Illinois ladies facing bc
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Decisions become easier when your will to please God outweighs your will to please the world. ~Anso Coetzer
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IllinoisLady: I had a PET after I completed chemo. However, I had chemo first because I had IBC and they wanted to reduce affected area prior to surgery. The PET helped to see how I had responded to chemo before scheduling my bi-lateral mx.
I also had 33 rad trt after my mastectomy (about 6 weeks after). I'm currently taking Femara and have reached the two year mark from dx w/o a recurrence!!
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Carolyn,
I can add a little to Wendy's great post, as I've kind of been through both scenarios. I'm also triple neg. I had a lumpectomy and radiation 9 years ago. My tumor was isolated, accessible. At the time, it was the right decision. The surgery was minor, the radiation- for me- was not difficult. When I had kids two years later, one size grew, the radiated did not and I developed some big symmetry issues, but nothing i couldn't easily disguise with a simple insert. In 09, I developed a new primary in the same breast. Not a reoccurence-- a new cancer. Very rare. So much so that no one, not even my surgeon, reacted with any kind of "told you so"-- rather, all my caregivers reacted with great surprise. Smaller and caught earlier than the first, but I did not want to risk more radiation, so chose to have the mx with immediate reconstruction. I was as frightened as your are and asked the very same questions. One year out I can say--- it wasn't nearly as terrible as I expected. It's taken me a while to get to the point where I can say that. The plastic surgery options also changed greatly in the 9 years btw diagnoses. I benefited from a new procedure (immediate implant, nipple sparing) where I woke up with a new breast of sorts. For me-- and everyone is so different on this account-- that helped me a lot. Everyone who has responded is right-- there are options and there is time to sort through them- and different surgeons. You'll find wonderful support here whatever direction you ultimately choose
And hello to all of you. Crazy busy these days. Crazy mom. Silly, funny, endearing, maddening, frustrating children. (Example: Christmas gift of razor scooter has been banned to garage until spring as I caught my son attempting to ride it down the basement steps. And similar stories) But I read when I can, try to keep up on all of you and hope to make a dinner or two this year.
-julie b
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JulieChicago........so glad to see a post from you! I keep up with you by reading your children's accounts on Facebook. They are so cute and funny and I enjoy your stories immensely!
Congrats cagney on the 2 year milestone! YEA! YEA! YEA! Now move right on to year #3!
Rita
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Hi ALL...
Want to quickly update as i am getting alot of answers since seeing my new DR who is into Intgergrative Medicine!Finally am getting somewhere!!!HAVE no issues with my estrogen ,progrestorone or DHEA levels AT ALL. My hot flashes, sleep difficulties are coming from a very compomised endcocirine system. My dopamine, serotonin and neuro transmitters are all needing immediate balance also. I have a very weakened pituartary gland (sp) and have so much in a weakened state based on the tests done they are not sure how i have been functioning. TRULY i am acting as if and have been for at least 7 mos!!!ALL is being tested further.. started me on some natural and homeopathic supplementation and already am feeling some relief. The hard part is this detox system i have to follow to get all the crap out of me and get my system activated and flowing again.
ALL of this was coming to a diagnosis before my BC dx and there is no question that this has all worked much stress on my body and now i feel i am finally goin to get treated and get the real answers my body needs!!!ALL i have been given from my other DR was either a sleeping pill or an antidepressant!!!SO this is it for now!!Tests are next week for my fibromayagia and a weakened ureter or urine area???
Now Carolyn...being triple negative.. i was diagnosed Nov 21, 2008 and had my surgery Jan 20,2009. IT is a process and the education is so impt to know exactly what is goin to be done. If i can help in any way just email me or leave me a private message. This is the most important time for you and cannot rush thru this or you may have regrets.This is a JOURNEY AND NOT A DESTINATION!!
Will be back as i can. Just wanted to give a quick update and that i am finally getting the RIGHT answers.
Donna
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Hi Everyone.....I'm considering a 2nd opinion. Possibly at Northwestern. In the meantime I have a previously scheduled appointment with my primary care doc on Tuesday. So maybe that'll be of some help to me too!
Thanks for everything! Have a wonderful weekend!
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Cagney....sounds like things are going pretty good for you. I take it you are doing good with the Femara and able to tolerate it w/o much for se's. I am using Arimidex. I am two years and 3 months since my tx started. Time flies when your having fun.
Carolyn -- glad you are 'thinking' maybe second opinion. Good to see PCP and get some imput there as well. Could turn out to be a lot of help to you.
Donna....it is so good to hear the sound of hope as you write and the positive steps you are taking to get your health back. Most of us ( at least it sounded that way to me ) have had a much easier time getting back and a whole lot less in most ways to overcome. You do have spunk and spirit because you haven't and didn't give up -- just looked for another way to get home to yourself. You are remarkable and hope you can feel the great big hug I'm sending your way.
I'm off to my recliner. This ( what seems to have been an awfully long week -- too much sadness ) has taken a bit of the starch from my sails, but a couple of good nights of sleep and I'll be right back. A little sun outside would be the crowning touch but doubt it will come. Sigh !! At least if our temps stay up as they have been. See you all tomorrow.
Hugs and hugs, Jackie
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a little something for you Donna:
Hugging has no unpleasant side effects and is all natural. There are no batteries to replace, it's inflation-proof and non-fattening with no monthly payments. It's non-taxable, non-polluting, and is, of course, fully refundable. ~Author Unknown
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Hi all,
It seems like ages since I have posted, even though to do read every few days.
Nothing is really new. Last week was two years ago that I got "the call". I cannot believe everything that I have been through and how fast the time has gone. One "positive" out of the situation is that I have a great new hairstyle. I always had long and very straight hair, and now I have short hair with lots of body.
The holidays were crazed and I really enjoyed my week off.
Hi Carolyn, I have been following your posts. I am also triple-negative. Consdering it is supposed to be "rare" we certainly have quite a few ladies on this thread who are triple-negative. I go to Northwestern and would highly recommend it. I do work downtown, so it is super-convenient for me. When I have an appoinment I am usually in the office by 9:30. Funny, someone at work asked me today for my team of drs. names for a recommendation for a client's wife who lives out your way - but I did read your posts and you state that you are single. I thought maybe it was for you.
I had a bi-lateral mastectomy, chemo and radiation. I have also done reconstruction, which because of doing radiation has been a long process, and i just finished a couple weeks ago. I have a follow-up with the plastic surgeon in February, and I think I am done.
I am one of those people who did not miss any work for chemo or radiation, except for the infusion day. Actually, the hard part for me with radiation, was not being able to take a day off of work for seven weeks - I certainly was not going to use a vacation day to come downtown for radiation, and then not go to work. I did rads in late August and September and I loved my walk down Michigan Avenue to and from the hospital from work. I usually do not get in that direction. If you have any questions, please feel from to contact me. Do you work in the burbs?
Take care everyone and wish for an early spring.
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Morning all....33.5 on the deck but cloudy and gray and I hear we will be getting lots of rain. Oh well...could be snow!
Carolyn....my 2nd opinion was at Northwestern...Dr Kaklamani...she is an onc of course, but specializes in bc. She was very nice but the whole day was sooooo long! Lots of waiting and it turned out my appt was on a Friday at 1pm and it was raining...took us almost 3 hours to get home. Yuck. But she was great. Just a thought for you. And yes, your primary doc will become a valuable member of the team! Don't forget...if you think you might need something for sleep/anxiety/depression - ask for it! You might never need to take it but if you are roaming around your house at 2am with your mind whirling, sure is nice to have something sitting in the medicine cabinet. But once again...just a thought for you! If we can help with anything else...please let us know. Or PM one of us. I'm not too far from you and I am a lazy-butt housewife.
Lisa...so nice to see a post from you! And again, happy #2! It did go fast, didn't it! Of course, that also means we are 2 years older. Not nice. I do not like getting older.
JulieChicago...also nice to see you posting here, altho like a lot of the girls I read your postings on facebook. So funny! Your kids are a hoot! You gave good advice to Carolyn, as did Lisa.
I am sitting in the family room, looking out at patches of grass peeking thru the snow. And dreaming of spring. Soon, but not soon enough! It seems like there was no summer and then it got really cold and here we sit. Can't really remember sitting out on the deck in the evening except for a few times as it just got too chilly and our deck faces NE so no sun at that time. Sure wish I could sit out there today. Oh well.....
And...guess what? I started seeing flashes in my other eye on Wednesday and finally called the eye doc and went to see him yesterday. Yep. Another vitreous detachment. Great. This time tho he said just to spend a relatively quiet week (ie: no heavy workouts, running etc - who, me?) with no heavy reading until I see him next Friday. He still says that altho this is caused by the aging process everything I have read points to decreased estrogen levels causing this as well as aging so I am sorry. I think the arimidex helped this along, as well as my cataracts which I did NOT have prior to chemo/arimidex. So...at this point I will stay on the drug. Px on Monday with labs so we will see where my chol. and my liver function are at.(OK English teachers...that can't be correct!) They had both started creeping up, which of course....can be due to the arimidex. If they are both way up...I am going to think about this. I have gotten quite a few problems since starting this drug and it may be time to weigh things. What do you guys think? I was 90%E+ and 70% P+ but then being Her2+ I think the most important part of my tx was the Herceptin anyway. I guess I will just wait and see. But these continuing eye problems now have me concerned altho the retina specialist isn't really concerned at all. Says he sees this all the time and only in about 10-15% of the cases of vitreous detachment does this cause a retinal tear/detachment - which if caught early can easily be fixed. But still.....hmmmmm. Ya know...they handed me this rx and said take it, and I did. But now, here I sit with all these side effects and I have 2.5 years to go and I hear that the powers that be are now thinking that add'l years on these drugs might be good. Boy...I just don't know anymore. I know cancer is not curable but....but....but....
So....I know BJ and Laura have strong opinions on these drugs...how about the rest of you? I have NO intention of stopping this drug but I have started thinking.
OK...need to have more coffee and then psych myself up for my babysitting job later. Anyone have any little pink pills for me??? LOL!!!! Have a wonderful Saturday everyone!
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Lisamed. I didnt realize you were so close to me. I use to live in Homerglen. I am near Orland park. I also had grade 3 my tumor was 2.2 cm. Did they radiate your entire chest quarter. How long before they were able to do reconst. On my radiated side it is very hard and tight. Its only been 3 months since my last rad. PS said he might not be able to fix it. I may have to go to Northwestern for a skin flap off the back. It sounds like you really did great.
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Normal day, let me be aware of the treasure you are. Let me learn from you, love you, bless you before you depart. Let me not pass you by in quest of some rare and perfect tomorrow. Let me hold you while I may, for it may not always be so. One day I shall dig my nails into the earth, or bury my face in the pillow, or stretch myself taut, or raise my hands to the sky and want, more than all the world, your return. ~Mary Jean Iron
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Morning everyone. It's a bit gloomy here as it has been now for several days. Of course, long enough for me to get that bout' time to hang myself feeling -- but of course, I never do because I do know eventually the sun will come out and I intend to soak up plenty of it. Just makes me feel/sense weary when I am not truly that way.
You are full of thoughts and questions today Wendy and I don't blame you. I have always had lots of ambivalence where drugs are concerned -- started with my Medical Corpsman training in the Army. I also think about needing to take Arimidex/something else, longer. Same old thing comes up -- no one has actually figured out the answer for who benefits the most as opposed to who may need it at all. In looking at your percentages.....they are high, and that would bother me somewhat. The eye Dr. says " this is caused by the aging process " which might be true, but I have not 'heard' much of this problem and I know a lot of aging people now -- including ahem' myself. Of course --- I'm not a Dr. and lots of people don't go around saying -- guess what - my vitreous is acting up but the fact is....you do try to do all the "positive" things and pretty much consistently so --- so it would seem that going back to when you were doing good -- would be basically before you starting using this drug.
Couple of thoughts --- high hormonal percentages would instill in me some reluctance to drop the drug --- but having to take it longer than 5 years is a negative and so I think I would try to get through the five years......and then hope like the dickens that they have figured enough out by then to be able to stop with some confidence in the outcome afterward.
I have lots of opinions about drugs, but lots of VERY strong opinions about how many of them got here --- and it boils down simply to my spiritual belief that the good Lord gave us a variety of tools ( drugs being one of them ) to get along in this world. If I truly believed we were meant not to use them I'd have never poisoned myself willingly -- almost eagerly with chemo. Though I have had some Arimidex problems....I pretty much have handled those, but I do think....one of the good factors for me was that I finished my rads in third week of July....and Arimidex did not start till November. Saying mainly...that my body had some time to heal a bit from chemo and rads before i started the insult of Arimidex.
I know you are not going to just D/C Arimidex --- but hopefully out there somewhere is information that will give you the "deciding" factor.
Lisa -- hi to you. You don't post often and I really enjoy reading yours.
Ok -- big blabber mouth is going to shut up now. I'll be checking back later.
Hugs, Jackie.
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Wendy, Wendy, Wendy...your post is so timely for me. Remember, I had the retina scare too! The problems I am facing now is that I just cannot see anything close unless I wear very strong glasses. For example, I cannot read the screen at all without strong glasses and the words appear as blurry black lines. . The scare is that it is so much worse than it was even a year ago. I never blamed arimidex (I blame everything else on it) and now I am wondering. Maybe I have cataracts too. Like you, I read so much.I would hate to lose any more sight. My mom had macular degeneration, so I need to worry about my eyes. If this is due to the aging process, then at the rate I am going, I will have pathetic vision in five years.
Now about the arimidex. It may be idiotic but I will take that pill no matter. If I skip even one day, I get stressed. It could be like a naive belief on my part that this is the magic pill to keep cancer away. After five years, I will probably not be relieved it is over for me. So yes, I would probably compromise on the quality of my sight to have some reassurance the cancer stays at bay. Yet, I am not sure how intelligent that is to think that way if I lose my sight!
It is good to be skeptical about pills. I blame my hormone replacement (prempro) for the cancer in the first place. I was on it for a very long time as I had an early menopause and the doctor worried about my bones! I cannot prove a thing, but I wish I had stopped those before they even began to enter my body!
Good to hear from Lisa and JulieChicago and Cagney. Donna, you do sound very optimistic.
I am taking on a long term sub job (just two weeks) and it falls during the lunch so I will not be able to come. I would love to see you. I am not sure how two weeks of teaching will set with me. I feel ambivalent about it. I like the extra money, but I also like my freedom. We'll see. My school is fantastic and I face very few behavior issues, so I do enjoy the kids. They are 8th grade and I love that age.
Have a good weekend. WE are going to see "It's Complicated" with some friends tonight. I heard from many of you it is good! I need FUNNY now.
Susan
Edited to add....Wendy you have prompted me to see the eye doctor. I am overdue!
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I knew I could count on you guys! Thanks Jackie and Susan! No...I am not going to stop the arimidex. Too afraid of dc'ing it and then what happens when the estrogen comes flooding back? Just very disheartened but there are far worse things than little flashes of light in both eyes. And Susan you know you need to make an appt with the opthal. asap, don't you? And Jackie...yeah...if indeed it's a part of aging why among all my friends who are the same age and older am I the only one with this "little" aging problem????
Hmmmmm........well, I took my little white pill this am and I will take my little white pill tomorrow and I will call Walgreens for the refill but I'm not happy about it.
Thanks Kater for the info...let me know how you like the endo...if my thyroid is still out of whack I may have to seen one, too and neither my PCP or Dr Bayer like the ones at Delnor - wonder why that is! And as far as Suzanne Somers...well....I did read one of her early books (got it from the library) and I have to say....I don't agree with much that she said, except for some of her dietary/nutrition stuff. But they are good reads and really does get you thinking about what we put in our bodies, esp drugs, simply because someone with MD after their name told us we should.
Off to call Walgreens and order up my arimidex....one more time! And you guys who are taking AI's don't listen to me about stopping....I'm not stopping....just beginning to look at all the se's that are starting to pop up now and I'm not too thrilled.
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I am on Arimidex too. I have lots of joint pain and my vision is terrible. I didnt realize it could be related. Do you think it will come back when we stop taking the drugs.
I would not consider stopping the med. I feel I am doing everything I can do , to ward off cancer from coming back again.
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Hi:
Kinda never left the computer! Yes, I need to see that ophthalmologist ASAP and will do that. I received a notice that I was due and I just put it off. The retina thing scared me something fierce as I thought I was having a stroke and ended up in the emergency room.
My ophthalmologist also was unconcerned with what was really wrong which would be what you had, Wendy (vitreous, whatever) and said I could expect it in the other eye (never happened). The real worry is actually a retina detachment. The floaters are not pleasant. I was the one with "black animals" running across the floor. I actually turned my head to follow these floaters they were so real-looking. That is enough to make anyone a bit batty. I just remembered a funny thing that happened about this. I was so afraid by the time I got to see the ophthalmologist, (although I was reassured at the er had not had a stroke) that I showed up pretty much a mess. In the chair I said, "There it goes again." I just had had a huge black blob cross my field of vision. The doctor said, "You know, don't you, that only you see it. I cannot see it." I did laugh when this very young thing of a doctor said that! This thing we call the "aging process" is rather traumatic!
Go get your arimidex at the Walgreens!
Susan
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Yay...the snow is melting! And thank goodness for that! Our driveway was an ice skating rink last week. Too bad I don't own a pair of skates! lol
Wendy - Hopefully your eye probs will clear up soon. How frustrating it must be.
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Hope you're all having a good weekend. I can't help but wonder more and more about the connection of the eyes, Thryroid and bc...and how they're all linked. I've read some books about it to help me understand it all and to help me figure out what's the best solution. Endocrinology is so complex! Geesh...that's probably why there's so few who choose that specialty. By taking one supplement, I have been able to toss out my bottle of Synthroid. As for Tamoxifen/AI's...another confusing and controversial issue. I wish we had more black and white answers about it. I have a hard time trusting the pharms - because of the lack of ethics these days - not only within the pharms, but lots of other industries. What works for me is to avoid medication whenever possible. Of course that can't always be done, but I think long and hard before I put any pill in my mouth. There was a recent report that said long term Tamoxifen use can cause a more agressive form of bc. That scared the crapola out of me. Just when you think you can trust something! lol We need a cure so we're not in a position to have to even think about all this. Oh well... if life was fair, birds wouldn't eat worms! lol
Have a nice weekend!
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Oh My....no I would not think of doing w/o the Arimidex and think many ( no way to know who for sure ) are so very fortunate to have the **help** it provides. Everything and I do mean everything has a se to it --- so I try to weigh the need before it is ever prescribed. Some things -- thyroid, BP etc. I have very few issues on -- the need far outweighs the possible se -- but I am still not happy to take some of it...hope sooner or later to get off more meds. I have side-stepped the statin for my cholesterol and lost and kept off 9 pounds so far....if I'd get a little less lazy and a little more motivated I'm sure I'd do much better....times coming.
Susan....glad you will go see your Ophthalmologist. I only see out of one eye for the most part so I really have to watch out big time. Due for an eye exam but hard lately to find much time for anything. It is in fact, time to go feed feral cats again. Then Teeny has a after spaying check-up. See you all later.
Hugs, Jackie
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Buddy...I have pretty much done it all--surgery, chemo, radiation, reconstruction--and I have pretty much come thru with flying colors and no complications (knock on wood!!). It has been a long process, I just had my tatooing done about two weeks ago, so it has been about two years from start to finish. I have not done any hormone therapy or herceptin.
I finished radiation October 2, 2008, and had my implants put in on the memorial day weekend after that. They starting filling my expanders again about 3 months after radiation ended. I believe they did radiate the entire chest quarter. There were three areas and then the final 5 super concentrated on the scar tissue. That side is still tight and numb/weird.
I used to be a DD before cancer and am now a B. I would have liked to have gone a little larger, but the skin was so tight, I figured this was good enough. Padded bras are my new best friend. With clothes on, or even just my bra I think it looks great. Naked is another story, but I can live with it. I like to think I lived the first half of my life as a large-breasted woman and the second half as a small-breasted woman. I am enjoying wearing cute things I would have been way to self-conscious about to wear before (tank tops,strappy sun dresses, etc.).
If you have any questions Buddy, feel free to ask.
Unfortunately, I have consistently put weight on since the summer and am back at weight watchers. It is only 10 lbs (I lost 40 pounds 5 years ago), but it has got to stop.
Have a good weekend everyone.
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Hello to you all. I'm another newcomer, struck by the similarity with Carolyn's situation and impressed with all your thoughtful replies. So far I've been told that I'll start with chemo and move on to a mastectomy. Although I understand the rational of this, I'm concerned about leaving an aggressive tumor in place for 2-3 more months. Seems risky to me. I'm also wondering if anyone has experience with either U. Chicago or Northwestern Memorial as I'm trying to determine where to go. I started at Chicago due to a referral and it has the reputation, but it's pretty darn depressing. I'm a "second timer" and was at Northwestern for my first bout with the beast. However, that was 25 years ago. Anyone out there have any info?
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Hello to you all. I'm another newcomer, struck by the similarity with Carolyn's situation and impressed with all your thoughtful replies. So far I've been told that I'll start with chemo and move on to a mastectomy. Although I understand the rational of this, I'm concerned about leaving an aggressive tumor in place for 2-3 more months. Seems risky to me. I'm also wondering if anyone has experience with either U. Chicago or Northwestern Memorial as I'm trying to determine where to go. I started at Chicago due to a referral and it has the reputation, but it's pretty darn depressing. I'm a "second timer" and was at Northwestern for my first bout with the beast. However, that was 25 years ago. Anyone out there have any info?
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Rababar: I, too, had chemo first and then a bi-lateral mx. I had IBC and there's no way surgery can remove all of the little tendrils and "nets" of it without reducing the size first with chemo. The encouraging thing for me was I could see chemo working as all of my IBC symptoms starting going away until my my involved breast looked "normal" again. I had TCH for six months and then Herceptin only for another six months. I had the surgery and then followed that up with high dose rads since IBC is aggressive and the survival rates are pretty dismal. I am not a candidate for recon due to the type of cancer and then the condition of my skin after rads. I had PT for several weeks to loosen up my chest muscles and help with range of motion. Those of you who still have very tight skin might want to consider that. LauraGTO: what supplement are you taking that has allowed you to get off Synthroid? My thyroied shot craps back in the mid 90's and I've been on Synthroid ever since. Chemo really made my TSH counts rock n roll for a while but I'm finally stable again (or at least my TSH counts are!)
I am taking Femara rather than Arimidex so I can't address se of the latter. I can tell you though that I was just diagnosed a couple of months ago with a cataract in my right eye. I had noticed a very rapid change in my vision so had it checked. I'd gotten new lenses 1/09 and my right eye had changed three steps on distance and one on close up. My optha said it could be hereditary as my dad had had cataracts but he really thought it was a se of the Herceptin. I had se while taking it with my eyes burning horribly and not being able to look at any type of screen or read for a couple of days after chemo. I tried putting my allergy eye drops in before they started my infusions and that did the trick - very little burning. Due to the burning, I tend to agree with my optha that is was the Herceptin.
I have more questions for you but will send another post...this one is turning into a novel or at least a short story!
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Zap: It was interesting to read that you feel HRT caused your bc. I have come to the exact same conclusion with mine. I was on Premarin for something like fifteen years after having a total hysterectomy at age 37. My gyn kept insisting it was safe in spite of my concerns about bc. I finally took myself off of it and haven't been back to the guy again. I swear there have been days since I've been on this bc journey that if I ran into him on the street I'd probably have ended up in jail for assault.
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Hi Cagney-- Thanks for the response. The doctors are not totally convinced that these tumors started as breast cancer (even tho the tumor's in my breast), so the idea was to try a variety of treatments to see how the tumor responds. I'm so glad to hear this path worked for you. Do you think the cataract resulted from chemo or are you --forgive me-- of the age when cataracts are part of the drill? I already have trouble with my eyes, so that would be quite discouraging.
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I don't know where to begin! lol My chemo brain is on over load!
Sorry this is so long...but there's quite a bit of activity here lately.
I'll start with:
WTY - Good Luck on Monday...first day back into the "real world". Best wishes to you...I'm sure by the end of the day, you'll feel as though you never left.
Carolyn - Good luck with your appt on Tuesday. Best wishes to you. Keep us posted.
rababar - I'm sorry about the recurrence. The girls here will help you through it all. LittleC who pops in every now and then went to UOC...if I remember correctly...and I think I remember her saying it was a great experience. But wherever you choose to go, I'm sure you'll get good treatment. That's one of the advantages of having big city hospitals nearby. Try not to worry about the tumor while going through Adjuvent chemo. ILC tends to be slow growing. Your Dr's would not suggest this if they thought it would jeopardize your health. I too had ILC, so I do know about it. Although... I am curious as to why they want to do Adjuvent. My largest tumor was 3.9cm and they didn't suggest that for me. What is your ER status? The PR status is less significant than the ER status. It's unusual for ILC to be her2 negative. You might want to consider having the pathology done at another lab - kind of like a "second opinion pathology". Talk about depressing hospital situations...I originally went to a teaching hospital in Chicago...OMG...I cried every time I left there. I can totally relate to this. The advantage of Adjuvent chemo is that you will know if it works, which is what Cagney also posted. And more often than not...it does work! JanC here in our group, has a similar situation as to not being sure if her bc is actually bc...I hope she chimes in.
cagney - Welcome to you too. Sorry about your diagnosis but there's lots of support here. I am also in that category of having too tight skin for recon. And I too went through major PT for the tightness and for cording down my left arm...thanks to the node dissection. I pm'd you about the supplement. IBC is a tough one...hang in there, it sounds as though things are good.
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The dinner bell just rang! dh made a roast, smashed potatoes and asparagus for dinner.
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Hi rababar,
I am at Northwestern. It has been a very positive experience for me, and as I stated earlier, I work downtown and it is very convenient for me.
Feel free to ask me any questions.
Lisa
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Morning....rain, rain....YaY!!!!! It could be snow...which is disappearing rapidly. But I hear temps will drop and we will get more. Sigh......
Laura....you are so lucky! A husband who not only knows how, but loves to cook! Maybe a new career????? I know that there ...so far...is no definite link between hypthyroidism and bc but my doctors say there is, from what I've read I think there is...they just haven't found it yet. I've only been on synthroid for 3 years and I am hoping that this last adjustment has held. I did read some of your suggested links and altho they cound very interesting and promising I am too much of a chicken to get off the synthroid. Keep us informed as to how your levels go, okay?
Cagney...you sound like you are doing so well! Congrats! Yeah...that darn HRT! I never took that as it always bothered me but what I did do for the hot flashes was take Estroven...the phytoestrogen OTC stuff. I would take it for 6 months and then stop it to see how the flashes were as it worked pretty well for me. They would come back and I would start taking it. So back and forth, back and forth for about 3.5 years. And so now, in retrospect....did this start my little cancer cells growing? Who knows! But.....hmmmm....I guess I will never know, as none of us will ever know....yet. I do think that eventually we will figure out this whole cancer thing tho.
Rababar.....welcome to our merry band! Neo-adjuvent chemo is indeed used to see how you respond to tx and to shrink what you have to allow better surgical outcomes. It's done all the time. So try not to worry about that. And yes I know...if it was in me I would go around screaming (in my head) cut it out NOW! Hopefully as Laura said...JanClare will chime in about this. Her story is very interesting. She doesn't post much...I will send her an email so maybe if she has a free moment she can pop in. Keep the faith and keep coming her. I also went to NW, but only for a 2nd opinion as it is nowhere near me. I saw Dr. Kaklamani and I really like her.
Kater...with regard to your email about blaming all troubles on arimidex...I really don't but I see what you mean. Some stuff is just stuff and I am no spring chicken! But I did not have cataracts before starting arimidex altho chemo sometmes does this (rarely). Now both my parents had them, but in their late 70's. My eye doc said just at my last exam last spring that he was really surprised how fast mine were growing in just one year that he felt it was indeed from the arimidex. But we both agreed at that time that it was much more important to stay on the drug. Now with the vitreous detachments...everything I have read says that it happens much more often in post-menopausal women which they blame on estrogen depletion which liquifies the vitreous which causes the eyeball to collapse a bit, pulling it away from the retina. SO.....if I take a drug which causes severe and most probably total estrogen depletion I figure...duh. This drug didn't help any! And my chol. is going up since being on the drug and my diet is much better now. My liver enzymes are up a bit and I am anxious to see where they are now, a year later. I have all the joint/muscle pains but mag. every day really does help that. I have horrible night sweats, every night, soaking into my jammies and thru to the mattress pad. And my bones were fine, and now of course I am osteopenic, probably heading straight for osteoporosis no matter how much Ca, Vit D3 and weight-bearing exercise I do. So...that is why I wondered what you all thought about this drug. I got my refill yesterday so I would not stop it anyway...now. And even if I did make the decision that the se's were no longer worth it...I really do think I would start taking the drug every other day for a few months and have labs done and see where I am at. Wow...that was a long post!
As for Herceptin, that did cause some blurriness for me but it went away fairly quickly after I was done. AND....off topic a bit...my fingernails have finally started growing again and I have been off the H for 2 years!!! Yay!!! Fingernails!!!
BJ....good to talk to you yesterday! Altho I do not need your pill hammer, keep it available OK??? LOL!!!!
Smerf....where you at girl? Hope you are OK...
Jackie....I too am sad for you...losing friends is never easy. Altho my friends are all pretty much in place I do know that we are all aging and coming down with various ailments (altho I am the only special girl...the cancer girl!) so I appreciate them all the more these days. But I will say that over half of them are hypothyroid!
Much too long a post and probably boring about the arimidex so I promise I am done with that. WendyTY....good luck tomorrow! Rita...have a fab trip! Off to shower and then do something with DH this morning....this afternoon I understand there is something very important on TV that hejust can't miss as it is life-changing (read: football playoffs)
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Good morning Ladies. It is a rainy, windy day thats jfor sure. But i'll take it over snow anyday.
WENDY I think I forgot to tell you how much I appreciated the Hanger idea. What a genius. I use all the big thick chunky plastic type. I plan on switching over to save some space. My closet is packed its so hard to get things in and out of. That is my goal this week....Thanks again for the pointer.
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