Starting Chemotherapy March 2018
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Hello All 😄
I am on day 8 of Cycle #1. Day 1-3 very sleepy. Day 4-5 felt much better (with the exception of constipation) ready to do some laundry and return phone calls from Family & Friends. Drank some coffee and no longer constipated. In addition, I had a headache but manageable with Tylenol. Now dealing with the big D with abdominal pain.
Day 8 abdominal pain and constipated again back to using Colace.
Has anyone experienced BM issues & abdominal pain? If so, how did you resolve? If it wasn't for this I would be a happy camper! ☺️
BTW I couldn't have got thru this without my wonderful husband and his magnificent support.
Thank you in advance for your feedback. ❤️
Thanks again all for the wonderful support you provide in this forum.
Best Wishes to all of you.
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Good tip on not buzzing too short, which is what I have done and makes sense that the stubble would hurt the head. Too late for me but may help others.. I suppose I thought the rest would fall quickly and I would be baby bald within days. Not the case for me.
Thank you all for your support.
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RVS, try tweeting your diet during chemo? Did your doctor say it was ok to use Colace? My onc nurse said if I experience any bowel issues to use Senekot. I told her I have dulcolax at home and she said not to use it. She wants me to use something natural because my liver has enough medication to process during this time and every drug i take has its own set of possible side effects that Imay be more susceptible to during chemo. One of the side effects of Colace is D.
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Hi Everyone! My first chemo, which was taxol and herceptin, was on Tuesday. Starting yesterday, Saturday. I've had a severe headache and still have one this morning. I've taken Motrin which helps a little but not much. Has anyone else experienced this? It's starting to worry me. I did already have a brain MRI and it came back clear. Thank you for your thoughts on this!
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Hi ladies! Day 4 for me of Round 2 TC - my day 3 was a midday crash with literally no steam - slept about 13 hours off and on. Last round the crash was later on day 3 and day 4 was truly icky, this time it's not as bad today (so far) but not sure if the timing is what's making the difference. Staying on the Claritin this time to try and avoid back spasms that attacked days 6-7 last time - and taking Colace - not really helping yet, but hopeful it will soon. Not much of an appetite but drinking as much as possible.
We all need to vent at times. I think it's important for us all to remember that despite how we feel right after the chemo - the meds, steroids, etc. make us feel "better" than we actually are, and so we push too hard, or just do too much without realizing it. When you have the chemo in your system it's supposed to do its job, and its job is a tough one. I added visualizing (sorry if this is too touchy-feely!) but pictured the Cytoxan as winged Valkyries and then the Taxotere as the rough foot soldiers. Fair to say for all of us, during chemo we must take care of ourselves first.
On the germ side - I carry hand sanitizer, wipes, and a tiny disinfectant spray. If someone is sick near me in a line I move away very fast - we need that balance - live your life but be careful - precaution is a good thing. Today will be a lay low day. But staying away from infection is huge, and I have softly but gently turned down requests to visit from nieces who all have sick kids in tow. Sorry - Auntie's not available right now.
For anyone who feels you're not getting enough support at home please speak up - this is not a strong dose of antibiotics. Be a firm advocate for yourself. Shout out for my husband and 15 year old son - they have been awesome. But still sometimes need a reminder - yes, it DOES take me that much longer for me to get ready - and you know what, I'm going to take that long! - and yes, please plan on making/buying dinner again tonight. But I am fortunate in that regard - and my son has really been a gem - didn't know how he would ultimately deal with this and he has been so good. Also living with my 88 year old mom, and that is another challenge - who takes care of who? But she loves to do laundry - still thinks I never learned how to do it properly - and so I let her do it when she can - it makes her feel like she's helping.
Yesterday my son changed the big number on the chalkboard in our kitchen to read 50%. Every day is a step forward for each of us. Some days are harder, some will be easier. Look for joy in the littlest thing - each day of the journey I am amazed at how much joy I find when I take the time to see it, and a bit wistful when I think of how much I may have missed in the rush. Take the time to hug - to cheer - and to support.
We only know each other via posts, but I feel humbled to be part of such a remarkable group of determined women. Stay strong - we are all here for each other.
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~May07 Thank you for your response. I was using Colace prior to BC due to constipation issues (without D). Onc advised to continue use of Colace that it will not hurt me to continue to use. My diet since first Cycle has been basically bland. 🙁 This morning still have stomach cramps 😢 and thin stools. I’m trying to wait till Monday. Otherwise, I would need to go to Urgent Care. Avoiding that due to germs! 😷
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RVS hope you feel better soon...your halfway there!
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May07~ Thank you! I hope you are doing well.
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RVS - - I have 2 ideas for you. Drop dairy from your diet as you might have become lactose intolerant from chemo. The enzymes to digest lactose are secreted in the intentinal brush border but that area is one that is affected by strong chemo so even if you could digest dairy products before (which many people can't anyway once they're past childhood), you might not be able to now. That would cause diarrhea & cramping.
The second idea is a bit contradictory - add yogurt. But if you're lactose intolerant (or vegan like I am) there are non dairy yogurts on the market (Daiya brand is one for example). My team wasn't really keen on probiotic supplements but was ok with yogurts fortified with cultures. If you can't find a dairy free one, maybe just drop all dairy except one serving of yogurt / day ? The good bacteria can get wiped out by the chemo and by diarrhea and restoring that balance to the gut might help.
Also be sure to monitor your temperature as abdominal discomfort can be a symptom accompanying febrile neutropenia.
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moth~ Thank you very much! Sounds like great advise. I will definitely try that starting today.
BTW, I have not had a fever
Wish you well!
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Hi, I begin TCH this Wednesday. Anybody else with the same? I’ve done my shopping and doing my best to stay calm. This thread has been so helpful and reassuring
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Tid2017, my onco team told me to stay away from Motrin, and use Tylenol. Might want to check on that. I think it's a potential liver and blood thinning issue, but not sure. Maybe it was just after surgery. I hope you call an advice line about that headache.
Day 4 from chemo, day 3 from port surgery. Not a good day thus far. Stomach cramps, the big D, and feeling wiped out. And chemo acne has begun. I look like a teenager with whitehead zits on my face. At least the port area feels better and I can take the bandages off today. Tomorrow will be a new day
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Moth
Thanks for the advice on watching out for febrile neutropenia. Just got my blood work result back in prep for round 2 chemo. Neutrophils are low, WBC borderline. I do have upper abdominal discomfort and i have been thinking that was result of chemo SE. or good old acid reflux..
Also have been having some random pain on the bra line near by rib cage. Now will definitely bring this up with MO. Seeing him Tuesday. so chemo may be delayed due to low Neutrophils, i guess.
Ladies,
Come cross this site about the diet for Neutropenia. 2nd one is for Blood C but also covers diet for Neutropenia. I did not know we should avoid eating raw fruits and veggies till reading this.
Please share any food and diet tips during chemo...
http://www.cancernetwork.com/cancer-complications/...
https://bloodwise.org.uk/sites/default/files/docum...
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NVDobie - I believe it depends how low the neutrophils go and what the platelets level looks like too. If you look at the protocol page & find yours you can see the clinical guidelines here; they say whether it requires a dose reduction or delaying for a week or both etc. For ex for my protocol the neutrophils only have to be 1.0 or over (which is still technically low) http://www.bccancer.bc.ca/health-professionals/cli...
After getting febrile neutropenia post round 1 I was much more careful with everything, including diet. Until my levels went back to 2.0 I did not have raw fruit or veg except thick peel fruits like bananas & oranges (organic, washed, peeled onto a plate without touching the fruit, then wash hands before eating...)
I listed some of the other preventative things I do on this thread: https://community.breastcancer.org/forum/69/topics...
It's probably going overboard but for me, being in hospital on IV antibiotics was no picnic and after I read the potential for complications from these infections (including sepsis, coma and death) I decided that this level of paranoia was well worth it for me. Honestly it also gives me & my family something concrete to do, kwim?
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Hi Everyone,
Tomorrow is my first day of chemo. Getting really nervous.
NVDobie, I believe that I bought everything that is needed to ease any side effects I may have. Thanks for the support! I will be off from work next week to get the rest I might need and to deal with side effects.
I cannot wait until I am over this first hurdle.
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Hello everyone!
I have been following this inspiring group (as well as the Feb group) and want to thank everyone for all their posts as it has really helped me enormously during these last few weeks of shock, anxiety, and sadness. Through all of your helpful and supportive posts I now realize I am not an anomaly, not alone, and able to move forward much less fearfully. I received diagnosis after MRI on 3/12 IDC ER+/PR+Her2-(FISH), 2.7cm and will be starting neoadjuvant DD chemo tomorrow 3/26 AC (8 weeks)followed by Taxol(12 weeks). I am 49 yrs old and thankful to have a very supportive husband, 12 yr old son, 15 yr old daughter. I am a registered nurse and normally work in high acuity hospital setting, which has in some ways made it harder for me to be "the patient" and fueled some of my anxiety. I have always been very fit, healthy, and its difficult to even describe the shock I experienced---although I'm sure everyone here can relate . I have decided to see this as a time to nurture the mind, body and spirit through a health challenge (albeit major) where I will try to focus on the positive/longterm goal. As I know this will not be easy at all I look forward to come here to share, support, and sometimes vent. Got my port last Thursday, prepared by cutting my long hair above shoulder length (couldn't face anything shorter yet), bought head coverings, have a wig I actually really like on hold, stocked up on healthy foods for chemo, meds, acupuncture treatment yesterday etc---just about all I can do, now just going to go for my first treatment tomorrow, nervous but hopeful it won't be too bad...
Best Wishes to all!
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Does someone have a link to the shopping list that we should have certain things on hand at home before starting chemo? I suddenly feel unprepared.
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RVS, I have the same issue. NP recommended Miralax, which I was scared of, but the symptoms were so miserable I decided to try it. It was tasteless and textureless, and I put it in a sort of latte. It's slow to work (1-3 days), but I did get a little relief within hours. Waiting eagerly for more significant results.
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Weird side effect today. This morning, I had some chai tea. A couple hours later, I had extreme burning on urination. We called the doctor on call and he said to come in tomorrow to be tested for a UTI and meanwhile, drink some cranberry juice. BUT... a couple hours later, side effect all gone! I notice that my mouth has become more sensitive to spices and I can't tolerate even things like black pepper. The tea didn't bother my mouth, though. Strange, strange. Anyone else have something similar happen?
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Dear mLghtn,
Welcome to the BCO community. We are sorry about your diagnosis but so glad that you reached out to our members. We hope that you will find lots of support and helpful information here that will ease your way. Good luck tomorrow and keep us posted on your your treatment goes. The Mods
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moth
You are awesome. thanks for sharing the link on protocol. My neutrophils is at 1.4, so could be looking at 75% dose plus daily Filgrastim shots.
Also thanks for sharing the preventative things we could do. I agree with you 100%, better safe than sorry. I am going to follow your list. :-) I have been slacking off on being careful as the cycle went on, assuming my body is recovering well until i read my blood lab results online. good reality check really.
Wildcolonialgirl
Counting it down! Great tips and advice. learning asking for help is an adjustments especially knowing it may take some time.Mu husband took some time off to take care of me, i am hoping he can get back to work soon so he also have some normal social interaction for himself besides being my nurse 24-7.
lavettetn
Let us know how it goes for your tomorrow. Don't hesitate to ask nurse for help. :-)
mLghtn
Welcome! we will be here to support you and each other thru this journey. I have learned a ton from the posts from everyone as well.
Everyone
Marching on!
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NVDobie - I was in that Oncotype gray area like you and had to make a decision on Chemo also. I think we all make the best decision we can with the info we have.
I am 16 days out from my first chemo treatment and feeling pretty good. The only negative is that my hair is falling out..well actually it's pretty much gone. It's weird it just started on Friday and tonight I'm practically bald. I did have my hair cut shorter last week which helped, but still made me a little sad to see it come out so quickly. Fortunately I'm prepared so just need to figure out how to style this wig for work tomorrow. Thank goodness for YouTube!
Stay positive! We will get through this!!!
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Good Morning, I am day 14 past my first infusion and today I woke up feeling pretty darn good. I'm hungry and some things are starting to taste almost normal, I have some energy and my vision has cleared up. My next infusion is 10 days away and I'm grateful for this time to feel okay again.
I do have one SE I could use some advice on. Nose sores and bleeding--my poor nose is agonizing to blow and yet it wants to run and occasionally bleed all day. I tried a saline rinse a few times, but that seems to make the bleeding worse. Let me know if you have some tips.
Thinking of all of you, hope everyone has a good week.
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Good Morning to all you brave women. Good luck to those having their first treatment today. Let us know how it goes. I have my first treatment TCx4 on Wednesday morning. I was one who was totally caught off guard with getting chemo. Before oncotype I was leaning toward no chemo. Afterwards lol oncotype was 54! And pretty much a fail they said. It reported my er as negative instead of positive like it should have. That really soared the number as they don’t even run them if you are negative, at least that’s my understanding. But due to my ki67 being high at 70% and grade 3 they felt I needed to do this.
I’m trying to stay positive but it’s hard. I got sick last night but i think it is anxiety. I’m going to buzz my hair tomorrow and my girls are going with me for support. I have to say I am so totally scared to death. I feel like such a coward. I’m praying for all of us to get through this difficult time. We are going to band together and give support to each other. I know we can do this! Thank you all for all your tips and advice. I do have one question. While you are getting chemo can you walk around or do they make you stay right there
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Hi everyone -
Sidalee - I always suffer from "dry nose" during allergy season spring and fall, and so when I started to have some nose bleeding, I started my usual routine - taking some Neosporin (or Bacitracin, any kind of antibiotic ointment), and putting it up inside each nostril. It helps with keeping the area moist - adds the germ-preventive layer - and it also helps heal and reduce bleeding. This is a tip I learned a long time ago from a friend whose mom is a nurse - and it does seem to help quite a bit.
Quiltingnut - may depend on your center if you can move around. Mine allows it (have pole will travel) but they encourage short trips, no roaming the hallways. Hang in there! CT is not a long day and what I have done my two times so far is get the Cytoxan, and then take a short walk/break before the Taxotere. As so many of our group note, ask your nurses - they are so good, and work with so many patients, that they really are huge resources. The teams who will be with you want to help reduce stress as much as possible. Regardless of what our SE's are, I think we all mostly agree that the caregivers who oversee the infusions are pretty great.
mvdobie - hope your numbers continue to go up! Not sure if you are on steroids - the Decadron which I get pre-day and then days 1 and 2 increases the neutrophil count a bit as well. You could ask your MO or NP?
GBT1lady - enjoy the good days! They are a nice reminder that this too shall pass.
Wishing everyone the best this week and sending hugs.
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Hi Ladies,
Thank you for all your posts, it sure is helpful to be able to see what everyone else is experiencing. I started neo-adjuvant chemotherapy March 16th. My plan is AC dose dense x4 and then Taxol x4. Every two weeks. I am day ten today. So far, everything has been ok. Lots of sleep in the first three days, a little tummy upset, some heartburn and a slightly sore mouth. All manageable. My energey came back day 7 which was great. Last night I noticed that my scalp was really itchy, it still is today and I have a strange sort of burning around my ears. Is this a sign that my hair is likely to start falling out? I had it cut short last week, but, honestly, not sure if that will help when it does start to fall out :+(. For those of you ahead of me, how did your hair start to fall out and how long did it take?
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Quilting nut... Use a #3 attachment to buzz off hair. Leave it a little long or else it will be sore to lay on and etc if it's too short. If it's at least clipped using a #3 the hair can lay flat or it's not so hard on the Scalp when you lay on a pillow or whatever... Etc.
The wig place advised me on this... 😁
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Hi all,
Waiting to start chemo shortly, thankful I have this site and the many positive posts to distract and encourage me right now!
Sidalee— Another option, thiswill sound weird but I read that the vaginal moisturizers are also good to use in the nose for chemo and dryness, just another mucus membrane, and it shouldn’t affect normal flora.
Quiltingnut—I totally relate to your anxiety, my tumor also is a grade 3 and has a very high ki67 at 85%! It really freaked me out to think of it growing there the last 2 weeks waiting to get port and treatment started. It is also the one thing that is having me look forward to start the chemo (still nervous of course). Apparently chemo does very well in killing the rapidly dividing cells of high ki67 tumors and that is why my docs have me doing neoadjuvant chemo. So we just have to know it’s all for the best outcome and stay positive!
Tlow990– Really appreciate your last post as I’m about to receive AC shortly and it was reassuring to hear your first treatment wasn’t too difficult with SE’s. I was also wondering if you know why they are having you do only 4 of taxol? I have to 12:(
Sending positive vibes to everyone
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Oh, boy, I never post or blog on sites, I have been peering in from the outside for a month or so now, since a friend of mine turned me on to the site.
The info has been so helpful and I don't feel so alone in my own struggles when I read what you are all going through, it helps… Wow it's been 2 months since the double mastectomy, unfortunately after an anti-biotic I got C-Diff that put me back in the hospital for 7 days, and it's taken nearly 3 weeks to feel 75% better. Starting A-C chemo tomorrow and getting my bag ready, so I was reading online what to bring. Got a port last week, and felt so achy like I had the flu but it was just the side effect of having the port put in. What a path to be on, but so glad you ladies are here to share with. All the best to you all.
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Tlow990 - My scalp began to tingle and become tender a few days before my hair started to fall out. Keeping your hair short does help.
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