Illinois ladies facing bc
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Char - I have done 2 Zometa infusions, and will do one more in Jan. I'll be finishing my AI then, so the plan is for that to be my final Zometa. I'm osteopenic, but my levels dropped significantly in a 1 year period after I started AI's, so I went with my onc's recommendation and did the infusions to try and keep me from dropping into osteoporosis. There was some confusion with published study results and the possibility of a double benefit of having a slightly reduced recurrence risk, but when he explained the breakdown of the populations in the different studies, he still felt I was a good candidate to benefit from it. It's really something you have to discuss with your own onc regarding your personal situation.
So far, my numbers have held steady, and even slightly improved. I was worried about the potential of osteonecrotic jaw, but after discussing it with my onc repeatedly and a few others, I felt the very small risk was worth it - for me. After my first infusion, I did wake up the next day with a fever and chest pain - almost flu-like. But I just laid low all day and a little of the next day. By Monday I was perfectly fine and went to work. The second infusion I had no side-effects whatsoever. I did make sure I was really hydrated, drinking through the infusion even and my onc does administer a bag of IV fluids before the infusion. Also, he does a 30 minute infusion. Really, the only part of the infusions that bother me are being back in a chemo room for them. Talk about unpleasant deja vu. But, they did give me a single room, so I just watched TV and dealt with it.
As far as AI timing, I was on Tamoxifen for 1.5 years, then switched to Aromasin in 2/07. Because of SE's, I switched to Femara in 12/07. My last dose will be in 5 months (not that I'm counting), 5 years from when I started the Aromasin. I'm anxious about losing that mental safety net, but I'm also interested to see if I will feel better overall. I won't miss the ongoing joint pains, and I'm curious if my hotflash frequency will change. For a while, they seemed to go away, but they have returned with a vengeance. I'm not sure if it's just coincidental, but my last refill (I get 90 days at a time) was for the generic for the first time. Or, it could just be that it's summer and I do get hot more often - which triggers hotflashes for me, just like drinking a cup of hot coffee or tea.
My onc told me that the study to determine if there is benefit to continuing the AI's beyond 5 years finished a year or so ago. Final results from medical studies take forever, even years to be published. However, he did say he thought they might have preliminary results before I'm ready to be done. Perhaps that's the 2 year extension that Char mentioned above?
Lisa - Good luck on the Tamoxifen. I know some people have a hard time with it, but I swear it was the easiest medication I ever took! It was like placebo.
I'm starting to have bouts of panic about my upcoming proph. MX. Just bouts though. I think it's better when I don't overthink it. I'm confident in my choice to do this, but the emotional part of it is very complicated (as all of you well know) and it keeps trying to drag me down. I have a feeling that as I get closer to the date, I'll breakdown and have good hard cry about all of it, and then push through and just do what I have to do.
Fortunately, I have a Labor Trip to LA with my DD scheduled before my surgery, and that will be a fun distraction.
Have a great weekend, ladies.
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Yes, now it makes sense. I take the pills until March-2011. I just needed it renewed for the rason someone suggested here. I am relieved. The scrtpt is still out and I last had a pill yesterday, but it has a life of 8 days in the body, so I should be okay. In a sense I am glad I have this time as there are some issue i want to deal with before I stop that drug (increase exercise, lay off the milk and wine and chocolate)....like very big things. With that said, I just completed a three-mile walk. My awareness is certainly heightened.
My niece and nephew and my brother are coming for a few days. That will keep me busy. These are the two children from Vietnam my brother adopted in his late fifties. I do not know how he does it as they are very active as children should be. This year it is a shorter visit so we should be okay.
Have a good Sunday!
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Happy Saturday to all of you. I am officially off summer vacation and back to school already. I have been at school all week working and no play time at all. The kids are coming back on Weds. but we have meeting and a school picnic next week. I was given the job of redecorating our teacher lounge...so the designer girl went full speed ahead and turned the lounge into a spa / beach retreat for the teachers. I must say it looks great. New cabinets, counter tops, frig. coffee pots and all the kitchen stuff and a big budget too.. Now they want to stay in the lounge instead of the classroom. lol. I am glad they like it as much as I loved doing it.
Lago...have fun in Boston and have some lobster for me. yum
Mak....thinking of you and hope your txs are going well. Hugs to you.
Smerf....how are you doing? I did have a child who wore a helmet for protection in case he hit his head.
Jackie...love your quote and have fun with Rita at breakfast.
Rita..have a safe trip.
Zap...glad you are doing well. Have you been up north for any treasures.
Well this is a quick drive by hi as I am off to make dinner for dh who is biting the bite.
Have a great weekend.
BJ
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Hi ladies -
Mak - sorry you are having a rough time. You are in my thoughts as you go through this again. Yes - look forward to that clean scan
Mad - is your PS Ferlman - that is who mine is and I know he is at Edward and Rush Copley. I understand lots of anxiety on chemo. It was so scary to me. But, you will do fine. I usually felt fine the day of chemo but 2 days later felt like yuck.
Susan - Congrats on the 5 years. I will be there in March. Time sure flies by.
Char - I was told that I have ostepenia. My obgyn put me on Actonel which I hated! It gave me all sorts of trouble and I will never take it again. Spoke with primary and onc and they both thought I was fine to wait until the next scan to see if it gets worse. Went back to obgyn in Feb and he didn't like that I wasn't taking anything. He gave me a script for something else - Atelvia. I still have the script in my drawer. I am not taking it until my onc thinks I should.
Had a bbq at a neighbors house last night. It was fun but I got eaten alive. I don't think I have ever had this many bites. We also found a dead skunk in our back yard today. We started noticing the stink in the house so I took a walk around and there it was. So disgusting! Kids are back at school on Monday. I am ready for them to go back but not ready for cold weather to arrive!
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Connie....yep, ferlman.... I like him a lot!!! Except I like how is assistant fills my expanders much better than him and his huge gauge needles!!! Hopefully one more fill and I am done until my exchange!!!! Did you have him do your nipple tattoos??? The ones he showed me when I first saw his "catalog" of work I did not like the pigment....I'm hoping there are color choices if I decide to do it....I've also heard about going to an actual tattoo artist, that kind of intrigues me.....
What the heck is ostepenia??? Seems like it could be yet another lovely thing to expect down the road??? A lot of you have mentioned it....
I'm wiped out tonight, my daughter's sleepover last night and than her and I went shopping all afternoon after we took her friend home.... We might go into Chicago to my parents boat for the air and water show tomorrow....not sure if I can deal with the traffic though. UGH!!!!0 -
Connie....I don't think I mentioned how much I really like your avatar picture. Though you are young, the picture brings that out real nice.
Glad you mentioned your Osteopenia experience. I thought someone had said at some point that they wanted to wait and make sure something for bones was actually needed. Just could not remember who.
Summer is seeming to go by so quickly.....the nuts and shells have slowed a bit ( I was in a near panic at the amt. last week ) and we are not having to take the leaf blower to the driveway twice a day for now, but I know it will be back all too soon. The squirrels must have gotten confused for a bit. We are seeing small groups of deer in the yard almost daily. Often there are four or five and this morning there was a mommy and her twins. The spots were very faint on the twins....but they were delightful to watch emulating the mother....munching on what was on the ground. I am a little mesmerized by them. They were not here when I was growing up.
Bj....whatever inspired you to choose the spa/beach for teachers lounge. Be careful or you'll get tapped for other re-do's at school.
Well, better get a few more things done. I am looking forward to visiting with Rita in the morning. I'm sure the time will go too fast, but it will be such fun anyway. See you in the morning.
Hugs, Jackie
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Char I too have slight osteopenia… I was tested just before I started chemo. My onc put me on Calcium supplements and told me to walk at least 30 minutes a day (granted I was already doing that). She was going to do the zometa but then the study came out that for people like me there wasn't the bone mets reduction benefit. She said to have my GP monitor my bone density but wanted me to test again in another year. I will be testing again next month. Fingers crossed that it hasn't gotten worse.
Osteopenia is pre-osteoperosis. It's a warning sign but usually isn't treated with drugs like osteoperosis.
I had a blast yesterday. Felt like a tourist with my friends. Did a harbor tour in the afternoon with a childhood friend and another friend from HS. Tour cruised by all the "points of interest" like where the Kennedy's peed and crapped. I forgot how much Massachusetts love's their Kennedys. Ate some fried clams. At night I met with my best friend from HS. She's such a nice woman. I didn't get home till 12:30… parents waiting up.
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Lago, sounds like it's been wonderful out east!!! LOL at the "kennedy" tour!!! And your parents waiting up for you!!!
I'm sitting here debating the air & water show this morning....my daughter really wants to go but I'm not sure I do? I dont know.... Do I just get out of bed and in the shower and GO? I wish it wasn't an hour away.0 -
That's cute, Lago. I still wait up for my son when he comes home for a visit. He's all grown up...in the navy, married and has a son of his own! But I just gotta know that he is safe.
Have a great Sunday everyone.
Navy
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DD went to air and water show yesterday, but went the very fun way by going to a roof top of friends, took the elevated there so no parking woes. She said that people have "yards" up there with squares of space with trees and plants. Sounds so cool. Will be interested Madismom, to know if you went.
Lago, you sound like you are having a blast. I too love the concept of parents waiting up for their kid Lago.
We made the ultimate mistake of going to the Wheaton all-night flea market. Oh, what a bust. They had a porno queen from the 70s there and the guy who played the Hulk. We thought we would find a nice little table from the Victorian days, but what we found! It was all night but we went from ten until eleven and that was enough for us.
BJ, cannot believe you are back at school. Our wonderful school nurse is not coming back and teachers and families are so upset. She was more than a nurse! We are not certain why she retired abruptly, and pray it is not health. I had to go to school to learn a new computer program for subbing and saw all my old friends. I love kabitzing with them, but am truly happy I am not doing long term work. It just seems, BJ, that summer went too fast. I am sure Paul and I will be going to Elkhorn at least once during the Fall and I can let you know the date to see if you are available for a glass of wine and some talk. I know you like to leave early as now Sundays are school nights for you. I do hope you have a great school year.
Connie, time does fly by. So happy that your anniversary is coming up soon. Thanks to everyone, by the way for the arimidex clarification. I should have used my positive thinking techniques rather than tilt into fear mode...I forgot!
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"Continuous effort--not strength or intelligence--is the key to unlocking our potential." [Black Elk]0
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Ok.....I have a wonderful post floating around somewhere in the universe. I think maybe some alien may be saying.....what the heck is this broad talking about and why.
Anyway....I am way late with the quote as I spent all my time getting organized, and spiffed up ( two loads of laundry in the middle ) to meet Rita this a.m. What a pure delight. Their was hardly a moment that wasn't filled with chatter. Though it was only 2008, and not so terribly long ago......Rita is just as I recollected --- only better. On our first meeting I was I think, in a little bit of overwhelm......just so amazed that anyone would choose to come such a distance to see me and spend some time.......and still feeling after effects of chemo. Well, bluntly, I was far from my best and I'm not even sure that I have one of those anyhow. So Rita was lovely and sparkly and always has an adorable twinkle in her eyes which makes her easy to be around.
Time went all too fast, but Dec 3rd. is on the horizon so there will be other great times to be had and I'm looking forward to it.
Hope the rest of your Sunday is wonderful.....I'm still on Cloud 9 myself. See you all later.
Hugs, Jackie
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Mad - I never had Ferlman's assistant do my fills - only him. I did not get nipples or tattoos. He mentioned that because I had radiation, the nipple might "melt away". So, rather than go through more surgery, I just kept my football foob as Susan calls it. It really doesn't bother me.
Thanks for the compliment on the avatar Jackie - that was on the Brooklyn Bridge on the fun trip I had with my sisters. Glad you got to go out with Rita. She is a gem!
Glad you are having fun, Lago!
School tomorrow!!
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Happy Sunday to all. I spent the entire day in Chi-town at the air and water show with my dd and dh. The weather was so perfect for watching those planes. Amazing. Went to Carmines on Rush and ate outside. Great Itialian restaurant. Sat and people watched all afternoon. Taking the train is the best way to get around when there is so much going on down there. It was a perfect day !!
Jackie...oh I am so glad that you got to see Rita and spend some time chatting away. Yes Rita is a gem and a sparkle one at that. I do hope that you both are able to come up for the holiday party this year..Glad you had a wonderful day too.
Rita...hope you have safe trip and enjoyed your day with Jackie. Did you take any pics for us to see. It was a tops down fits up day today. enjoy your family.
Connie...ready to sent those kids off to school. lol boating season is slowing down and soooo sad. I have been back since last week and already looking forward to winter break lol. love your new pic too.
Mak...thinking of you and hope your txs are helping. You are one tough girl...hang in there. hugs.
Char...I have osteoporosis and mine is due to my thyroid issues and being in menopause not meds.. They wanted me to do the Reclast but I am holding out on that one. Taking my Calcium and Vit D and running. So far so good for me. Will have a dexa scan in Oct to ck things out. If bad then will do the Recalst.
Lago...having lots of fun in Boston. I just love the East coast. Charming
Zap...hunting for treasures at night??? Sorry that you didn't find anything. A porno queen?? Sound like a interesting evening. I went to a wedding last night with all my teacher 's that I work with and the principle too. The video guy kept video taping us all night. He was old and creepy looking....told the bride (teacher) she needs to cut us out of her tape.He took more of us then the bride! Creepy. Let me know when you go up north and let's get together for drinks.
Well off to dream land now as school has started...have great evening ...
sweet dreams.
BJ
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Hi ladies...we are all moved in and unpacked. I am officially in Chicago now. Anyone else have kids starting school this week? School starts so early here. In Michigan we always start school after Labor Day weekend. We are finishing school supply shopping tomorrow...my little guy is starting Kindergarten! I am excited though as my mom and sister are coming with my neice and nephew for Labor Day weekend. We plan to spend that Saturday downtown but what should we do on Sunday? Any suggestions for fun things going on not too far from St Charles? We figured the kids would want to swim at the pool at some point Sunday (we have a pool where we are renting) but I was trying to find something else fun to do on Sunday too. Any suggestios appreciated. Thanks! Now I can't wait to go back and read some of your posts and get to know all of you
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Hi ladies....just popping in to say Hi! I couldn't be anymore pooped tonight, I did end up going to the Air and water show....I had to drive to and from Hammond marina (by horseshoe casino) because that's where my parents yacht club is.... We took their boat to just off Navy Pier to watch....the good news, ZERO traffic....bad news, LONG day!!! It was pretty darn cool though!!!! The fighter jets were flying over our heads!
Hi Mdg, glad you are getting settled in.... Let me brainstorm things to do, what are you looking for.... Shopping? Walking? Amusement park? Biking? Sports? Take the metra train downtown when you go....it's so easy and convenient....and 7 bucks for adults roundtrip, kids under 12 FREE!!!0 -
Ok...of course I can't just pop in, have to read up on everyone too.... LOL
Zap....I've been to that flea market, was it at the fairgrounds?? We needed flashlights and I didn't find anything good either....it's been several years, no porno queens when I went....
BJ...creepy videographer.... WTH? Or I should use my fave "whiskey tango foxtrot". I love that!!!! I looooove Carmines!!! YUM!
Connie....I'm leaning towards no nipples/tattoos too, no rads for me but I'm not really missing them??? Maybe down the road? His assistant is Ashley....she's sweet. Uses these tubes/catheter device instead of the massive 10 gauge syringe!
YAY for Rita and Jackie....sounds like a great breakfast!!!!
3 more days til my daughter starts 3rd grade, what happened to the terrified little girl we used to pry off my leg for preschool??? Sniff, sniff....my baby's so big now!!!!0 -
mdg - Naperville has their annual "Last Fling" on labor day weekend. Carnival, food, entertainment. They usually have some pretty good bands there - I think Sister Hazel is there on Saturday. It is usually a good time for wandering and people watching and the kids like the carnival stuff but I think Saturday is the day for the unlimited carnival rides for $20 - otherwise you pay a mint for the tickets. www.lastfling.org
I think about other ideas for you.
Son off to first day in high school this morning - sniff, sniff.
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When life takes the wind out of your sails, it is to test you at the oars.
Robert Brault
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Good morning everyone. What a fantastic day! Dropped oldest DD at Valpo Saturday.....
Hate it, hate it, hate it!!!!!!!! But am very excited for her. (c:
Connie- Thanks for info on the last fling, might have to check it out. DH rode his bike to your area yesterday... he's a bit nuts.
Peace.
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Good morning on Monday.
Connie....Good training here for four yrs. from now. It is a new era of adjustments though. Hope it all goes super.
Overcast right now, but the humidity is going to stay down. Though I so enjoy B-Fest it is also nice to the town to get back to 'normal'. We are still using just one lane through part of town. I was amazed that they "worked" on this and had it all blocked during Balloon Fest time. It is always a little 'iffy' for traffic and then to allow only one lane. Well, we made it. I personally will be very glad to see those barricades down and the road back to normal use. It's tiresome.
Hope you all had a gorgeous week-end.
Hugs, Jackie
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Hi girls...back to school already!?! When we were kids we didn't go back until after Labor Day...jmo...summer doesn't end until then! lol
As for the Osteopenia...my Dr. said most women in our age group, regardless of bc, have it. He won't treat it - thinks it's premature to do so. I agree. Bone density test every year to check it.
Have a nice Monday!
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Good morning ladies! I just wanted to check in to let you know the results of the mammo were Birads 2 with follow up in 6 mos. I am still planning to move forward with the MRI but because of insurance regulations I won't be able to do that until mid Sept.
I do see the MO on Wed and will talk to him about what's been going on but it's looking like all of this pain & swelling may just the be results of the trauma (most likely the radiation). So as they say, I am the lucky recipient of the gift that just keeps on giving! Guess I better start getting used to this "new normal".
Oh, and I will be headed down to Naperville Last Fling to see Sister Hazel too!
Hope you all have a wonderful day!
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Just a quick wave. Had fun out here on the cape except for the cold. Today was really bad but I'm finally feeling better. Just stayed in bed all day (or posted on the forum).
And guess what. I have an interview for freelance on Wednesday. It doesn't pay much but it does pay more than the Apple jobs, no nights or weekends and it's off Mich ave. It's a start.
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Well....my insurance chemo blocked me for tomorrow!!! Some big snafu with the neulasta shot getting approved and apparently shipped to me at home....SO, I'm delayed til Aug. 30th now....it's only a week but still. Another whole week of anxiety over starting this.... Hopefully this gazillion dollar shot ships to me by Friday!!!!
Lago...Boo that you haven't felt well, that stinks!!!! Feel better soon.....
Jenn... Well, that's great news on the mammo!!! And hopefully the MRI is all clear when you get to have it!!
I haven't thought about Last Fling in years until Connie brought it up....that is a great festival!!!! I'm not a huge Sister Hazel fan but it might be a must do this year....one of my last outings with hair!0 -
Thanks to all who responded to my question about treating osteopenia with Reclast.
Jackie - I was on Actonel for about four years (osteopenia) but stopped taking it two months before I was diagnosed with BC. Eight months later, shortly after I finished chemo, had another bone density test and it was normal. Now a year later, and a year on Arimidex, I have osteopenia again.
Connie - I did OK on Actonel and would rather take that than Reclast I think.
Rene23 - Why Zometa and not Reclast? I believe they are the same thing but different doses? How often do you get the infusion? My onc is recommending every six months.
Today I made an appointment to see my GP for a second opinion and plan to also call my dentist and discuss the potential problems with the jaw bone.
Good night to all.
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Hey girls...just thinkin'...how about a dinner get-together in Schaumburg? Sometime soon?0
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mdg - WELCOME! I am so happy you found us! Can't wait to meet you AND ALL the new girls here! Thank gawd we have each other...
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Char - Zometa and Reclast are the same active ingredient. I believe the primary difference is in the dosing. One of the sales reps for Reclast told me that they are marketed differently, with Zometa being generally used more for cancer patients, and Reclast for osteo patients.
My onc recommended every 6 months for me. My infusion in Dec. will be my 3rd and final one. Osteopenia isn't generally treated so aggresively, but my onc feels that because of the dramatic drop in my numbers after being on AI's, it was not the same situation as another woman not in treatment. The slight, but proven reduced risk for recurrence for post-menopausal women is the other reason he felt this was a good choice for me. I'd much prefer annual or biannual infusions over weekly or monthly pills later in life. Any bisphosphonate medication, infusions or pills, carry risk for jaw bone issues, but the risk is quite low for most. People who are doing the infusions for myeloma, or who have a history of dental issues are at increased risk.
It really is one of those areas of our treatment options that has a lot of wiggle room for every individual to weigh the benefits vs. risks and choose what they are personally comfortable with.
Here's a nice post that breaks it down a bit more. Post #3: http://www.nosurrenderbreastcancersurvivorforum.org/post?id=5098780
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I was diagnosed in july 2011. Had mastectomy July 27. Live in Skokie. hanging in there.
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