Starting Chemo September 2015; join us!
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finally have an appetite! Had 1st infusion last Wednesday so that's 9 days post? Hoping next time isn't so long. MO is going to do some adjustments as the thrush probably didn't help!! But the yay is I'm eating and wanting to eat!!! I feel like I can do this
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Octogirl I guess you can finally put a date by my name as to when I start this mission.:-)
I will start 9-29-15
Just came from the hospital to have the port put in. Thanks and God bless to all you lovely ladies and yes it is great to have someone to sound off too. This and a few other discussion boards have been my saving grace. I was a basket case. Now I am half in the basket. LOL Praying to be able to put one foot in front of the other on Tues. to get to that chair.
Rosieo
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You got this Rosieo. Infusion day #1 was way worse in my head than in reality.
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can y'all tell I have nothing to do today but lurk this board?
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Hi everyone...I haven't read all of the posts in this thread, but am wondering about the decision to undergo chemo in those of you with what look to be "good" diagnoses--that is, if any breast cancer diagnosis can be considered good. In particular, those of you who have a Stage I, node negative, ER+/PR+/Her2- diagnosis. A few of you have posted low-intermediate oncotype scores (20ish) and are starting (or have started) chemo before radiation. I am enduring the torturous wait for my oncotype score and know what I will do if it's high (start chemo) or low (do a dance). But my main worry is getting an intermediate score and how I'll make a decision in that case. I realize these are all personal decisions that you make with your doctors and your families, but if anyone is willing to share their decision making process with me, I'd appreciate hearing about it.
Good luck to everyone going through this...
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Annie
Thanks for giving me one more pump of confidence.
Rosieo
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my oncotype score was 20 which is intermediate. My tumor was grade 2 which is more aggressive but not Omg aggressive. All my testing put me at a 12% chance of 5 year recurrence. That's fairly high in my estimation considering your average woman has an 18% chance of getting BC in the first place. Getting chemo was a no brainer for me with numbers like that. I shouldn't have gotten cancer in the first place. No family history of cancer, younger, had kids young, breastfed 3 kids, never took hormonal birth control...the cards already seem stacked against me with stats like that. After all my comprehensive treatments I will have reduced my 5 year chance of recurrence down to maybe 8%. I'll take it! Recurrence means more surgery, more chemo, more chance of death. I'm not going that route.
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My oncologist told me that 10 years ago he would have sent me home and told me not to worry and I didn't need chemo. He said he was surprised at my 20 oncotype score. He also told me he would have been wrong and I would have had a shorter life because of it. I'm grateful for the oncotype test. I believe it might have saved my life in the end.
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My MO told me that if I were 70 years old, she'd send me home as the 10 year prognosis was at around 60%. She considers me young and healthy at 54 so I can tolerate the treatment and have a much higher chance of no reoccurrence. That's good enough for me. I know I'd always regret it, worrying if it would come back if I didn't do everything, and I mean everything, to fight this beast. With having these treatments, I feel that I gave it my all, in case it comes back. That's my reasoning for going forward..plus the doctors all strongly suggested it was best. They do know their stuff!
I too should never have got this disease. No family history, had 4 kids at a relatively young age and breast fed them all. My family history is cardiac so I was more worried about heart health..oh well, that may show up later anyway..Getting older is so much fun.
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Scotland and here2win - we seem to be on the same schedule and regiment! Today I went to work(I teach and have cut down to part time) and the biggie was burping and indigestion. Now I'm headed for a nap. Have been wearing my wig (just started at this school two weeks ago so thought I'd start out looking like I'll look in a few days) and since I wear my real hair short anyway, I just had it cut shorter to be ready. I have a very small head and the wig is ok, but still a little big. Of course, I pulled it off when I got in the car! I have had a slight headache since round 1 and the wig was not a friendly feeling today.
I will be interested to hear how the cold cap goes.
Anyone have any good remedies for indigestion?
I was a little surprised how wiped out I was on day 4. The MO said that's the day all the stuff is exiting and it's common to be wiped out. I guess that made me feel better...
Hang in there beautiful ladies! We can do this!
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taking Nexium for the indigestion
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Rosieo: you got this! Thanks for the update, going to put it on the list. In your pocket for Tuesday
Octogirl
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Yeah, I am another "you shouldn't be in here for BC" lady.
Only 32. Have 3 kids, so had them young-ish. Don't drink or smoke. Breastfed all 3 of them. No family history of breast cancer.
So given my age, plus the fact that it's aggressive, the docs are throwing everything at it.
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Thanks so much for adding me to the group. Have been reading many of the posts and I must admit that it has relieved some of my fears, but added a few new ones. For example, my doc never mentioned thrush! Can someone tell me what the magic mouthwash is that I saw mentioned? I just retired from teaching in May. What a great way to start out retirement, huh? But at least I don't have to worry about trying to go to work while experiencing all the side effects. I'm lucky that my husband is retired as well and has been super supportive. He's driven me to every appointment and helps out
a lot at home. So thankful for that. Prayers, positive thoughts, and Best of luck to all of you as we go through this journey.0 -
Thrush is a yeast infection in your mouth. Your tongue and throat get white cheesy looking. It doesn't feel good. Baking soda water gargle swish helps to prevent it. Magic mouthwash is a compounded prescription. It is a mix of benedryl, Maalox and lidocain. If thrush gets bad you have to take a pill I think. I had the magic mouthwash and it knocked it out fast and numbs the soreness.
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is anyone else getting forgetful or sorta dumb? I had a moment where I couldn't remember my husband's name and I feel sorta dumbed down. I just posted what thrush is to a teacher and im sure you didnt ask what thrush was at all dab. I feel like a moron today kinda like my brain is wading through molasses. And I know this is real because I lost 4 hands in a row while playing gin with Jim. That's unprecedented!
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Thanks for the info!
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Annie you make me laugh. I had one of those brain fart moments when I called my work to talk to my assistant and couldn't remember the other assistants name. I totally blanked. It was like the words couldn't come outta my mouth. I am on an loa from work and wanted to check in with them and totally spaced out. The spacey feeling was worse right after the 2nd chemo last week but got better this week so I don't know where today's fog came from. But on a brighter note today was the first day in awhile that I didn't feel like chemo gal all day long. It actually felt like a normal day. I ran errands, went to the bank, and even managed food shopping. I did have my usual gotta lay down and rest on my sofa fatigue/tiredness at 3pm, but other than that it was an ok day. Here's hoping there are more of them for all of us soon.
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Annie, I am getting very dumb. It must be the chemo brain because I am usually as sharp as a tack.
I had round #2 of 7 today and I am feeling good. I slept for 2 hours after I got home. I just developed the flush (sunburned look) but now am walking on the treadmill (trying to keep up with exercise before I start feeling like shit).
Both sets of parents are here being helpful and SIL is coming this weekend as well so I should be fully relieved of mommy duty, thank goodness.
My tumor's disappearance was confirmed by secondary oncologist today and is the talk of the oncology office. MO thinks I may have a full response to chemo (20% of women do!) Hey, that's one perk to having highly aggerssive cancer, it responds best to chemo.
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Hi grey
In answer to your post just three minutes ago: The port is a piece of cake. Yes it is an anesthesia but not the kind you would need for other more serious operations. It is local anesthesia and they numb the area too ( I think that is how they explained it) I have total faith in my surgeon. He did my mastectomy plus other operations and I never had a problem. So when he told me how it would go and that I would have no pain etc I was quite relaxed in going to have it done. I had to be there for 8 am. Procedure was done around 9 or a little after, was home by 11 and had a cup of coffee and my husband made me an egg and toast sandwich. Tasted super, I was so hungry. It is now 11 12 pm and I have no pain or any other problems. I wish I was as confident to go for the chemo on Tues. :-) Rosieo
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Hello my lady warriors!
welcome to here2win, dab722 and Rosieo! You will enjoy our group, learn so much, laugh, cry and share insights only we can have because we are in this together.
teacherhikermom I am thrilled to hear your tumor has shrunk so much!
greytmph2 you did the right thing in taking charge by eliminating toxic boyfriend. You do not deserve this treatment or disrespect! You will be fine!
Southerncharm I laughed about your wig order! have done this before but not with anything I REALLY needed. There are so many cute hats and easy scarf headwraps you will be fine. Try the wide head band trick, it makes it so much easier and covers the buzzed hair along the edges.
Today is day 16 from first chemo and my buzzed hair is coming out! So glad I did the buzz last week.
2nd chemo went easy, slept all afternoon. Feel decent today except funky head. I am trying to get a jump on the Neulasta SE which will hit on day 3. thanks to many of you I am taking Claritin every day along with Aleeve. i had terrible headaches and neck pain llast time so do not want this to occur again.
Wishing you all a good weekend, be strong my ladies
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AnnieB43 and others who posted about becoming "forgetful or sorta dumb" ---- THANK YOU! Last week I blamed it on the constant bad headaches, but when they finally stopped Monday, the brain fogginess did not. I sometimes --- rarely -- do one of these things, but during this one week I've:
Left for a dogwalk without my housekeys ----- belatedly remembered husband had mentioned he was going out; Left the (luckily electric) stove tunred on on another dogwalk (luckily on lowest setting, with nothing on the burner, and shorter than usual walk); put laundry in the washer but forgotten to turn it on. Yesterday I attempted a very simple sewing project but it took hoirs because I kept making beginners' type mistakes (I have been sewing for over 40 yrs!).
I have heard the term "chemo brain" before, hopefully if that's what this is, it's only temporary. Scared I've had so much fogginess after only one dose
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upstater15: You asked about treatment options: My tumor is ER+, PR-, HER2 + and although Finalnd (where I live now) does not do "tumor score", my tumor is Grade 3 with very high values for all the "bad prognosis" markers that are measured. I had the affected (right) breast removed without reconstruction (to speed healing). The surgeon removed a surprising number of axillary nodes (9) which luckily were all clean, and there is no evidence of tumor anywhere else (except a second area in the temoved breast itself). I was started on chemo 3 weeks post-op ---- one week earlier than is standard here because of the aggressiveness of the pathology. I trust my oncologist, especially because she backed up my decision to delay reconstruction until after chemo --- actually yelled at the surgeon, who wants immediate reconstruction for all. I wonder that no one here is getting the same regimen as I am, but I don't know enough myself to question. So long as I get the Herceptin and SOME kind of chemo to beat this!
Three weeks apart, first three cycles of trastutsamabi(Herceptin) + docetaxel(Taxotere) + Neulasta
Then three cycles of Cytoxan + Epirubicin + 5-Fluorouracil
Then back to Herceptin for a total of one year + an aromatase inhibitor for life.
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Greytmp2 you must nOT give up on your treatment plan! Please find someone you can talk to, there are wonderful resources in every city. Maybe a breast navigator with your onco group. it really is not as bad as it sounds like. I have had all of those tests too, the mastectomy, port 2nd chemo and i am doing fine! I proactively manage the SEs, walk alot and try to stay positive.
Please find someone to talk to, don't give up!
We all love and support you
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Grey, my MRI was the most painful experience of my entire life. I have very loose joints and they accidentally dislocated BOTH shoulders in the machine. I was sobbing and shaking in pain. THEN then let me know that they could knock me out and I would sleep through the whole thing. Problem solved! There are options. Be your own advocate! Get back in there and fight for you life.
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I received my first dose of TC yesterday. So far so good. I don't feel wired and barely nauseous. Dh on the other hand feels like he is coming down with the flu and we have an almost 22 month old daughter. Horrible timing. I am a fill trying to catch up on comments. I am supposed to get Neulasta today at 11am. My chemo ended at 5 and after reading comments on here and researching I am concerned. I don't know how to bring it up to somebody without questioning their knowledge. I believe in being your own advocate. I did my surgery out of state at a highly ranked hospital. I had a wonderful experience. I had to come back home for chemo. I have a lot of anxiety surrounding medical providers especially locally. I try not to judge based on others poor treatment but it is hard.
I asked if I would get Neulasta so I could take Claritin and they said no last week. On day of infusion she said I would be getting it.
What is this chemo class that some of you took? I didn't have that. I wouldn't even know what to expect or how to prepare if it wasn't for you wonderful ladies.
What are your thoughts on parabens? I noticed Biotene has some in it. I don't know what to think.
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TFoxy: happy to hear you are feeling well. My understanding is Neulasta should be given at least 24 hours after your chemo and not before. I took Claritin at the advice of my MO and I am glad I did. All I can say is do your research and be your own advocate. There is info out there about starting Neulasta later and be sure to show that to your doctor/nurses. I hope you continue to feel well. Stay hydrated, I rinse my mouth out with salt water 2-3 times a day and do coconut oil pulling first thing in the morning. I really believe it helped with my mouth sores. I try to go as natural as possible except for the need for Zofran when I am queasy so I can't comment on the Biotene, but I think many of the women here have used it.
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Neulasta package insert says at least 24 hours after chemo. It doesn't state if this is the start of chemo or when it ends. One site did say after infusion was complete. I am the patient and I have a right to question my treatment.
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I was instructed to inject the Neulasta 24 hours after the END of the infusion. Hope that helps
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confused about when to get the buzz cut. My hair is pretty long, thick. I'm 9 days post first chemo. Steve the wig guy (I like to call him that) will buzz it when I'm ready but when do I go? I've got a 9 year old daughter who is terrified about this part so I've tried to delay change and got a fantastic wig that looks like my regular hair. I'm non too psyched about being bald nor wearing a wig. Got many hats/scarves as I may feel better in those. Tips on timing?
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