Has anyone started a Dec 2011 group?
Comments
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Hey Mary..I have twin girls and three grandsons who are the light of my life!! You're right, thanks for reminding me of all the blessings we all have. I hope you have a nice holiday with your family too.
markat...I'm sorry you're breaking out, going through puberty was bad enough the first time around!
Was wondering...did anyone have any trouble with meds given through their port? All these things pop into my head and I haven't even started treatment yet
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A yes to the zits too. Maybe from the steroids?
Hi Laurie. No prob with the port, during or after. I forget it's there until I stretch, then I worry about my Teflon boob knocking it out!
Anyone have burning mouth syndrome? Now the inside of my nose is burning too. I'm sorry to whine.
Time for some ice. -
Darlam congratulations on the birth of baby Olivia! What a joy and blessing!
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Hi ladies. Hoping Saturday's been a day for everyone to relax and recenter with everything that we've had going on in our lives.
seacretgardn - I'm sory things have hit you so hard, and your daughter. I know it's almost cliche, but I've really had to rely on the old saying that it's what's inside all of us that matters. It's sort of odd - for once, having my hair this short actually makes me look more mature - usually I look like a HS kid. Yet I also see the beginnings of my transformation toward looking more 'middle aged,' something I had pleasantly avoided. But I've seen a number of women who are several years past treatment, and while maybe they see themselves as changed, you'd never look at them and think they went through something this traumatic. Hang in there.
Gator - Sorry the nausea has had you so down. Were the doctors able to prescribe anything? I did get the Emend, but they also gave me Zofran and Compazine if necessary. And did you try sea bands? I did for the first few days. I know they helped me avoid seasickness last Feb, and apparently they can work for a lot of forms of nausea. I hope you find some relief soon!
Mardibra - Thanks as always for the encouragement. I'm sure you're wearing your new 'do' in style.
Darlam - Congratulations! What a wonderful thing to be able to share and participate in! And it's super that you're able to work and have the support of your family and coworkers. It makes such a difference.
MaryHope - I'm sure I can get a refill if needed. I've only taken maybe 3 or so of the one drug. I'm just thinking ahead since I've heard that the effects tend to increase each tx.
Laurieloomis - The port worked perfectly for me. I got my Decadron in addition to the 3 chemo drugs. They will watch you to make sure you don't have any immediate reactions. But basically it's no different than having an IV. For the adriamycin, the nurse actually used a syringe to inject it into the line, but it gave me a chance to sit there for 20 minutes and have a good conversation with her.
I'm thinking my mouth may be the first thing to go... I'm feeling like I always want to brush my teeth. But so far my taste and appetite are untouched (unfortuantely - I'm not getting much exercise and don't want this to wind up on my hips). I made it through an orchestra rehearsal this morning, slept for the afternoon, and then went to a meet-and-greet for the radio station this evening. I hit the food first before many other hands could touch it, so hopefully I'll be fine - and I had a few 'wassails' with alcohol. Not much. I figured just enough to kill any bugs in the apple cider...
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breaking out for me too, although it could be partially due to PMS, but clearing up a bit
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My nose has been burning and bleeding: ( and my hair is starting to shed a little. Sunday is day 14 post tch.
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markat, sorry to hear that, hope your nose feels better soon, hair will grow back, mine almost all gone
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Thank you Rachel. I really am stunned at the change in my skin. People used to be surprised at my age (53), now they'll be surprised to find that I'm only 53.
Your adriamycin injection took 20 minutes? I think mine was no more than 5. I wonder if that makes a difference.
Anyone know?
I don't care if I sit there all day if it makes a difference in SEs. ESP if the effects worsen.
I hope not for all of us. -
RACHELVK.. Thank you, I get my results on Monday....Had a better Friday and Saturday! Im going to make cookies all day Sunday to keep my thoughts off of Monday! Did not get my port yet I get that put in the day before I start chemo. I hope your port feels better!
SECERTGRD..OMG, I bet you do get sick of thinking and feeling everything that's going on in your body! So sad that we have to get sick to get better!!! Hope you feel stronger today!!
Hope all of you can rest today who needs too! Oh yes, that was so nice to hear from women who are visiting the site because they are done and letting us know things will be better at the end of this dark tunnel we are in!! -
LAURIE, WOW TWINS!!! How nice, they for sure will keep your mine off of feeling bad...Sounds like a beautiful family!! Enjoy!! Mary
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Mary, tell me again when you start your first tx, I think we're on the same scedule, I start right after x-mass. ((hugs))
markat, sorry to hear about your nose, wishing you a speedy recovery from that s/e!
Peaceful Sunday to all
Laurie
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Thanks! I have a feeling this might be a regular thing through winter. I live in a region known for sinus issues.
I had half a cosmopolitan last night. It actually didn't taste bad. My tastebuds seem to be getting better. -
Cold New England morning....just hit 20 degrees. Never realized how much my hair had kept my head and neck warm. Im now wearing some ridiculous looking head covering/hat thing. But, its comfortable and its warm and its perfect for inside the house. I need to muster up some energy to get out and do some last minute Christmas shopping done. Im hoping my chemo foggy brain will allow me to put a list together. If last AC tx is anything like this one, tomorrow through Wednesday I will have major fatigure and doing anything other than waking up and sleeping some more will be impossible.
Markat - my MO suggested Ayr Nasal Gel for the nose stuff. Keeps the nose nice and moist. Hope it helps you.
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Well, I might be joining the list of nasal dryness. I'll try out that gel, or just go for the saline solution I've used in the past. So far no breakout issues, but I do have some weird spotting (really tiny) along my shoulders, back and upper arm. Not a rash, but just odd. Keeping an eye on it all.
Seacretgardn - I got my Adriamycin as a 'push,' where she used a syringe to control the pace. She could have just been going really easy on me.
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LAURIE, the port goes in Dec. 28 and chemo 29 if I remember u start chemo the 28. Oh yes we will be doing this at the same time. Adriamycin, cytoxn, Taxotere. Those are the flavors of the month!..
Feel sick just looking at those words!! What is your cocktail?
Thank God, for these posting, I have learn so much hear..No chemo school for me yet going to ask about that! I wish you and I could have sleepover like our kids did, the night before!!! Lol !! My husband who has been saying it will all be fine! I want to scream to him, then you do this!!!
He means well.
For those having SE I wish I could say something to make you feel better!! ((((( Big Hugs to u)))) -
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mardibra...I meet with my onc tomorrow am, to set the schedule for my A/C. which days after tx we're the best and worst? I know, weird question, but we're trying to buy a house in upstate NY and I want to plan the tx so I'll feel somewhat "normal" over the weekends Do you wear a head covering at night? I would think our heads would get cold and knowing my luck I'd get a stupid cold! Take care.
Laurie
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Mary..you are too funny! Sleepover would be a blast, shave our heads together, nibble on saltine crackers, sip gingerale and then go throw up! I'm doing just A/C..I think because I'm a triple negative, the hormone stuff won't work for me. I know what you mean about your hubby, mine keeps reminding me how strong I am, positive attitude, blah..blah..blah Some days I want to ball my eyes out! He is so supportive and his shoulders broad when I have days like that too. Take care
Oh Terry, my heart breaks for you. You are absoluetely right..it is YOUR boob and you can mourn it's loss anyway you want. Sending big hugs!
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Ooooh Terry....Im about to walk in your shoes. Mastectomy planned for me in March/April. They may be diseased but they are our Boobs! And, I dont want to loose em either.
Laurieloomis - seems like everyone has a different experience but mine is as follows:
day 1 - get my AC infusion and im in a bit of haze...kind of foggy head for the day.
day 2/3/4 - much better but get tired in the afternoon and have to take a nap
day 5 - feel like im walking in quicksand. Very tired, very weak.
day 6 - a bit better than day 5 but when i get home from work i crash until the next morning.
day 7 - a bit better than day 6 but still sleep a lot.
day 8 - starting to feel back to normal, tastebuds returning and one week of no SE's before i start all over again.
I have been lucky, no nausea to speak of. If I even feel a tiny bit queasy I pop a compazine and poof....its gone. I have not been wearing a head covering at night only because the stubble makes it uncomfortable. But when its all gone, I have a sleep cap to wear. Supposed to keep your head warm and its made with no seams so its supposed to be comfortable too.
I hope your treatment schedule works for you and hopefully you can have your weekends to feel good.
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mardibra,,you are amazing!! Thank you for the detailed account of your days, that helps so much. I know everyone is different but it gives me a good idea of what day I should do chemo to have my weekends fairly civilized, if that's at all possible through this mess! Be easy on yourself this week and get some rest.
Laurie
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I don't know ladies. I feel like the whiner of this thread. Sorry to unload again, but I can't help feeling like there is something I'm doing wrong.
Day 11 and although the initial first days were certainly the worst w nausea, fatigue and bone pain, this burning mouth nose stomach has me really worried about my next tx. The red spots in my throat are now connected, open sore still not healed, no amount of antacid touches the stomach.
Dr just called in script for the mouthwash. Doesn't heal it just may help numb it. It hurts to speak.
My ears still ringing, pupils like pin pricks, I have the look of someone very drugged. The only meds I took since tx are antacid and the prescribed decadrone.
I still can't help feeling that my being heavier than avg weight and having a higher dose contributes.
In the past, I've always been drug sensitive, one benedryl would knock me out for hours.
Im sorry, thank you for listening. -
Mardibra thanks for the tip about the nasal gel!
Terry I'm so sorry. People can really say some stupid things sometimes.
My MRI is tomorrow morning. Here's hoping these stupid headaches are just side effects! -
Good evening ladies. I am on post treatment 1 day 12 and saw my hair out like leaves in September. Rather that wait for the inevitable I went and got it buzzed. Certainly not a confidence builder but my DH says I look cute. God bless that man because I don't know what I would do without him. As far as symptoms go the review posted is very similar to mine. No major se either than bowel movements some days loose other days not. As for the mastectomy I had it prior to chemo and was at a hockey game for my son the next day. As far as how your spirit processes the whole process I think for me it was a case of the part of my body had defied me so I wanted it gone. I am 44 yrs old with 2 darling kids ( most days) so I had chosen to do what I thought would be better for us as a family. Believe me I know all the supporting data but still made the mastectomy choice over the lumpectomy. So it is the week before Christmas and I have less hair than my husband
. I am trying to remember this is a short trip to a long destination bit it is hard. People are plannning holiday festivities and I am still feeling held hostage by this thing we have been diagnosed. I have a friend that has gone through and she was a bit younger with young twins at the time, so I can do this. I just think it is a little harder perhaps at this time of the year. Treatment (cleanse) number 2 is scheduled for the 28th. Happy New Year! Screw off 2011. Let's hope 2012 is a good year for everyone. -
oh Seacret....I feel so bad for you. Doesnt seem you are getting any relief at all. Dont be sorry for venting...thats what we are here for. I take amazing amounts of Prilosec for the heartburn. Probably 4/day for the first few days. Im sending you happy healing thoughts.
Markat - good luck with the MRI. Hopefully you headaches will calm down for you.
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Terry, I'm so sorry you're grieving. How could we be expected not to miss such an important part of ourselves. It is all so unfair.
I hope you will heal quickly.
A friend who also had a bmx reminds me that it's not breasts and hair that makes you a woman, it's your heart. -
Mardibra thank you. It helps a lot to know others who understand do care and that we all want the very best for one another.
Markat good luck with your MRI tomorrow, hoping your headaches subside.
Peace to you all this Sunday night. -
Seacretgardn - Hang in there. Hopefully the mouthwash will help. I wish I had more encouraging words... all of this is so lousy for all of us.
Terry - You have the right to mourn - you lost something that was part of you and your self-image. Are you considering reconstruction? In some way, that might help. We never know how we're going to react to something like this until after. I hope you find some good support from close friends - don't be afraid to tell them NOT to try to sweep it under the rug and make you 'feel better.' You need to be able to express your frustration and loss. The fact is, it was a stupid tumor that stole your boob - 'useless' is completely irrelevent.
Mary - A sleepover! I love it. I had my Mom over the night before, and while it wasn't quite a sleepover, it was nice having the company.
Markat - Crossing the fingers for the MRI tomorrow.
Whatashocker - Sorry the hair jumped ship a little early. We certainly do deserve a kick-ass 2012.
I have to say, that for all of you women with families, I am in awe. I feel like I wasted the day, doing laundry, some shopping, the dishes - and I only have to take care of myself (and my boyfriend a few days a week, but he does really pitch in to help). Oh, and I'm cooking now and freaking out because a) am I really okay eating broccoli rabe even if I'm going to saute the heck out of it so any possible bacteria is killed (I'm 'supposed' to be eating dark leafy vegetables, go figure...), b) can I slice a sweet potato without cutting a finger, and c) I've got to wear mitts or I'll burn myself. Did I miss anything?
Sigh. I just ordered a hair halo, sleep cap and wig liners online. There seemed to be much more hair around the drain this morning. Hoping mine waits around through the holidays. I'm feeling a little odd on the fingertips - desperately hoping it's not the early signs of neuropathy. Or is this me getting paranoid? It's going to be a long 5 months...
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Seacret I'm so sorry you are going through all this. Isn't there some type of maalox combination gargle that is supposed to help with throat sores? Are you able to eat? I'm a big girl, tall and heavier and I haven't experienced anything like that..not sure if that really makes you feel better.
For you ladies that shaved your own head, was it hard? What did you use? My mom is trying to talk me into going to a salon and I don't want to. -
Ok seacret my friend had told me that she tells her dental patients to swish and gargle with liquid maalox to help coat the sores. Hope it helps?
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Laurie, I laugh at your repley, I guess we better laugh now, cause it sounds rough...We will get through this together and with this great bunch of women here to help each other
Secret! We want to listen, Are you kidding girlfriend you bitch all u want. I feel the pain u have in my heart! I may be right behind you, I will need to vent. I don't want to complain so much to the family when my time comes, cause it's hard enough to live with a sick person. I don't want to wear them down so I can say what I want here and everyone really gets its. I hope you will feel better soon, hopefully the mouth wash will help. That must be painful, sorry!!
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