Illinois ladies facing bc
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Buddy, only those who are ER+ , PR+ or both ER and PR+ are considered to have breast cancer caused by hormones. These are the ladies who take the 5 year pill after treatments are completed. Who really knows what causes the cancer that appears in those not ER or PR positive? Environment? Food additives? If they knew I guess we'd have a cure by now. It is not just the hormones that cause the cancer in the ER and PR positive ladies, either. It's just that these tumors are "fed" by these hormones and so the drugs attempt to limit the amount of these hormones in our bodies. No food = less of a chance that it will grow or spread.
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"Life's challenges are not supposed to paralyze you; they're
supposed to help you discover who you are."
-- Bernice Johnson Reagon0 -
Donna - WOO-HOO - way to go girl...
Allison - Glad you checked in... was wondering about you. Everything's crossed for good path results. Let us know. Hang in there... we all know how difficult the 3 w's are: worry, wait, wonder.
Patti - Welcome... sorry you're eligible to join us. Perhaps you can call each hospital, talk to an Onc's office at each - kind of phone "interview" them and see which one clicks with you. Narrow it down to two and then meet w/each?... I agree with the surgeon... wait for the PET. Rita gave good advice: once you receive the written path report... post the info... stage, grade, etc. - it will help us - help you w/decisions/questions. The girls here are wonderful!
Annette - Sorry you'll be having so many rads... but honestly, for some reason - most say it goes very quickly. It seemed that way for me too. Also... keep in mind, that if you plan on swimming on your vacation, you should definitely wait and start tx after you get back. Chlorine is a no-no during rads. Best wishes to you... you will feel much better after you have a set plan of attack!
Budder - Hope you're feeling okay today.
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Looks like we're going to get some rain this morning... better go out and take in the cushions. I need to buy new vinyl covers, so I don't have to keep bringing them in. Mom's sleeping in this morning, and will be going back home this afternoon. She can't stay long when she comes... she has cats to tend to.
JUST FYI - There's a health expo in Schaumburg tomorrow...if any of you want to go... the link is: http://www.healthfreedomexpo.com/09chicago/attend/index.php
I will be there around 11ish, if any of you want to join me... it's $15 for the day... lots of good speakers and exhibit booths.
JanC - I message'd you... I could pick you up if you're interested.
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Morning! Chilly again....but no rain here...so far. They are promising warmer temps and I sure hope so!
Patti...welcome to the club that no one wants to join! Can't help you with the hospital choice as I've never heard of any of them! I agree with Laura....PET after chemo. But then...some want the scans before so they can check how the chemo worked. All docs are a bit different. Keep coming here...we've been thru a lot of what you will be having so we do have answers/advice and sometimes we just have hugs.
Annette....glad to see that things are moving along!
Budders....Rita answered your question re: hormonal bc. It's amazing what we DIDN'T know about bc before all this, isn't it???
Have to scoot as DH has bribed me with lunch if I come to his office and help him clean it up. He's a saver and there are stacks of c**p everywhere. But I can be bribed with food to help! Stay dry....and WARM!
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OK so you can have BC and not be ER or PR or HER ? Then the path comes back just saying cancer. no #'s or anything else asociated or to identify it with. I didnt know this. so there is nothing else to follow up with med wise. It seems like everyone here is ER PR or her. Is this just a coincidence. Am I confused.
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Buddy
I am triple negative meaning that my bc is not fed by hormones. The oncologist would prefer that ER PR or HER2 be positive then they can more easily treat bc. Being triple negative, 0+ nodes, stage 1 grade 1 I have elected to have a bilateral mastectomy with te reconstruction. I did not know my ERPR status until last week. I have elected not to do chemo as it only reduced my % 5-10 for recurrence. I like to say I am 85% it will not come back. The glass is half full for me, not half empty.
On your path reports, my hospital OSF in Bloomington automatically sent my slides to Mayo for second opinion. I am so happy that they did that for me as part of their general practice.
Now can anyone tell me when my muscles will quit contracting around my expanders. I wake up every morning and feel like a 3# weight is on my chest. Today's is cool & cloudy and they have been tight all day. My PT says to stretch my pec muscles as much as I can to over the tightness. I see her again tomorrow and will ask about the contracting.
Tanyar, Bloomington
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Buddy, I am also what is known as triple negative. It is more often found in premenopausal women, so it was a surprise to my doctors. Mine is rare, as it originates in the apocrine gland of the breast, and no studies have been done for treatment. So bc is definitely not all the same!
BJ...The windows are in, but the trim for one did not arrive. House is a mess, but beginning to shape up. I had the drapes, minblinds, and cellular shades all out to be cleaned, so I'm living in a goldfish bowl with these picture windows! It is putting a crimp in my Zappos addiction too.
Wendy, I became very attached to HDTV during chemo, and I'm still enjoying it. Did you see last nights episode in Rome? Yikes! You don't get much there for your money, do you?
Back to the housework for me, and I'll catch up later.
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I am still learning from you girls. I thought we all had to take the 5 year pill and so on. Thank you so much. I still have not heard if my path got approved for mayo. Sounds like you had a very good hospitol. Yes i remember the pain from teh TE. Its seemed like it was tener for maybe a week or so. My right was never tight. It had too big of a pocket and would slide around a bit. That may be why it got infected and had to be removed. All I can think aobut is having to go through the fills again. Thanks again girls for educating me.
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Hi all:
Buddy, I didn't know much about anything until I met this group. I then got a copy of my path and was even then asked to join an organization called Live Strong that helps people get it all. I learned perhaps more than I ever wanted to as they have every record on any aspect of the journey. As a matter of fact I am attending some survivorship evening tonight and it deals with eating right and hope. I sure wish I had someone to go with as I am scared. I will be okay once I cross the threshold.
Allison, I am so much older than you but I asked the doctor about getting a mastectomy even though the lumpectomy seemed to do the trick. This was the new doctor and not the one who did my surgery (my doctor saga goes on). She said that I would first need to speak with some counselor to be sure that was what I wanted (it was called a an elective mastectomy). That would have been fine with me but I just never went ahead with the plan. maybe, yours is not "elective" though. Talking to someone would be good though I think.
Have fun tonight.
Susan
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Hey Girls....I went to the oncologist today for my checkup and results from my pet scan. Looks like the areas from last time progressed. I don't have any new spots so that is a relief. I didn't know that there was a spot on my liver though. Anyways, he is going to keep me on Xeloda and add Navelbine to the mix. It is a push iv chemo. Sorta of like the red stuff...Adryicamin?,,,, The side effects aren't bad. He is also having me see the radiologist to see about a radiation iv that goes to the bones. The only bad thing about that is it goes to all the bones and can affect the bone marrow. He doesn't think that is an option right now but wanted to see what the radiologist thought.
I had my first navelbine chemo along with my zometa infusion today right after the doc appt. So it;s onward and upward.
Ginny
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Hey ladies.... sorry just been lurking around for last few days. Didn't have enough energy to write. Had two really hard days. Doc said might be my norm, need to keep up on nausea medicine. I hadn't because it was making me constipated. I know... too much information. Anyways, they gave me some ambien and ridlin and an iv when i went in today, and i'm feeling so much better. Good new though, counts were good.
Donna- SO GLAD that youre done. Maybe your excitement about your dad will help you get on the road that much quicker. Dad's always give us a strength we don't know we have.
Budders- Keep pursuing your second opinion. You DESERVE answers.
Laura- Looked at the website for Paula. Really well done. You girls all looks so beautiful and happy. Paula is absolutely adorable. Can you tell me why to stay away from the sugars and pops? I know they are not good for you but is there more to it? What foods seem to work for you guys? Drinks? Thanks, trying to educate myself.
Rita- Thanks for the warm wishes the other day. I read it just hadn't relied before now.
Patti- Sorry, you had to join us here but these ladies have welcolmed me in with open arms and given me a soft place to fall. I have a wonderful supportive community but it's nice to have this one here who knows exactly how I'm feeling. Let us know what we can do for you:?
Jo
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Hi girls -
Not much new here. I have been lurking, just haven't had much to say. Kids are out of school and bored already. Ha.
I wanted to come on and give my best to Ginny. You continue to be in my thoughts and prayers. So sorry you have to go through this.
Laura - thinking about Paula as well. I hope she is doing ok after her second chemo.
Welcome to Patti and hi to everyone else!
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Hang in there Ginny! You are one tough gal! I am so glad that you'll be joining us this next Thursday. I need to give you one big hug. Thanks for letting us know what the scans showed. I have been thinking about you all week.
Tanya, I just got off the phone with Andie and she told me that she knew you. She's going to be joining us on Thursday night, too. We'll have a fun group! Annette and Wendy the Younger from this thread will also be there!
YEA Donna! No more chemo! How are you feeling after this last treatment? You've been a real trooper through all of this!
Buddy, how did you do after the neulasta shot?
Hi to everybody else. I got home late tonight and need to get off here and crash in my recliner! LOL I'll check back tomorrow!
Rita
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Hello to everyone. Sorry that I am not more enthusiastic in meeting you all here. A starbucks would have been more preferable.
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Morning my pets! 45 on the old deck this am but at least no rain for today. 50% for tomorrow but Sun and Mon look good and warmer each day. Yay!Mrsmas...don't worry abut not feeling enthusiastic! We just want you to know that we are here, if you need us. No expectations on our part. Come here, don't come here, lurk...whatever. Anything that works for you, works for us. Hugs!
Rita....laundry done???? Sounds like your dinner will be fun next week!
Ginny....Hopefully the navelbine will make a difference. I think about you often, dear friend. The radiation via IV sounds interesting...when would they consider that? Hugs to you....but very gentle, careful ones!
Donna.....ALL DONE!!!!!! YAY!!!!!!! NO MO CHEMO!!!!!!! Whew.......it's over, girl!
Budders...did you hear yet re: ins., and your slides? I hope this will not be an issue for you. But you are getting mad now so that will help. I can just see you on the phone "What do you mean, you won't pay for more slides? That is not the way this is going to work!" You go girl!
Jo......I sure hope the extra anti-nausea meds are working this am. Hang on....you can do this. It's not fun, that's for sure. But you are tough and you will make it thru. Just baby yourself a bit and let people help you. That's where a lot of us made a mistake - trying to do it all.
Smerf.....I didn't catch the Rome one as I made the mistake of watching it from bed....sound asleep by the first commercial! They went to the Bahamas on Int'l House Hunters Monday and they bought a SHACK there for 1.2 million! It had a toilet in the upstairs hallway ! Good grief! Last might this yourng couple bought a RUIN in Italy for 750,000 which will take 3 years to fix and it was their VACATION HOME! Where do these people get this money.....and can I have some? Glad to hear your windows are done....what's next, or are you a bit tired with all of this????
Laura...thanks for the link to Paula's site. How did her 2nd chemo go? How's your niece feeling? When's her little girl due again???
Blackjack....how did your appt. go the other day? What's next for you? Hopefully the weather will stay nice and you can get out on the water!
Well...off to do something constructive. Aren't you all so glad that finally today we make that silly switch to digital TV? I have been tired of those commercials for a year now! Have a wonderful, happy day. Today is DH's last day of school and then I get him all to myself every day until the first Monday in August. Every day. Every hour. Every minute. Lucky, lucky me. So lucky. Goody. Can't wait. So excited.
(This prozac works well, doesn't it?)
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WENDY You Rock. I look forward to your posts every morning.
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Good morning gals! The sun is trying to peek out here so I hope it's going to be a good weather day! I have an entire morning to myself. I think it's a good time to take books back to the library and browse there and to stop at any yard sales I see on the way.
I hope everyone is doing well today and that you all have a good weekend. Tomorrow afternoon we're going to work some more on the landscaping that we didn't get finished before we took off on our westward trek. I'm actually looking forward to it!
Have a great day!
Rita
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Wendy, you do rock!
Well, I went to my Live Strong cancer thing and I had mixed feelings about the experience. I am glad I went as it has opened up a new territory to me. The Eating to Beat Cancer left me in the doldrums as I am not doing much that is right. I found out all these estrogen foods I need to avoid, and of course, I love them. I have been taking folic acid for months and that is not good! I drink too much as only three glasses/week of wine is oaky. I craved grapefruit juice for years prior to BC and oops...it is heavy on the estrogen production. Wendy, my D and Calcium magnesium are my friends and I should stay with it. I eat way too much red meat. I would love to say the presenter was some crazy PhD researcher. In fact, she is a doctor, a clinical researcher who specializes in breast cancer and diet. Oh......no butter (luv it) and little, if no soy. And I knew this....I need to lose so much weight that it is daunting. The only thing I have going for me is that I do not like sweets. I know you are all saying....in moderation...... I am worried this morning and rethinking my plan of approaching ME! I could send you all my notes, but I am sure you get the picture. I hope I have not wrecked your day.
Then, my second breakout session was entitled HOPE and it was a discussion group (versus safe lecture). There were some seriously ill people there and I felt sad. I just do not feel I am trained to participate in such a thing as I get so torn up when people get emotional. I was on the verge of tears the entire time. They were positive people and not angry, but they face such heartbreaking life circumstances.
I did meet some people and I learned about their yoga class (free and gentle) and a meditation class.
For what it is worth, there was a woman in the Hope group who admitted she spends hours on the computer studying her cancer (I am not sure what it was, but I could tell it was advanced). A few chimed in that they do the same and the discussion became interesting. It appears that some get compulsive about it. So this woman has a limit (time) that she spends so that she doesn't get stuck. She found that she felt worse after spending so much time, rather than better and realized that was unhealthy. That was informative. I know I sound negative about the evening but I am glad I went. It is just that some of the exchanges made me uncomfortable.
Well, sorry for how long-winded this is. I am just decompressing. Now off for some blackberries on whole grain cereal with a shot glass of no fat-milk! I am going to see Mary Poppins downtown on Sunday ("Just a spoonful of sugar makes the medicine go down...." ) I will miss all of you on Thursday. My niece and nephew are coming in for the week so I will be living the life of 8-year olds!
Have fun!
Susan
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Zap. It sounds like it was a very informative class. I wish I could have gone. I have not made te next step towards diest. I know this is somthing I need to do. They only food I have been told to avoid so far is soy. I will have to try to get my hands on a list. I get emotional when I see others suffering also. Sometimes when I go to chemo if there are elderly people sitting hunched over nausious, I also ask that they take them first. I think when I was first dx, I spent too much time investigating it. I also made myself crazy. I finally stopped. I get everything I need to know right here, and its not put in a scary way. Mary Poppins will be a blast Love Buddy
P.S. I had taxtere on Tue. and I still feel ok. I hope it lasts.
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Hi Ladies, Thought I would jump in with a question. I am triple negative. Everything I have read indicates that this is not the best thing. Is this true? I will be having surgery 6/16 lumpectomy/sentinal node and then they are talking chemo and rads. So far they are calling it stage 2 or 3. Will they need to wait until after lumpectomy to give it definitive stage?
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Christi73- I'm sorry I don't know about triple negative. I'm sure some of the women will be here to help you soon.
Jo
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I'm Back! Susan....everything in moderation is my matra. I could make myself crazy reading food labels and I'm already a bit nuts! I do try and avoid a lot of fats and red meat and as for those 3 glasses of wine...I do stick to that. BUT....I won't tell you HOW BIG my wine glasses are!!!!!! And yes, they are a bit larger than normal. OK....they a REALLY BIG. Tough.
Christi....they will indeed be able to tell the stage after the lumpectomy. Triple neg. means that your bc was not hormone-driven so you don't have anything to take after treatment to help boost your chances of it coming back. Being HER2- I still think is a good thing, even with Herceptin. Her2+ cancers are very aggressive and very sneaky - they LOVE to come back as distant mets. But this whole thing is just a c**p-shoot anyway - you do everything and it comes back, or it doesn't. You do practically nothing except for surgery and it never comes back, or it does. Or anything and everything in-between. For now, just take baby steps and we'll help you any way that we can along the way. We've been exactly where you are. Are you free next Friday for lunch? We are meeting at Maggiano's in Schaumburg which is fairly close to you. Think about it!
I am done with the lawn and laundry and sheets...gonna have some lunch and then maybe a little deck-time...with one of those REALLY BIG GLASSES of wine. I know I shouldn't drink alone so I will bring out some of my teddy bears and sit them around the table.
That prozac is great stuff.........
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I am a big glass wine lover too. I didnt know 3 is the suggested limit. I didnt know te Her2+ was a little more aggresive to come back. Thanks for sharing. Enjoy the deck.
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Christi,
Welcome to the thread of Illinois ladies. The women on this site are awesome and somebody is always available to answer you questions. Post often and we'll help you through this. As for the triple neg, there are girls on this thread that are triple neg and are out of treatment and doing just fine so don't worry so much about that. Just take it one day at a time. Get through your lumpectomy and sentinel node procedure and then you'll know more about the stage and can formulate your own treatment plan. Hugs to you as this is a scary and mind-boggling time in your journey.
Rita
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Happy Friday everyone!! I've missed you guys.
Today I get a break from training - phew! Going back to working & sitting at a desk/PC after 2 years sure is tough. I've been tired & crampy, lol.Basically I'm not earning any real $$ yet, because I get paid per report & I have a lot to learn. I thought I was fairly well versed in medical terminology - HA!! I thought wrong
My new boss says it will take about 6 weeks to get rolling. I apologize, I am really behind on everything here. But I do see some newbies - Welcome!!! So glad you found this group! And Ginny - sending you the very best wishes as always.
Hey, does anyone know if Tamoxifen can cause low WBC count & low liver enzymes ?? (I found a post on the hormone board, but they had chemo as well - which I didn't - so the low WBC was attributed to that). Just wondering.... I've never had those come in low before.
Anyhoo - I'm going to get outside & pull some weeds & enjoy the lovely weather. Gonna go see my mom this weekend too, she is still doing poorly. But I hope & pray for the best...... that's all we can do, right ??
Sorry I won't make Maggiano's next Friday - I'll be there in spirit!!
Cheers - Juliet
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I couldn't resist!
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"The measure of success is not whether you have a tough problem to deal with, but whether it's the same problem you had last year."John Foster Dulles
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Hi all,
Well I am feeling better today than I have all week. I did hear back from the doctor's office. They said they could call in some muscle relaxers for me. I already had some so I just decided to take them. They helped just a little. I think the pain has mostly subsided on its own. Tissue expanders are painful. I have an appointment next Thursday the 18th. I am so ready to be done with all of it. I have to wait at least 4 weeks from my last fill before I go through my final surgery. Whew!
Funny story - My daughter might hatch a robin in her incubator. My husband worked on a piece of farm equipment for one of his customers and found where a bird built a nest on the equipment. Well, the equipment is now in use and the bird would not return to the nest. So, knowing how our daughter loves birds and nests and other things like that, he decided to bring it home to show her. Well, she got the bright idea to put the egg in her incubator to see if it would hatch. So, we went ahead and set it up for her. We will see. It didn't have a chance otherwise. She might become a momma to a baby robin someday. LOL. Who knows, it might be one of those neat stories she tells her kids someday. She is a project. Her quail have really grown and look fully grown now. The quail eggs were close to the size of the robin egg. It will be interesting for sure.
Well, I will keep you all posted. It takes awhile to read all the posts and keep up with everyone. Sounds like a lot of you are making positive progress. That is good. Welcome to all the new people. I talked to another person today from upstate and told them to come here and check out the discussion board. They told me some interesting things about plastics. Do you all check out the number on plastic containers, etc? She told me to really watch the number. It is on the bottom of plastic products and anything greater than 3 is not good to use. The number is found in a triangle. I looked at a cup I got from Subway yesterday and it had a number 5. So, it makes me wonder.. ??? I definitely don't use plastics in the microwave. Also, someone in an earlier post said that soda pop was really bad. Well, I know it isn't the best thing for a person but it is really hard to kick that habit. I don't drink wine but I do drink pop. Any thoughts?
Lastly, she said she has been going to the Cancer Treatment Centers of America in Chicago and thought they were really good. Anyone else going there and like it?
Gotta get some zzs now. Talk to all later!
~ Jennifer
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Welcome, Christi73,
I am another triple negative, and doing well . I am older than most triple negs, and the doctors were all surprised. The good thing is that trip negs respond very well to chemo, but the hormonals don't work for us. You will know more after your surgery when you get the pathology report. That is when you know for sure the size of the tumor, and all its other properties, such as grade. Your medical oncologist uses all this information to give you your stage, and then makes a plan for treatment.
If I can help in any way please let me know. Hang in there, and let us know how you are doing. We'll be thinking of you, and wishing you well on the 16th.
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Morning All! Drippy and Cloudy here....54 on my deck. Yuck. They say it will start to clear out by 10 or 11am tho. We shall see.
Laura.....now that glass is more like it! I have a feeling tho that the experts did not mean 3 of those per week! I had 2 small glasses with dinner last night and I used dressing out of a plastic bottle and I ate red meat. OH well.....
Jennifer....keep us posted on the robin! How cute! Post a pic! I hope it works out for your daughter. Glad too that you are feeling better. TE's must be very painful indeed! But there is an end to it so I guess you just have to keep moving forward thru it all. I applaud your resolve. Don't know if I could do that but since it would have been the only recon I would have considered if I had had to have a mastectomy I would have givven it a try. I at that time had no idea that while I did assume it would be a bit uncomfortable that it was truly so painful. You girls rock!
Smerf....did you see House Hunters Int'l last night? Another vacay home, for another youngish couple, on St. John's. FOR THREE MILLION?????? Good gosh. I assume that these men do not work in education!
Very exciting morning planned...have to go to JC Penney's to return a catalog item. I ordered shorts, women's sz 6. The sticker on the bag says women's shorts, sz6...the bag contains men's slacks 34/32. WTH? I sure hope they don't expect me to pay for the shipping on this return! Since tomorrow is going to be so nice we are toying with the idea of stopping there first and then heading up to Wisconsin, maybe Green Bay where we've never been...and staying overnight. BUT....maybe we will just grab some lunch and go home and nap til the sun comes out! I hope you all have a wonderful Saturday....and a happy Father's Day to all your DH's and Dads etc.!
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