Chemo starting April 2018
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Djt, I drink 6-16 oz water a day the day before, day of chemo and 2 days after. Today 5, tomorrow 4. I pee a lot of course but I was told to empty my bladder even if I really didn't have to so I do. Not sure if that's the key but i have just been duplicating everything i did the first time since it worked. I sincerely hope this treatment goes better for you!
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djt- I was told to take the Claritin every morning with an Aleve. And take another Aleve at night. Nurse told me yesterday that i can take the Claritin a few days before to build up in my system. And tonight as my injector started I took my night dose of Aleve. It helped me. Last time I felt a horrible aching through my shoulders and neck within 20 min of the start of injection. Tonight the ache is very mild. Also had it placed in my belly instead of my arm. Nurse also said that’s the better place
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Day 4, really tired. I have no tastebuds. I keep nibbling at everything, nothing satisfies. Everything tastes bland. You guys liking anything, I am desperate. I am on the verge of hating my fav food items.
Maggie and Urdrago, thinking about you guys. Urdrago last of the 4 AC
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FD, sounds like you have a good plan with the clarion and Aleve. And if it works stick to it! Frog, I'm sorry to hear you are feeling blah. How frustrating that everything tastes so yucky. I'm not a big ice cream eater but have given in more lately cuz it tastes good. I hope you are at least able to keep your fluids up. Keep nibbling . I hope this gets better for you soon. Hugs
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Frog--I'm not even on this train yet but the woman who led my patient education session said they recommend people avoid their favorite foods during chemo for exactly that reason. I've read on other posts that foods on the extreme ends of the taste spectrum sometimes work--spicy, tart, . . . ? I feel like it's kind of like what they tell women with morning sickness--that any calorie you get down is a good calorie. How about potato chips?
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Day 3 - and awful headache is back but considering yesterday was Neulasta and I've been very regular with the Zofran I'm not surprised. Hopefully, Tylenol will handle it quickly this morning. At least I got another good night of sleep.
Frog - I'm back in the nothing tastes good camp. Usually for me that lasts a couple weeks and then improves slightly. I seem to do better with spicy flavors than sweet. So lean toward adding spice. For some reason craving sweet tea and it still tastes good which is surprising because sweets aren't tasting right.
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thanks, all for the in site on taking claritin sooner rather than later. On day 3, and my main issue is complete weakness or fatigue, I guess. I can stand up for about 3 minutes and it's the couch. Trying to get the water down, but not much is passing these lips today.
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Sorry, Frog, that is rough. My mainstay has been peanut butter, plus crackers, and noodles. I found i liked parmesan cheese on the noodles. For times when I don’t feel like food, I drink the Boost or Ensure drinks with extra protein. At least it’s some calories with nutrition. I hope something appeals...
Dee
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Day 3- SE are milder this time so far. The Claritin and Aleve seem to be working well. Only mild muscle aches. Starting to lose taste. But my tongue doesn’t hurt as much as last time.
Frog-I feel your frustration. Nothing satisfies even if I eat enough to fill my stomach. Just do what you can. I found that spicy is out for me. Even after things went back to “normal” I cannot eat anything spicy. All I crave is sweet. But my biggest complaint was not the taste as much as it all had to be soft. I love crunchy foods but live on mashed potatoes and cream of wheat for about 2 w
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Fdwithfurkids, I like on cold subs, fruit, and potatoes. Taste buds are gone! Ppl ask me all the time do I taste sugar, sour, ect.. I say"grind up three aspirin in ur mouth then eat something and let me know what u taste." They just snare..I laugh and say, yep that's close to what we go thru all the time..
When does our taste buds come back?
Frog, I hope u feel better soon..hugs!! Im thinking about u too.. last AC (4of4) and I'm at South Haven,MI recovering in fresh lake air with my family. . I was actual able to go all day without a nap.. I shall see how I feel tomorrow. SE minor leg achyness, hurtburn, and sour mouth..I loaded myself with liquids the day prior..WORD for the year "Water"
Had my monthly MO visit with me said"she couldnt find the tumor, and the cluster in armpit was smaller " I agreed as I just did the self exam two days prior and impressed I couldn't find either. Thank goodness for the markers.she going to set me up with breast surgeron consult, bcuz at 8 weeks I will need a mmamogram and MRI. She said, it's possible to go from a stage III to a stage 0..
Next we talked about Taxol every week for 12. She said I could do 3 weeks but I would have more SE, and neropathy was more likely. The amount give on 3 weeks over three hours is the same spilt up in 1/3rd's and 1 hour chemo time weekly. I'm going to stick with weekly..
Wishing for fast recovery, strength in each hour and support for all as we keep moving forward..
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Urdago- Looks like the perfect spot to recover. Wonderful news on your tumor shrinkage. Adriamycin taste issues take a while to recover.
Slept well last night onto Day4 and bone pain is creeping but so far much better than last round.
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Duffyzmom, wishing u positive vibes thur SE and a peaceful weekend..I was actual surprised but glad. I've been conerned with the lypmh node clusters,bcuz we don't know how many will be involved.The lypmh were so painful and radiated pain into shoulder ovet to near spin orignal. I thought it was work stress pain, even got massages and therpay for it.short story i ended up with ulta sound, which lead to here. That my first relief after infusion was most of the pain was gone.
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Hi everyone,
I'm not sure if I've had a hay fever attack (I get those a lot) or a slight cold. My wife is scheduled for her second TC infusion next Thursday. I'm her primary caregiver, but I am taking precautions (Washing hands a lot and limiting contact). So far, she is fine, though when she was hospitalized for her fever a week ago, she had the sniffles and sinus pain, so I am wondering if the fever may have been related to that? I searched on here and on Google about that and many people posted that in most cases, they don't postpone an infusion if the patient has a cold. Have any of you had this issue?
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hey engine, remember sniffles and sinus discomfort and pressure are a side effect of the cytoxan too. Claritin also helps with that in addition to neulasta bone pain. I agree, I wouldn't think a slight cold would not stop a treatment. I guess you may not know exactly what caused the fever but you do know what they were able to rule out. I hope your wife is feeling better and she has a better weekend.
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Hi DebAL,
Thanks so much.
So far, my wife's symptoms went away with her fever, so I am hoping if this is a cold, I caught it from her and she's already had it. I'm just concerned if she catches it, they will want to postpone, but it sounds, from what I've read on here that they go ahead anyway.
They are giving her Neupogen after this next round, so I'll make sure we buy some Claritin.
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engine, maybe others can chime in if they take claritin after the neupogen, I would assume it would help as it does with the neulasta. Maybe start the day before chemo then for 5 days or so. I take it for 10 days. Hoping for an uneventful weekend for all of us!
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Hello all, I have been following this thread but first time posting. It has been really helpful to follow you all in your chemo journey while I am doing it as well. I have just completed by 7 of 12 Taxol/ Herceptin treatments. So far my side effects have been minimal and I still have my hair. Astayanax66, have you lost your hair yet? However, this is day 2 after my 7th treatment and my right arm and hand is numb and tingling? Is this the nephropathy they talk about? Is there anything I can do to alleviate it? Will it go away? Any suggestions would be appreciated.
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positiveinchic, welcome and sorry that ur here. I don't have any experience with nephropathy. But my understanding from my MO is my next phase with Taxol that nephropathy is a SE and I'm suppose to report it to her so they can make adjustments. Other than taking B12 and possible later B6, icing hands and feet. Hopefully some body else chimes in and gives u more feedback..
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Hi positiveinohio - I was also told to report it pronto but don't know what they do for it. FWIW, my naturopath recommends taking glutamine powder (30g/day) at the first sign of tingling/numbness and I mentioned this to my onco nurse and she said she had had some patients use it and thought it was fine; however, I think at a much lower dose.
Anyone else experiencing sore nail beds?
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Hello to all, and welcome (but also sorry) to the new posters. Hope Saturday is a good day for everyone. I have found that Claritin with 2 ibuprofen makes the Neulasta bone pain diminish to about 0.
I take b12 and b4 daily, and believe it can't hurt, and can maybe help. Dee, have you tried carbs, like toast, crackers, etc. With butter? That is about the only thing that taste real and good to me. I have just accepted that for those first 8 to 10 days, food is a minimal enjoyment, but if does improve. The foods I liked the first round, I can't bear to even think about now. But a cup of coffee is going down good, for that I'm thankful! MARIE, nail beds, have you iced your nails during infusions? I think that is a preventative to nail problems, best to you. I am doing the hands and feet icing for that, and for neuropathy prevention, and so far, so good.
I take a Xanax to sleep through the night, so helpful. But last night I woke up drenched in sweat, a new one for me. I tend to think at day 5, its my body ridding itself of chemicals. Who knows tho.
Hoping everyone's blahs and issues are minimal today, hugs and positive thoughts to ALL☀️☀️☀️🎀🎀🎀
Deborah
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Happy Saturday All!
Today I'm so much better than last round. Headache, bone pain and fatigue but no tummy issues (just no appetite). Sleep schedule was bonus for watching the royal wedding this morning and now I'll just relax and hope the headache subsides. I feel like it is safe to stop the Zofran so I'm hoping that helps.
PositiveinOhio - I seem to notice neuropathy more when I'm tired.
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Hi friends, please visit the new thread. Wig talk, if you want to join in that subject as well. It's under chemo side effects as this one is. Thanks
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Hello everyone, hope you guys are having a good weekend. Thanks for all the kind words around food. Food has started tasting tad bit better than foam and cardboard. I find myself looking at a lot of food videos, I dont know why. Ha ha ha.
Urdrago, thats wonderful news. I met my BS on friday. I could not believe that we were discussing things after chemo ends. I had kind of hit pause on life button.
Love and strength to all you ladies out there and our friends and families, who stand with us during these times
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Frog, I had as well hit the pause button that's why I tried to do something normal with my family. SO the truth is I'm back at home bcuz I was feeling like the SE's of stiffness and lack of sleeping well in my own bed. Truthful happen to be lounging in my recliner. So glad to hear u talked to ur BS. It's all coming together.
One day at a time, all of this shall pass. we shall always be strong!!
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Hi, Positive in Ohio—Yes, it’s really falling out now, but it took a while. I think of it very much like shedding. Not big clumps, but the pillow and my chair are covered in it. I still have a bit on top, but thin. I’m glad I clipped it short. I’ll go for #7 on Tuesday. I have had bouts of neuropathy—it isn’t really painful, just a faint ache and numbness. I tend to fumble things especially in the morning. I’m knitting every day, and that’s preserving some manual dexterity. I also am doing very light weights, 3 lbs., just bicep curls. The worst neuropathy is in my feet. I found that warm moist heat helps a bit. Like others, I’m taking B vitamins. I wasn’t told to do anything specific. I wonder if it might get worse in the latter weeks.
Deborah, yes, I lived on mashed potatoes with shredded Parmesan this week. One of the nurses recommended baked potatoes or mashed potatoes for the potassium, and the Parmesan adds some calcium. She was right—potassium was good this past week. Today I had noodles and cheese. My morning routine is chocolate milk (also recommended) plus some coffee and stir in 3 tbsp of instant breakfast powder to drink. Then I mix cream of wheat with oatmeal to eat slowly. That “meal” really packs in iron and protein. Then I add some potatoes or noodles later in the day for potassium. I also made a peanut butter and Greek vanilla yogurt shake with added protein powder to sip on during the day. I can tell when my protein or iron get low because my heart speeds up (Fitbit). It’s amazing...after about an hour of refueling, heart rate drops to healthy range.
But still on rough days, I just nibble and add in a Boost shake and water. You do what you can. Some days, it’s just a few bites and sips every hour.
Duffyzmom—glad you had a better week. My bff and I wore big hats and watched wedding highlights. It was delightful. 36 years ago last month, we were wide-eyed teens walking around Windsor on our first trip to England 🏴.
Dee
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Hi all. Hope Sunday is a peaceful and kind day for all of us. I'm starting to get a coated tongue with thrush, just liked last time, but am on it quick now. My onco Dr. Gave me a different RX as a just in case it reoccuranc this time, it's a dissolving pill. I took it last night, no where near as bad as the liquid nystatin I had to swish and swallow. I think I caught it quickly this time.
At the Dr, appt. When I told him how bad the nystatin tasted, the Dr. Just said "oh dear" and looked at me. I told him I would save him a swig, so he could taste it.....and he quickly came up with the dissolving pill option. My guy with me said I was kind of hard on the doc🤔🤔. Hard on HIM???? I have learned to speak up for sure.
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Hi All,
Hoping you've had a somewhat decent weekend! I'm getting ready for Round #3 AC on Tuesday so I've been feeling great and the constipation has subsided. Yay! But, I'll be back to square one the day after tomorrow. Boo...
Udrago that's awesome about your tumor shrinking! And, you picked a nice place to recover, although I'm sorry you're back home due to SE. It's interesting that your MO would consider shortening the number of T infusions from 12 to 3 (even if it meant making the does 3 times stronger). Is that the only option - 3 weeks or 12 weeks? That's a huge difference. I mean why not do a double dose for 6 weeks? I'm curious because my T is just around the corner, too, and I hadn't thought to ask about changing up the regimen. I'm scared enough of the SE for that one (D, neuropathy, altered taste) that I wouldn't want to push it, but... In fact, I was wondering if my MO would agree to give me another round or two of AC and take away some T!
Frog, so cool to be discussing the future after chemo even if it is about surgery! Moving on, right? I figured out that I'll be a quarter of the way through my 20 weeks of chemo this week, woot!
RE food choices: for frog, Dee, FDwithfurkids, etc - I think I saw this posted earlier in this thread, but for Mother's Day my daughter gave me the cookbook, What to Eat During Cancer Treatment, from the American Cancer Society. You can get it online at Amazon. It has 100 recipes, divided into symptoms (so some for if you have diarrhea, some for constipation, etc). It has a whole chapter on recipes for taste alteration. For metallic taste, it suggests using plastic utensils, adding lemon juice or vinegar to veggies to mask bitter or metallic taste, using more sour foods like pickles, cranberries/juice, sauerkraut, using feta or parmesan, marinating meats in barbeque sauce or italian salad dressing or teriyaki sauce or using eggs, dairy, beans, peas, nuts, or nut butters or high protein pasta or bread as alternative proteins if meat tastes bad. It says to avoid your favorite foods during this time as you may find you hate them when this is all finished because you associate them with the yucky taste after chemo. I hope this helps! (And here I thought T was going to be a breeze compared to AC. Maybe not!).
Djt, I hope your mouth is better. I've been taking a Bcomplex and an additional B12 supplement this round and had no mouth sores at all. I'm on AC, not your CT (although the C is the same), but maybe increasing your B vitamins (or adding B complex) would help? Also, I know you'll hate me, but coffee is acidic and may be contributing to the fungus...(sorry!).
postiveinohio, have you read the thread about icing your hands and feet during your infusions? I don't have experience with T yet, but I hear this helps with neuropathy as does the glutamine. Definitely tell your oncologist so (s)he can change things up for you! Good luck!
Have a good week, everyone!
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GAWarrior, wishing you the very best for upcoming Tuesdays treatment. Thinking past it, to better times a waiting c
an help.I just booked us a little fall vaca in a cottage on the water in mid coast Maine, in October when the waves will be wild, the air clean, the trees scarlet, and the crowds gone. It has a fireplace, a screened in porch, and the tide comes into the very steps. Can't wait.
I don't drink too much coffee, but, yes, the acid can affect bady functions, I agree. The mouth thing isn't sores, I've been blessed with no sores, but a film, of coating that can creep down the throat making it sore, and even progressing to stomicitis. It a form of yeast infection. I think it's under control I hope. I have not called my triage nurse line once this time!
Time is moving on, and this too, shall pass
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Thanks, Djt! Your fall getaway sounds lovely! Something to look forward to, for sure. We were in Maine last Sept for the first time - stunning! I'd love to go back someday.
Listen, I opened a package of Activia yogurt this afternoon and thought of you! Have you tried taking probiotics to help with your thrush? This crazy chemo kills the good bacteria along with the bad just like an antibiotic does, which means your body/mouth chemistry is really unbalanced now. We always tell our patients to take probiotics along with their antibiotics to help counteract it. I'm not sure Activia would be enough, but you might try eating some daily anyhow. Definitely go to your grocery store or Whole Foods, Sprouts, etc and grab some probiotics from the vitamin/supplements section, though. Aim for something at least in the 20 BILLION range (higher is better) and get one that has a diverse blend of bacteria (I'm taking one with bifidus, acidophilus, and 8 others that I can't read because the writing is microscopic and I don't have my glasses, lol). Take them daily from now on and you might try doubling up on the dose for the first few days after chemo. They're bacteria, not a medicine, so it won't hurt you to double up. If you eat the Activia, try to coat your tongue with it and eat it slowly so some stays in your mouth for a few minutes, which should also help your tongue. Hoping that helps a lot for your next infusion.
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Wow Djt, the cottage sounds fantastic. I hope you have a lovely time there.
GA Warrior, what I understand from my MO about the Taxol is some people prefer the DD Taxol every 2 weeks X 4 because that way they finish their treatments 4 weeks earlier. ( I can see the temptation). However, 12 weekly Taxol means lesser issues with the SEs or more manageable SEs. Infact my MO said I will not get any neulesta shots during weekly Taxol as it does not wreck as much havoc on your WBCs as DD AC or DD Taxol or Taxol + Carboplatin. My doc has not advised any supplements like B vitamins, I will check with the nurse. I am not sure about the SEs though. Some of you guys have been having a rough time. MO says Taxol will be easy after DD AC. We will see.
Someone mentioned sore nail beds. Yes, I have 3 and I am not even on Taxol yet. I can imagine what lies ahead when Taxol starts. Both thumbs and the right middle finger are turning black and are sore. I have noticed if I keep my nails very short they hurt less. The MO nurse suggested soaking them in water mixed with white vinegar or tea tree oil to keep them free from infection. Time to hit the pharmacy again in prep for Taxol. Something new that has been bothering me is I feel there is a lump in my throat all the time. Acid reflux maybe. Need to check with the nurse. I feel like such a whiner.
Dee, I took screenshots of your Taxol experience that you so patiently must have typed out for me, thankyou.
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