Can we have a forum for "older" people with bc?
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GRRRR I'm trying to post a photo --just ignore, please.
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Getting ready to go for the night. Jo, I see Rita hasn't come back yet today but I will tell you for her.....it is a recent picture, and we are all envious of this picture. It's a great one of her and really she is just like her picture....bright and shiny and making you feel good with her enthusiasm and can do spirit. She started the thread that all the Illinois girls post on.....but is not a forum---just the thread of one. I went there right after I found bc.org and just sort of stayed there till SameDayNurse Jan stumbled onto this thread/now forum and told us about it there Now I check both places daily.
Hope you all had a wonderful day. I'm off to Marion V.A. Hospital tomorrow to see Oncologist there. Just a check-up....check-in meeting I think. The old Oncologist was leaving to transfer to Fla. just as I finished my chemo ( thank gosh I made it through with him on that ) and they have gone through quite a bit to find another properly certified one --- at least that is what I think as no one as really said --- I was just notified by mail to show up and I will do that. Hope it all goes well. I'll be looking in here tomorrow before I go. See ya'll then.
Hugs,
Jackie
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Hey gals! Good morning. Thanks to Jackie and JO for the compliments! Wow! You made my day! That picture was taken this last summer when a group of the Illinois bc gals met at Starved Rock Park. Since then I've gone with a slightly darker hair color because (heaven forbid) the ash blonde was not quite covering the gray, so I'm now light brown with blonde highlights. I'll try to post some new pictures when I get back from KY this weekend,. I need to show off my new grandson and other little guys to all of you!
I hope all goes well for you today, Jackie. I'm off to walk 3 miles with another bc friend. Then we have our last Bunco for this season and I definitely can't miss Bunco! LOL Tonight I teach the youth group at church so I may not be back on until tomorrow.
The sun is shining in IL today and even though the temps are still low, it's a lovely day outside. I hope you all have a good day. Hugs to all of you who are in treatments!
Rita
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we have snow today, I think maybe hubby and I should turn into snowbirds and get a place in Florida
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Good morning to everyone this bright, beauty of a morning. Susan, I can imagine snow because we have had it before here this time of year but I sure hope we are done with ours. We have had several tantalizing days of 70 degree temps or near that so I am pulling for deep Spring to come and stay. Still on my Claritin....hope I see some improvement soon....really I think in some ways it is the hives that are a little more irritating. Maybe I'll be able to get a little more help with this today and the trip to Marion will have really been worth it. I am about 70 miles north of Marion so it is a bit of a drive.
Hope all of you are doing well....
See you later.
Hugs,
Jackie
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Hi Everyone!
I'm off of work for a week and SOOOO excited to get some time for ME! I'm also going through the first cold I've had since the bc and it's lasting forever. Finally got to the doctor and he gave me some new antibiotic. Still no let up, and tonight we're having a dozen for the seder dinner here.
To all celebrating Passover...hope it's a beautiful one shared with family and friends.
Jo Ann
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hi, ladies,
got to sit down for a minute. hmm, to answer your question, i had 8 lymph nodes removed, all negative, and at a time when it was very common to remove almost all. but i didn't develop le until 4 years or so after i developed bp. i am sure that the lack of movement in the arm had a lot to do with developing le later. whichever one shows up, and in what order, nobody really knows too much about, as you can see by now. the bottom line is, once you have had surgery and/or radiation, you are always at risk for these conditions. fortunately, the bp is much less common, and as far i know there is no way to try to prevent it. but the le can be headed off at the pass, so to speak, by using a sleeve when flying or for other particularly stressful situations for the arm or hand.
and i also want to wish everyone who is slaving over a hot stove today a very happy passover with family and friends. jo ann, i sure hope you or someone who loves you is making chicken soup for that cold you have. before you eat it, be sure to breathe in those wonderful fumes. deep breaths, now, then enjoy. tomorrow, no cold! well, at least, better.
back to the kitchen. i sat long enough.
barbara-
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Hi Everyone!
Had my 6 month visit with the oncologist this morning. I had been feeling discomfort in the area of my underarm lymph nodes since the radiation finished and was worried that it could mean I had some involvement. The oncologist felt the area and said not to worry. That it is very normal to have "axilla" pain and breast pain after radiation and it can go on for months, that the lymph nodes were NOT enlarged. She wants me to wait another 6 months before the next mammogram because the radiation effects should calm down by then. My breast is still a bit red and warm, but not indicative of IBC, more like a "cooked" (aka radiated) breast. With a great deal of relief, I made my next appointments and continue my prayers.
The doctor said that Vitamin D studies are contradicatory...some praise, and others say it really doesn't have much effect. However, she did encourage me to continue with vitamins that included Vitamin D, because it can't hurt.
That's it from here! Hope everyone has a great holiday!
Regards,
Jo Ann
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Barbara,
Happy Pesach! We had 12 for seder and half the stuff still needs to be washed, but I'm not going to kill myself in getting everything put away. For once, I'm taking my time and taking care of me. Tonight we go to a dear friends for the second seder....it should be fun!
Regards,
Jo Ann
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Jo Ann - There's been lots of good news here tonight! I'm so glad yours is good!
And, happy holidays, whichever one it is!
All I know is, I'm on vacation just in the nick of time...I feel like a deflated balloon and don't think I could have done another day.
Susan
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Hey Susan, it's really funny but when I was teaching I remember looking forward to the vacation days (Christmas break, Spring break, President's Day, etc.) more than the actual holidays! LOL
Have a good Passover or Easter everyone! Hugs to all of you who have traveled this journey or are now struggling with the treatments that will rid you of this monster.
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mzmiller99
Thank you so very much for your prayers for my cousin and also for the ones you said for me. They were expecting Junior to die last Sunday, well it's Friday, and he is still hanging in there, although he is in really bad shape. Only God knows when his time is over. Thanks for the prayers. Hope you are having a beautiful day and hope you will have a Happy Easter.
Ladies:
I hope you all have a very Hapy Easter.
Thank each and everyone of you who has prayed for my cousin and his family, and thanks for the prayers you have prayed for me. I ask God to touch each and everyone of you when I pray, and I do believe in prayer.
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Whatever holiday you celebrate, I hope you enjoy it surrounded by the love of those that mean most to you.
Hugs,
Jo Ann
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hi jo ann,
good news from the onc is most appropriate for this happy time of passover. (yeh, the second seder is always more fun when it's not at your house..............)
wishing everyone a very happy easter holiday, and hoping it brings you all good news too.
barbara-
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Hello everyone,
Had 5 drains out yesterday. Hoping the last one comes out early next week. Each day gets better and I get stronger. Looking forward to NOT being a patient!!
Hugs everyone!
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Hey Mikita, This certainly very good news-- you've come a long way, Baby!
Just keep getting stronger and looking forward to the better days ahead.
(((hugs and prayers))) Helen
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Hi tonight.....and Happy tomorrow, however you spend the day. Good to hear Mikita. I seemed to have heard many people talk about discomforts of several different types with the drains ( including how to take a shower with them ) so being down to only one must almost seem like a walk in the park....well, not really. You are quite right --- much better when you don't have to have all this be so prominent in your life. Healing hugs for things to continue on in positive ways.
Big day here today...several friends over and then I got my foster dog this morning. I took her in for the local Humane Society. Hope she dos ok. A bit hyper though many puppies are, but she sure is a sweetie. Just hope we can keep up. She probably won't be here too long anyway.
I need to get going....so much to catch up on but wanted to wish you all a Happy Day
See you later.
Hugs,
Jackie
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Makita
So very happy to know that you are doing so great
. I have been praying for your speedy recovery. Hope you had a great Easter. It is so good to know that Jesus Christ is alive, and that by his stripes we are healed. I can't be on here too long, I have a Dr. appointment today, and I'm going to the hospital to visit my cousin, Junior, he is not doing so good, he seems to have cancer everywhere in his body, we are praying for a miracle, and we are asking God that if it is his time to go, to please not let him suffer with this dreaded diease.Have a great and blessed day.
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Yea Mikita! I'm so glad to hear that you're down to only ONE drain and that you're doing better!
Hugs, Motherof7. I will continue my prayers for Junior. I am so sorry to hear that he's not doing well.
Jan....I poured over your info while riding in the car this weekend. It was so enlightening. Thanks so much for sharing.
Jackie...I didn't even know that the Humane Society had a foster pet arrangement. Interesting! You'd be the perfect "foster mom" for a fur baby! Hugs!
I had a wonderful weekend in KY with my family and have lots of pictures that I'll attempt to post this week.
In the meantime, I have a suitcase to upack, laundry to do, and errands to run. I'll be back later when I can get caught up on the posts. I hope you all had a wonderful holdiay.
Rita
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Hi all and welcome back from the holidays. I enjoyed it all but I always do. Actually whoever can take in an extra animal is what often happens here with the Humane Society. Right now, our Humane Society is basically one lady. She has 18 dogs at her house and I don't know how many cats. Also she is licensed to take in ( and always does ) any wildlife that has been abandoned or hurt. She has had several owls, baby deer, raccoons, a fox.....the lady is marvelous. She though has a husband with severe diabetes, and heart problems while she herself has had a heart attack and bad bladder issues. None of us here know how she keeps going for her family and all these animals but she does. So, although it's a bit of a struggle to have another pooch here.....I felt like I should not say no....and should try and ease Lilo's burden a little. Have a feeling Miss Molly McButter won't really be with me too long....what a cutie.
Hope you all have a great day. I'll be checking back later.
Hugs,
Jackie
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Glad to hear you are down to one drain Mikita. I only had two after the mastectomy and was so glad to see them go.
Having seen three family members through this disease...there is a point where you do start praying for peace and the no more pain for your loved one.
I just posted on another thread. Today I woke up and felt like I needed to retire by 9 a.m. For the past few days I've been having lots of muscle and bone pain..I spent a half hour trying to figure out how to describe 'how I felt" to the doctor if I ever got the courage to tell him again that I was feeling awful.
Well tonight I feel a lot better...and I'm trying to figure out why. I blame the AIs ...age, and being tired but I was just off for three days. Am I going nuts or nuttier?
I was wondering if any of you have a feeling that you are complaining too much when you try to talk to your doc. or onc.?
I'm going to sleep now and hoping tomorrow I'll still feel this good.
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Hello Chooks,
I need to vent. When I got my initial path report, I understood the ER-, PR- part, but since my HER2 was positive (although just barely), I didn't understand that I'm really a Triple Negative. At my last chemo, my Onco mentioned TN and it really threw me. I kept thinking that if I had known, I would have opted for Mast. rather than a lumpectomy...however, I'm trying hard not to get into the "woulda, coulda, shoulda" game. I'm just ticked off that, although I read as much information about BC as I could, and have been fairly successful at keeping a positive attitude, I missed such an important point. Duh.
O.K. end of vent session. I hope everyone has a SE-free week. Take care. Helen
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Maire...I often feel the same way, especially in the morning hours until my body gets moving. One of the bc gals on another thread told me to add magnesium to my daily intake and it did seem to help. I take a 400 mg tablet each day with my calcium, Arimidex and Vitamin D-3. You have to be careful with the magnesium, though because it's major ingredient in laxatives so don't take too much! LOL You might want to give it a try because it and the D-3 have really helped me.
Helen...I hear you! I'm about like you except it is only my PR that is positive. I didn't understand this significance at the time of diagnosis and planning either. So, are you not taking the Herceptin since your HER2 is just slightly positive? If not you might want to check into this a little more. My onc is still giving me the AI's even with a low positive PR and being ER negative because he says it will still help. It's just so frustrating but we'd drive ourselves crazy (and in my case that's just a short trip!LOL) if we keep second-guessing things that can't be changed now. HUGS! We'll feel better when this wet, damp weather passes by, too.
Well, I have to make up some food to take into a friend whose mother passed away so I'd better get moving. Have a great day!
Rita
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Good morning all. Not a great day here....gray and a mite chilly. Better than rain of course. Our moods, aches, QOL (sleeping, eating, working ) all revolve so much around weather. I clomp around in the morning and a day like today offers little in the way of inspiration. If it weren't for the things I have to do ( I should be thankful here ) I would probably do absolutely nothing. I also note that much of these feelings have come with age and that probably makes sense.
Helen, would it be possible to have your Er-Pr,Her 2, retested. Since it seems so close --- and could have such impact if the numbers are a bit higher....well, hope I am not raising hope that may not be possible....but guess I would want that certainty. Everyone wants to do as much as they can to quell possibilities.
Having said that, I did not fully understand what Er-Pr etc.meant. Only that I could go a bit farther meaning 5 yr. pill, to deal with my diagnosis. Fortunately, I had an Avon patient navigator who sat down with me and went over my path. report. I still came away with the same info....that I had something extra in the arsenal to fight with that others would not. Yet, it was not until much later, when someone I knew here in the town where I live turned up Triple negative that I REALLY understood with complete reality what that meant.
Hopefully, you will be able to take some sort of AI because in five years or less, something ( and I sure hope it does ) may come along to completely change the outlook for bc patients to the better.
Hope you all have a really good day despite the weather.
Hugs,
Jackie
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Had my 1st AC the 31st of March and 2nd coming up April 21st. It's all soooooo confusing! All I know is my onocologist told me in the case of the ER, PR etc. it's good to be postitive and bad to be negative... I don't see him again until the 22nd but I have a lot of questions! I think the first time I saw him I was still in shock.
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I think I might be terrible at this.....and even have it all wrong....but here is what I would think reading your diagnosis Jo.
IDC speaks for itself. Stage 1 I think refers to the size of your tumor.. Grade refers I think to how different the cells look as opposed to normal cells, and you had 15 nodes with some sign of cancer cells with #16 being ok. Your tumor was fed by estrogen ( female hormone ) and progesterone ( male hormone ) but you do not have an over-expression of HER-2-neu....another hormone. I think there are 3 AI's, any of which could be used for you Jo, but only people with Her-2 over-expressed can be given Her-2......it will do nothing for we who do not have the over expression. The other AI's are given for a variety of reasons....but it is my understanding that a lot of the decision is based on whether you have ovaries or are in or through menopause. Now that I have probably confused everyone...including myself throughly...I will sit back and wait for someone who probably has the correct answer.
Hugs,
Jackie
p.s. sure going to be sorry I sent this if I do have everything backward.
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Jo...I think that the ER/PR thing confuses alot of us. The four main categories are ER+/Pr+, ER+/PR-, ER-/PR+, and ER-, PR-. ER refers to estrogen production and PR refers to progesterine. The ER+/PR+ responds the best to the AI's which inhibit the production of estrogen, which is fueling the growth of the tumor. If your tumor is fueled and kept growing by estrogen production and you take that away, you have a great chance that you won't develop new tumors because one of its main "foods" has been depleted. ER+/PR- is the next easiest to treat because estrogen is the main female hormone, with progesterine being second. I am ER-/Pr+ and they are still giving me the AI's. It is unlikely that I will benefit as much from them as those of you who have full-blown estrogen and progesterine production, but since my tumor was fueled somewhat by progesterine, they felt it would help me. Those who are ER-/PR- had tumors that were fueled by things other than hormones. Thus there is no need to give these gals AI's because there is not enough estrogeon/progesterine to block. I did a lot of research and asked alot of questions about this because my combination is fairly rare and there has been little research done on my combination. Naturally this doesn't make me real comfortable with my situation but I guess we all do what's needed, eh?
I'm still working on every benefit that I can and walking in any walk that's near enough to do because we need that cure!!! I think the ER/PR markings are a step toward the cure, but the hormones are not all that's causing this disease. You're exactly right! If the doctors had the answers, we'd have that cure already! It's still a work in progress.
Rita
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Rita Jean, Illinois Lady, JO--thanks for the comments. RJ, that explanation does help me understand more about this negative aspect. I'm not on Herceptin, just AC, then taxol, then radiation. Part of this may be because I signed on for the Avastin clinical study and our chemo is strictly regimented. Again, I signed up before I had researched enough, but that's on me. I hadn't thought about asking for a retest, but I will ask the oncologist about it when I see him next. My primary mentioned when I was first diagnosed that I could possibly benefit from my "age." I remember reading somewhere that 1) older women are usually not TN (how on earth did I manage to do that??) and 2) those who are TN may recur at a lower rate.
Anyway, I'm going to let go of this TN thing and focus instead on how I'm going to stay awake until it gets dark enough for me to go to bed. Yawnnnnnn. Take care, all. Helen
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I will have another surgery to clear margins on the day before my 66th. I hate the way so called friends head to the hills. First time they hear want to do everything, then dissappear. I live alone 50 miles from my kids. I sold the big house and retired to cape cod. I guess I thought I would be healthy for a few more years. It is a very difficult disease to come to grips with. There is no local support group, but thank God for this one. I was in a terrible state and cried all the way home today, had to take a lorazapan. Then I got on the computer and found this site. Thank you to all of you I feel like I am not alone. I don't like the way your husband is treating you, and if I were you I would sit down and tell him how much he is hurting you. He is supposed to be supporting and loving. Good Luck
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Anyone else from Cape cod on this forum? I would love to meet with a group so we could help each other.
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