'm doing here lol
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Morning! Had my 1st round yesterday (carbo/taxotere/perjeta/kanjinti) it went mostly OK- had slight reaction to the taxotere & they had to give me benadryl. I felt like I was on fire and I couldn't catch my breath. Came home and passed out for a couple hours & felt OK at first but started to feel blah as the night went on. Today has been OK but its early still🙂. I hope everyone has a great day!
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Ernnelson Good for you getting through Round 1. I had a similar reaction to the Taxotere and they had to give me benadryl as well - felt like I had a giant tickle in my throat and kept coughing. I am also on those same meds so lets compare notes as we go along - a 6 cycle regime, every 3 weeks. Now they are going to give Benadryl ahead of that med on my 2nd treatment. Hope your upcoming days are good - make sure to drink drink drink. Happy Saturday to all!!!!
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Melander- taking the zinc this morning for the first time becuase it has to be taken with the biggest meal. I'll keep you posted.They said I was very hydrated after bloodwork so am drinking the "cotton candy" water anyway. I got some alkaline water jugs at the store and that seems a little less so. My biggest suggestion for sleep is THC. I wasn't sure I wanted to go that route, but it really has helped with sleep. The naturopath tried melatonin a couple weeks before starting chemo but that has the opposite effect on me and I was wired. Other things he has me on are: Vitamin D, B-complex, multi vitamin, turkey tail, zinc, and if necessary, ginger root for nausea (haven't needed it). He took me OFF collagen and zeolite heavy metal detox just for when on chemo.
And for wigs, I felt the same until last night and had one on. I'm checking with the insurance company today to see if they will cover one. Just wonder how glasses work with the wigs because they are a bit uncomfortable with a hat that it like a skull cap.
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How is everyone handling having visitors over? I have had my adult kids and 2 year old grandson over only in the back garden from a distance with masks. It's definitely better than nothing. If they come into the house for anything we spray door knobs etc with Lysol after they leave. Better safe than sorry I guess.
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Hummingbird- that was a beautiful thing your boys did! You raised some good ones for sure!!!!
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Melander8117 - I am feeling much better today - phew - no runs today so far and up until today I had been running there at least 5 times. I ate a normal breakfast. Fingers crossed for a much better day and the same for everyone here. Glad you enjoyed the beach webcam - I absolutely love it. We should have been travelling to Kauai in December but obviously that won't happen now. Hoping for next year December. Things to look forward to. I have a hat thing with hair extensions coming next week - it looks pretty OK, not quite my color but we'll see. So far on Day 10 I still have all my hair, although I think the nose hair must be going and who knows (or really cares) about the pubes..... hahaha.....gotta laugh at some of this stuff, right?
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mindthief- I did notify my son's home room teacher so that she could keep an eye out for how he was doing at school in case he’s presenting differently there than he is at home. You being one week ahead of me is so helpful!
Welcome to this group Melander - although I am also sorry that you find yourself here.
Hummingbird thank you for your update on your second treatment. It bring tears to my eyes that your sons did that for you. I am also glad that your WB count and hydrated levels are good!
My first AC treatment yesterday went ok. But when I got home I thought I got hit by a truck. I literally could not stay awake I was so exhausted. Today I am just tired not exhausted so that’s better. Slightly queasy.. but able to eat small amounts. I got my steroid injection today so I’ll soon see how I react to that. My head shave appointment is on the 24th but I do have a wig and scarf and lots of cozy hats at the ready. I don’t think I’ll be able to rock the shaved head look! I’m anxious for that appointment
Ernnelson- so glad you are done your first round! I hope you feel ok.
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Spades2525, glad you are feeling better today. The exhaustion and fatigue are so real, it is crazy. I hope it passes quickly. I will say, I am really grateful for the additional nausea meds my oncologist prescribed. They have been really helpful after round 2. Do you have anything at the ready to help with it?
DebbieM- so glad you are feeling better!! And ha!! My thoughts exactly about the pubes! And I'm sorry to hear about your missed trip. I was supposed to be on a trip this weekend to see friends who live across the country. It's a bummer, but you are right- something to look forward to after this is all over. And we will appreciate it even more I bet. As for visitors, I am wearing a mask around anyone visiting from outside my "pod," and wiping things down afterward too. They have been respectful and gladly wear masks thelselves as well. I haven't had many of those though. I agree, much better to be overly cautious. My daughter started preschool this month, and although everyone wears masks in her class it still makes me really nervous.
Hummingbird, thanks for the tip on THC for sleep- I do have edibles on standby that a friend gifted me (it's legal recreationally here in Michigan), but it hadn't dawned on me to try it for sleep. I will try that tonight for sure. And thanks for the tips on the other supplements!
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I can’t remember if I said I got the port or not. It was the day before yesterday. Dang it hurts!!! Bruised bad! Better now but the 1st night alternating Tylenol and ibuprofen did nothing. Finally pulled put an old RX of hydro codon that helped. I dread them sticking a needle in it. I dread all of this. Sorry feeling pretty negative right now! I am thankful to hear all of your treatment experiences! It helps me feel a little more prepared. I feel like I am going to be a basket case my first treatment on Wed. Plus I have to get mammogram on my right side where they just put a port in ….hopefully by Tue that will be better! 😑
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Butterfly47, this is the numbing cream I've used since I started my infusions. I apply it 60-90 minutes prior to therm accessing my port and I never feel anything. I cover it with Saran Wrap until I get to the hospital. Be sure to get something. No need to have that discomfort.
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Hi Butterfly47, I felt the same way as you after the port placement - I was terrified about them poking it. I had mine put in a week before my first chemo. But guess what - even though the area itself was still tender I felt NOTHING when they poked me. The nurse had this cold spray thing she put on ahead of the poke and it was a complete non-event. Ask your nurse to do the same or some numbing cream I have heard some use. Don't stress, it will be fine
And re. the mammogram, they will be very aware of it and take extra care, I am sure. I do understand your feelings though. I nearly had a meltdown before my first treatment but the nurse was so sweet and the fact that the port poke was nothing made things so much better. Just remember, after you've had your first treatment you can start counting down to the last one!!!!!! I have a physical countdown chart in my kitchen (even though I've only done one so far!!!!). Hang in there...0 -
Butterfly, I feel your pain. I got mine Wednesday and it hurt like hell. But I realized today that it was much, much better. Barely notice it now unless I accidentally bump it. Hopefully your soreness is better by tomorrow. I also second what swimgal and Debbie say- numbing agents do wonders. My oncologist prescribed the same lidocaine cream that swimgal has- highly recommend!
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This change in taste is real......and not fun. I am anxious to see if the Zinc supplement works Hummingbird47. I just can't really stomach the food with no taste and just texture. So I've eaten very little since the treatment but trying to make sure that what I do eat is at least a little bit healthy. Ugh..... and my husband is such a good cook but nothing tastes good...
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