Illinois ladies facing bc
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Oh Carolyn, I'm so sorry that they are having such a terrible time adjusting your meds. Being in the hospital is nothing to be sorry about. Although none of us are fond of those places, they are there for us when we need them. Hopefully they got it right this time. I know those meds are hard to adjust because everyone's body is different. Hang in there. Hugs!
Susan, I'm with you on the arimidex. It bothers me that there is no safety net waiting for us when we finish and it appears that you, Wendy and I will all be finishing within 3 months of each other. There is still time remaining, though and hopefully they will discover something new and revolutionary that will replace the arimidex. As for the actual arimidex, I will not be sorry to hopefully erase the side effects. I still have sleep issues and joint pain. I have learned over the years how to modify them so they are not so bad but some gals say that the joint problems do disappear a few months after getting off the drug, I could go for that. I'm just afraid that my anxiety level, which seems to be high anyway, will sky-rocket if there's no replacement or security blanket for us at that time.
So glad that a few of you gals could do lunch yesterday. There's nothing like a 3 hour lunch with others who understand! :-)
Wendy, I'd try your "get to the gym" suggestion this morning but I'm afraid that if I looked at myself in the mirror in my bathing suit that my nausea from the flu would return and I think I finally got rid of it! I do need to get back on some type of routine. I don't want to look completely repulsive on the beach at the end of the month. Now that should be enough motivation to get me going!
Well, I'm off to get things picked up around here, take a package into Fed Ex, and get an contact lens exam this afternoon. Everyone have a good day!
Rita
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The summit of happiness is reached when a person is ready to be what he is.
-- Desiderius Erasmus0 -
Good morning.....Carolyn what an attitude !! Hopefully, your meds level gets right very soon, if not this time and you will be on your way. Like the others......so glad you had Nurse friends to step in and handle some of the problems.
Arimidex: It has not been bad for me. I do get some pain, but overall not very much. Seems to come more during dampish weather. I do have the Arimidex tummy, but overall.....I'm glad there is something to take. Somehow, I just don't think I'll ever have any more problems with cancer....and probably could even NOT take Arimidex, but as it was a part of the over-all program it has provided a feeling of comfort and I too wonder how it will feel.....if in 2013 I no longer TAKE anything. My first Onc at the V.A. indicated that he might not take me off of it when my 5 yrs. were up......but since then he transferred and there is a new Onc. I don't know what his thinking is.....as these drugs do seem hard on the bones ( I'm osteopenic too ) I'd like I think to give them up.....but we will see later on. I really don't have any other issues with the drug....just a little pain from time to time and nothing that is even enough for me to feel that I need to "take" any measures. Sleep fine and am still able to lose wt. even though that has been a very slow process....at least it does happen.
Onward....my mental fog...how long will you be on steroids?
Hope you all have a great day. I'm getting work done early and riding to Marion with Denny today...a little change of pace for the day. See you all later......and
Hugs and bugs,
Jackie
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WendyK13.... I had my swimsuit on last weekend for the first time post chemo, etc. Guess I should have tried it on at home before I volunteered to go swimming with my 7-year old granddaughter when I was in Seattle. I have gained 10 pounds since all this mess started and it definitely has to come off ASAP. I'm trying but it is hard to do this time of year.
My ONC put me on Femara seven weeks ago rather than Arimidex. I am not sure why he chose Femara rather than Arimidex. Going to ask him about that today. Sometimes I think I got Femara because the Novartis rep had probably just been by and he happened to have free samples. He gave me two months supply to try before committing to it. I seem to be tolerating it okay and I guess the SEs that I have now should subside after a few months.
Few little snow flurries in the air here but does not sound like anything we are going to need to shovel. Wendy... I hope your DH is right about that frigid weather coming next week. I will become a hermit for sure. So glad that I can work from home this time of year.
Hugs and Bugs to everyone. Make it a great day!
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WendyK13.... I MEANT that I hope your DH is NOT right about the frigid weather! Gross error!0
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Lunch with Jan, Laura and Joan was awesome as always.. I just came back from Trader Joe's after all the talk about the great veggies there.. Came out with bagfulls!! I do eat lots of veggies and it gets pricey.. this was a bit better!!
Going back to Seattle on Monday.. believe it or not ACS found me a driver to get me from the airport and take me to the hotel, which they also supplied.. He will then pick me up the next day and take me to the Hospital and then to the airport. I was completely impressed!!
Hoping the freezing predictions are wrong too!!
Marina
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I am glad, Marina they worked out transportation for you. You are invested in this trial and they are invested in you so I am not surprised they are trying to make this easier for you.
You are right, Wendy, too soon too worry about arimidex. I have another year. All cancers and all women are different. My onc told me that this little pill was of more value in reducing a recurrence than the chemo I took and so I hung onto those words as I thought chemo was pretty powerful. And lago, great advice about seeking lifestyle changes to reduce estrogen. I have a year to work on developing healthier habits. Like you all are saying, I am hoping that when I take my last pill, there is something even better out there to keep me cancer-free. Lago, I want to clarify something. I am significantly older than you. I do not feel I have had any significant side effects from arimidex but I have some joint and other issues that may be arimidex-related, but most probably is age-related. I do think you will fine. Like Jackie, nothing is so terrible that I take pills for it. Of course I have the damn back but I had that when I was in my twenties!
Marina, I know you like sushi. I picked up some from the Whole Foods and it was quite good Have you tried them?
I gave my grandkids a simple orchestra lesson today and Amadeus Mozarts we are not! I was pushing for the tinkle of the triangle while they liked the drum!
Carolyn, never be embarrassed. With so many people praying, God is surely covering you with blessings. I am sure that keeping cheerful is not easy, so allow yourself to complain to us if you need to.
Take care to all!
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You know I can see Carolyn being embarrassed. She is so cute that way. I had a friend/old roomate who used to appologize for everything. She too was very sweet and cute.
♥ ♡ ♥ ♡ ♥ Carolyn we love you just the way you are
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On the eyebrow thing.... I received the most thoughtful chemo care package from my cousin, who has been through it twice -- the care package had lots of very thoughtful gifts, brought tears to my eyes. Included were eyebrow tattoos in my shade! I had no idea such a thing existed. I can't vouch for how well they work, as I'm just starting down the chemo road, and have my full head of hair for exactly 38 more hours.......
Just thought I would pass that along, in case others were as surprised by the product as me.....
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Lisa, find out where she got them. I need em and quick.....
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She got them at www.headcovers.com
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Hi - I don't live in IL, but am about 5 miles from the IL/IA border on the Mississippi River. Can I join your group as an associate member? Finding decent care in IA has been a huge struggle so hoping I might get in sight into doctors in Chicago area through your group. I am a Medical Technologist who went back to schoo and got a Master's in Medical Library program, shortly before my diagnosis. Little did I know that my new skills would have to be used to find my own information. I only know one other person with BC in my present community. I had thought I would be a Medical Library at MD Anderson, until my husband was transferred to this area. So, no job and marginal health care and god forbid I question any doctor in this town! Thanks, Kay
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Dear Ladies,
You seem like such a great positive group I was hoping I could join in. I'm really struggling to remain positive. I live in Oak Park, IL. After all this breast cancer insanity something really horrible happened right before Christmas. My brother passed away at the age of 58, leaving 4 girls without a father, 2 siblings and tons of people without a great friend. I just can't seem to get into feeling normal again. Any suggestions besides walks and exercise? The only good thing I can tell you all is that his prostate cancer isn't what killed him, he had successfully beaten that. This is my second brother that has died of heart related problems at an early age which makes me really nervous about taking the AI's. I have gone against the grain and am taking tamoxifen instead of an AI and I feel like I'm tolerating it very well - but I'm still thinking why not just enjoy myself and live without the constant fears and worries and the side effects we all have. And yes, I know I'm depressed- but I think that it's normal to be mourning my loss. I'll be 54 in Feb. and part of me just wants to cash in my 401 K and hit the road. Any thoughts?
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makmak,
glad you found the ACS to help you. They are really great. I utiliezed them while undergoing radiation - as my DS couldn't be in 3 or 4 plases at once on most days.
Carplyn
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Dx in fall of 2006 with Infiltrating, ductal carcinoma which spread to the Liver. I had a total of 9 tumors and lesians in the liver. I am estrogen positiive, proestrogen positive and grade 3 HER 2 positive.
At least everything was positive in the awful diagnosis.
My mestectomy was cancelled after the liver spread news and I went on 7 rounds of Abraxane and Herceptin every 3 weeks. I opted to removed my overies because Tomoxifen was making the walls of my Uterus thick and causes Uterin cancer. I was then post menaupause and could go on an aromatase inhibitor like Femara. Everything dissapeared in like 5 months and never came back. It's now Jan 2011. I started this in 8/2006. I am still on Herceptin every 3 weeks and am checked up on contantly by a wonderful health team, Dr. Marina Vaysburd and Dr. Michael Harris and Mae Ushigomi - all part of Beverly Hills Medical Group at Cedars-Sinai......
You are all survivors and must be brave soul to pick yourselves up everytime you fall and continue living your life. I stopped for awhile pretending I wasn't depressed. Get up, get out and make your mark on the world. Take care as well,,,,
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Hi Onward,
If you are looking for eyelass to create try the store Naturally Yours, They have the guide and differnt collorts I believe. I saw them ther seveal months ago.
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Welcome valgal, kathy, and charlyn to the group no one ever wants to be in. This is a great great of women. Very supportive.
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onward I was so worried about my eyebrows that I google searched them before I even had surgery. I bought some stuff to fill in at Ulta back then. Anyway if you do a google search on eyebrow tattoos you will find many places that sell them online. Ulta does have some stencil kits if you want to draw them on too.
KansasKay The top 3 hospitals I would consider in Chicago (city only) would be University of Chicago Medical Center, Northwestern Memorial Hospital and Rush University Medical Center. All three are top teaching hospitals. I am being treated at Rush. Check my bio for more detailed info (click on my screen name). Sorry you have to join us but welcome. These ladies are wonderful.
Valgal You statistically have an excellent prognosis. I wouldn't be cashing in the 401K if I were you. You will regret it when you're an old lady! Seriously I would talk to your doctors about how to deal with all this. Yes some of it is normal but to be dealing with all that at once would make anyone depressed. Go before it gets worse. Don't give up on the Tamoxofin yet. Give it some time. I've been told sometimes the SE aren't as bad overtime. I will be doing Arimadex once chemo is over. I too am concerned about the SE but I'm more scared of cancer so I'm going to try my hardest to get through the 5 years.
Carolyn sorry to see you up so late. I couldn't sleep either.
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Morning ladies... looks like we had a few night owls last night. I have no real sleep issues as I pretty much crash as soon as I put my head down on the pillow.
Valgal, KansasKay and cdbernal...welcome, welcome, welcome. We are great supportive and fun group. Stick with us. Carlyn... what an inspiration you are when your treatments were so successful. Thanks for sharing your message.
KansasKay... I am out in the far northwest Chicago burbs and probably only a couple hours from you. I had my surgery at Northwestern last April and will never regret that decision. I'll be there next week for another follow-up. I chose to use a more local ONC and RadOnc and I am very happy with them also. I grew up in South Dakota and we go back there often to visit family and friends. I often thank God that I was not living there when I got the big BC diagnosis. It is rural medicine for sure. Let me know if I can be of any help to you. If you decide to make the trip to Chicago, we are empty nesters and have plenty of space for a sleepover.
Eyebrows.... I think I ordered those things from Headcovers.com but never used them. Will see if I can dig them up if anyone wants them. Mine thinned out some, but never were completely gone. For a couple weeks, I remember just using my mascara brush to darken up the ones I had and it looked fine to ME.
My ONC visit yesterday went well. My CBC report was great and I should get the rest of the blood report back later today or Monday. I am having tumor marker tests run. The last marker test was really really good and hope that all stays the same there. I did convince my ONC to order a PET/CT as I have never had that done. I have always had some back issues and that will forever nag me trying to decide if every little back pain is the usual or something I need to be more concerned about. I am going to try not to get too anxious about having those done!
Well, I am off to the tennis court this morning so have to get this butt moving QUICK! Everyone have a great day. Will check in later.
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"People travel to wonder at the height of the mountains, at the huge waves of the seas, at the long course of the rivers, at the vast compass of the ocean, at the circular motion of the stars, and yet they pass by themselves without wondering."St. Augustine
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Kay, Val and Charlyn --- welcome to our little corner of BC. Org. Wish you didn't have to be here, but it is a wonderful place and we do our best to share thoughts and experiences, ideas, and if nothing else is working well...lots of hugs and hand holding.
Kay, I do think if you can access a teaching hospital you will be able to tap into more of the latest tx methods, and get more care specific to your individual path report/case. I would definitely choose to go where you feel a sense of confidence in those who will be treating you. I did not have a choice as such but am grateful that I ended up with excellent care and am doing fine.
Val, you certainly have a lot on your plate and I can see your in the fight or flight mode. Easy for us to say....but this is a time to take it as it comes --- meaning accept the emotions as they come, horror, disbelief, upset, tears, anger, because it is easier to deal with what you can allow yourself to deeply accept. Not easy by the way, but once you really allow yourself to totally feel ( without any inner struggle and tumoil ) then you can "see" ways to settle into your acceptance of exactly what your life is at that point. From there you can work to change what you can for the better.
Charlyn.....you offer hope and are I think a good example of allowing yourself to feel, whatever you feel, so you can move past the negative events of your life and go on into some sunshine. It is there. I'm glad you all found us.
It is snowing as I write....the really pretty kind. I don't think anything will be slick......just fat flakes setttling in the tree branches and giving everything the picture postcard look. The kind I wish I could taking a walk in or at least spend lots of time out of doors. My walking days just haven't returned as yet......but I think I could really go for a super nice walk on days I'm not doing much else. I spend lots of time inside buildings walking ------ just I think can only do so much before the old feet wish to say -- no more please.
Hi to everyone and if it is snowing where you are I hope it is a nice safe, non-slippery pretty one like we are having here. I also hope today ( you can tell what touches me ) that you don't walk past yourself without seeing the miracle that you really are. I know you each have a really unique purpose.....and if your not sure what it is.....don't worry about that and just know that it is there.
Big hugs, Jackie
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Seeing Charlyn's post was such a ray of Sun for me on this lightly snowy day!! I was feeling so down and scared last night.. I keep feeling a lymph node.. but there is one that pops up every scan.. my Onc thinks it's scar tissue.. but I thought it was larger.. but.. my DH couldn't find it at all.. so maybe in my head.. scanxiety... I am crossing my fingers to be telling you guys in 5 years I'm in her shoes as well!!
Welcome to all the new girls. Definitely the most active and wonderful thread on this board!
Marina
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Hi,
Briefly---- after a week of increasing vertigo--- I had to go for a brain MRI this am.
Scared to death. Hoping my onc can get the results today-- rough on a Friday. Not doing well.
-julie b
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Welcome to the new girls.
Julie - I'm sorry you are dealing with this. Everything's crossed for you. Hugs!
mak - The fear stinks! Hang in there. And...I'm so happy you have a ride to and from the hospital. That's great!
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Julie, I am not sure what to write. I am with you in spirit. You are on my mind. Julie, there are so many bugs going around and some really weird symptoms. I wonder if you have a weird bug or flu? I just pray you do not have to wait until Monday to find out that all is clear.
THIS IS WHAT REALLY SUCKS ABOUT CANCER.....all the damn worry and what-ifs. This is how the beast terrorizes us.
Welcome to the new people! I lived in Elmhurst and loved the town! I brought two babies into the world when we lived in Elmhurst and now they are wonderful women. Kansas, I went to Evanston Hospital and my onc and surgeon are there as well as Highland Park. I love my doctors.
Valgal, you have gone through so much. I think coming here is a positive step. Like I think Lago mentioned, I think you should bring your issues to the doctor if you continue to feel so blue. You should feel sad as you have experienced such sadness. Perhaps the doctor could suggest some thing or some way to help you through this sad time. I think most all of us realize the stress and strain that sickness and death causes and we all would admit that exercise alone does not lift sadness! Well, maybe someone would say that, but most would not.
Marina, I just love how you express yourself.
I hate cancer every day, but I really hate it today.
Susan
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Julie - Well, damn. Just what you need, another scare so soon after the last one. Here's to similar GOOD results. Keep in touch.
Carolyn - It's so good to see you posting regularly. I hope you're able to find a neurologist that you like. It's tough enough to go through these things, having a doc you aren't happy with just makes it more unpleasant.
Adey - Congrats on finishing chemo! Such a great sigh of relief to get that hurdle behind you. Onward and upward now.
Nails, Bones, Hair, etc....
Lago - The nail pain stuff sounds just awful. I never did taxotere, so other than some "grooving" that I think came about after chemo on a few nails, they were relatively unscathed. Glad you're getting some relief.
Wendy - I spend a few months of every year in gel nails. I tend to get them on for vacations and the holidays, then keep them up for a few months - until I get too lazy to go in for a fill and end up biting/ripping them all off. I know.. gross. I do have them on now because my favorite nail tech just opened her own brand new salon and it's near where I work in Arl. Hts. We'll see how long this lasts - I do love having nice looking nails and I can't do them on my own.
I've always worn my hair with at least some bangs, so losing the eyebrows, which was sketchy anyway, was never a huge issue. A few light swipes with my eyeliner was enough to fill in what could be seen between the bangs. As others have said, my eyelashes, which were my bigger worry, came and went in several waves - starting about 2 weeks after I finished chemo. I had false lashes on hand, but I never used them. Eyeliner was sufficient to make me feel "okay" about how I looked when they were at their sparsest stages. I used to have very long eyelashes and very full hair - I don't think either ever came back to that same level, but putting it in perspective now, I'm just happy that they DID come back.
Joan - I can't believe how straight your hair came in! I guess it really is different for everyone. I've always had bone straight hair, but mine came in curly and was totally salt&pepper (emphasis on the salt!). However, as soon as it did get some moderate length to it - 2 or 3 inches - it fell straight again. The color has been.. ahem... adjusted on a regular basis every since.
I would love to never color my hair again, and if I could look as elegant and natural as Susan does with her lovely color, I would do it in a heartbeat. I looked awful with the salt and pepper though. Maybe when it goes totally salt, I'll give it a try.
I'm actually really glad I did get the one Zometa infusion in when I did. I did see a significant drop in my previously normal numbers after being on meds. I'm not totally in the -porosis range, but I was extremely near the border. I didn't want to drop into that territory if I could possibly stop it, and as of my last dexa (post-zometa), my numbers have held steady. I'm sure there's more than one factor involved in these things, and I'm sure that what works for one person isn't necessarily what works for another. I'm very comfortable with doing it once a year, at least until I finish the Femara.
I looked it up because I actually can't remember whats and whens of my medications! I was on Tamoxifen from 8/05, until I had my hysterectomy/oopherectomy in 1/07. Aromasin from 2/07 until 12/07 - the joint pains became intolerable, my hands were pure agony... After a week of a Medrol pack (steroids = Joint HEAVEN!), I started up on the Femara instead and will continue that until 1/12.
I do still have joint pains and stiffness on the Femara, but nothing even close to the ballpark of what the Aromasin did to me. Also, I do still get the occasional hotflash days and my hair thinning is a concern. I do have an ongoing "frozen shoulder" issue, but that's likely related to my job combined with the joint issues. But... I can still function and live my life on the Femara. Most of the time I am just fine and I'm glad I have an AI that I'm able to take. My onc did mention that a big study has recently completed on the benefits/risks of taking AI's beyond 5 years, but the results could take a few years to be published. Hopefully, by the time I'm ready to finish, we'll at least have some preliminary information to consider.
Welcome to the new members of our group. KansasKay - I've done all my surgeries/treatments out here in the suburbs, but with docs who I'm very confident in and familiar with. Lago has given you a great list of the top hospitals in Chicago and it certainly seems worth your time for you to at least get a second opinion of your treatment from one of them if you feel like you need reassurance of what you are being told. Besides, it's a great reason to spend a week in Chicago!
Valgal - My condolences for the loss of your brother. I'm sure you've shared the family history of early heart problems with your doctors so they can be sure to monitor you closely. You're right, it is normal to have some depression after all you've gone through, especially with the ongoing cancer worries. Don't let the depression rule your life though. If it feels like it's becoming so, then I do hope you talk to someone.
Charlyn - Thanks for sharing your hopeful story. Do you go to Cedars-Sinai for regular check-ups too?
Okay, I need to be productive today. All these Christmas decorations aren't going to take themselves down. Grrr..
Oh! A movie recommendation - If you get the chance, go see "The King's Speech." Truly a wonderful film - amazing performances, witty and touching script, and perfectly executed production.
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Hi all
I have a wonderful onc-- he had results to me in 3 hours-- not the 3 days the tech mentioned.
Ok-it's not brain mets. There's a "venous angioma" that he wants to talk with me about and/or have me meet with a neurologist about, but doesn't think it's behind the vertigo. Picking up a prescription for antivert that he thinks will help a lot.
I have really never felt anything like this bizarre dizziness- and it was really hard to get through the week with this. I'm feeling better though knowing what it's not and can begin tackling it...
thanks SO much for all the kind notes and wishes---I'm very lucky to have you all
-julie
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Thank God! Julie, I am breathing normally again! Have a greatweekend on those drugs!
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Julie, so glad it's not brain mets. Wow so nice to have results in 3 hours. my BL is a physician at Rush and I can't even get through to him in 3 hours. (Yes I do ask him to look up my results when it's the scary kind).
OK snowball fight!
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............................................ KEEP IT GOING .................................................0 -
Good news Julie! I have had vertigo several times in the past, and it comes and goes without explanation.... well last time I gave up Nexxium which I was taking for GERD, and it disappeared. I hate to think how I'm going to react emotionally the next time I inevitably get it.
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