Starting Chemo September 2015; join us!
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Hi all, just catching up on all the posts I missed over the weekend. Well I finally buzzed my head Sat and picked up my wig. I had my head buzzed at salon which provided my wig for free. The actual head buzz felt great and I didn't cry or break down. They put the wig on me right away and I got about a 1/2 hr in the car with it on before I felt nauseous and pulled it off it's just not me. It needs to be cut a shorter length so I may go back to the salon to have them trim it (they said I could call if any problems). I have been wearing scarves & bandanas.I admit it's hard to see myself in the morning with my dark circles and no makeup. Then I just smile at myself and I see I'm still there. Plus my bare noggin gets real cold/hot quick. (Thanks steroids). I did find some soft skull caps and cute hats Sunday at Target for $12.99 each.
This 2nd round of AC has been harder so far. Day 2-4 have felt icky with increased nausea, stomach pain, fatigue, and bowel issues despite otc meds. Oh yea and the nasty neulesta. At least I figured out how to manage that pain this round. I hope this week to feel better and actually feel hungry and taste food.
I look at how many of us are getting treatment in Sept and watch the list grow weekly. It is amazing to see how we connect, support, and care for one another thru this.
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- Hello ~ please forgive me for being such a newbie as I do not know the proper "terms".. This chapter is so new to me almost unreal in a way. I am dealing with so many issues that you have posted about and thought maybe you had some words of wisdom, or advise for all beginners..I am a 37 mom of 2 young boys 11 and 7 and one day in June found a lump in my right breast sitting on my couch of all places…as I watched a movie with Meg Ryan called "In the Land of Women" where she faces breast cancer herself. Sounds like I am telling some "story" however, it is not it is my reality now. At my first ultrasound in late June my tumor was 6-7MM and to date 2 lumpectomies. I now know my tumor was rapidly growing being the labs have come back combined somewhere between 1.8cm and 2.1cm so my diagnosis seems to be almost a perfect match to yours… All Breast Cancers I mean..Seems we are all in the same boat in one way or another ~ Breaks my heart to even type those words.. I am scheduled to start TX chemo 4 rounds this Thursday and was wondering if you had any advice, tips? I don't know what I am asking really ~ just anything we need to know before the first infusion? I feel so incredibly "in the dark" so to speak…. I have no clue what chemo will bring! I feel like everyone is so positive (which is so very comforting) and that I am not educated enough for this chapter…Anyone else feel that way?? Just going through the motions honestly. I will say... these boards and everyones experiences have made me feel less alone in the process. I thank you all
We are on this journey together!!! - Forever sending positive energy your way ll!!!! I do hope this finds you well ~
0 - Hello ~ please forgive me for being such a newbie as I do not know the proper "terms".. This chapter is so new to me almost unreal in a way. I am dealing with so many issues that you have posted about and thought maybe you had some words of wisdom, or advise for all beginners..I am a 37 mom of 2 young boys 11 and 7 and one day in June found a lump in my right breast sitting on my couch of all places…as I watched a movie with Meg Ryan called "In the Land of Women" where she faces breast cancer herself. Sounds like I am telling some "story" however, it is not it is my reality now. At my first ultrasound in late June my tumor was 6-7MM and to date 2 lumpectomies. I now know my tumor was rapidly growing being the labs have come back combined somewhere between 1.8cm and 2.1cm so my diagnosis seems to be almost a perfect match to yours… All Breast Cancers I mean..Seems we are all in the same boat in one way or another ~ Breaks my heart to even type those words.. I am scheduled to start TX chemo 4 rounds this Thursday and was wondering if you had any advice, tips? I don't know what I am asking really ~ just anything we need to know before the first infusion? I feel so incredibly "in the dark" so to speak…. I have no clue what chemo will bring! I feel like everyone is so positive (which is so very comforting) and that I am not educated enough for this chapter…Anyone else feel that way?? Just going through the motions honestly. I will say... these boards and everyones experiences have made me feel less alone in the process. I thank you all
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Welcome Shannon..sorry you have to be here but this is a great resource for support and information. We're all in this together.
Waiting for the diagnosis, prognosis and treatment plan is very difficult and you've made it this far. Now, the path to recovery isn't easy but doing everything to beat this is so worth it. How to prepare for chemo? Not sure there is a definitive answer. Preparing your home with post chemo products to help with side effects is the best advice I can offer. You won't feel like going out to pick up last minute items after the chemo. Stock up on over the counter products to help with constipation. I think someone had posted a list of what to have on hand. I found that useful. If anyone remembers it or can make one, that would be great. My brain is foggy these days..oh ya, expect that too
I found the steroid side effects are different for everyone. It didn't affect me the same as it did others, same with the Neulasta shot. I felt flushed and hot, taking my temp. often, worried that I was having a reaction. I looked sunburned on my chest. But it lasted only a couple of days. It was more like a flu bug and the stomach upset that goes with it. Just come on here with whatever ails you and one of us will come up with some options for you.
Good luck. We're all here for you.
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Shannon, so sorry you have to be here in the club no one wants to join but we are here for you. If you haven't already done it go to the first page on this thread and read the links the moderators provided. It's a good starting point. Be aware of the possible side effects of your particular type of chemo and have some basic supplies on hand to deal with them. Be prepared to be very tired (not just normal tired). Some of us have had severe side effects and others have been fairly minimal. Also, keep a daily log so you will know what to expect for future rounds.
My heart goes out to all of you but particularly to those with children at home.
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I've been preparing for the hair loss and finding the cost of headwear quite high. I found a link on youtube to make your own turban and I think it's brilliant. No sewing required. "The Basic Turban. Make it yourself Honey!"
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ShannonCannon, I think you will find these discussion board helpful. You will get support, information and lots of encouragement along the way. I hope you find chemo to be way better than you feared. I have and I am doing the TC regimen , 4 treatments total spaced three weeks apart for each one. Honestly the worst days and weeks for me with this whole breast cancer Diagnosis were in the first month. Just getting used to the shock, disbelief, fear and anxiety associated with finding out I had cancer. Nothing has been as bad as that. Not the lumpectomy I had or the port placement or the chemo or even looking down the road at a bilateral mastectomy after I finish my chemo compares with that. Once you get started on your treatment and accept the reality of having breast cancer and dealing with it things do start to look better. I think a lot of people on these discussion boards would agree with that. Try to keep a positive attitude and keep your expectations realistic and just take things as they come because this is one of those situations that one just doesn't have complete control over. Make sure you like your doctors and feel comfortable with them and never be afraid to ask them any questions you might have. Hopefully you will meet some caring, excellent, compassionate and very knowledgeable medical professionals in your cancer journey. I know that I have. Trust things will start to look better, brighter and more hopeful with each passing day. I have a feeling you are going to rise to this challenge with flying colors! Hang in there and take it a day at a time.
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welcome to our group ShannonCannon, I will put you on our (sadly) growing list, and don't worry about 'terms': you are welcome here and one of us. Finding these boards was one of the best things I did early on, and we will be here for each other. I will also try and dig up the list someone made, and re-post. My best advice is to keep track of your questions for the MO (Medical Oncologist, who will oversee the chemo), and ask them at each appointment, and to take the medications you are given for side effects. I used over the counter stool softeners the first few days of chemo for constipation; bought imodium for diarrhea (which you will often see referred to here as the "Big D") but while I've come close I haven't needed it yet. Claritin (NOT Claritin-D) helps for the bone pain that many get from the neuplasta or neuprogen you may get to counter the loss of white blood cells from chemo, and OTCs pain relievers such as advil or aleve helps too. Look for generics OTC with same ingredients to save money.
Lots of the women here have young kids and I am sure they'd be happy to answer your questions. Mine are adults.
and yes, read the introductory materials and bco articles related to chemo. If you add the chemo regimen you are getting to your treatments in your profile they will send articles related to your treatment plan.
Good luck and we are here for you! HUGS!!!
Octogirl
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Hi shannon! I also have 2 little boys ages 4 and 6. My husband has been a trooper and stepped up for me over the last couple weeks. I finally feel human again today (day 14 post 1st chemo) I just hope the next round doesn't change up side effects on me. I think the unknown is the worst part of this. I don't deal well with the unexpected.
Anyway, good luck and feel free to ask question or just dump.
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Alright, ladies, my hair is starting to abandon ship today. It's fascinating and depressing at the same time.
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So sorry AnnieB! I do appreciate the update: since I am on the same regimen and two days behind you, I am wondering if that means I am a day or two behind you on the hair as well. So far it has gotten limp but no loss. I have an apt with my hairdresser for a buzz cut tomorrow evening, but if it hasn't started to fall out by then, I am thinking I will just ask for a trim (it is already short). Any thoughts on that, anyone?
Hugs, Octogirl
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Every time I run a hand through my hair I come up with ten or so strands. As the hours pass it's more and more strands. I pulled out the Clippers but haven't worked up the courage to shave it. I cancelled an appointment Saturday because I just wasn't ready. I'm thinking I probably won't be able to do it until there's an obvious bald spot.
Octogirl you haven't noticed any hair loss at all? You're just a day behind me. I wouldn't shave it until some hairs are leaving. There's always a chance one won't go bald even if it's a slim chance.
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Hi Shannon and Annie - sending special love today to you and all those with littles. I am so nervous about managing my dose dense 4 rounds of red devil over 8 weeks. So many racing thoughts and fears.
Xoxo!
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Hello everybody,
I'm a 33-year-old engineer, wife & mom of a 15-month-old (who started day care right before my diagnosis... yay...) and 2 nosy cats. Additionally, my brother announced he's getting married on 31 December in Virginia (I live in the Seattle area). My port was placed on 1 September, I started chemotherapy on 16 September. Looks like I'm on the 20 week program... 4 x Dose Dense AC + Lupron, then 12 x weekly Paclitaxol (why didn't I get the 4x???). I'm 5 days in, still have my hair, feel like my tongue has been burned/throat sore (heart burn?), am experiencing hot flashes, and my husband & son have a cold.
Right now my big anxieties revolve around - how am I going to feel over the next 20 weeks? Can I do my job? Do I need to pull my son out of day care and get a nanny? Am I going to be perpetually sick if I don't? Can I go to my brother's wedding in week 15/16 of chemo??? Even if the airplane infection doesn't kill me, will traveling 3 days & 10 hours straight with an 18-month-old finish me off?Thanks for listening!
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AnnieB, I started noticing strands and then a couple days later bigger bits in the shower. I got a short cut and it lasted about 5 days. I wanted to get it buzzed off on the Monday after 6 days but my hairdresser was away. I had a small really thin, shoulda admitted it was bald spot by Monday, and by Wednesday a big bald spot in the back and one in the front. I felt soooooooo much better when I had it shaved.
And this weekend, days 14-16 post round two, all my stubble is coming out in big batches... I've nearly achieved cue ball status :-) it's a little itchy too. I think it's the stubble under my bandana.
@LindyC, I'm not sure where I posted it, but I found lots of nice scarves on whatever they call 'sale' for $3-5 ea. I'm not sure where in Ontario you are but i'll bet the price is the same in your neck of the woods. I'm in the GTA.
TTFN ladies, round three for me this Friday.
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Red devil. That's a good name for this stuff. Finally managed a decent night's sleep last night (2 ibuprofen and 1 ativan) and starting to feel semi-human again today after 3 miserable days Friday - Sunday and 3 sorta yucky days before that. Actually have a little bit of an appetite and water tastes almost normal today, thank goodness. Hope this week goes better so I can take care of some work and some chores.
I read somewhere that I should not take ibuprofen while on AC. I really don't like tylenol and it doesn't work well for me anyway, but should I be using that instead? I know my MO prefers it but she seemed to reluctantly agree to the ibuprofen.
Hair is going quickly now, 3 weeks after first dose. Time to just get rid of it, I think. Gonna be a cold winter.
I'm in awe of you women with small children. I am, or was, a relatively young 65 and the thought of trying to deal with such additional responsibility during all this boggles my mind. My girls grew up a long time ago! I'm afraid I'm not going to feel so young by the time all this stuff is over.
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Hi DL. Welcome. I have 2 small kids and they gave me a cold last week. I didn't end up in the hospital but that's always a possibility. My grandson was born last Thursday and I opted to miss it because the plane ride was just too big a risk.
I'm on TC 4x and I'm 13 days out from my first dose. Today is really the first day I've felt normal. My hair started coming out today.
I had throat, mouth problems and was prescribed magic mouthwash. Heartburn was bad so I took Nexium for a week. Hot flashes come and go.
It's hard to decide about travel. I just opted out. I know some other ladies on here still work full time and are ok. I think the side effects are really just so very individualized.
Good luck!
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@ShannonCannon: My husband took me out for sushi (my favorite!) just in case I needed to get on the all-cooked foods diet or my taste in food changed. For the first few days after chemo, I mostly couldn't tell that anything had changed though thanks to the steroids and anti-nausea medication. I agree with some of the other sentiments here, take a preventive stool softener the same day you get your treatment. Keep taking it. Who knew chemo could be such a pain in the butt.
@Annie: Thanks! I can't imagine doing this with more than one kid to juggle. What is this magic mouthwash? Sounds like I need to email my oncology team with an update.
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Annie & Octogirl in regards to hair loss I noticed it coming out in clumps when I washed it last Tues 13 days post 1st chemo. I had my 2nd AC last Wed and after that it was clump city. It fell out all whether I touched my head or not. And it was all over the place. My scalp hurt even though I used a satin pillowcase. I was afraid to wash it again after that and had it buzzed Sat. I heard people say that you know when it's time to buzz and they were right. The buzz felt good and didn't hurt. I already made peace with the hair loss- it was not my beautiful blonde hair once chemo started. It's a hard look to face but in regards to whether to cut short first it depends on your comfort level and I guess the type of chemo to see if it will be a total hair loss. Hope this may help some.
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magic mouthwash is a compounded prescription. It has mallox, benedryl and lidocaine in it. You can swish and spit or swallow if your throat is bad. I got thrush and it cured it in 1 day.
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Welcome to all the new ladies. Sorry you have to be here, but so glad you found us. Everyone here is so very helpful and supportive.
I start chemo tomorrow, and I'm just a mix of emotions today. My insurance pays for a wig, but I had to drive an hour away today to the shop to get fitted. The ladies there were so awesome. They ordered it and I will go back to make sure it fits in about a week. So, I guess that means I have to stick to my guns and get buzzed this week. It feels kind of weird getting my "chemo bag" together. Almost like I'm going on a trip that I'm dreading, but at the same time want to get over with. My port is still sore but its better than it did a few days ago. Ugh. I'm just in a fog today. Going to the Look Good Feel Better class tonight. I'll let you know how that goes.
Hope everyone is dealing better with the dreaded side effects. Hugs to all!
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I am 32 and have 3 small kids (7, 5, and 3 next month). I have set up a meal train starting when chemo starts for dinners M-F so we won't need to worry about all the meals. Not every day is filled, but something is better than nothing.
I will be going out on disability once chemo starts. We will leave our toddler in daycare to keep his routine normal and our daycare lady will have the energy to keep up with him.
Port went in today. The upper incision site sucks. At least I got some good meds to help deal with it.
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So, maybe I have a 'thinning' spot on top but I've convinced myself it is a bald spot. Really rethinking the idea of buzz cutting tomorrow and thinking, like you, SouthernCharm I will wait in denial until I can see clumps in my hands....at this point even an extra week with hair would feel like a gift..
Octogirl
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It Is LOL or you would sink into crying sobs. I'm obsessing over every loose strand. I'm starting to think if I shave it then I'll stop stressing over it. I'll decide after the kids go to bed.
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didn't do a meal train, but I did stock the freezer before chemo started. I made a couple months worth of stuff my husband can just microwave. On my feel better days I'll cook extra and freeze that too.
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I'm at day 11 and my hair is really droopy and limp. I skipped my last haircolour and roots are now quite noticeable. Just ran a few fingers through my hair and came away with 4 long strands. Did that yesterday and got nothing...and so it begins.
I can see my scalp a bit more but maybe thats because I'm really looking at it. I guess its time to pick a date to do this. In the meantime a baseball hat will cover the top for now.
Molliefish, I'm in the Hamilton area so I'm not far from you in the GTA at all...Go Jays Go! I'm going to a couple of more regular season games and we managed to get post season tickets. I hope I can make them all as I'm a huge baseball fan. Hopefully, there are no Yankee fans on here..lol
SouthernCharm..the nose hair issue concerns me. Winters here can be brutally cold and without nose hairs, it's going to be awful. Thanks for the heads up. I will be sure to cover up over the nose with scarves when the temperatures drop.
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Found this site extremely helpful when I did chemo 12 years ago. Starting chemo again this week and love all the positive, encouraging information that everyone shares. Makes me feel so much better and not alone. Stocking up on all the things to have on hand. Thanks again for sharing!
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Hi everyone! It is amazing how our 'club' keeps growing! Kind of depressing but glad we all have each other!
Don't be afraid to take the Ativan. It is an anti-anxiety drug and I have actually had an Rx for it for a few years. It is just there in case I get over anxious and turn into a b*t*h! It just relaxes you and works because if you get anxious about the nausea it makes it worse. I do not think it would cause headaches - I would think it may make them better because you relax.
I took a dose this morning before heading to my first infusion. As my DH said, "If there is ever a time to take anti anxiety drugs, this would be the time!"
I have my cold packs on my feet and as soon as the real stuff starts, I'm chilling my fingers!
My heart goes out to those of you with little ones. I pray you have help and that friends have stepped up to care for your family!
Hugs!
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What are you all eating? I'm really struggling with food.
If I don't eat I have terrible stomach pains. If I do I generally feel better, but it's getting the food in/down that's tough.
I'm drinking an ensure protein drink right now just to have something. Lots of things just smell really bad and turn my stomach.
Bad day number 2 today.
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Right now, I'm eating some oven baked sour cream and onion potato chips and chugging water like crazy. (I heard salt+water helps with the mouth/throat soreness). I feel like I'm fighting through a Sudafed-induced haze. The snacks they keep at my infusion center include LOTS of crackers (also mac & cheese and lime Popsicles). I noticed this morning my Starbucks Eggwhite Spinach Feta Wrap wasn't quite as tasty as it usually is, but it was still very edible. I think I'm almost to the point where I need to avoid tomato or anything acidic, though. I plan on stocking up on Ramen noodles. *hugs* I've always had a bad sense of smell, that may be my saving grace here.
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I'm living off coffee and chocolate milk shakes. I've lost 10 pounds in 2 weeks. I just have zero taste buds and after a few bites of food I'm just like grossed out and can't do it.
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