Illinois ladies facing bc
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Good morning friends. Sun wants to come out this a.m. but it won't really make it. I can see some dark clouds in the sky -- we could even get more rain ( some is near to St. Louis as I speak ) and we are only a bit over an hour almost directly east of St. Louis. Dh has the day off so some finish up type details around the house here. Who knows what else. He seems to "come up" with things that need doing that really crimp my game plan, but after 35 years I just go with the flow.
Teeny who was spayed a week ago is starting to get a lot more perky. We are glad of that. I think we realized just how hyper she really is so much of the time.
Wendy...you are never boring. However; I do actually think of myself that way. I have always felt great that I had such flexibility, but as I get older I do see that there are some things that I have become almost immovable about, and one big one is medicines. So, I think people tire of my viewpoint. Another big one is spirituality ( not necessarily religion ) and boy I'm sure I can raise lots of eyebrows with that one. Won't bore you all at this point -- just one of the big realities I'm facing about myself.
We all want to feel that we are RIGHT and that is human nature and what you feel is right for you is probably quite right -- but as in every other thing, one size never fits all and I am pretty much a firm believer that when you have several choices the RIGHT one for you will indicate in some way. It has pretty much worked that way for me.....and when I have not heeded my innermost feelings ( thankfully, nothing that has made too great a difference ) the outcome has not been nearly as positive as I hoped.
If I have not said hi to rababar yet, please excuse me. I don't have chemo-brain -- I am just scatter-brained and sometimes filling my days a bit full....and guess I think of doing something and think I have actually done it when I haven't.
Hope you all have a really fantastic Sunday. Here's to sun.
Hugs, Jackie
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I don't usually put in three quotes at once....but these were one right after the other and just too provocative not too....a little funny too:
Man is rated the highest animal, at least among all animals who returned the questionnaire. ~Robert Brault, http://www.robertbrault.com/
Ocean: A body of water occupying two-thirds of a world made for man - who has no gills. ~Ambrose Bierce
Man is harder than iron, stronger than stone and more fragile than a rose. ~Turkish Proverb0 -
I hope the rain continues so all the snow melts! Everything looks so BLAH - this time of the year. Good day to go to the "Y"!
Wendrew - I am having my Thyroid levels checked in Feb. I'll let you know. And...my Vit D levels will be checked next week. I'm really curious about both.
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Wanted to add to the Thyroid/meds debacle...I think this is obvious but...anyone who wants to take supplements or try to eliminate synthetic meds, should work with a licensed doctor or homeopath. So far, it's worked for me, and of course everything doesn't work the same for everyone (echoing Jackie's comment.) I'm a sponge when it comes to learning about choices and reading and hearing about steps others have taken to benefit their health. But I also realize that no matter what choices a person makes, it's best to make an educated decision based on your own personal views in combo with those of a professional.
Off to - 1,2,3,4 - 1,2,3,4 and breathe and stretch and 1,2,3,4 - 1,2,3,4. LOL
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Good Sunday morning to everyone - and hello to the "newbies" as well - I'm really glad you found this group.
Wendy - I had to LOL when I read "cry more = pee less" hahahaha!!!
And Rita - are you going to FL this week ? Have a wonderful trip!!
I'm enjoying some time at home with Buster today - Hubby is out playing with his friends - so Buster & I are doing laundry & all that fun stuff.
Thanks for all of the positive wishes on my path!! It showed some cancer cellsin the skin/nearby surface but he said the margins were clear at the points of concern & I don't need additional surgery at the site. They are confident that ovary removal + rads will take care of this.
Oophorectomy is next Mon - I'm not so worried about the surgery/pain (after that bmx - I think I can handle just about anything!) - I am worried how my body will react to the Insta-Pause, specifically my heart. It is suspected that my irregular heartbeat is tied to my hormones, so I'm hoping & praying that it will not get worse. I'm trying to be optimistic & think "Hey, maybe it will CORRECT my heart problem!" Can't hurt to hope for the best, right ?
They'll be keeping me for at least a 24 hour observation due to my horrific experience with anesthesia last time. (I guess most lap ooph's go home a few hours after surgery.) And that's fine with me.
Sorry to be boring & just blathering on about me - I just thought I'd come fill you guys in on what's up. I hope to get here one more time prior to surgery.
Take care everyone - enjoy what's left of the weekend.... xoxo Juliet
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Go see "It's Complicated" and you will laugh and never skype on the computer again!
We are heading for Glen Ellyn, Ill to look it over. My daughter and her family are considering tt to be their new home if and when they sell their condo in Evanston. I love how close they are to me in Evanston, but I think they are looking for something less urban. Anyone know anything about Glen Ellyn?
Laura, you absolutely picked my palette. My Dh also loves to cook and asked what I wanted for dinner. I said roast beef, smashed potatoes and green beans. He asked me what smashed potatoes were and I told him I didn't know but I wanted them. So he researched on the computer and away we go!
Have a great day!
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Juliet - Good luck next Monday. Great news about the margins. When I had an Oooooooph...I developed a bad case of a huge gas bubble in my shoulder. I KNOW IT SOUNDS WEIRD, but it really happened. They fill you up with gas during the procedure so they can maneuver around. For some reason I retained the gas they injected. I was miserable for several days. (BUT it's not very common, so don't worry about it.) It was the weirdest thing. I eventually googled it and found that walking around the house and drinking warm liquids helped to eventually dissipate it. I wish they would have prepared me for the possibility of that happening. I kept wondering why the heck my shoulder was hurting and not my abdomen! lol And then I thought maybe it's just in my head! lol lol lol Fore-warned is fore-armed.
Susan - We get Costco's Rib Eye roasts. dh cuts each one in 3 sections (because they are rather large). Then he uses his food sealer, individually seals each piece and freezes them (each piece is plenty for the two of us). It works out really well. If he doesn't feel like boiling potatoes making smashed ones, then occasionally we have Bob Evans pre-made mashed potatoes - they are excellant! They're in the refrigerated section of prepared foods.
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Hi All!
Thanks to Wendy for emailing me about our newest members. I'm so sorry you have to travel this path, but want you to know that the women here, on this thread, are pretty terrific.
Wendy and Laura said my story might help, so here it is:
I will probably never know for sure if I had BC or not. I found the cancer in my armpit lymph nodes. It was grade 3, which means that not only is a more aggressive cancer, but the cells no longer look much like regular cells. So, it's hard to tell if the cells are from the breast or not- could be from somewhere else, like the ovaries or liver. One way that might have pinned it down is if the tumor had been hormone responsive (much more likely to have been breast cancer in that case), but since I was triple negative, that also could not be used to determine what kind I had. They sent my path to Mayo and other labs, but they could not pin it down either. Had to go by the location of the lymph nodes and the percentages.
I had dose dense chemo before my bi-lateral surgery. I felt comfortable doing this because the chemo shrunk my tumorous lymph nodes, which to me meant the the chemo would also be doing it's job on any stray small cancer cells that might be elsewhere in my body. This is usually why they do chemo first- to confirm that it is working.
I had a bilateral after the chemo, followed by radiation. No cancer was ever found in my breasts, but I still had 4 positive nodes out of 17- which again could not totally be confirmed as breast cancer.
I'm more then 3 years since I found my lymph node, so I'm considered a 3 year survivor. The treatment I had was not unusual for what I presented with, which is what anyone out there who is being offered chemo before surgery needs to know. I know it can seem freaky to leave the cancer in place, but it can also be the best treatment option.
Have to go to work (sorry, I'm always saying that, but I work 2 jobs!) Hope what I wrote helps!
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PS- forgot to say, that I had all the scans and tests before my treatment and nothing showed up anywhere else. Only in my lymph nodes.
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Morning! 24 on the deck but no snow...yet. And I see below zero temps for later in the week. Yuck. Laura, I'm with you...is it spring yet?
JanClare....thanks for stopping in. I still shake my head over your dx.
Juliet....you are not boring and we want to hear all about what is happening with you. So glad your margins were clear. Do you still have to have the foob out? I admit I really don't know anything about rads this long after recon. Can't help you with the ooph as I still have mine. But yeah....you do get filled up with gas in order to distend the abd so they can see and move around in there.
Susan....you can make my style of smashed potatoes,,,,cut up some reds, skins on....boil them up and then just smash them enough, leaving small little chunks. Then you can have some fun! You can put in butter or margarine, EVOO or chicken broth. Season with salt and pepper. And then stir in as much parmesan cheese as you would like! Yum! You can also toss in some milk or cream if you like them a bit creamier. OK...now I am hungry and my doc appt isn't til 10:15 so no food for Wendy!
Have a great Monday, y'all!
"If today was your last day, and tomorrow was too late, could you say good-bye to yesterday?" Nickelback (don't know what it means exactly, but I like the song!
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Just lovely - not. Knew it would get much cooler despite the 50 degrees that was going on yesterday. We are having very light snow flurries. Think it is all we will get..but a bit of a shock to the old system. I knew winter was not over --- but I was sure hoping for a bit more of a lull.
Jan -- maybe because I have never gotten to the lunches....I somehow never totally understood your bc story -- until now. Not that I totally understand as yet --- but it is the oddest thing to have what ??? defective lymph node or two and a primary? only there. Incredible. Have you as yet heard of any one else with this phenomenon? No wonder your Dr's shook their heads -- over and over I'm sure.
Another busy day, but I think it won't be bad --- won't be as much so as yesterday turned out as I will plan better today.
I have lost a couple more pounds on the scale, but weigh myself always first thing -- should do this at night when you always weigh more -- but to tell the truth -- it gives me a real LIFT to do it in the morning and makes being " good " a little easier. Sigh !!!!
Well onward for my day.....and trying not to envy Rita too much. Hope you all have a good one.
Hugs, Jackie
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Humor is the great thing, the saving thing. The minute it crops up, all our irritation and resentments slip away, and a sunny spirit takes their place. ~Mark Twain
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Jackie- it's pretty rare. About 1% of cancer patients present as an "occult" or "hidden" primary, where the primary site is unknown. Reading about it can really freak you out:
occult primary malignancy
"Occult cancer, unknown primary A malignancy of unknown 1º site or origin that is symptomless, which first manifests itself as metastases or secondary-paraneoplastic phenomena, and usually has a poor prognosis; OPMs are problematic as appropriate therapy requires that the primary malignancy be eradicated, and many remain obscure despite aggressive diagnostic work-up; certain malignancies metastasize to certain sites with greater than expected frequency; in OPMs affecting the brain, the primary arises in the lungs in up to 85% Treatment Up to 30% of Pts with metastases from an occult primary adenoCA may respond to chemotherapy-mitomycin C, adriamycin, vincristine; poor response is more common in ♂ and in Pts with liver and/or infradiaphragmatic metastases"Luckily, my cancer was only found in my lymph nodes, so it was not considered "mets". (And it was not lymphoma either, as that presents as a blood cancer which develops from lymphocytes rather then what I had)
Since it is so rare, most people have never heard of it. I only presented it here to let those who were wondering about chemo first know that it is a viable treatment option for a lot of different reasons.
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Just what I thought all the snows gone, it's snowing again, omg~~
JanClare- what an interesting story about your dx and made my head shake and what?? I am lost... But I am glad you are here healthy and well..
BJ- I am glad you had great time in LV and you are so right about girls wanna have fun~ I miss the.. also, thanks for the website I am looking at it as I am typing here...
Hello to new comers- Carolyn, Cagney, Rababar- Hang in there and take one day at a time...
Nice to hear from MamaQ and Julieb and Lisamed
Also, hello to Wendyk, Rita, Jackie, Donna, Laura, Buddy, Susan, and Everyone else..
Have a great evening and smile~!
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Thanks for the welcome, Elf-song. I so wish I had found this forum two years ago! I am now at the two year mark since dx and doing good. Had a f/u appt. w/onc on Fri. and my labs were all in normal range. YEAH! He is considering me NED. Since I have IBC, the two year mark is big time good as the recurrence rate drops significantly. I will be having a PET in part because it's been six months since I had one and also to verify that a painful area on my chest that's expanded is only pain from residual rad damage.
Life is Good!
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That was a good thing to write, JanClare! I forgot how troublesome your case was. I do recall being at that Long Grove restaurant when I knew zip abut my dx and everyone, including you, knew so much. I have come a long way since then, thanks to all of you. I do have a good friend (we went to elementary school together and still at 61 hang out with each other) who still does not know her path report...didn't want to know. She "assumes" she is stage II. That is odd, but she is my friend, so I accept it. Her dh was (still is) undergoing so many health issue and maybe it was just too much to handle.
Smashed potatoes.....perfect comfort food and the last thing I should have on my plate! So yummy!
I will have the rest of the CDs ready so I have not forgotten any of you. I lost half my songs so it was back to the drawing board.
I am getting ready for my long stint subbing next week. I hope I hold up. The school has complete confidence in me, but they do not know I now often sleep until nearly nine! Like Pat, I have that odd sleeping pattern where I naturally deeply lseep in the later morning. The rest of the world does not, so I will have to switch gears.
Have a good night.
Susan
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Hello everyone! I am about packed. I'm off in a few minutes to organize my golf bag and will wait to put all the clothes in the suitcase until tomorrow night but I have them out and ready. The snow flurries and blustery wind today made even more excited to get out of here. Let's hope it's clear on Wednesday so we won't have any problems driving.
I am taking my laptop so I can keep in touch with everyone at home and on the site.
JanClare, I have a golfing friend who is facing a very similar situation to yours right now. She had a lump come up on her neck. They removed the lymph node and it was malignant but can not find the primary yet. She is doing a chemo regiment now and is heading for Barnes for another opinion. Hopefully they will be able to shed some light on her situation and then set up the proper treatment plan for her. They are thinking that her primary may be in the digestive track.
Jackie, when we drive by on the interstate on Wednesday, I will honk and wave at your exit!!!!
Well, I have a few more things to get accomplished so I need to get moving.
I hope everyone had a good Monday.
Rita
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Thanks Jan and it was very scary to read up on occult primary malignancies -- with all the upset many of us went through just reading about our somewhat fairly straightforward diagnosis I think I could have easily become a real basket case. I'm thrilled that you are doing so well and are able ( seems so anyway ) to take this in stride and move through life with confidence. You are a great role model.
I have heard of others where it was felt shrinking the tumor first would in the end allow better results during surgery - even to the point of just lumpectomy, and making rads more effective as well.
Cagney -- you would have had probably a somewhat quick and delightful two years had you just found us a couple years ago. I looked at three different blogs -- and this one felt like home immediately. I lurk on one of the others, but this is where it is really at for me.
Could hardly wait to get home tonight -- snow flurries much of the morning and may be "white" in the morning. So much moisture in the air after the rain. Yecch is what I say. The wind is nearly howling outside and boy does that make it feel terrible. Good thing our furnace seems to be staying on now. Oh there is a God. New double sink is fantastic. I am in love. The dishwasher is hooked back up as if the osmosis water filter. Life is definitely good again.
I'll see all of you -- my beautiful friends in the morning.
Hugs, Jackie
P.S. Rita I was writing when you posted. If you see me on the Interstate.....don't wave -- just pull over and pick me up. It's darn cold here and not going to get a whole lot better I don't think. Lucky, lucky you..
Love, Jackie
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Yesterday is a canceled check: Forget it. Tomorrow is a promissory note: Don't count on it. Today is ready cash: Use it!
-- Edwin C. Bliss0 -
Morning! Brrrrrrr....cold again. 'nuf said....
Rita...have a fab trip! I do so wish I had something planned for February but with DH's job in education, that never works out. Altho....I could always go without him
!Jackie...I loved your quote for today!
Zap...it's not the potatoes that are bad for us, it's all the yummy stuff we put on/in them! I have tried eating a baked potato just "naked" and no, not so much! Can you say boring???? How did your valentines turn out? Hope you make it until Friday...you're not used to working every day!
Elf....good to hear from you! How are all of your boys doing? Is your Mom coming for another visit anytime soon?
Laura....you will be pleased to know that I bought a HUGE bag of broccoli. Should do me for lunches this week...aren't you proud of me! (but we won't talk about those bags of valentine conversation hearts that have been rapidly disappearing around here....I must have mice)
BJ....back to the old grind, aren't you! Oh well.....only 3 more days til Friday!
Nothing much else new around here...I am supposed to take it easy this week until I see the eye doc Friday am to check on my R eye. I went to the gym tho - but nothing bouncy or heavy. And then grocery shopping, and then laundry. And then I guess I will wash the floors down here and do the bathrooms. I guess that is an EASY day for a woman! No snow to shovel/blow tho so that's good.
Have a wonderful day everyone...don't forget...we are going to meet for lunch at Maggiano's Friday 2/5 so if you can join us, please email BJ or send her a PM so she knows if she has to make a res.! Happy Tuesday everyone!
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Elf - Hi to you too!
Rita - I am so happy you're leaving this miserable weather...sunny days and warm temps are in your very near future. Soak it up and bring some back with you.
Wendrew - Good girl! lol Broccoli is sooooooooo good for you! Don't forget...so are Almonds and Walnuts - raw, not roasted if possible. And a great source of Selenium is 2 Brazilian nuts per day.
Zap and Wendrew - Smashed potatoes in our house always includes roasted garlic. dh roasts the garlic and then SMASHES it into the mashed potatoes. lol
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I'm just doin' a quickie here. Not a lot of time. Sun was out a good portion of today while we had snow flurries....the mild dusting of the wee hours overnight dissipated quickly once the sun peeked out the first time. Nothing much going on but home earlier than normal...and that is nice.
Hmmmm---smashed potato or boiled and cubed....I spray a light spray of "Can't Believe It's Not Butter " and pepper -- no salt thanks. I quit eating salt about the same time I gave up sugar but I do use some Splenda and on very rare occasion have some No Salt salt.
Almost all fresh veggies are excellent to eat -- broccoli, cauliflower, celery etc. They are great fiber and very, very heart healthy. There is a bit of a catch of course. Organic would be better so if bought from the regular market they need to be washed really well.
My rule of thumb is --- if I don't get symptoms -- then I can handle my food that way because we ALL generally build up tolerance levels on things. We have probably ingested years of who knows what but the majority of us have a resiliency to all the insults that are and have been found for a long time in our daily life -- so I don't sweat the small stuff, or pet the sweaty stuff. You can drive yourself crazy trying to do the right thing --- there is a book out there somewhere with your name and date for leave-taking from this life --- no amt. of organic eating or much of anything else will change that. I'm a firm believer in the fact that I am here and I don't think God has any plans to wipe me out ahead of time but that is jmoho ( just my own humble opinion ). I try to be careful, but I just simply don't have the time or energy to be a fanatic. Someday when I have a little less to do maybe.
Anyway....hope you all had some of that gorgeous sun today.....I actually put away my rope and quit looking at the rafters. Just kidding you know, but too many dreary days in a row and I get really moody. I don't like myself that way either...but.
See you all later.
Hugs, Jackie
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You can clean the INSIDE of your computer screen! You probably don't clean your computer screen very often because it is really hard to get inside of it. So here's one way to clean it:
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Rita: I hope you have a safe drive and find warm temperatures soon! I'll be watching for updates of how warm and sunny it is. Enjoy every moment of your time!
I'm getting downright cranky with this crummy weather. Those couple of glimpses of sun today just didn't cut it and the wind was COLD. And now it's supposed to get "cold" the end of the week....excuse me, I'm thinking it's already cold! Grrrrrr. (that's a grump Brrrrr).
Still waiting to hear from the cancer center for the date of my f/u PET. If I don't hear from them tomorrow, I'm going to give them a call. The computers were down when I was in on Friday so I'm thinking things may have slipped through paperwork cracks. Just want to get the PET over with and the results back. Once again, patience is not one of my virtues. You'd think after two years of waiting on results, appts. and everything else that I'd have learned to be patient. Not so much.
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Thanks for all the "well wishes." I'm shutting down and packing the computer! We're on our way in just a short time now.
Everyone have a good day!
Rita
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Life is now. There was never a time when your life was not now, nor will there ever be.
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Todays' quote is a lot like the one yesterday. Eckhart Tolle is one of my most favorite authors. His is an interesting story leading up to how he became a spiritual teacher/mentor. I probably won't explain this like he does, but I found it very interesting as to what he had to say in general about aging. It went something like this. That time seems to move a lot faster as we age....but when you live totally in the now....totally in every moment, your perception of time is slower again as you experience everything with a whole lot more inner quietness and you are not "tense" with all the randomnity that touches all of us throughout the day.
It will be an interesting day for me....I am so far behind in getting things done here and did not volunteer to go to the shelter today so hope I can make some progress with this opportunity.
Guess I will get my day going here and will be checking back in later. Hope you all have a great day.
Jackie
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Hi ladies -
Sorry I have been absent. Had a rough couple of weeks at work. Had to travel out to Baltimore and had to announce the relocation of some jobs in my office - that was tough!
I haven't had a chance to read through all the old posts. Hope everyone is doing well. I think we have a couple new members - so welcome!
I had my mammo a couple weeks ago. They called me in for an ultrasound again but I didn't freak out. They were just being cautious. Radiologist said it looked perfectly normal. Go to the onc and surgeon next week for 6 month follow-up.
I have to work on the 5th so I can't make lunch. Gotta get back to work! Have a great day!
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Hi girls! Glad you checked in Connie!
Just got home from my 6 month Onc visit. I was petrified he was going to "dump" me as a patient because I stopped taking Tamoxifen. But he was great - as usual - very understanding. I had been on it for almost four years. My QOL was horrible. Now I have a dilema...do I start an AI? He told me to think about it and come back in 2 months and we'll discuss it. He wants me to research it...he knows me so well! He said if I deccide to take an AI - his recommendation would be Femara, because it has had the most studies done and it's been on the market the longest. He said he would like me to take "something" because of my young age. I hugged him when he said that! lol lol lol But he warned me that 70% of his patients who take it have very painful joint issues - (he said he wanted to be up front and honest about that). And that's one of the reasons I am not wanting to take it...I am prone to joint pain because I have a weird inflammation problem in my body. I am taking Iodine and hoping that eventually it will help with the inflamation. It's always something! lol As for the Costochondritis, I am occasionally wearing a Flector pain patch - right between my ex-boobs. lol It does help...it's an anti-inflam/pain patch. Even though I'm sure the meds get into my system, it's way better than taking a systemic pill. So...I have to educate myself about the AI's. Dang. But I do feel fortunate that I have choices...don't want to "sound" arrogant about it. And I do feel bad for those who don't have choices. I had blood drawn...he wanted to do the Liver enzymes and rbc and wbc, etc. Vit D levels will be done as well. I've been taking D3 for 6 months, so it will be interesting to compare my levels from then to now. I'm predicting that even though I've been on the D3 - that my levels haven't changed much. Which will indicate that I need to up the D3 amount. Currently, I take 4000 IU's a day. We shall see...
It's bitter cold out today. I'm glad I'm back home and don't have to venture out again.
Hope you're all having a nice day.
(edited for typos)
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Hi LauraGTO,
I've been on Femara for almost a year. I've had some se which have included some joint pain as well as fatigue. I started Femara just after I had finished rads and was really fatigued from those. I think the Femara just continued the fatigue longer. I'm also taking Cymbalta which is helping the neuropathy in the fingers of my dominant hand and for depression. Cymbalta can also cause fatigue so it's a which came first - the chicken or the egg deal. I can tell you that my onc felt that Femara caused fewer se than the other AIs. It also does not cause as much weight gain as the others. One thing it can do is thin your bones so I'm on high dosages of calcium and Vitamin D for that. Some days I do feel like some of my joints hurt more than other days but I'm inclined to believe it's more due to my age (61) and having two knees that need to be replaced than the Femara. I know when there's a major weather change that I have more pain so it could just be the barometric pressure rather than the Femara. I've never had so much pain that it's affected my QOL beyond the constraints my knees have already given me. I need to take ibuprofen probably every other day or so but not every day. Hope some of this helps.
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cagney - Thank you for taking the time to give me so much info. I appreciate it! One can rarely have TOO MUCH info! lol Glad you mentioned the bone thinning...I already have slight Osteoporosis...this concerns me. I have two months to mull it over. I'm sorry about your knee issues. Are you planning on having them replaced? Thanks again!
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