Starting chemo November 2020
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Good Morning! I haven't posted in awhile. I have been feeling really good the past week. My first chemo was 10/4 and 10/6 late evening I started to hurt and it continued for about a week so about 9 days after chemo. I did Dignity cold capping and so far so good. It is about 16 days out and I see a few extra strands of hair falling out but nothing too bad.
Magpie - same here with my mouth. I never got mouth sores but nothing tasted good including anything to drink. I finally could only stomach cold stuff and crushed ice. I even chipped a tooth
on the ice. Now I can drink hot coffee and tea again and food tastes better but still not normal but at least I can eat again. I used biotene toothpaste, mouthwsh and these kind lozenges for dry mouth that I liked because I can put them in my mouth at night and they just dissolve - no choking. - OraCoat XyliMelts Dry Mouth Relief Moisturizing Oral Adhering Discs Mild Mint with Xylitol, for Dry Mouth, Stimulates Saliva, Non-Acidic, Day and Night Use,Pat - not sure if I welcomed you - glad to have you I heard it falls out all over - we shall see.
Wordgirl - I went back and forth about going bald or trying the cold capping I had lump sum from my critical care insurance so I thought I would try the cold capping I did not want to go flat but now I am who cares. Whatever works for you. It doesn't define me. I have trouble with constipation only during anesthesia or chemo it appears so I have to stay on it as well. I only had diarrhea twice in one day and imodium fixed that.
Sharon0706 - my first chemo went so well and I was so nervous The cold capping didn't bother me at all. I let my hair go gray too during COVID but it is just streaked for now. I am taking Claritin every morning every day since I had a bad reaction to the Neulasta - severe bone pain. I did take Claritin the day of chemo and the days after but it didn't seem to help. I talk to my oncologist this Tuesday 11/24 and see if she has any other ideas.
I tried heating pad for the pain and it helped alot. I have muscle relaxer because of my implant expander but I didn't even think of using them. I will ask oncologist if I can. My expander is up to 550 ccs and it holds 600 ccs but can be overfilled. I go today for my maybe last fill of 100 ccs. Not sure. I am a big girl (fat) so she thinks a 700-800 silicone implant will work for me.
JoW888 - Good luck with your chemo next week. My chemo day was a breeze. I did ice my feet the whole time and the ice packs didn't melt. The hands I kept taking my hands out to type on my phone
but I am going to keep trying with them. Etincelle82… how are you doing? We started the same day and cold capped. I haven't lost much hair yet just a few extra strands. I had a few more days of pain but similar to your situation.
renbird - hope your chemo went well yesterday - check in when you can.
Sorry if I missed anyone but I need to leave for the plastic surgery.
Let's keep this thread alive - it really helps to hear from others going through it too. And update your profile on the top right corner - click on the person and down area and then click on diagnoses and treatments. It helps others to know what you are doing instead of asking you or having to look back at your posts.
Have a great day!
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Hi Everyone,
Had my first chemo of TC this morning. I was suppose to have it this Monday but they couldn't fit me in due to the short week. Glad to say that it went well. They started me off with saline and then Zofran and steriods. I had the Cytoxan first and was told I didn't have to ice my hands or feet. Was told to watch for sinus pressure and/or headache which I didn't experience. They said if I did, they would slow the drip from 30 mins to 1 hour. The Texotere came next and I did use the cold therapy mitts and socks. It lasted 1 hour. I felt this was the hardest part, not so much on my feet as they just felt like wearing real cold ski boots but my hands couldn't take it. I had to take them out for a minute or two and then slip them back in. All in all, it took 3 hours.
I feel like I can breathe again for the rest of today at least. The last 2 days were tough. Had my port placement on Wednesday and was scared to do a full shower so did a half shower. Had the go ahead for a full shower so that is what I'm doing today! Crazy how we take certain things for granted until faced with situations like this. Yesterday was challenging trying to wrap things up at work since the short notice came that I was starting chemo today. Also had to attend a chemo briefing, get 2 prescriptions filled and stock up on grocery. I was exhausted when I got home!
I asked about taking Claritin and was told I don't have to for now as I'm not getting the Neulasta shot. I also asked whether the store brand version of Claritin is acceptable just in case I have to get it in the future and they said yes. The active ingredient is Loratidine. It's quite a price difference here.
I was going to share the links for the cold therapy mitts and socks I bought from Amazon but it's not allowing me to share them. They lasted the full 3 hours. If anyone is interested, I'd be glad to message you the links.
Hi Marie914 - thanks for keeping the thread rolling and sharing your experiences. All the best!!
Y'all have a great day and weekend!!
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Welcome to the group JoW888. I am new here too had my first chemo last week. So far I have had a few annoying side effects but nothing horrible.
Question for the group:
I have been having a lot of trouble with muscle cramps and spasms now in my feet and hands. Is anyone else having this problem? Could that be from the chemo drugs? Which one? I am taking cytosine and taxotere. Did the cold therapy mitts and hands help? Where do I get them? How do I use them? Just during the taxotere infusion or the whole time? Do you use them after You gethome too?
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I got cramps too. I either thought I was dehydrated or the neulasta. I used the cold booties and mitts and I still got the cramps. I used heating pad too
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Hi Marie 914, Thanks for the reply. Are you also getting taxotere? I looked it up and pain and swelling of the hands and feet are listed as a side effect. Doesn't mention muscle cramps but mine sure hurt. Did you ice just during the taxotere infusio or during all of it? Which seems to help you the most now, heat or cold? My hands and feet feel sore and bruised. Very annoying and I have only had one course. 3 more to go and worried it will get worse.
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I am getting taxotere and cytoxan too. You can see by my signature line. I iced my feet during all of it and my hands through most. I don’t have any pain now. It started late day 3 which day of chemo is day 1. And it got better each day and gone completely by day 10. I used heat mostly. All I could drink was cold stuff and crushed ice for a few days.
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Thank you for the reply Marie914.
My hand and foot cramping and pain started yesterday which is day 8 and continues to get worse. I was encouraged by your success and found icing hand mitts and foot socks with gel inserts to freeze on Amazon. They will be here Monday. Hurray for Amazon! Is that what you used? How long did they stay cold? Did you ice again after getting home? Defiantly wearing them for my second treatment the day before my birthday December 2nd.Anyone else have some wisdom to impart? Suggestions
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Hi all! I'm from the September 2019 board and I finished my TC chemo about a year ago. I thought I'd try to help out with questions/concerns a couple of you have.
Marie914 - You were asking about dosing of taxotere and cytoxan and why it seemed like you were getting such a high dose. The numbers you provided for common starting doses are measured in mg/m2. The "m2" is meters squared and it refers to a measurement of your body surface area. They do a calculation to determine your body surface area, then multiply that number by the commons starting dose. When I plugged my weight and height in to the calculator, I got 1.77 for my body surface area, so it would be 1.77 x 75 mg/m2 = 132.75 for my taxotere dose, for example. If you are taller and/or heavier, then you get a higher dose.
Renbird - Glad you are icing your hands and feet. Neuropathy sucks, and it's a small thing you can do to give yourself a better chance at minimizing neuropathy. My fingers, hands, feet and toes feel 99% normal now, one year out, except for one little patch on the side of my right foot that tingles or burns from time to time. It's a very small spot, so it mostly feels like an annoyance, but I'm thankful the rest of me is okay. I was obsessive about icing my hands and feet. I figured I might as well try it, and I'm glad I did, just in case it really did help.
Puncapher - I had some twitchy muscles and charlie horses, and my legs swelled for a few days after each infusion, too. The thing that helped the most was to stay hydrated. The twitches never fully stopped until after I was done with chemo, though. Icing your hands and feet is mainly done to prevent neuropathy, which can make your hands and/or feet permanently numb and/or painful. The icing should be started at least 15-20 minutes before your taxotere or taxol infusion, and continue about 15-20 minutes after the infusion is done. You don't need to do it during any others - it's just for the taxane based chemo drugs. I brought a hand-carried cooler full of ice and had two sets of the ice packs. I switched out the packs halfway through my infusion so that I was keeping my hands and feet super cold.
Hair falling out - I think most people on TC experience it around Day 17-20 after the first infusion. I cold capped for the first 2 rounds, and then my onc wouldn't let me continue because I had a rash on my head, so I started losing my hair just before my last infusion. My husband shaved my head for me. I was not happy to be bald, but it felt great after dealing with hair coming out all over the shower and pillow. Wigs were too hot for me, so I just wore caps. Oh, and the first place I lost hair was down under! Pubic hair went first, then the rest followed.
For those concerned about nausea - from doing lots of research here, it seems that more people get nauseous on the AC-T regimen than the TC regimen....but, your oncologist can and will prescribe some amazing meds to get it under control, so don't be afraid to ask if they haven't given it to you already. Even though I was on TC, my onc prescribed anti-nausea meds for me. I took some at my infusion and then had another type on hand, just in case. I never used them, thankfully.
I'll keep checking back in from time to time. I got so much help here when I was going through everything, I'm glad to give back.
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Wow
LMS458412
Lots of good info there! Did you ice your feet and hands at home as well or just during the infusion?
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Thank you Renbird for your words of encouragement. I got my port put in yesterday and start chemo on Tuesday November 24th. I've been feeling pretty miserable since I left the hospital. My port has been extremely uncomfortable since the freezing wore off, not even tylenol ultra is helping. What makes matters worse is my nose hasn't stopped running since I left the hospital. I plan on calling someone as soon as I finish this post. Lol. Fingers crossed nothing delays my treatments, I just want to get it all behind me and move on with my life.
I saw my PS on Wednesday for a fill and thankfully he said I could still do my exchange while on herceptin. I was worried I'd have to wait till all treatment was over.
Take care everyone!
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Puncapher - Ice just during the taxotere infusion. If your cramps and spasms are really bad, I suggest talking to your oncologist or his/her nurse. But, definitely drink lots of liquids to clear the chemo drugs out of your body, whatever you can stand. I did water with a splash of lemonade and lots of soups.
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thank you LMS458412. I will do that! I really appreciate your advice.
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Hi All,
I saw my doctor a few days ago and she’s fine with cutting my steroids in half to 4mg in morning and 4 mg in late afternoon. She said everyone reacts differently to the steroids, with mine taking me on a rage/ depression for almost a week after chemo.
I am cold capping with DigniCap and had no trouble with it. I took 2 Advil a half hour before using it, and had only a slight headache after. I have a lot of hair on my head and it’s naturally very wavy. I had my first chemo on November 4, and November 18, I’ve started to shed some hair. On the DigniCap website, it states that people with my type of hair will shed earlier since it’s harder for the cold cap to cool thick hair which insulated the skull. Hoping that I maintain most of my hair after my last treatment on January 6.
I’ve noticed how dry my skin is, and shower everyday with Aveeno skin relief for dry skin body wash, followed by Aveeno moisturizer. For my face, I’m using Olivella moisturizing oil then on top of that Lindi face moisturizer. It still feels tight but the best thing I’ve found so far. They are both available on Amazon.
I used the booties from Amazon and bought mittens for icing. The booties were okay, but the mittens were too intense and I started to feel like I was getting frostbite, so for next time I might wear thin cotton gloves under the mittens and see if that helps.
My next chemo is November 25, the day before Thanksgiving, and go to get the shot on Thanksgiving. Luckily I didn’t have too many issues with the shot. Had a back ache a bit, but took Aleve and I was fine. I’m taking Claritin a week before I get the shot now just in case, and Claritin really has no side effects.
Hang in there everyone
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Happy Saturday? I'm looking back at my post from earlier in the week and it's hard to believe I was feeling so positive. Needless to say, the rest of the week hasn't been so great. I'm on the TCHP combo for HER2+ and I've had nonstop severe nausea and diarrhea for several days. Very little has helped and I feel housebound because I don't want to get sick while taking a walk or doing an errand. Plus, of course, I'm more cautious than ever about Covid.
Chemo started on Monday, so this is day 6 and I'm hoping this situation will improve in the next couple of days. Hard to keep my spirits up and I've had some pretty low moments, especially early Thursday morning when I was vomiting and having diarrhea...at the same time! Sorry for the TMI but it was a low point. Tried to breathe through it and remind myself to stay calm but it's been rough. I have medical marijuana card but haven't been to the dispensary yet, so I think that will be next on the agenda. Neither Zofran or Compazine or any of the pharma meds for nausea have helped at all. I'm going to get acupuncture on Wednesday and I'm hoping that some Eastern/natural remedies will be more effective than the Rx or OTC meds. In my case, I'm nearly certain it's the Perjeta (the targeted therapy that accompanies Herceptin) is the culprit for the lower GI issues. I'm going to ask the doctor if we can skip it on the next cycle to see my situation improves. According to the research, it only improves odds by 1 or 2%, so I'm willing to nix it if it's the thing that's causing the most problems.
I haven't had any issues with my hands or feet from the Taxotere but I'll be on the lookout for that. Seems like this is a primary problem for many of you.
My hair is currently very short and we're going to do a pre-Thanksgiving head shave. It will be be a family affair, I think. I have a few warm hats and scarves to get me through the Philly winter.
Be well. --Ellen
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Hi All,
Puncapher - thanks for the welcome! I bought my mitts and socks from Amazon too. I appreciate how fast they can deliver because I had such short notice of starting chemo yesterday. Hope the cold therapy will help you.
LMS458412 - thanks for sharing all that information! I will take your advice and start icing 15-20 minutes before the Texotere infusion. Yesterday, I put them on just when the infusion started. Silly question about rising with salt/baking soda solution. I've started that routine since yesterday (day 1) so that I get use to doing it. Question is, after breakfast and before bedtime, am I correct to say rinse with solution after eating and then after a while brush my teeth or the other way around?
WordGirl196 - I hope it gets better for you. I've had some low, dark moments too since I was diagnosed. I usually tell myself I'm not going there but sometimes it's just hard, especially thinking about the road ahead. Hoping for the best for all of us!
Got my hair cut super short this morning. I usually wear a bob and can't remember the last time I had real short hair but I feel liberated!... for a while at least!
Hope you all have a good day!
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@wordgirl1968 - I started the same chemo regimen in October. I had to drop Perjeta after the first round. The nausea I had was not horribly strong, but it really tore up my lower GI system, or at least it felt that way. My oncologist had no problem dropping it when I let them know the degree of distress. I wish I'd pushed harder to skip it off the top, since my digestive system has always been a weak spot for me- but at least we tried.
One thing I would pass on is that in my case, it took an entire second cycle before the lower g issues got substantially better. Round two was 75% as rough for me as round one. This third round, only about 30% as rough as round one. I think I just didn't have time to heal before the next infusion. Also, the Taxotere can be poorly tolerated by the lower GI - I'm in day nine post infusion #3, and still having cramping after I eat anything. But it's all much more controllable with Imodium and the anti-emetics. It's a big difference.
I hope you find what works best for you to relieve those symptoms.
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AbbyRoads3, and WordGirl 1968
I’m sorry to hear you have been having such awful GI issues. I have been dealing with Irritable bowel syndrome for years and when I get those horrible stomach cramps I take a medicine called Bentyl and it works really well! Maybe your doc will prescribe it for you to try? I have been using it for the chemo cramps and it worked really well. Also I drink a bottle of Kombucha every day and I really notice the difference when I don’t. Immensely helpful! A real game changer. In case you are not familiar with it, it is a fermented drink with tons of helpful probiotics. You can get it at Trader Joe’s, Aldi’s, Sprouts, or any grocery store in the refrigerated section usually with or near the produce but some stores put it elsewhere. Even Target super market has it. I actually make my own with a kit from Amazon. I hope this helps. After years of dealing with IBSD I feel like an expert in dealing with diarrhea. 😉
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Good Morning!
I am feeling good and my mouth and taste feels pretty normal. There are some foods that I don't like anymore and others that I prefer. I prefer cold coffee and cold green tea but I don't like crystal light lemonade anymore and I used to live on it. Peanut butter I don't care for either.
Oh well by next weekend it will change and I will not be eating much again. Mostly soups and crackers. Next weekend I will be making some homemade soups like chicken noodle, pasta e fagioli, beef stew, etc.
I did dignicap and it is day 19. I have lost a few extra strands from my head but not much. But "other" places I am losing my hair. I have been using serum for my eyelashes which have been sparse for a few years and my eyebrows. The serum should help my eyelashes even if you aren't in chemo. I hope it helps.
puncapher - you seem to know a lot about it!
I mostly have constipation (not typically but during chemo, steroids, anesthesia) so I have to be diligent in taking that medicine before and during. Then about day 5-6 I had just a little diarrhea but it might have been caused by taking the constipation medicines. abbyrhodes - I did have that cramping and stomach pain for quite a few days after but it finally went away. How many treatments do you have in all? Hope the rest are better that way.
joWo88 - I'm not sure about the baking soda regime. I tried it but didn't feel like it was needed. I only had 1 infusion taxotere/cytocan so far. I did use biotene toothpaste and mouthwash. I also use some lozenges someone on here told me about. I have the mitts and booties from Amazon and they seem to work great. I have a long infusion 2 1/2 hours plus 1/2 hours of steroids/nausea before it starts so I start with the booties then. The mitts I wasn't as good with but so far so good. I had a pedicure and manicure yesterday and she said my nails look good for now. I am 19 days out.
wordgirl - so sorry you are having a tough time. I know days 2-7 were awful for me. I really haven't heard of many having trouble with their feet or hands from taxotere/cytoxan and my doctor/nurses said I didn't have to ice my hands or feet but I am being precautionary and it hadn't bothered me so I did it.
elledwriter - so glad that your doctor said you can reduce your steroids. That sounded like alot. I tolerate them but just get hyper, can't sleep, and pee alot when I am on them. I accidentally took one Friday night instead of a muscle relaxer for my implant fill that I had that day. I can't believe I mixed them up. I was up all night.
I have had no trouble with dignicap either. It is day 19 for me and I have lost hair other places but only a few extra strands on my head. I am holding my breath They made me change my 11/25 to 11/27 since 11/25 they are leaving at noon and with the dignicap I have to get there at 8:45 and I leave at 2:30. thanks LMS for stopping I love hearing from those that are veterans. I try to drink lots of liquids but it is hard for me - nothing tasted good. I will try a splash of something to help lemon juice I have. That explains the dosing to me - that was good since I didn't understand. I had heard most people the cytoxan is 45 minutes and my infusion was 90 minutes. My taxotere was first and was the hour that most people get.
sheriche - I hope your nose and you are better. I had pain with my port for about two weeks it started feeling better and no problems now. They have used it once for chemo and 3 times for blood work. Works good.
mitts https://www.amazon.com/Relieving-Microwavable-Free...=sr_1_3_sspa?dchild=1&keywords=hot+and+cold+hand+therapy+gloves&qid=1606057458&sr=8-3-spons&psc=1&spLa=ZW5jcnlwdGVkUXVhbGlmaWVyPUE4VElNNUJFMkFSVFEmZW5jcnlwdGVkSWQ9QTAyMDUyMDcyS1VYRDE5QVFTU1FaJmVuY3J5cHRlZEFkSWQ9QTA2NDg2NjYxM1NOVUdOM0gxTTZGJndpZGdldE5hbWU9c3BfYXRmJmFjdGlvbj1jbGlja1JlZGlyZWN0JmRvTm90TG9nQ2xpY2s9dHJ1ZQ==
booties and extra ice packs which I didn't really need to have. https://www.amazon.com/NatraCure-Cold-Therapy-Sock...=sr_1_5?dchild=1&keywords=icing+booties+for+feet+chemo&qid=1606057371&sr=8-5
https://www.amazon.com/NatraCure-Replacement-Packs...=sr_1_3?crid=3K7HMWGMN6OX4&dchild=1&keywords=natracure+replacement+gel+packs&qid=1606057437&sprefix=natracure+replacemtn%2Caps%2C162&sr=8-3
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AbbyRhodes: That is enormously validating. Thank you. I hope my doctor is as open to the idea of dropping Perjeta as yours was.
Puncapher: Yes! In the "before times" I was a big fan of kombucha but right now the thought of it makes me queasy. The thought of anything at all makes me queasy! I'll grab a bottle when I get to Trader Joe's in a few days. Also, I'm going to resume my probiotics regimen. Not sure why I ever stopped, but I sure wish I had been taking them when I started chemo. Might have avoided some of this lower GI mess.
Hope everyone has a restful day.
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will probiotics help with constipation too?
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Marie: They're generally intended to balance the gut, so presumably yes. Though it may take several weeks to get the whole effect. it's really a long-term solution rather than an immediate remedy.
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Sorry, off topic but are salads off limits while undergoing chemo?
Thanks,
Jo
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nothing is off topic. 😊
I never heard salads are off limits but for a few days after chemo they don’t appeal to me
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wordgirl1968, what probiotics do you use? I've been thinking I may need to add that. Sorry to hear of your experience....hoping it gets better. Julie
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@marie914 - glad you are having a respite and feeling well - hope the next rounds go lighter than hoped. I am 50% done the prescribed course! Three infusions down, three to go.
@puncafer - thank you for the tip! I'll definitely look into that drug/
@wordgirl1968 - I do hope your onc will concur!
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jujumartin: I use Garden of Life probiotics. You can buy them online or at Whole Foods.
JoW888: I think the reason salads are sometimes considered unadvisable during chemo is because of the bacteria in raw veg and our bodies’ decreased ability to ward off infection, especially during nadir phases when your wbc might be lower. However, if you wash your produce with vinegar/water solution, it apparently mitigates the risk. Also, if you’re taking Neulasta after each chemo round, your wbc is getting buffered so there’s less chance of infection.
Anyway, I’ve had zero appetite all week and everything is going through me like Draino. I wish I could eat anything right now, especially healthy foods.
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Well I spoke to soon about my hair. I am using Dignicap and it is day 20 and yesterday my hair started falling out. When I took a shower yesterday, I washed it and there was a lot in the drain. Today I combed it and more fell out. It isn't noticeable yet. Just hoping the dignicap will keep most of it on my head. Friday is my 2nd chemo session of taxotere/cytoxan.
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Hello all fellow chemo sufferers. I had my first TC infusion a week ago (Monday 16th) with Neulasta on Wednesday. The pain kicked in Thursday evening and I was so tired I slept 11-12 hours a night over the weekend. Only heard about Clarityn on Friday so maybe next time it will be easier if I start earlier. My taste buds have gone completely. Had a steak with chips on Saturday and both tasted like cardboard. My husband thinks he should just buy cheap cuts from now for me as it's a waste giving me fillet steak. He's probably right!
Last night I thought my heart was racing but had no way of checking. I know it can be a sign of low red blood cells. Anyone else feel faster heart beat? I got a lend of a PB monitor so I can check my pulse if it happens again.
Today, day 8, is the first one where I didn't think I could fall asleep standing up so I've hopefully turned a corner. Only 5 more to go.
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Finally some relief! After a couple of days of horrible cramping and pain in my hands and feet, the doctor gave me some muscle relaxer I never heard of before. But it worked. My hands and feet still hurt but at least my muscles are not cramping. It was hard to do anything. For example I like to sew and the pinching motion you make when you pick up a pin, my finger and my thumb would spasm and get stuck in that position and I couldn't open my hand. My icing booties and mitts came from Amazon today. I plan on using those for my next treatment which is December 2. I hope they help. Thank you for suggesting it. I had never heard of them before.
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Hello everyone,
Thank you so much for sharing your personal experiences, it is so very helpful.
May i please join your caring community? I am about to start 1st chemo on 27th Nov. Whilst i got a relatively low OncotypeDX score of 16, because 2/4 lymph nodes had cancer and due my age (39), my oncologist feels that i may still benefit from a fairly short chemo. This will be 4 sessions of Taxol. I have my prep session on Thursday. After the surgery on 16th Oct i was referred for fertility preservation and had two weeks of this treatment which concluded last Friday. Been in a lot of pain this weekend, so bad i was not able to sleep at all - i think it must be a test run for what to come with chemo.
Danni x
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