The Hermit Club
Comments
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Cami and Lili- good to hear about your experience with Aromosin. When I first read up on the three drugs (Arimidex, Femura and and Aromosin), the later was supposed to have the least side effects of any of them. The doctors say they always start you on arimidex or femura first, I think they have been around longer and more clinical history with them. We will see where this goes next.
Took it easy today and working through this bug of mine. Back to work tomorrow, maybe just a half day.
Into December we go hermits.0 -
Jazzy don't take me wrong but aromasin has been my nemesis and I can't imagine that it is listed with the least side effects. Wow it might be fine for u but it has done a lot of damage to my bones and crazy things so I haven't change all the damage has been done and I was tolf the others migt be worse for me but no one knows s I stick with it.
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Cami- oh, good to know. I know all the AIs do erode your bones, which to me is a very bad SE of any of the drugs. I have talked to several women on the Arimidex thread that have gone from just fine bone health to full blown osteoporosis in 2-3 years. My MO said that we have to weigh the risk of bone degradation with my risk for reoccurrence (low).
I was slightly osteopenic when I started the med and do the calcium, Vitamin D, and weight lifting at the gym. However, I am not sure those things will be enough to counteract the impacts from the drug, from what I have heard from other women. I will have my next bone density test next spring with my next 6 month follow up. In many respects, I feel there is no good choice here. Return of cancer or brittle bones.
For me, there are the short term impacts of the drugs (like sore feet) and the longer term impacts (osteoporosis). I think we will be re-evaluating this every six months as we go forward.
Happy Cyber Monday hermits! Shop away!0 -
Good Morning All,
I wish I had something inspiring to say. I am thinking of you all and hoping that those of you who are feeling poorly will recover quickly.
This afternoon is my first MO appointment. Since I know the doctor as he treated me when I had ITP (low platelets) but no cancer 5 years ago, I don't know why I am so scared and therefore emotional this morning.
Cyber Monday shoppers, what deals are you finding?0 -
Sally I' sorry u feel low, but just think by tonite the app't will be over. I think most of us feel that icky feeling going to the Drs.--well I 've learned to absolutely hate it anymore, not nerves just ick Good Luck Let us know.
Jzzy when I was first told I had degenerated discs and same with the lower vertebrae it went from moderate to severe in 3 months time, and all my flying organdas don't know what caused tht but 3 Drs. said the liver is a heavy organ to move how could this happen, I don't really care but it's painful -, My knees and shoulders are horrible in a short time-I went to PT for my back but it doesn't redo u'r discs and to me that was crap, I have 3 hernias ??? Not surgical, So I blame that tiny liitle evil thing for any bone problems and they are not reversible, but other people take this med with very few problems so it's hard to tell--I'm not saying this for symapthery I'm saying all these meds can do a number on u--but it's not the return of cancer soooooo and u never know what will do what til u take it for a while. But I don't blame them for my LE hahaha or the hernias which no one seems to know why, cuz ll I do is pick up a remote and my stomach is way out there and no one really want to operate on me unless they have to. LOL see why I hermit myself more.
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Cami- god bless you. So much to deal with around your body these days. You are right that everyone has difference experiences with these drugs too. I took my first pill last night and see my MO again on the 26th.
Sally- and on the subject of the MOs, I am sorry you are feeling emotional this morning as you head to see your doctor. I was really uptight during my first visit to see mine last spring, but have found him to just be a real ally in this whole thing. The others tends to be in and out of the picture more so, but your MO is like your PCP, they are with you for the longer haul. I hope you like your MO, and that you find him/she or he to be helpful to you. I have found oncologists in general to be much more understanding through the whole process. I have a much harder time with surgeons (of all types). Feel free to share your experience today with us if it helps you?
I am not cyber shopping today myself, but did want to tell Teka I bought some things from the Vermont Country store on line recently and love them!0 -
JUst checking in hope you all had a wonderful thanksgiving tried posting from my phone and it didn't work!!!
out of the hospital after been in a week....of course there was fluid in there...have an appt with the lung dr today and the MO on Thursday....changing chemos if that is what I decide to do frustrated.
bbl
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Blondie- so good to hear from you. Did the lung biopsy indicate anything? Or is that what your apt is for today?
We are here for you and hope they can find some good balance with the meds for you. Let us know how you are doing as you go along.0 -
Oh again I love that Vermont store so many memories and all good--it's just fun to look thru the catalog and seeing all those things from yesteryear.
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Cami- I got this super comfy velour long bed shirt for $35. Wore it last night to bed, really good for those times hermiting at home. It comes in a turquoise and purple. Hint to your family for Xmas!0 -
Jazzy that is a great price too--I was looking at them--but for 2 yrs the gave me long velour nitgowns, they said no more, I have so many and they are still packed away someplace in the attic Damn--I marked my boxes and I still don't remember all the stuff I have. When I had chemo, I went from summer thru winter 2x and so I'd get all these casul things to wear cuz I really was home a lot then. hahaha I still am but not as much hahaha
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Jazzy I forgot I do have SPORTS SAVVY from Q outfits I can't find them all but that was really comfy cozy when it really gets cold that are velour.
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Jazzy & Camill, way to go with the sports savvy- do you have the Q app? LOL0 -
Furfriend what's the Q app?
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hi guys. got some catching up to do here. hope everyone is ok. just did find out that i am now after six months of arimidex, full on badly osteoporotic. after barely being slightly osteopoenic after chemo. not happy! and all those times i complained to MO, about severe pain, and finally he agreed on it, so all i can think about was the pain was from little bones cruncheting. oh man. no more heavy lifting for me. and now i am afraid to even go up a ladder to paint, cause the nueropathy in my feet, makes me not trust my balance, and if i fell, im afraid id fall to bits! more sad than scared. i always knew i would get older and frailer, but it is like i am on the accelerated program. yes this stuff kills our dis-ease, but. so now with tamox, i am having to do a sorry, transvaginal ultra sound almost every other month. simply just a little too old down there to be happy to have a man looking closely there. not as much fun as it used to be! enuff about me. cami, on my computer, from my house, you do show up here with such good grace and humor. i think of you almost everyday! you inspire me to not be such a whiner and complainer, but i am am glad i can come here, and do just that, when i must. so thank you. Lori, i owe you a pm. sorry i have taken so long....oooops. and blondiex46, where is the fluid? im so sorry to hear that. hope they fix you up soon....ok, gonna go rest for a bit, thoughts are with my hermits.0 -
Kth when I don't see someone on this post for a while I just think u'r doing well--Well slap my A$$ u'r not doing so well I'm so sorry. Don't the Drs. at first look like u'r crazy when u tell them all these crazy things, then they take tests and see it's worse than u describe. LOL And in a short time too, it's like body aging overnite, A medical phenom. with no fun just chrinkly old bones--And complain all u want I sure do.<y gastro called me today putting me on yet another med, that makes 16 different meds, I said what do they do when they meet --as if they talked--Like hell I never liked u , u goof me up, well look who's here the main aggrevator, things like that there are so many -I don't even know what they are for anymore and they don't either. I'm being silly but that's like how I think sometimes.
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Kathy- oh that is such not good news about you being fully into osteoporosis just six months into arimidex. Just too fast and worrisome for all of us on the AIs. I think about all the statistic we here about how "treatable" breast cancer is now vs. in the past, but it seems to me the treatments just cause a whole lot of damage to your body than anyone really ever talks about up front. I am sorry about your news. And perhaps you may need to adjust some of the things you do to put you at less risk for any sort of fall. Hugs to you.
And Cami, wow, 16 different meds. I take three and hate it. Once you take one, then suddenly you are taking many more. It's awful.
Hard Monday for my hermits here! I hope Tuesday is a better day!0 -
Yes, everybody! Good tuesday! I am happy though, because my friend Memphis is helping me to paint at my neighbors house. I have just not been able to motivate myself to go over there. She is great. We get to catch up with each other, and it is just making it so much nicer. she is a big girl, and strong, and wickedly funny and perceptive. She makes the most amazing jewelry, even better than mine, and much more prolific, too! She does it each day, and is encouraging me to do the same. I am sad though, a little because she is thinking about moving back to Pennsylvania. And i just am now really getting to know her! Women at the oscars actually were wearing her jewelry, one year. pretty cool, huh? So colorful, and i want them all! she is a sweetie, and i would miss her, even tho i dont see her that often. But in four hours of painting yesterday before my appointment, we had such a nice time, and got things done. So she is coming back today at 10:30 for more! And then tonight, 3 of my neighborhood women and i are going out to dinner together. we were all brought together, by the other neighborhood woman we all loved and lost, last march. So that will be a good day for me, cause i will get out of my own head. about the arimidex, though, i dont know if it is that tough on all women...but yeah, it certainly was on me. So cami, i will try to have an interesting day for you!0 -
Hi all,
Cami and Jazzy, thank you for your input before yesterday's MO appointment. He agreed with my surgeon and today's RO. I started anastrazole today and will begin radiation in a few weeks. My MO and RO took lots of time with me as had my surgeon.
Blondie, it was good to hear that you are home from the hospital. I hope your doc appointments will get you a good new plan.
Kathec, I was sorry to hear about your loss of bone density. Memphis sounds like a wonderfully fun helper. Enjoy your dinner out with your friends. Are the others jewelry makers like you and Memphis?
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Sallys70, no they are just regular normal good ladies, one works for the city of los angeles, one is a homemaker, and one is in real estate. but we all thoroughly enjoy each other! And Lois, our friend whom we lost, her husband Mel is going, and my man. so it should be fun, and then netflix delivered two movies to my mailbox! So, after bath, will snuggle in warm blankies for the rest of the night. and start all over again tomorrow! The other bad news my lymphedema therapist told me yesterday, is that what i thought was LE in my lumpy, is actually more than likely a seroma, which has never resolved since surgury. So, the only thing i can do, is to have it aspirated again. and they dont like to do that because of the risk for infection, and there is no guarantee it will fix it permantly. i had already had them do that once, and they werent happy about it, a year ago. they said give it time. i think it is what is causing the almost unbearable itching. and pain. And i am no longer fond of my BS, @ all!!! and am reluctant to even approach her about it....0 -
Hi ladies- tiring day today. I came home mid afternoon to rest. Cold still kicking my fatigue butt! I went to the hair dresser tonight and got a cute new short bob which I am very happy with. Needed something more stylish and easier to take care of with all I have going on right now.
Kathy- your time with your peeps sounds really positive and uplifting. Does your friend have a web site for her jewelry? I would love to see it if she has one. I hope she does not leave, it is hard to loose people we like and that like us back!
Sally- sounds like your trip to the MO went okay! There are threads on this site for people who go through radiation. I was on one last year called the Winter Rads group as I had my rad treatment in Jan and Feb. You might want to see if there is a Winter Rads group this year, some very helpful discussions there as you go through the next stage of treatment.
I cam home to find a big box at my front door from LL Bean. My sister sent me a beautiful evergreen wreath from them as part of my holiday gifting, and I put on my outside door! I will try to take a photo and send it to you when I can. Getting dark here now.0 -
cami (((hugs))) so sorry you have to go through all that you do!
Blondie, glad to hear you are home, so sorry you were in hospital so long. I hope they can get it sorted quickly.
My late DH and I went to the Vermont store many years ago. I still have a pair of flannel pj's with teddy bears and candy canes. They are really worn, but the memories of the trip make me keep them even so. I may be swimming in them this year, but they will come out for the Christmas season yet again.
kathec so sorry to hear of the se of your meds. But nice to hear of your connection to your friend and your neighbors.
My heart just goes out to you ladies that have to endure so much treatment w/se after sx. I feel like such a pretender having only to have gone through the BMX.
Very cold here the past few days, I just want to snuggle down in warm clothes by the fire. But I had to venture out yesterday and will have to tomorrow. It was 18°F yesterday when I went out and very windy, with wind chill factor probably around -20°F. I had on so many layers I was sweating when I went inside to shop!
I don't have any energy to decorate for Christmas and it was always a big thing for DH. Since he passed, I don't have the heart for it. I have some colored light "branches" in a vase and a couple of wine bottles that a friend filled with glass stones and colored lights out in the living room and that may be all I will do this year.0 -
Jazzy I think u'r right when something hits our system even a cold--it throws us more out of wack than ever, I don't know if the Drs. say this but then again as u said no one really follows all the stats for after all our crap,
Kath u sound like u had some fun time, and I'm so glad--I was with my GF's today too, it's just a good feeling about whatever is going on u can laugh with good friends--so Iwasn't busy with my phone (I took my work with me) but when I came home I was exhausted and for some reason in a lot more pain than usual so I took my pain meds, got as comfortable as I could then the business phone started ringing. Chit, then again and again, I just got the real facts and that's it and sent it out. I though I'm in no mood to act nice now, but I did. Well a little. Kath it funny about u'r GF who makes beautiful jewelry cuz my GF in CA does the same thing and she's on some website and she published a book about gem stones and their believed power. She is just wonderful too. See how lucky we are.Well I can afford her jewelry but she send me pieces that are gorgeous and I get so many compliments on them. Mostly necklaces. And u'r GF has had her jewlry worn by stars, how exciting.
Sally u sound good and it sounds like everything went well. Rads are not bad, just tiresome.
I just saw this from last nite, I didn't send it- DUH
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OMG Jazzy that's so true, it's awful, it's different if u sacrifice to be thin, but some don't and I think those who grew up with a big weight problem should go directly to heaven, cuz it's a terrible way to live. And mine is so out of control it's like 2 ladybugs melded together. I could be 2 people, hmmm I think I'll use that as a defense if I ever need it.
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Cami- I have always struggled with my weight. I was overweight as a kid, then was pretty thin for a number of years, then it started creeping on in my late 30s. It was at it's highest last year, I lost 40 pounds after the surgeries, gained back some. Still down like 20 pounds. My doctors want me to loose weight for reduce bc reoccurrence risk and blood sugar, but find the meds I take don't help anything. I eat no sugar now, very few carbs, exercise (although I need to do more) and still cannot loose. It's sort of a no win situation, isn't it? I blame things on the "industrialized food" we have been eating for years as well as the meds.
Well, I think you are lovely just the way you are!0 -
I always got teased for being skinny! all my life. but chemo whacked me, i actually gained 30 pounds, which i have since lost, mostly thru walking. but with tamox, it is creeping back up. no matter what i do physically, or dont eat. GrammaB, please do not think that what you have gone through with "just" bmx, was not so much. I can hardly imagine the bravery of that. if i ever have to do that, i will certainly think of you, and try to be half as brave! all of this is hard for all of us, with all its variations. we all have in common the knowledge of dealing with and being touched by this dreaded disease. We belong together! Here, supporting each other through the vagaries of any of the treatments, and all the good bits of our lives to share. Love all of you, and smile to think of us, all here.0 -
Well a Story
I was at my DD1's home with family and having a great time a few months ago and when we were leaving I fell, but it was on the grass so it was all right, My cousins got on each side of me and one of them said wait, and told me to roll up in a ball and they'd roll me to the car. Of course we all started laughing so they did get me up (I have no strength) and walked me to the car, while I was peeing my pants laughing.
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HA! Poor Cami. i would have peed laughing with ya!0
