Illinois ladies facing bc
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Kater.....I had that long before cancer......so it was just a item to include in my medical records I can't say I'm sure of test figures and all that but I do feel since this is a fairly common disease I'm confused as to why you are getting two totally opposed diagnosis.
For myself, I think the first thing I would do is find somewhere and someone who can definitely establish what your medical situation is in this regard. You really do need the proper meds as I know you know.....it will have a huge effect on how you feel and operate --- very much mentally and physically. Was it lab error ????? and if you have two different diagnosis....someone should be calling for more testing....right away. That is the part I don't understand --- how can anyone treat you properly.
Anyway.....hope you can get this cleared up......soon. Wishing you the very best.
Hugs, Jackie
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Joan, it sounds like you really had horrid side effects from the arimidex. I do get this pain on my ribs on the radiated side that comes and goes but is very uncomfortbale when it comes. I get it when I move in a certain way or twist. I think it might be from the radiation. It comes and goes, so I figure it is not cancer and has been this way for four years.
Yes, I too found that video very powerful.
Have been working a lot. I am able to cancel work last minute if baby comes. We have a busy weekend of entertaining this next weekend so I have lots to do today and so I took the day off. Nice schedule to say the least.
Have a good day!
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I just thought I'd say hello as another "Illinois lady!" I've had multiple breast biopsies over the years, always benign, so I was skeptical when asked to have another yet another last November but it turned out to be IDC/DCIS. I had a lumpectomy with clean margins in December, low oncotype score (10), and am on my third day of radiation. I live in Chicago and work from home, empty-nester, and I feel like I have it really easy compared to so many of you. Still, I get agitated (mostly with my non-communicative medical oncologist) and it helps to read through the forums. So thanks! and best wishes to all.
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P.S. I too am curious about the foot IV, Iago. Is it to preserve your arm veins?
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Adey it's on the top of the foot. Not bad at all. I've had it for 2 liver scans, MUGA, exchange surgery and nipple reconstruction. OF course you feel the first prick but that's about it.
Chicago1958 I had lymph nodes removed from both sides (10/4) I have LE (lymphedema) in one arm and the other does feel heavy at times, also had cording so I know it's at risk. Getting stuck in the arm puts anyone at risk for infection. Since my lymph system is now challenged to to lack of nodes that risk is higher. Also if the the arm that doesn't have LE gets infected it could start the LE. Right now they don't think I have it but the heaviness is a sign of risk.
I too live in the city. What hood do you live in? I'm in Lincoln Park linky
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Hello Ladies-
Lago-glad the inking went well and you are happy. Good for standing up for yourself-as we say so often, we do have to be our own advocates.
I have a situation on which I'd like to hear your opinions-although I've had pretty regular periods, test came back saying I'm in menopasue. Onc says Tamox or Femera with monthly Lupron injections-she's leaving the choice up to me. I have no idea, I'm not the one who went to medical school...Perhaps I just need a new onc? Due to insurance change, have to move from Loyola in the next few month anyway.
Feeling a tad adrift~Thanks.
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Spunky there are issues with both and your onc should be discussing this with you. I know my onc felt there was no way I was going back and would remain in menopause. I am on anastrozole (generic Arimidex) only no luprin shots. She did monitor my estriol levels for a few months to be sure I stayed in menopause. Since I do have some stiffness I know that the drug is doing it's job. Also my onc if given a choice seems to prefer the AIs because they have less serious SE. Not sure what the SE of Luprin is though.
and you are 6 months older than me.
I have a friend that didn't do chemo that is a year younger than us. She is doing luprin shots and Anstrozole because she has several health issues including blood clot concerns so Tamoxifen was to risky for her.
I didn't start my Anastrozole till 6 weeks PFC. Most women who do rads also wait till after they finish. Will you be seeing your new onc soon? If you don't have an appointment I would make one ASAP because they can be busy. Make 2 with 2 different ones so you have choice.
I really hate when I hear "it's your choice, you pick" and they don't give you the pros and cons as well as their recommendation and why. I feel lucky I seemed to always get an explanation without even asking.
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Hi Chicago1858 - we were diagnosed a week apart. Today was #17 of 35 radiation treatments for me. My oncotype score was a bit higher - 14.
Joan - Praying that your MO is succesful in getting the name brand Femara.
Zap - have fun entertaining next weekend! So excited for pictures of baby zap soon!
Lago - Awesome that you are happy with your tats!
Blackjack - thinking about you and hope you are feeling much much better.
Kater - I hope you get your questions cleared up soon.
Lisa - hope everything is ok with your family.
As I start the Tomoxifen train, is there a brand or generic name that anyone has had a bad experience with?
Have a great day!
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Julie - Great to hear from you. It sounds like you have some good reccs already for a new MO, but if you decide to consult another one, let me know. The group I go to is near you. I'm actually do e seeing my BS on a regular basis. Hopefully, I won't be needing him again! I see my onc every 6 months now.
Joan, sorry to hear the SE's got so bad. That's how I got with Aromasin too. Femara certainly wasn't pain free, but after a certain amount of time, it became very tolerable. I didn't get switched to the generic until the last few months of my therapy. I definitely think I felt a change in the form of hot flashes returning. Good luck getting the name brand approved.
Welcome Chicago1958. Pull up a chair.
Lago, glad the tatts went well. I'm thinking maybe in the fall I'll start thinking about all that. Right now, I'm still on the fence about my synmastia repair, but it hasn't even been 2 months, so I'm trying to be patient. Also, good for you for insisting on the foot stick. It's unbelievable to me that a diagnostic professional would try to do otherwise simply because he isn't competent.
Spunky, if you're still having regular periods, and have a high FSH, you should consider calling your Gyne and getting some input. FSH levels aren't black &white indicators, particularly if you're perimenopausal and still having periods. If you are truly menopausal, then that bleeding needs to be addressed.
Clearly, I'm having a slow morning at work.. 0 -
Spunky, I probably am not the best candidate for such questions as I have been post menopausal for a very long time (half think the early menopause followed by YEARS on hormone replacement may have caused my BC). I do take arimidex and have so few side effects. I have put on weight for sure, but I cannot totally blame arimidex for that. I am the sort of person who cannot be told to make up my mind on such matters as like you say I am going to the professional to get information I do not have! I would go to another and ask for them to really discuss the options with you. My onc did not give me a choice as I was clearcut in post menopause but he did mention some of the problems I might face. I do remember him saying that the meds for five years gave me the best chance of not dealing with BC again (that is, chemo and radiation were needed but meds for five years gave me my best bet.
Welcome to Chicago1958!
I think we tend to think of shots in traditional parts of the body. I got my shots in the stomach and although that sounded weird, I do not recall any bad memories associated with that and I got them in my stomach as it was always such a struggle doing it elsewhere.
Enough of me. I too am having a very slow morning Rene. Kinda love them.
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Arimidex vs. generic (hair loss)
I seem to be losing a lot more hair taking the generic so I'm going back to full fledged Arimidex.
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Spunky - I was 45 last year when DX and was not menopausal. I did chemo and never had a cycle again. I started Tamoxifen about 6 weeks post chemo. I have been on it ever since and have had no periods yet. I have seen two med oncs and neither of them were into testing to see if I was menopausal or what was going on with that. I was told I did not need lupron at all. It seems like every doc does something different which makes me frustrated. I want to make sure I do the right thing. I know how frustrated you must be.
I only had a quick minute....heading out of town for the weekend to see my BFF in Cinciannati since DH is in Australia. I hope you all have a fabulous weekend! Enjoy the sun - especially since it's super chilly outside today!!
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mdg your regiment is typical for your situation. Those of us that were pre-menopausal (even peri) usually get tamoxifen at least for 2 years (then switch to Aromisin for 3-5 years) to be sure that your cycle doesn't return. Luprin/AI is another way to go as well. I'm sure if you were having issues with tamoxifen you would be offered Luprin/AI. There is more than one way to skin a cat.
Prior to AIs everyone got Tamoxifen that was hormone +
What I'm doing is a bit more unusual but based my family history (mom & sister) my onc (and I) were pretty positive my cycles weren't coming back. I was peri.
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Lago, how interesting that at the same time I am asking my new Onc to just forget about all AI's, you were typing, I have joint pain so I know its working. Well, I will let that be my new mantra for today because he does not want me giving up the AI's. He said try to tolarate as long as possible.
I wouldnt allow them to even do a blood pressure cuff today. WE Illinois gals are tough.....Onward
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Onward my friend who is doing Luprin/Anastrozole… this is a 2nd primary for her 2 years after her first. She didn't take the tamoxifen like she should. She didn't get chemo (low oncotype). First time DCIS this time IDC. She didn't want to take the Tamox because of blood clot issues. She is quite a bit overweight as well so I think she really would have benefited from it. That's why this time she knows she needs to do it. She has 2 kids in high school, single mother (dead beat dad). I think she's doing OK on the Anastrozole but not loving the Luprin. Lots of hot flashes.
But many women try as hard as they can to tolerate the side effect because it is an indication that it is working… but if you don't get SE it doesn't mean it isn't. It just means those of us we SE hate you a little bit
I worry that my SE might get worse in the coming years but right now I'm doing fine. I can understand why your onc wants you to continue.Hormone+ with grade 1… these estrogen suckers and blockers might be more powerful than chemo for you. I do find when I'm not moving around I can get pretty stiff. Even my toes will stiffen up again if I don't walk enough in one day but I don't have the pain that you and Joan have been dealing with.
I find best alternative place for BP is my ankle. Runs a little high but still normal. If they do anywhere on my leg the machine goes crazy. When I was on chemo my onc insisted on my arm. I would only let them use the manual because the machines go too tight… on the 4 node arm only.
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ONWARD - YES! lol And you're tough at Words With Friends too! LOL
Edited to add:
WELCOME 1958!
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Hawk, Rene, Zap -- Thanks for all the welcomes, I do appreciate it!
Iago, I'm in Beverly, do you know that neighborhood? Don't judge us by the old St. Patrick's Day Parade... ! But our house is currently on the market and we plan to get an apartment on the northside or south Loop and a cottage in SW Michigan. One son graduated from DePaul, the other is there now, I've taught at their Loop campus, and my husband works and teaches there, so we have our LP ties (and really like it!)
Spunky, I had an uncomfortable phone conversation with my oncologist's NP last evening about the SEs of AIs. (that's a lot of acronyms in one sentence!) The oncologist had said to start Femora right away but I said not quite yet. Osteoporosis has been such a problem for my mom--think breaking bones from picking something up or from coughing, and severely compressed internal organs--that I'm reluctant to take ANYTHING that diminishes bone minerals.
The NP suggested a 6-month bisphosphonate injection and more frequent bone density scans, and I told her I'd think about it while finishing radiation. I know I'm lucky to have treatment options, but I hate the idea of chasing one drug with another. (I posted a response to you in the other thread but was confused about Lupron--I'm mixing up the bisphosphonate she mentioned with it. I'm not taking Lupron.)
I'm sure I'll start the Femora as directed, but the MO and his staff do not inspire much trust in me, and I do want to think it over. But as my RO said (and I do trust him), "Are we over-treating women with early stage cancer? Probably, but as almost all are cured these days, it's hard to argue with the protocol."
So for myself, I'd consider tamox if it were offered just because of my family history. I hope you find someone new who will give you more direction than "pick a card, any card"...
I agree with Rene23 about calling your ob/gyn -- I made an appointment with mine today to see if she can shed light on the menopausal periods.
Feeling self-conscious now -- that's a lot of stuff about myself -- but thanks for the opportunity to get it out, I've really been obsessing over the AI issue.
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Chicago1958 I'm the damn poster-gal for osteoporosis risk. Seriously I'm white, small boned, mom had it, used to smoke (quit 6.5 years ago), low D and drank at least 1-2 diet sodas every day since 1980ish until I quit when I started chemo. Yes my mom reversed it with HRT but they won't let her take that anymore because of me.
Anyway before I started chemo I had my bone density checked. I was osteopenic. My onc told me to exercise every day for at least 30 minutes (was already doing that and more) and take Calcium (D was already increased before diagnosis). After chemo (which put me in chemo-pause) and 5 months after starting Anastrozole I had my bones checked again. I only went down .1%, yes that is a decimal before the 1. Still osteopenic which is not osteoporosis and usually not treated. From what I'm told is you don't lose bone density that quickly. I too was concerned but now that I know they are watching my bones I'm ok with it. I'm not jumping on the reclast band wagon (I think that's what they may give my mom now) unless I actually have osteoperosis or have a sudden drop.
I'm not saying you will have the same results but if you do the things to keep your bones healthy like weight bearing exercise, not smoking, limit diet soda etc. you might find you'll be OK. I didn't want Tamoxifen. Mom has had blood clots so that scared me much more. Also the SE of the AIs just seem less intense to me.
Yes I'm familiar with Beverly. That's the northwest side right? I thought Beverly had some really nice homes.
I hope you have luck selling your home. I think things might pick up soon.
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Thanks Chicago1958-good information. Unfortunately, my family history includes strokes, depression, and osteoporosis (my grandmother broke her neck). Personally, I've had blood clots and am currently suffering a frozen shoulder, so SE's of both drugs make me nervous. Unfortunately, bc makes it difficult not to obsess...
On a totally different topic, my daughter is a sophomore at DePaul and LOVES it-she transferred from Boulder and couldn't be happier in LP.
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Spunky they are letting choose tamox when you have had history with blood clots?! What? I mean all the other stuff is family history not personal history and they can watch for that but blood clots is something I know I was concerned about and very happy my onc didn't recommend tamox. I would seriously think about getting a 2nd opinion before you start anything. I mean you need to switch oncs anyway because of insurance right? They onc should be helping you make an informed decision.0
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Iago, that is actually really good to know, thanks. I'm osteopenic now, but I do get exercise (pilates and treadmill) don't smoke, no soda, and take calcium (but not a lot, due to the disputes over the effects of calcium supplements on your heart). Can you tell I'm a medication minimalist? But I'll get over the Femora reluctance and your info helps.
Beverly is south, predominantly Irish-Catholic and African-American, and we do have lots of historic homes. I was afraid you'd heard of the former Southside Irish St. Patrick's Day Parade, which was discontinued after becoming a drunken free-for-all, but that's not typical of the neighborhood!
Spunky, the history of blood clots is especially scary. Sounds like now is a good time for you to be changing MOs, since you kind of know your way around and what you would expect from your doctor. Hope you find a good match.
And that's great that your daughter is at DePaul, what a coincidence! My son is a sophomore too. I don't suppose there's any chance they would know each other...
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I am very interested in getting a second opinion-please PM me with any recommendations. My insurance covers almost everywhere but Loyola. Thanks!!!!!!!!
Chicago1958-we spent a few years at the southside parade when my daughter was an irish-step dancer. We always left before it got too raucous
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JUST ...slow down. I love the Beverly area and that would be my roots. My aunts all came from St. John Fisher Parish which I hear is "fringe" Beverly or wanta be Beverly. Irish is good. Love Bevery!
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Speaking of the south side...my best friend lives near Sox Park! When we go to their games, we get to park in their garage - FOR FREE! lol
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Chicago1958 I'm from the Boston area. What Jews are to NYC, Irish are to Boston. Never judge by the St. Patricks Parade. OK now I know the area, or at least I've heard about it. It's supposed to be a pretty nice place, I mean the upscale hood of the southside.0
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Yikes, I just found out that my co-pay for the real Femara is going to be $454/month.... If it gets approved. I am going to rethink maybe trying Arimidex. Have to talk to my ONC tomorrow to get blood results and think I may tell him to forget the Femara appeal for now and send script for Arimidex. That is nearly FREE with Medco. It's worth a try.
On another note, I left my LE PT office today with my arm all wrapped up again. She was not planning to wrap until I told her I would be playing tennis tomorrow. Can take the wrap off in the morning, but decided to play it safe and just get a sub. I really need to take a dear friend of mine (terminal with myelofibrosis) for a transfusion anyway and get back to work.
How was lunch today girls? Welcome to Chicago1958.0 -
Hi all,
Just a quick drive by.
Yippee, finally someone else from the south side. Chicago1958, I am from Palos Heights and still live there. Did you go to McAuley? I did. A good friend of mine from work is from Beverly and still lives there.
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Okay girls...get out the cookie cutter...Valentine's Day is almost here
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Your success and happiness lies in you. Resolve to keep happy, and your joy and you shall form an invincible host against difficulties. Helen Keller
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