Starting Chemo March 2021
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Hi all, been lurking for a week. Started TCHP on 3/30. Today was day 4. Doing ok so far. I find I feel the worst after dinner.
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Welcome SailCA.
Carpe- I eat whatever I feel in the mood for. Yesterday I was craving softer foods, like cheese, noodles, instead of crackers and crunchy stuff. I wonder if that is my gut telling me to give it a bit of a break? I love spicy and spiced foods, but I'm choosing to eliminate spicy from my diet right now. I also am avoiding nuts, seeds, and popcorn now, even though all the doctors say there is no real data that those cause diverticulitis issues. Like Chrystal, I also make protein shakes with a flavored oatmeal packet, bananas, blueberries, etc.
Yesterday was TC #2 day 4, and true to form it was the worst day. I was so, so tired. Worked an 8 hr day (telework), and then plopped my butt in my chair. My temp went up to 99.6 and that was scary given that's how things started last time. My belly was only slightly bothersome. All the fluids I was retaining came out through the night, thankfully. I hate that bloated feeling. I'm feeling better today, just tired and a bit groggy, temp is down to normal.
My Birthday/Easter weekend will be super low key. I have no desire to entertain! I hope everyone has a great weekend.
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Happy birthday Kipepeo!
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So I had my chemo yesterday. Still feeling good today but I'm aassuming that's because of the steroids...... We will see what tomorrow brings..
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I deleted this app cause I was just frustrated with all of this only to be here reading all your comments with some comfort and relief. Had my first infusion on 3/26. The chemo wasn’t bad but that shot the next day was awful. The bone pain was the worst. I’m just now getting better from that. The oncologist nurse said to take Claritin D but reading everything online now it says Claritin specifically not D. Guess they will be hearing from me on Monday. Starting to see the hair loss and dang my tongue is whiter than a ghost! I am grateful I only need 4 doses. I can’t imagine anymore than that. Then hopefully on to my final reconstruction. Because I had radiation in my first diagnosis, it caused so much skin damage my mastectomy wasn’t a success. Therefore, I’ve been attached to a wound vac since 2/19. And month of gauze packing before that.. so needless to say I’m flat with a tube attached to me... I’m sorry I’m venting. I’m tired I’m frustrated. Like we all are. Feels good to put it in writing. I hope you’re all having a better day.
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Chrystix & Kipepeo - thank you for the food suggestions. Guess bland foods is the way to go - at least for me. It is so hard to eat food that tastes like nothing, but you also know you need the nutritions.
Kipepeo - Happy Birthday - wishing you a really good weekend despite the circumstances.
I am on TC #1 Day #4 and it has been a rutty day. Lots of body and joint aches, and a low fever. Hopefully, tomorrow will look better.
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Hi all. I've been in and out of clinics this week trying to figure out why my heart keeps revving up so high in BPMs. After an echocardiogram on Friday they found the end of my port's catheter is in my right atrium which could be irritating my heart and causing tachycardia. So my oncologist said if it acts up just to head into the ER or urgent care clinic this weekend for iv fluids (they seem to help for some reason) and an xray to see exactly where my cath is. If not this weekend we will schedule it for Monday. All this right before my second round of TC on Tuesday. I'm feeling nervous, so much so that I cancelled my first vaccine dose today as I didn't feel like adding another variable into the equation.
Hope you each are enjoying your weekend and those who celebrate have a nice holiday. And may all your SEs be momentary and gentle!
Happy birthday Kipepeo! Mine was the 26th and my kiddo's is the 28th. Fiery Aries strength and innocent determination can help push through these challenges. Hope you are well celebrated by those who know and love you.
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Happy Easter all. Thank you for the birthday wishes. It was quiet and uneventful, as I am very tired and just not feeling well.
LoveNow, wow I hope you get that tachycardia straightened out. I have that too, but I've had it periodically all my life.
I am having GI issues again, severe diarrhea, and increasing periodic pain. My temp is still in the 98s. I'm afraid I'm headed back to the ED possibly later today. My GI doc gave me 2 antibiotics to take if I started feeling this way, but since I'm probably neutropenic AND I had a perforated diverticulitis just 3 weeks ago, I don't want to try and self medicate. If this is what it is again, I have to catch it before it gets bad enough to require emergency surgery. Being immunosuppressed, I would have a tough time with a major surgery like that.
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Today is day 4 on AC#2. I am still nauseous and very gloomy. Definitely worse than first time. Not looking forward to number 3 and 4.
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Day 6 today, not great. No energy and diarrhea. My abdomen feels like it’s being twisted, and so much acid.
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Heidi I am sending strong wishes that you can stay safe and healthy as possible today. Hopefully they can head it off before it gets dangerous again. And I also hope you have a support person to be with you if you need to go in.
Aram sorry you are in the funky part. Day 4 and 5 were the worst for me the first time. Hope you can find some relief soon.
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So I just got home from the ED. Thankfully this time my blood counts were good. Had they been low it would have automatic admission according to my MO. The pain was minimal, but they did a CT scan with oral and IV contrast, and that came back good too. It showed diverticulosis, but no infection. So I'm home and do not have to take antibiotics, but am on a low fiber diet for awhile. They're still not sure what is going on, but best guess is chemo induced diarrhea, and it hurts me because I did have that bad infection just 3 weeks ago.
Again I have to consider whether I want to continue with the chemo.
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Sorry everyone is having a hard time, you never know what symptoms will pop up do you? My WBC, etc were down again and I started to feel feverish, felt like sinus infection. Bad headache, nose sores. Went in to Dr., on antibiotics again, I haven't taken so many antibiotics in years! I'm feeling better, we have bad pollen right now, so I'm glad I headed it off. Couple head "pimples" and a dry cough.
Someone posted awhile back asking if they should work, I think it is good, as long as your employer understands how unpredictable this can be and you may have to bow out on last minutes notice. And also don't take on too much.
Welcome to the new members and belated birthday wishes....best food for me: bananas, oatmeal, Great grains cereal with almond milk, blueberries, watermelon. As I start feeling better, I good sandwich!
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Is anyone else experiencing major brain fog/chemo brain the first few days after treatment? It mostly went always on tc#2 day 6. It was so bad that I thought I’d have to quit my job!!
I also felt like my legs were really heavy, very fatigued, joints and bone aches, stomach problems, but the brain fog was what stood out the most. I feel mostly fine today and I don’t anticipate any problems working full time until my next treatment. Going for blood work today, I’m curious to find out if something is out of whack again (last time low platelets and high liver enzymes).
Seems like round 2 is harder on everyone, sending you all hugs and strength.
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My round 2 was a bit better than 1. No idea why. Similar symptoms but less so. I did start Colace instead of Miralax and it helps more. Also, I like that it is a pill (for constipation). Have head pimples now also, not too bad and dont itch or anything. I have tiny short fuzzies, will keep letting it grow to see if its worth keeping or will shave again. I do get tired daily at end of day, nothing like the huge fatigue the first week after treatment tho. My heart goes out to all having a worse time. It is temporary and will give so much life after-- please think it will help you.
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I have the heavy legs too. My fuzz is getting less and less, and honestly I'll be glad when it's gone, because it actually hurts to be bent opposite of its growth direction. Of course it grows in all directions around my head.
Question for all...who is taking chemo after having surgery and clean nodes? Maybe because of a >25 oncotype score, or it was recommended. But don't actually have detectable cancer?
This is my scenario, so every time I have these major side effects I want to stop treatment. But I know it has benefit (against cancer), so I'm constantly weighing pros and cons.
I had my first acupuncture treatment today. This is offered at a reduced rate at my cancer center. I've never done it before, so hopefully it helps some of my many issues.
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I'm doing that. My oncotype score was so crazy high (61) that it wasn't a borderline decision; the potential benefits seemed clear and I'm determined to see it through. Had my first chemo 3/31, with five more to follow. Mine hasn't been terrible so far—a little bit of nausea, some bone pain, and just feeling tired—though I know it's early days.
I hope your side effects calm down soon and become more predictable.
Did the acupuncture provide any relief? Did it hurt while they were doing it?
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Heidi, I too had a clear nodes and a borderline score of 20 but because I am pre-menopausal, have BRCA2 mutation, and had 4 tumors in both breasts some of which were grade 3, we decided it would be good to treat with chemo. Before I started it I really thought it was the right choice. Not so sure anymore. I had my port cath shortened today so hopefully that won't be irritating my heart anymore. And I had my second round of TC today. Going to give it one more chance and if the side effects are too much I will likely have this be my last. They did put me on a different injection due to bone pain so now instead of one shot I have 7 smaller doses, one per day. We will see if that helps some.
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Thanks for your responses. I'm thinking I may do #3, knowing I'll get the diarrhea.
Funny thing is in the hospital they gave me granix pegfilgrastim shots daily. I didn't really have bone pain. After tc #2 I had the neulasta onpro and I haven't had any bone or muscle pain.
The diarrhea is lessening (Imodium and acupuncture?), and my only real symptom is the nasty dry mouth, well and fatigue.
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Kipepeo - Hang in there. The side effects are awful (as I am going through them too) but this will be over soon. The chemo is supposed to help in the event there are random cancer cells anywhere in your body. Do the oncologists and all medical folk know everything - probably not. But what they are trying to do is minimize our risk to additional exposure. There is no guarantee, but I am one of those who listens to the drs.
My surgeons did a partial mastectomy/ lumpectomy, got the tumor and clean margins in January. I decided I don't want future surgeries reconstructing my breast so I went back to my breast surgeon to remove the entire breast. Wouldn't you know it, they found another 1 cm of cancer tissues. So if I had not done the surgery or walked away from the chemo, there may have been some cancer cells left.
You are lucky that your cancer center has an acupuncturist. Mine did in 2014 and it was amazing. I am also trying to find someone and see if it can help me.
Yesterday was TC#1 day 7, and boy did I have pain radiating up and down my back. They say it is from the neulasta/fullfila. What an awful feeling. I also had severe vomiting overnight. Trying to take it easy. We have to be so kind and gentle to our bodies.
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Carpe- that is scary, and a very good point. I've also had an mri and a pet scan and now 2 abdominal CT scans since my original diagnosis. My genetic testing came back negative. But I did have a lot of the other risk factors for bc, such as over 35 when first child born, couldn't breast feed, I'm slightly overweight, family history, dense breasts, use of birth control pills, alcohol use. I'm a never smoker and was never much of a drinker, but now I'm passing on all alcohol too.
Nobody said chemo would be easy, in fact we all know it's probably the toughest thing to put your body through. I am 50% through my chemo and almost on the backside of the roughest side effects. Really if I can get a handle on this diarrhea next time before it gets severe I should be able to get through with minimal discomfort.
I'm really thankful to have all of you to chat with. I may not respond to all your questions and concerns on here, but I am reading them all, and I do wish I had more info and insight to share.
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One week out now, feeling better. How are you all dealing with dry mouth? I hate to complain about it, compared to all the other side effects, but yuck.
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SailCA,
Cold/Ice water tastes better to me than room temperature water. Sometimes I have to force myself to drink it, but I do feel better when I am hydrated. Dry mouth, lemon cough drops or ginger chews. No other drinks taste normal, except my morning tea.
Acupuncture worked for me, treatment was on a Wednesday, acupuncture on Friday afternoon. Doesn't hurt at all, I felt so relaxed. She also gave me tips on things to eat, oatmeal/grits, soups. Reishi mushrooms is supposed to be good for WBC. She put a small patch on my wrist for nausea and told me about Sea Bands. My next treatment is on Friday, I go back to acupuncturist on Tuesday, so I'll let you know how it goes this time. I will wear the Sea Bands to treatment and keep them on, you can get them wet. Another modality to try is reflexology, helped some also. The acupuncture can make you very sleepy though.
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I guess checking in once a week is better than not at all, so here I am. Last week was was pretty much a lost week. The diverticulitis darn near did me in but antibiotics finally started working and I felt pretty good by Sunday, the day before my next scheduled infusion. My oncologist decided to postpone that infusion for one more week to give me a little time to recover, so this week I am enjoying "sort of" feeling good, taking monster size potassium pills and finishing up three more days of antibiotics. My O did refer to me to a GI specialist, but that appointment is sometime in June, so I'm am placing myself on a low fiber diet (maybe a little high fiber once in awhile) until I know what is going to happen with the upcoming infusion.
Kipepeo, I know what you mean about the abdominal pain. You cannot hide from it.
Best wishes to all for a better April.
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For those who make smoothies using flavored oatmeal, could you please explain your recipe. I'm not much of a smoothie person and but I have found some recipes online. Just curious as to how you do it. Thanks.
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SailCA- I use Biotene toothpaste and mouthwash daily for the dry mouth. Working pretty well for me.
My head sores are clearing up with the antibiotics, so that’s good. They’re still irritating, but def better
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Aram, I am sorry to hear you are very nauseous on AC. I sympathise, I had AC/DC 18 yrs ago, and by the 4th treatment, I was literally sick from one treatment to the next. I was 42 years of age, and I had 8 treatments all up. Haven’t met the oncologist yet, to see what cocktail they have in store for me this time round.
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Hello All,
Treatment #3 yesterday, Fed Ex lost my Varubi meds, so they had to give me iv of some other nausea medicine, felt more whoosy. The nurse I had was so outstanding, I hope I get him next time. Bad thing is my hemoglobin is way low, if it doesn't go up they said I might have to get a blood transfusion. I wore my sea bands and I haven't felt nauseated, I probably won't sleep with them on, hands felt kind of swollen this morning and I have small wrists. Could be something else though.
Website for vitamins and supplements, tea, snacks at good price Vitacost.com Been using them for years, they send coupons for 10 to 15% off.
One more treatment and I see my breast surgeon, hoping I can get the mastectomy soon. I'm sure I'll have to get some kind of scan so he can tell what is going on. I do know that I have major shrinkage on the lymph node that was protruding, it is down to almost nothing! So ladies, do not get discouraged. Hang in there!
Carpe-Diem-I'm glad you went back to surgeon, otherwise you wouldn't have known about the cancer cells still lurking. I have Triple Negative also and it can be hard to detect, never showed up on mammogram and the mass hiding behind dense breast tissue, it took my lymph nodes getting enlarged to get help. Acupuncturist can help with that radiating back pain, that is intense pain, I had it on 1st treatment.
Take care everyone, hope you are all getting much needed relief from symptoms and hospital visits.
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Day 10 after second AC treatment. Today I lost a lot of my hair. I had already shaved and was prepared but still seeing lots of tiny hair on the shower floor was a weird sensation.
My anxiety has picked up as well and my mind goes to a lot of "what ifs".
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Aram - Take some deep breaths! We can only control what is within our control. In 2014, after my first AC treatment, I had a hair stylist come to my house and shave my head. And that was that, and I found it liberating! It was so awesome not to have any hair maintenance to think about. I think once the little hairs fall out, there will not be much to worry about. And guess what - exactly 3 1/2 months later, I had hair on my head. So it is only temporary.
As for the anxiety amping up, I don't know if you do yoga/pilates, but you might find it helpful. Also, because of the nausea associated with AC, my oncologist had given me a script for Ativan. So when I started overthinking things or feeling anxious, I took an Ativan. It helps keep nausea at bay (mentally) and it also helped with my angst.
You are not alone. We are all on the same journey with you.
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