Starting Chemo September 2021
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Hi all, looks like my chemo won't start till October. Getting a 2nd opinion from the head of oncology on Sept 30th, then the port put in if I am still getting AC chemo and not the other (TC).
Melander8117 be aware there are many types of THC and many blends of those types. Some will NOT put you to sleep, some will. My husband gets medical THC here in FL. He has drops for nighttime to help sleep that are different than his daytime drops. My VA docs will not talk to me about THC since it is a federal organization and doesn't recognize that this state legalized THC.
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Debbie---So sorry! It might be the different regimen you are on compared to me. So far, just water tastes weird but the zinc does seem to help some and is known to be good for warding off Covid, so I'm taking it.
Last night I came down with my first mouth sore--yuck. This is different than round one for me. I've never had one before so will just see if it goes away or multiplies before I address it but any help is appreciated. I ate green bean spaghetti for dinner, so maybe the spice activated it? Hope not, I LOVE green bean spaghetti, subs carb noodles with green beans and is great!!
Hoping everyone is doing better today.
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HummingbirdAZ, I'm sorry you're dealing with a moth sore. Are you rinsing your mouth with a salt and baking soda mix? If not, do that 2 or 3 times a day. One-quarter teaspoon baking soda and one-eigth teaspoon salt to one cup water. Hope this helps.
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Hummingbird, a naturopathic doctor recommended manuka honey for mouth sores — apply directly to the sores several times a day. I had the start of one a couple days ago and this resolved it quickly. She also recommends swishing with a probiotic to help with prevention (get a powdered kind or open the capsule and combine contents with water). This is in addition to the salt/baking soda rinse swimgal mentioned
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melander I have lots of anti nausea meds and seriously couldn't imagine how I would feel without it. Day #3 is worse than day 2.. super tired, lightheaded And nauseous. Thank goodness for my mom's homemade vegetable soup!
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Hummingbird47 - re the mouth sore, sorry about that for you - I can see how that would so easily happen. I know the inside of my mouth is way more sensitive now than before. I am using a very soft toothbrush and the baking soda/salt rinse after everything I eat. And Biotene twice a day. Hope it heals up soon for you.
This is my Day 11 after Chemo 1 and I feel tons better - just still have the runs a bit - havent had a normal BM since this whole chemo thing started and the lack of taste is just horrible. Some things that I loved literally make me gag. I find banana, the little tubs of peaches to be the most OK for me when I am hungry but food doesnt seem good. Made my favorite sandwich for lunch today and could only stomach one bite. Ugh. On the upside I still have hair!!! And energy back again so I did little things in the garden today.
Have a wonderful Sunday everyone and hang in there. If you are on early days like Spades2525 know that it will get better. Day 8 on really made a big difference to me.
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Oldladyblue- I'm sorry to hear about the delay, I hope your 2nd opinion brings clarity and that you are comfortable with the plan. And thank you for the additional tip on the THC. I'll do more research on kinds that will be good for sleep.
Spades I had the same experience days 3-4 as well. Thank goodness for anti-nausea meds and homemade soups!!
Hummingbird I'm so sorry about the mouth sore. I really hope the tips here help clear it up fast! My oncologist also said she can prescribe mouth washes that help numb your mouth so it is easier to eat when you have sores. In addition to the tips here maybe that could help as well.
hope everyone has a good start to their week
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Thank you friends!! Yes….they prescribed that for me that cream it's in my bag ready to go!!! And your words of encouragement help so much! I see my med oncologist today! Chemo Wed. Thanks so much
PS Oldladybug….my dr said if I get a mouth sore to call right away so she can get a handle on it ….I guess it's better to nip in bud?! Just FYI.
I got this jic (Amazon)
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Thanks Butterfly47 for posting on your journey so far and for the tip and pic on the mouth spray. I will buy it for sure, as I already have trouble with dry mouth! Thinking of you and your appt today and chemo Weds. and Melander please let me know what you turn up with your sleep THC research. I already have pretty bad insomnia so if it gets worse with chemo I won't be sleeping much at all.
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Thanks all for the mouth sore tips. I have been careful with it--just one--and it seems to be resolving on its own. I am going to get the stuff, though, now that I know what they are. Today I'm entering slumberland for a few days, just woke after 10.5 hours of overnight. At least we know what to expect, right?
For THC, I do just .25ml or sometimes .5ml of Delta 8 with turpines. If you have a dispensary, they are VERY helpful, will give you exactly what you wnat/need as far as relief and dosages. I told the guy I was a cancer patient starting chemo and wanted something for relief of stomach and sleep issues as recommended by my doctor. He gave me a dosage chart to follow if it didn't seem to work with starting point and max point for average customers with cancer. I still do the lowest dose and notice the nights I forget, so it must work. Although, during the slumberland days, I doubt it would make a difference. He gave me 25% off cancer discount because this little 500mg bottle was $60.
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Has anyone else had a racing heart, chest pain, shortness of breath that goes on for several days while going through taxol + herceptin chemo?
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Hey AMG2…..personally I would call my doctor for those things!! Just got home from my oncologist that said those 2 specific drugs you mentioned have almost no side effects. Hope all goes well !! 🙂
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AMG2, I would definitely reach out to your oncologist or go straight to the hospital if needed. Those symptoms are on my treatment summary under “talk to your medical provider right away or get emergency help.”
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AMG2 - Ditto on the previous comments. Hope all turns out well. Weird side effects just pop up all the time. Although today on Day 12 after Cycle One feel almost normal again! Yippee! 10 days till Cycle Two starts on 9/30. I will make the most of these good days for sure.
Hummingbird47 - glad the mouth sore is starting to resolve. My doc would not give a green light on any THC - having never taken anything like that before I am nervous, but I have heard wonderful things about help during chemo. My son got me some gummies but I haven't had any yet. Any advice/input gladly appreciated.
Noticed that the skin all round my mouth is ultra sensitive - I've been putting Aquaform on it the last couple of days.
Otherwise the runs are nearly gone, thank goodness and I've been able to stomach some real food, in very small doses. Cheers for small victories.
Have a good evening everyone.
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Hi All! I am on day 4 after 1st treatment and so far so good! Super tired and achy with very little appetite but minimal nausea. Trying to work (I work from home) and had to stop midway to take a nap - but I got 8 hours in yesterday!!! We will see how today goes!
Has anyone had issues with headaches? I have a headache every night since Friday when I go to bed and it is there all through the night but when I wake up it subsides.
Also, any issues with nose bleeds? I am going to TMI here - blew my nose and the tissue came away with blood. Not just a little but it wasn't dripping down my face and it did stop.
I am so glad that I found this forum - all of you are helping me stay positive about feeling like I have the worst flu in the world and the tips are great!
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Hi, Ernnelson. Yes, I started getting minor nosebleeds and my MO said to use nasal saline several times a day and that has worked. Very minimal blood in my nose now. You can get it at any drug store, Walmart, et cet. Hope this helps.
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Ernnelson, glad to hear you're feeling okayish
I've had a headache on and off ever since the first treatment. It's on my list to discuss with my MO. Hoping yours resolves a lot faster!Spades2525, I hope you're feeling a bit better by now. I was told days 3-7 are typically the worst on AC, although my own experience was a bit different.
AMG2, how are you feeling? Were you able to reach your MO?
DebbieM, enjoy your good days! I'm not sure about where you are, but the early Fall weather has been beautiful here. I'm on the paranoid side and haven't had indoor visitors since the start of the pandemic but have been doing outdoor visits with vaccinated people, well distanced and/or masked as appropriate.
I'm gearing up for cycle 2 on Friday morning. Trying not to think about the previous one or the next one and just get through whatever this one holds. My sister is coming over on Thursday to give me a buzz cut, as I'm pretty sure otherwise I'm going to be losing chunks just as I'm at my sickest this weekend, which sounds truly miserable. So far I only have two soft beanie hats and probably need something else but not really sure what. I'm not a stylish person and am not working right now, so many of the scarves and headwraps seem far too fancy for me. I haven't decided definitively against a wig but I feel like in the end I just wouldn't wear it. It will be cold in Ontario soon and I may ending up wearing a regular winter hat full time, pompom and all. I'm always cold anyway.
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Mindthief: My round two has been slightly different despite what the onco and nurse said. I had that one mouth sore that went away but have lost taste and everything feels sticky inside my mouth. I'm using all the recommended mouthwashes and rinses to no avail. I am a little less tired than the first round, however, which is a plus. Still taking it easy but not just exhausted the whole time. I guess it's an ever-changing ordeal! I also shaved my head but feel as if maybe a bit too soon, not that it matters because it's coming...but there is a little growth so it still might be messy. Good thing for me is that I've got a little time to tan it here in AZ without a hat! Praying you have an easy time with round 2 and enjoy the next few days!!
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Hi everyone.. Day 5 after treatment 1 … lowest function yet. Aside from the expected fatigue, muscle weakness, and nausea, is anyone else getting skin sensitivity to touch? I feel like I have bruising or a sunburn almost all over my body. Very unpleasant. My brain also slowed down today.. hopefully in a few days I’ll start to feel more like myself.
I am feeling lucky that it is getting cooler here because I plan to rock super soft winter hat looks … Pom Pom’s here I come I do have a scarf and wig… without work or really any social life, I’m not sure how much they will be used… but we’ll see 0 -
Hi mindthief, I am feeling better, and thanks for asking. Still have some mild tachycardia, but no chest pain, and no shortness of breath. My MO says to please call him next time it happens and keep an eye on whether it's a sudden or gradual thing. I'm back for week 4 tomorrow morning, so we will see how it goes.
Best of luck to you with cycle 2. Hope it isn't too bad.
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Ernnelson - yes, I am also getting nosebleeds, my nurse said its normal. The mucous membranes inside your nose are affected. Mine have been on and off daily for the last 3 or 4 days. You have to be super gentle and try to prevent blowing. Annoying, huh? I now travel with several kleenex in each pocket, just in case.
Mindtheif - I am in Sacramento, California and although the temps are still in the 90s we have the promise of cooler weather in the 70s coming soon. I love Fall.
Hummingbird47- I also lost my taste about Day 4 or 5, ugh, everything was horrible, the texture very repulsive with no taste. But now on Day 14 I have regained some taste again and enjoyed dinner last night. I find the more seasoned the food is the better it tastes and my husband fortunately is a whiz at cooking and only wants to make me stuff I like. I expect it will go again when Cycle 2 starts.
Spades2525, yes about Day 5 was pretty rotten for me too - just know it gets better as the days move along. By Day 7 I was feeling so much better.
Happy Fall everyone!
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Just got back from my pre-treatment appointment with my MO who told me my Oncotype score was one of the highest she's ever seen, so that's awesome. We already knew it was going to be high and proceeded with chemo under that expectation but it was pretty sobering to see just high it was. She stressed though that the higher your score the more the chemo helps, so I just pray nothing happens that prevents me from completing it. She's also recommending I have my ovaries out, which I was going to ask her about anyway, so it seems were on the same page with doing everything possible to lower my risk.
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Hi everyone,
I have to admit I wrote in September 2019 chemo thread and then i was wondering why no one was answering. *face palm*. Started chemo brain before even receiving the chemo it seems!
I am starting with TCHP tomorrow on Friday, 24th of September. I will receive it for 6 times with 3 weeks in between.
Feel like I am late to September club and early for October one.
Heard first admission is very long, hope I can pass the time. I will be receiving cooling for hands and feet through the machine at the clinic. They don't have cooling solution for hair yet so I ordered something online yesterday night, it has some gel packs inside a cap, hope that works and doesn't induce headache. I can do without one more side effect.
Yesterday I went to the hairdresser to cut my usually very long hair. It doesn't look half as bad as I thought it would be, hoping to keep a part of it at least for a month or so, not planning to shave, but if it starts shedding too bad, I might have to change plans.
Just had a soda with lemon, trying to remember, am I not supposed to eat any citrus fruits? Orange, lemon etc. I google and see conflicting information on those, some say eat it daily, some say avoid.
Wish everyone the best with your ongoing treatment.
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mindthief - I’m not familiar with this test … but after your post I googled it. I can imagine how difficult it is to get that information and process all that it means. I am glad that you feel you and your oncologist are on the same page with treatment options. That’s helpful. Good luck with treatment tomorrow.
Hi Sarah_78 - hope all goes well for you tomorrow too
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Hi Sarah_78 - welcome!!!! Your treatment plan is exactly the same as mine. I have the same meds every 3 weeks and did my first cycle on Sept 9th, next one coming up Sept. 30th. It was about 6.5 hrs in all at the infusion clinic, but the time went really quickly so it didn't seem that long. Take a good book or your tablet. I also did the feet and hands ice, not the head thing. I felt pretty good the first few days and not terribly bad the next 4 or 5. Lot of runs to the bathroom and lots of naps seemed to be my thing. Also my taste disappeared so that was very weird. Applesauce, bananas, toast and ginger ale were my friends on those days. Now on Day 15 I am feeling so much better, almost normal. Energy back as of Day 10, appetite back, no naps needed. I hope your #1 goes really well for you and minimal side effects. Drinking lots of fluid is key apparently.
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Hi Debbie,
I was reading through the thread and wanted to write you too since you appear to be my future self, 2 weeks apart :-) Right when I wrote reply, seen you wrote already!
How is your hair? Any shedding yet?
I signed up for an online make-up course for breast cancer patients, it is on Monday, hope I won't be too exhausted to follow then.
Already dreaded for steroid induced insomnia. I was treated for Hodgkin's 10 years ago and I remember I wanted to run around the first 3 days and ended up reducing the dose on these after a heated discussion with my onc. Maybe I was very young back then *sigh*, but then again maybe it won't be that bad this time around.
Enjoy the rest of your days feeling good until you can cross around 2nd out of 6 and you will be one third done!
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Sarah_78 - funny you should mention the hair. I had been "bragging" to my my sister yesterday that I had no signs of any hair loss - and then this morning when I was brushing my hair I noticed quite a bit more than usual in my hairbrush....ugh.....guess it's beginning. My hair is super thick so it's not noticeable yet. We'll see how it progresses. Have a great evening.
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Debbie, you shouldn't touch your hair :-)
Don't brush and wash too much, this is how I went through 4 x ABVD (with adriamycin also causing hair loss) with more than half my hair intact! I had a lot of hair back then, now it is still thick but perhaps not that much. Let's see how much we will lose with THCP.
I did cold cap today although the cap got too warm in between, so it was like half cold capping. But for the time it was cold, I had no side effects, no headache or anything. Considering to buy another cap to bridge that. They also placed my hands and foot in a machine, that was also ok, just having hands tied is annoying, time doesn't pass.
So 1/6 done here, hurray. Hoping diarrhea won't beat the crap of me, or any other side effect for that matter. I was told to eat lots of fish and starting with it tonight!
@Spades2525: thank you, how are you doing, when is the next infusion?
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AGM-Thanks for the update! I’m glad it’s slowed down and your feeling ok. There is a YouTube channel I found “All for the girls” with a person who is on the same regime as us. If you watch her first chemo video she did have similar side effects as you did! So your not alone!
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I am happy to report that Day 8 and I finally feel human! Phew.. it was a rough go there for a bit. Round 2 is next Friday Oct 1.
Shaved my head today and made my kids cry.. so there’s that 😬
Hummingbird - how are you doing after your second round? I am hopeful that I will have less exhaustion after round 2
Mindthief- I hope you are doing okay after your treatment today
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