Starting Chemo in April 2014
Comments
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Sharon, yes every three weeks for 4 rounds.
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Hi ladies!
I was MIA all day and it looks like I missed a lot! Hubby and I had errands to run and then we were off to the airport to pick up our middle daughter. She flew in to stay with me this week for my first chemo, as my hubby has to leave tomorrow for work. He won't be home until Saturday.
Anyway, darling daughter, who is expecting a baby in June, wanted to be here for me. 
She knows her dr won't let her fly across the country again until after baby comes in June. But we know that isn't likely to happen, as this is her third. LOL She is so sweet and determined to keep my spirits up. Had my blood draw today, and tomorrow we are heading out to get all the little last minute things for my chemo bag. ColdinCanada - Thank goodness you are HOME! Yay! I'm sure your kiddos were thrilled! So did they ever figure out the source of your infection? Let's all give a round of applause to nurses who are nice AND listen!
Swissmiss - Sorry you had such a rough start. I will be praying for your journey to get easier.
Sunshine - Sounds like you had a bit of a rough go there too. Having things to do and kids that need your attention will hopefully help you out. I see you are in Q-town. I grew up in PA, and lived many years in that area - Coopersburg!
ChrissyLB - Love the photo of you with your family! I know they must be a source of strength for you.
Footballnut - I understand your fear. I will be alone quite a bit during my chemo, as my hubby travels for work. He is going to try to be home for infusion days, but it may not always work out. I have a feeling I will be leaning on a lot of my friends for support. We can commiserate together.
Everyone else that I missed-I'm sorry. I must head off to bed. I'm so glad that I know you guys are all here to listen...even though it sucks that we have to be a part of this group!
Hugs to all, lilyrose53
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ColdinCanada - so glad that you are home and away from the stinky boy!! Did they let you keep the big girl potty chair? So glad you kept your sense of humor through that and finally got a good nurse to listen to you. I think that is the worst thing when we know our bodies and basically know what is going on but no one wants to listen.
Footballnut my friend - if we end up with the same start date I am gonna get your telephone number and text you stupid stuff all day long - we are gonna beat this together.
Swissmiss and sunshine - hope your rough starts get much better.
I feel like such a heal getting a second opinion on this - I REALLY like my MO but there is this place in my mind that keeps saying - something isn't right about this and I have to deal with that place or it will drive me crazy. My MO called me (himself) not the nurse or PA after he got the message about the delay due to my healing issue and was SO SWEET - he was concerned that I felt up to getting the port and told me if I needed to to delay that too - I couldn't bring myself to tell him that I am getting a second opinion. I feel bad - ughhh
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ColdinCanada-HOORRAAAYYYYYY You made it through and now safe and happy at home. Congratulations!
mmtagirl- Welcome- Looks like you and I have the same regime also. Your a brave lady fighting for our future sisters.
Linda505- Hang in there! GO WITH YOUR GUT! There are so many options so much info out there and all of us here for you. Don't tell him you want a second opinion. It is your body. If something doesn't feel right then do what you need to do! We all battle with so much and it could be your MO isn't listening or it could be your worried or God knows what! What is important is to calm your nerves about the experiences your going through. Stress is a major factor in all of our recovery. So go get that second or third opinion find a way to relax yourself and embrace this healing process. We are all here for you.
ChrissyLB- Love the pic! Hope you are feeling ok today. Fluids and small meals. Don't let yourself get dehydrated. This road sucks, but it is so much easier when you keep a lil something on your stomach and drink lots of water.
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Thanks so much for sharing your experiences. The good, the bad, the ugly, keep them coming. Y'all help me feel less alone and give me hope and strength.
Cold, I am so glad you are back home, and, as Linda said, away from that stinky boy.
Linda, good for you on that second opinion. Go with you gut for sure. Good luck with your port. I got mine yesterday. It was out patient surgery so the procedure was easy, but I am still trying to figure out if my surgeon punched me in the shoulder before or after he placed the port, because that's what it feels like.
Has anyone come across a list of standard chemo schedules for different tumor and hormone stats? I'm scheduled to get sooooo much (4AC every 3rd week, followed by 12 taxol weekly) because of my high oncotype and ki67 scores. My doc assures me that this is standard and I trust him, but even so I'd like to see something more.
Also, what are y'all doing about your hair? Are you cutting it short before you start? Or waiting? I've got long hair and am thinking of going for the pixicut before my start date. Are you planning to wig, hat, scarf, coldcap? Now that the port is done hair is my new obsession.
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Blueberry...I haven't had my port placement, but have moved full on to hair obsession! I am looking into cold caps, I just am a little hesitant due to SE's, severe headache/nausea. I'm not sure I could handle that. We have discovered my options for anti-nausea meds are limited, several don't work for me for some reason. Also, living in Central Il, I'm not sure where I would be able to get them. Also, looks like I won't start until May due to the Staph inf.
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Blueberry - I am going to cut it this weekend with my toddler who is most worried about my hair. I didn't coldcap so I bought a wig and some cute hats/scarves. I have long glorious hair which has been my security blanket but it is time for a chemo motivated change. I am thinking a short bob like my wig until I shave it off at home.
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I have fairly short hair now - but plan on getting a pixie cut when I start chemo - then shave it when it starts falling out. I have a wig which I may wear at times but will most likely wear a scarf or hat instead most times. Unfortunately I do not have pierced ears as before all this I didn't like holes in my body LOL (isn't that ironic) so I will be looking rather boyish I am sure - oh well . I hate having a cold head so a coldcap is not for me but I am gonna try to ice my hands and feet - for the neuropothy issue - I don't really like cold hands or feet either - but I will give it a shot
This is me and hubby and my wig
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Bleberry4 - I am getting my "pixie" cut today. The week before my diagnosis I cut eight inches off my hair. My family was pretty shocked at that, but it had gotten so long I needed a change. Now my hair falls at my breast line, and I will once again shock the family with my pixie cut. They all know I have an appointment today, but I haven't shared my plans exactly. After all I have to deal with it! I have some caps that were donated and available for free at my infusion center. I am not thrilled with those. I purchased some bandannas for a "biker" look, and I have a few hats. I am saving my hair for my eleven year old at her request. I am actually excited about another transformation into the "new" me. I also have a "look good feel good" session scheduled. You should look into that if you haven't yet. They give you free "expensive" makeup and teach little tricks. Best of luck in your decision process!
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Mikishelley, I sure will, I have my water bottles loaded and ready, going to keep count as my chemo nurse said the minimum to drink is 3 liters a day, but I think it should be more....Thanks for the info
How much water do you all drink daily? I don't want to over drink.
Chris
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Not sure if I will be starting chemo in April or beginning of May, but have been reading this thread with interest!
This is the next step of unknowns, so it helps to hear how others have dealt with the SE, timing of them, how bad or tolerable.
Sounds like I will need to stock up on various meds to counteract the SE and that I should take them ahead of time as well as drink plenty of water and keep something in my stomach. Make sure I have a good meal before the infusion. And have also heard to stock up on tissues as the loss of nose hair will cause the nose to run non stop.
Hair loss.... Isn't it weird that most of us are so consumed with the threat of hair loss given that we had this insidious disease!?! Should be one of the least of our worries, but turns out to be such a big deal. I guess we can cover up misshapen breasts or even loss of one or both breasts, but our HAIR has always been "out there" and so visible.
I was supposed to get highlights and a cut tomorrow (regular appointment), but have moved it to next week. Will probably not get the highlights and am thinking of a pixie cut as I currently have shoulder length hair. Will depend on the MO visit Thursday.
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Chrissy LB - I still have my insulated cup with a straw from my mastectomy. It is a twenty ounce cup and I go through 6-10 of them a day. I think the straw is the kicker. Everyone drinks more and quicker through a straw. Right?
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Linda - your wig looks cute. Just starting to think seriously about the hair issue, and ordered a few scarves and hats. I wasn't all that concerned, then realized since I don't wear make up or earrings, and am already missing most of my right eyebrow from a skin cancer surgery - that I will look like an old man
. Oh well, all I can do is laugh, and take it a day at a time once the hair goes.I did call to reschedule my next dental cleaning so I'll have it before chemo starts. So, guess I'm ready.
mickishelley and Makelemonade - good luck with your pixie cuts,
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Forgot about the dental cleaning. Given that I work for a dentist, don't think that will be an issue getting that done :-). Don't think I am due until June or July though, so will have to pay out of pocket ... We will not be having ANY trouble using up our flexible spending account this year!
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All
I ordered a wig last week and am planning to shave at some point. I am also looking for beanies of my fave sports teams
:-)
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ColdinCanada - so happy you are home and feeling alittle better!!!
Chrissy - Im like you, I rarely took any meds prior to this diagnosis, so I feel so scared of l this junk going into me. LOL though when the nurse administered the benadryl into my port, it hit me within minutes and fell instantly asleep! I couldn't believe how quickly something like benadryl could hit me!
Blueberry - I got my pixie cut one week before chemo. I plan on shaving it once it begins to fall out though. My wig is orderedbut hasnt come in yet ; ( I have a few hats that should hopefully hold me over.
Today is my 1st day back at work since my 1st chemo on fri. It felt like I had run a marathon to just shower/dress and drive in. Still feeling the fatigue but I am seeing tiny bits of energy coming back alittle each day.
Sending everyone hugs :-)
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insomnia from the decadron certainly was a se for me last night. I scheduled my appointment for me pixie cut last night between three and four am on-line. Then proceeded to online shop and purchased some scarves and bandanas on amazon. Softhats.com had some interesting pieces I might look into.
Would like to find a good local place to get fitted for a wig and then go online to find a few fun ones. My daughter found a couple on vogue wigs she thought I would like. Might as well have a little fun with this crap!
I am in the waiting room now for my first infusion.....
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I start chemo on Thursday and I have been trying to be so positive through the last few months but I am struggling a bit this week. I am holding back tears all day and can't really even pinpoint why I am so teary...things are going as well as they can. I am recovering well from BMX on March 11. I am so thankful for this site. I am just sad. I do feel overwhelmed by the things I should be doing to make it through chemo - My MO's office gave me a huge packet of tips for everything from food to exercise to etc. Anyway, just needed to give a voice to my feelings with people who get it. You are all so positive it really does help.
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Hi Lovebeingnana,
I hear ya!! You are teary cause you are sad and scared and we have every reason to be sad and scared - I have very teary days and then have a good day and I haven't started chemo yet either. we have been through alot already but know our road is not short. You aren't alone - I hear ya and I get you
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Thank you so much Linda. This is all so hard!!!!
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Linda & Lovebeing nana...yesterday was my day...I was just plain feeling sorry for myself! I allow myself those every once in a while. My biggest hang up from all of this is still my hair. I know it is vain, don't care. If I still have that, I can fake it pretty well as I wouldn't have the constant reminder.
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I totally agree Lakegirl1 - I already get so many sympathy looks from people who know me and that will get worse. I think when the hair goes then I will look like a cancer patient. Today I went to the dentist to get my cleaning and they asked if there is any change to my health history so I told them I am going through breast cancer treatment and everyone was so nice and sad....that made me instantly cry. This afternoon is a bit better and I like that you said that you allow that once in a while - I really haven't so I think maybe that is why I am having so much trouble controlling it now. It has to go somewhere!!!
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Nana..if I may call you that...I went to church Sunday for the first time since my 1st surgery on March 4th. I know, everyone was so nice, I just kept saying it will take more than this to keep me down...well yesterday was one of my "woe is me" days. I don't know, it may have been the weather too, but I was just very teary most of the morning yesterday. Once I got moving, I was better, not great, but better.
I don't know about you, but this Lakegirl could use some Sunshine! That always makes me feel better!!! If only this dumb weather would cooperate!!! Snow in IL in April, really?!?!?!
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So true. We had snow here in Colorado this weekend too. Makes me glad for the timing of my chemo...it would be hard to be doing that in the dead of winter I guess. And definitely call me Nana.
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Hello All,
I am a 8 days out from by first AC chemo, started last week on Monday 4/7. Overall, my week went pretty well, other than I developed a head cold by Thursday. No fever though, and no nausea. Not a huge appetite the first few days but was still able to eat a little at a time. My nurses told me to go ahead and take my nausea medications starting the morning after chemo for a few days. So thankful I did, as I think that is what helped prevent any major nausea for me. Also had my Neulasta shot the day after chemo. They told me to take Claritin and Aleve for 2 days after the shot to help with any bone pain. Can't say that I had any bone pain at all. So thankful they have these preventative options to stay ahead of these side effects. I have also been pouring down the water each day. They say that is very important to help flush your system. By Wed. night and most of Thursday, I was just extra tired. Napped off and on through the day Thursday and just took it easy. Was able to take a short walk Thursday evening, and then on Friday resumed my morning 2 mile walks. Now I wasn't exactly power walking, but it was great to get back to walking. I think that really helped how I was feeling too. I returned to the Dr.'s office on Monday to have blood work, and my white cells were too low, so had to get a Neupogen shot. They told me to return on Tues and Wed again for another shot, then this Thursday they will do blood work again to see if my white cells are back up yet. Hoping to get back up to where I need to be by next Monday for my round 2 of AC. I will have my port put in tomorrow morning. Sure hoping I recover quickly from that too so I'm ready for Monday.
Thinking of all of you as we make this journey together. Just keep taking one day at a time. And let your family and friends pamper you through it all. You deserve it!
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wampuscat - sounds like you did really well with your treatment. Thanks for the report.
The hair discussion earlier inspired me to stop feeling sorry for myself and get out of the house - I went and got a haircut. Just took a couple of inches off shoulder length hair today - figure I will work my way up to a pixie in a few weeks before it all goes.
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LilyRose, there are so many things the doctors don't tell us that I've learned on this site. So when you said your pregnant daughter will be with you for your treatment I wanted to be sure you are aware of the danger of the chemo leaching out of your body the first few days following infusion. Don't let her use any of the same linens as you, and if possible have her use a different toilet than you - or flush twice lid down after you use it. I know this is more serious a threat to little ones, so I wanted to make sure you were aware. Best of luck to you for a good treatment day and few side effects!
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Well, I am home from my first round of TC. Overall, a non eventful day. From start to finish I was in the office from 1:15 until 6pm. The nurse said the next round shouldn't take so long since they go slower and go over more information the first time.
What I learned: decadron does act as a stimulant and I was up all night last night. I hope I can sleep tonight since I took my full doses at home and more was added to my IV along with an antinauseau med that starts with a C but I didn't catch the name. Benadryl in pill form. Taxotere first which they stopped for a moment because I was having a weird vision issue in my left eye but it went away.
No Nuelesta unless the blood count drop warrants it next week or if I begin traveling in an airplane for work.
I asked about sushi and the nurse said to avoid it days 6-11 when counts are lowest but it should be ok if I go to a good restaurant the other days. No gas station sushi, lol! She said that most of the bacterial infections come from our own bacteria, not transmitted from others which was consistent with what the onco said yesterday. He told me to go out and live life. No airplanes until after round two and we agree on the destination since I do some international travel. Let's see how I feel.
I was hungry when I got home and had a bite to eat...piece of toast and some left over roast beef. In hindsight the beef might be too hard on my system today to process. I am getting small stomach ache and my DH is headed to pick up my script for anti nausea that the nurse said to take preventatively the next two days.
Hydrate, hydrate, hydrate! I was floating by the time I arrived for my appointment and luckily was stationed right next to the rest room!
The nurse also said that because of the steroid today and tomorrow the fatigue might not set in for a few days. She also said the hair will start to go after week two on TC.
Hugs to all,
Ann
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Thank you mmtagirl for such a detailed update….I start TC on Thursday.
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Longisland, Thanks for the tips about chemo. My daughter checked with her OB/GYN before booking her flight here, just in case he said no way. He said yes, go help your mama and just gave her the run down on being careful. The onc nurses at the cancer center said the same thing. So she will not be using my bathroom and we stocked up on those lovely blue gloves.
I don't want to do anything that would put her or the baby in harm's way. It's still scary though. I told her I don't want her to do anything that could harm my yet to be born granddaughter. I sure hope your treatments are going ok.Linda - Hi! I would go with your gut and get the second opinion. I did. It put my mind at ease because they both gave me almost identical info. Good luck!
Nana - Hello! I love being a nana too! Except my grandkids call me Nona.
We had our surgery on the same day, except I went with a lumpectomy. I'm starting chemo tomorrow. I hover back and forth between being nervous and feeling strangely serene. I will be thinking of you when I head in tomorrow.As far as the hair goes, I'm not worrying about it yet. Don't know why. I used to have long hair down my back then some years ago cut it short. It felt good, much to my surprise. So I bought a scarf and one hat so far. I'm not sure about the wig yet. But we have had several ladies go through this at my church over the years, so I know they won't be staring. Mostly, I'm just worried about nausea and bone pain.
Hugs to all, lilyrose
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