Starting chemo November 2020
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Good Morning - It is strange all the different dosing. Different doctors and we are all different patients too I guess. I am asking my oncologist for a change in dosing of chemo drugs. I am documenting here my Day 1-12. I know everyone is different.
For the first chemo cycle of Taxotere (60 min) Cytoxan (90 minutes) TC.
Tuesday 4mg of dexamethasone morning and night/ Claritin / pepcid /ibroprofen
Wednesday CHEMO DAY 10 mg dexmethasone through my IV ; 164 mg Taxotere (docetaxel) and then 1314 mg Cytoxan Claritin / pepcid /ibroprofen
Thursday 4mg of dexamethasone morning and night/ Neulasta went off in the afternoon 6 mg and then Claritin / pepcid /ibroprofen
and then continue with Claritin / pepcid /ibroprofen every day since.
Not sure why I am getting 164 taxotere where 75 is common starting dose and I am getting 1314 mg of Cytoxan instead of 600 mg .
Common Starting Doses are below:
- Docetaxel 75 mg/m2 intravenous (I.V.) infusion over 1 hour on Day 1
- Cyclophosphamide 600 mg/m2 I.V. infusion over 30 minutes on Day 1
DAY 1 Wednesday chemo day - had trouble sleeping the night before due to steroids and the night ofDAY 2 Thursday - felt hyper - trouble sleeping - mild constipation Day 1-4 and then starting up again day 6
DAY 3 Friday - felt good in morning - crashed in the afternoon - started feeling very flu-like (no nausea, but stomach felt strange and had to keep something in it)
DAY 4 AND 5 Saturday and Sunday - severe bone aches all day ; a little bit of diarrhea but handled it with 2 does of imodium.
The next week Mon-Fri Day 6-10 gradually bone aches and flu like symptoms got better but taste buds were gone and mouth was soooo dry.
Saturday and Sunday Day 11-12 felt pretty good and taste got better. Still dry mouth but better.
Hopefully Day 13-21 will feel good until I start the cycle all over with. I see my oncologist on day 21 and day 22 starts DAY 1 again.
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Hi everyone,
I hope you're having a good day! I had my first of 6 TCHP on Nov. 4. I dealt with a few side effects for days 3 - 10, but all were manageable. Yesterday, I developed a rash on my face, and it feels like I have a wind burn. Has anyone else experienced this? I keep putting gentle/sensitive moisturizer on, but hoping this is temporary! Not only ugly, but not comfortable. Has anyone else experienced this? I'm hoping it's from T or C, and not H or P since that'll mean a loooong year!
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Hello everyone!
I hope you are all doing well all things considered. My name is Amy and I had my first of 6 TCHP treatments on November 5th. My insurance company denied Neulasta, so I wasn’t given the auto-injector as planned. Honestly I felt really good and was super excited about how well I tolerated chemo. I didn’t need any anti-nausea meds and just felt a little out of it on days 4-5. Well they drew my blood on day 7 and my white counts are at 1.0 and my ANC is at 290. Oncologist put me on Cipro. I have been isolating myself since then and just hoping I bounce back quickly.
Other side effects I am experiencing that are more annoying than anything: I developed a skin rash on my chest, back, scalp, and face. It could be folliculitis due to low white counts? I’m thinking that’s the case because it’s clearing up since I started Cipro. My mouth felt like i ate something too hot and burnt my tongue. That is also improving over the last couple of days. Aside from that I feel pretty great. I’m frustrated with my insurance company because if it weren’t for the white blood/ANC levels I would feel like a chemo champ!
Looks like most of the group is on a TC regimen. Regardless, we are all in this together. I hope we can support and build each other up.
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Hi Ms Murphy-
Sorry to hear your treatment was delayed... I had the same experience. Started with a lumpectomy, needed a re-excision. They still didn't get all the DCIS, so my right breast had to go. Recovering well, 2.5 weeks after single mastectomy.
Best of luck to you... keep us posted (if you haven't already, sorry if I missed it!) -Renbird
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Hi marie914-
I had not heard this:
"...She also said that I didn't need to ice my hands and feet since this combo 4 cycles of TC doesn't cause neuropathy???? Anybody have a different experience?"Any updates? I start my chemo this Thursday 11/19/20. I plan to ice my hands and feet.
Hope things are going well. Keep us posted! -Renbird
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Just wanted to say THANK YOU for posting this info, LMS458412!
I start TC this Thursday 11/19/2020, and I plan to cold cap and ice, so your post was right on time!
Hope you continue to do better and better! Keep us posted about your neuropathy if you would. I hope it clears up soon.
XO -Renbird0 -
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Hello all! I received my first of four doses of Taxotete and Cytocan a couple of days ago. After reading about the side effects I had myself pictured throwing up in the chemo chair and dropping hair all over the place. Of course that did not happen. I’m four days out now and I’ve got a terrible metallic taste in my mouth that makes it difficult to eat or drink, but I found adding lemon juice to my water helps a lot. I’m also having awful night sweats that wake me up so I’m tired from not sleeping well. I also feel very tired, no energy at all. Also a sore burned feeling tongue. But I figure if that’s the worst I’m gonna get for now I’ll take it. So when does the hair start falling out? When does the nausea kick in? Is this completely individualized or is there a normal timeframe? I would like to hear your experiences. Not sure what to expect when.
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Hi magpie4121-
Just checking in. How are you doing? Has Neulasta (or should I say Claritin?) treated you okay so far?
I start TC this Thursday 11/19/20. : ) -Renbird
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Welcome Puncapher-
I'm starting this week (Thurs) so I don't have much to offer except from what I've read... it seems some folks don't lose hair until maybe 12 days into second treatment? But don't take my word for it, I've not started yet. I hope you continue to do well and keep us posted! You are not alone! -Renbird : )
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Hi sherichie-
Oh my goodness. I'm so sorry to hear what lay ahead for you. But I'm so glad you have joined our group! You won't be alone. There are so many ladies here that are happy to help and encourage you. Do not hesitate to share your concerns, fears, questions. I'm thinking of you now and sending BIG POSITIVE energy to you.
I start chemo 11/19/20. Let's stay in touch. -Renbird
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Thank you Renbird for the kind reply. I am hoping a sore tongue with metallic taste, some night sweats and tiredness are the worst of it. Time will tell. I wish you well for your soon to be first teeatment.
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Hi Puncapher,
Welcome to the club. I started TC Friday 11/6. I was told if I didn't have nausea during the first week, it wasn't going to happen. I didn't have any. My tongue/taste buds felt weird for about 6 days. I had mild flu like symptoms for 1.5 days following the Neulasta shot, but no bone pain. And heart palpitations/low BP/insomnia due to steroids until day 6. No other side effects, no diarrhea, no nausea. My white count was through the roof (26) when I got it checked on day 7. Days 8 and 9 I've felt at 100%, lots of energy, worked out (run and weights) and went to work. I am 33 and otherwise perfectly healthy and I feel incredibly lucky to have had this experience so far—I'm definitely getting a little of the old imposter syndrome here, like I don't deserve to say I went through chemo!
I asked the nurse when my hair will fall out (if it does, I cold capped) and she said day 14-17 is usually when the heavy shedding starts.
Good luck, hope your energy returns soon.
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I think everyone reacts to chemo differently, but here’s a rundown of what it has been like for me so far on TCHP. I started in early August and go in for my final infusion on Friday. My side effects have been tolerable throughout, but the nausea has steadily gotten just a little worse each cycle - to the point I had to ask for stronger meds. Luckily though I haven’t gotten to the point of actually puking, but it’s been close a few times.
I only had mouth sores during the first cycle, but the magic rinse they prescribed for that was indeed magic and helped so much. Some food has tasted funny off and on, but for the most part I have been spared the awful taste that others in my chemo group (I mostly participated with the July group) have complained about.
I’ve had pretty consistent diarrhea from the Perjeta, but luckily mine is controlled with Imodium. I also drink watered down pedialyte to try to replace my electrolytes so my blood work doesn’t get crazy. I’m not sure if it’s the pedialyte or just me, but so far so good for blood work.
Other than that I’ve had mild neuropathy that I notice occasionally, but hasn’t affected anything I do. I did not ice my hands or feet. I shaved my head about two weeks after my first infusion because I was starting to get some bald spots from hair falling out. I could have faked it a while longer if I wanted to, but I couldn’t stop running my hands through my hair and I was shedding everywhere so I had my husband shave it just to get it over with.
And of course the fatigue. Some cycles have been better than others — staying well hydrated before the infusions seems to help with that. There were a couple of cycles where I napped for hours multiple days in a row and other cycles where I only napped once or twice and was fine.
I am not looking forward to another three weeks of vaguely feeling like crap, but I am very excited to finish my final cycle and out this part of my treatment behind me.
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Whatwas the magic rinse for your mouth sores? I am having trouble eating and drinking because of them. Also no constipation, rather a bit the other way but Imodium helps. Although still having horrible stomach cramps.
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The mouth wash was literally called “magic mouth wash.” I know it had some lidocaine in it, but I’m not sure what else. It definitely numbed up my mouth and tongue though when I had the mouth sores. Hopefully if you ask your doctor or nurse symptom line they can prescribe something similar.
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thanks for the information. I put a call in to my doc and sounds like it should help.
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Wow! So glad to hear you are doing so well. I pray it continues for you.
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I’m doing pretty well, all things considered, renbird! I didn’t take any Claritin this time around, but I might next time. I had a lot of back pain for a few days and off and on since then, but I honestly don’t know if that’s from the chemo, Neulasta, or just good old fashioned back pain.
I had an awful time trying to eat for a few days with just a terrible taste in my mouth constantly. I don’t have the bad taste constantly anymore, but food still doesn’t taste as good as it usually does. Very nice and loving friends and family keep bringing us food, which is lovely, but I feel bad that I can’t really enjoy it
I shaved my head before I even started chemo so that I didn’t spend weeks worrying about it, and I’m so glad that I did. Getting it over with wasn’t nearly as scary as I expected, and much better for me personally than literally pulling my hair out. Waiting to see if I start to lose what’s left later this week.
Hoping things stay fairly good until my next round the day after Thanksgiving!0 -
Hi Renbird,
I'll be having TC too, starting 11/23/20. If you can, appreciate if you're able to share the icing of hands and feet after you go through it. I bought those cold therapy mittens and socks for that but not sure how much of ice I need to bring as a backup. My port placement is tomorrow (kind of nervous!) and briefing for chemo is Thursday. All the best to you for Thursday!!
Jo
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Got me some of that magic mouthwash an WOW what a difference! It really helped. Thank you
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Got me some of that magic mouthwash an WOW what a difference! It really helped. Thank you
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Is anyone having problems with muscle spasms in you shoulders and back? This is pretty miserable. Kept me awake all night and continuing today. Ideas.?
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Hi Everyone -- I started chemo on Monday and I'm trying hard to be objective about it, rather than letting my anxiety take over. I'm on TCHP for HER2+. Chemo day itself was surprisingly easy. I had the port placed on Friday and it worked perfectly. I was in the chair for about 6 hours and they really took care to include nausea and allergy preventatives. I think they are generally most concerned about reactions to the Taxotere. While that infusion was happening, the nurse stayed at my side the whole time. They had given me Benadryl just prior, which caused me to sleep for about an hour, so that was really a gift. One thing: the chemo room was freezing. I kept my coat and hat on the whole time and also used two blankets.
I woke up the next morning (yesterday) feeling totally fine, almost euphoric. I think that was largely due to the steroids, but maybe just a healthy dose of relief that I had endured the first session. I ate a bit and took a short walk. By 1 pm I was very tired but not having any other side effects other than persistent constipation (I'm going to really have to work on that because I've already tried all of the usual remedies, both natural and pharma). I've been drinking 140 oz of water each day at least, plus turmeric/ginger tea. Yesterday afternoon, I had a visit from my home nurse. I feel so fortunate to qualify for home visits and it's largely because of my anemia, which has yet to be controlled despite iron infusions and a blood transfusion. I've been eating spinach, beets etc with every meal and even having red meat once or twice a week because, even though I'm a vegetarian, I can honestly say, it helps me feel better. I just have to not think about it too much! Anyway, the nurse trained my mom to give me the Zarxio injections. This is the alternative to Neulasta that they chose due to my anemia. I can't bring myself to self-inject and the Zarxio doesn't have the auto-inject option. Oh well. I'm a wuss.
I felt basically okay for the rest of the day but woke up early this morning with pain in my left leg and hip, likely from the Zarxio. Not terrible and I'd been taking Claritin for several days prior. That's a pro tip someone gave me: start the Claritin a week before you're set to begin those injections. I think it helped but we'll see what the 2nd and 3rd injections bring...that's the difference between Neulasta and this drug.
The most helpful practice I've taken on is keeping careful notes on side effects, timing, food, mood, and trying new combinations of remedies. I guess this type of record keeping helps me exert a little bit of control over the process and it's soothing in that way.
It's funny because I'm a pretty devout minimalist and prefer to live as simply as possible, but cancer seems to have brought on the clutter. Suddenly my nightstand is a pharmacopeia, library, and altar. I'm grateful for recommendations for products or practices that have helped you so far with chemo. I really hope to devise a regimen that focuses on natural solutions as complimentary medicine to the chemo drugs. All suggestions appreciated! What is working for you?
Be well, all. Be well.
Ellen
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Puncapher: Could the spasms be from Neulasta? Are you taking the Claritin? Hot water bottle? A warm bath might feel good if it's allowed. I live in a tiny apartment with my partner, two teenage boys, two cats, and no tub. Might have to visit my parents' house for a soak this week.
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I have a groshong catheter so baths are not allowed. Went to the chiropractor and he put back a couple of subluxed ribs. That really helped a lot. Feels like a bad charley horse in your calf but spasms instead of constant. My doctor gave me some flexaril and I was able to sleep last night. Amazing how some sleep makes things look better. Yes, she thought it could be from the nulasta but not sure and yes I did take the Claritin. Every day brings on something new! Thanks for the suggestions Word Girl 1968. Don't know why I didn't think of the hot water bottle. Just the thought of it feels good. Thank you. How are you doing
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Hi Ellen - so glad to hear that your first week seems to be going okay. Thanks for the Claritin tip. I was told by my NP to start two days before but I'll start today based on your tip, even though I will get Neulasta instead of the injections you're getting. I'm starting chemo next Tuesday (TC).
What have you been thinking about your hair? I went wig shopping yesterday and made the decision not to buy one. I just recently spent six long months growing out my natural color (gray), and the posh salon had only two silver wigs for me to choose from, both of which looked pretty bad and were absurdly expensive. I'm getting a pixie cut tomorrow and am going to try the Paxman scalp cooling frozen helmet thing and hope for the best.
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Sharon0706: I think I'm going to forego the wig and just opt for hats and scarves. My hair is already short and I'm planning to shave it sometime in the next week or so. I guess it's consistent with my decision to "go flat" and not have reconstruction. Whatever makes you happiest and most comfortable is what you should do. I'm more concerned with keeping my head warm with the long winter ahead. Ugh.
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Your laugh for the day- -
This morning my ear canals were itchy so I took the Q-tips to them. Was I surprised to see tiny hairs on them! Apparently what little ear hair I have decided to fall out first! Everywhere else is secure and present. Of all the places I was expecting hair to fall out of, I had never considered my ears! Made me laugh and I hope you did too!
Pat
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