FEMARA
Comments
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Welcome back to Femara! What an achy world we live in. Thanks for the tips. I'm starting Yoga I tonight--I hope the instructor is understanding about my lack of flexibility.
Cheers!
Cathleen
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I've been on Femara and Lupron for about 2 1/2 yrs and its been great at controling the bc. Unfortunately I have not "adjusted" well and have all the crummy SEs. I have noticed that stretch/flexibility and mild/light strength (I use bands) and walking have helped TREMENDOUSLY with the muscles, bone and joint issues I've developed. Not to say that Life is perfect and I still take pain meds but it has really helped. It also helps a lot to drink plenty of water/tea/fluids...usually way more that I think I need.
Cathleen, I tried lots of different things and instructors but found the best support and adaptive knowledge and understand when I did classes thru cancer center. If there is one in your area The Wellness Community usually has great stuff, or the center where you are being treated.
Hang in there ladies,
Elaine
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Hi There,
Here's a question for anyone who wishes to answer - last year I was given a mommogram when I felt the main lump (5cm) and it didn't show on the mammogram but did show on an ultrasound. Yesterday I went for my mammogram and no.1 the technologist had none of my history so I had to go through the whole thing which kinda sucked, then she said she had checked my films from last April and hadn't got any info from them. When I explained that it was seen on ultrasound only she said she didn't understand why they hadn't order ultrasound instead of or as well as mammogram. I have to say I don't have much faith in the mammogram because of last year's results. Do you ladies only get a mammogram or do you get additional scans like ultrasound or MRI each year? My boss says I should call my onc and insist on an ultrasound as well but I don't like to bother them too much. I did have the tech check out my remaining boob as it's been tender and slightly painful lately and kind of feels a little lumpy - but that may be connected with the "lymphedema" as it started around the same time. Oh well I guess it's the wait for the results game again! I hate this part - you try to remain so positive for everyone else but inside it's scary.
Good news though today as the "lymphedema" symptons seem to be subsiding, no doubt by the time I see the specialist it will have disappeared and they'll wonder what on earth I'm doing there.
Sorry if I seem to be venting but but last Friday was a year since my diagnosis, yesterday was a year since I had to make the decision on which surgery to go with etc. Didn't realize I would remember half these dates but I guess they are with me for life. I guess it just brings everything back into full view again when you are trying to put it to oneside and get on with life.
Have a great day everyone
Gaynor
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URgghh.. the dangiversaries !!! I HATE THEM WITH A PASSION although some think that I should be celebrating each one. I become a nut case.
Since I do not have any real boobs left, all I have are foobs lol... I do not get any scans until I yell for them. I am thinking about yelling about pet-ct in november as my oncologist does not believe in scans somehow.
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Hey girls! just swinging by to give an interesting update. I didn't read on this site for ages because I wanted to live in a cancer-free world for a while. Did wonders!! This is just me: I'm not counting ANY anniversaries..I'm getting all that shit out of my head..I'll celebrate my wedding anniversary
but if I'm to reach 85 years, I'm darned if I'll 'celebrate' each year or 5 that cancer 'allows' me to live until I get there. Feck that! Yes, I'm feeling feisty. The reason is probably this: a week ago I went to hospital for a proph mast and a double recon. I'm sore and raw (much like the last time I REALLY fell off a horse!) but have not had a single moment of femara pain for one week. I've still been taking it, but I haven't taken a single supplement because I couldn't be bothered loading the whole shebang to take into hospital, and lining them all up like I was a sick personanyway, I had those leg-stimulator things on for about 30 hrs, followed by the TED stockings (knee high), and haven't been on my feet much (compared to a normal teaching day) for 8 days. Not a twinge. Nowt. I walk up and down the stairs here at home like I did before cancer crossed my path. What's going on? I'm going to really track my progess, or deterioration, closely because the clue could be in the deep relaxation of the anaesthesetic and/or the improved circulation and/or just being off my feet. Does the calcium tab cause pain? I'm relieved and happy..ectsatic, actually, but....curious! XXX to all my fellow femara-hostages. 0 -
Hi all. I haven't been around for a while, kinda like Kerry, I just didn't want to deal with this. I'm cancer free so go away.......
However, with Femara has given me a reality check. I was having knee problems and was taking Lortabs for about 5 weeks while the orthopedic doc was working on my knee. I was walking, feeling great, no pain and so stopped taking the lortabs, I didn't even go two weeks when the pain started. It was worse than before I had the knee problems.
My legs hurt!! both of my knees are so stiif. My calves are so sore and tender. It's like I wanted to start running again and ran 5 miles, first day, without warming up and then getting up the next morning and you fall flat on your face because your calves goes into spasms. My ankles and feet hurt............ I called my oncologist and he said to stop taking the femara and scheduled me for an appt in 3 weeks and see if the symptoms subside. If they do then he is going to try something else. He said there are many other meds out there and that I don't have to suffer so.
I've been on Femara since January and it wasn't too bad until now. It's like when I stopped taking the pain pills the pain came on HARD. It blind sided me.
Does anyone ever have the problems just with your legs like I do?
I'm really tired of being blind sided.............................
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yeah foot pain and now it is radiating to my ankles.. oh and my fingers are trying to freeze up on me - trigger finger.
I seriously am considering Aromasin as I was told it has a different mechanism than Arimidex and Femara..
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I just started Femara - after a hysterectomy - when I was in the hospital my legs never felt better after having the leg stimulator things on for the night - I was just thinking this morning if there is a way to get something like that for home - I get swelling in my legs ever since chemo - woke up this morning thinking - wow I would love to have those! Anyone know if you can get them????
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Hi all...haven't been on here for quite while. Needed a break. Been trying to get rid of 'acid reflux' that appeared out of the blue. I really thing it is all stress induced. From the year of cancer to the tests and anxiety that all causes. etc.ect. My throat is so sore from the acid and the Nexium the ENT says It will take at least 6 weeks to heal.Oh joy! I actually hurts to talk.
I've been pretty good on Femara so far, except for a pain starting in my right thumb. I rub asper cream on it in the morning and I'm good for the day. it seems like about 6 month into the drug some of the pain problems start. I pray that it will not be the case but we shall see.
Gaynor..I only get the digital mammo. No ultrasound's. They did one when they found the lump on the mammo the first time, but the one 2 month ago was clear. My next one is scheduled for Aug.
Yes, it's all still scary but we have to try not to let it get to us. Maybe what we all need is a little ' happy pill'.
take care, Artsee
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Hi Femara Divas,
I haven't posted in awhile but have been reading all of your posts. I have been on Femara for about 3 months. The pain in my lower legs has subsided for now as well as the pain in my upper arms. I still have some swelling in my feet; more on the left one than the right one. I have been wearing flip flops! I will try and fit into a sandal next week when I give a 6-hour presentation. Guess I will try and find me a dress shoe to wear with my capri suits (have a national conference in CA week after next) and we have a dress code (student organization).
I am having a tough time sleeping. I didn't go to bed until 3 am this morning. When I am in bed, I toss and turn ALL night long. It seems that my best sleep is from 5:30-7:30. Are some of you having some strange dreams?
My hair is finally coming in. I think it was on the hair thread but someone said that they looked like an ostrich--that's me! It seems that I have more white hair than black. I am still wearing my wigs or my caps.
I am shaving my legs now. The hair on my legs seems to grow faster than the hair on my head; no hair under the arms yet.
Divas, have a great tomorrow! Linda
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Hi Artsee,
Nice to hear from you! I understand what you mean about taking a break sometimes it belongs all consuming. Sorry to hear about the acid reflux, hope the stuff clears it for you. I continue to have stomach problems but the oncs not sure what it is, thinks probably scar tissue from when I had my overies removed, she wants to leave it and see if it clears by itself till Aug when I see her again.
Started with lymphodema in my arm during/following vacation in Cuba, probably due to pressure in airplane, they think. It's subsiding by itself but they are sending me to see a specialist, no appoinment receievd yet so it will probably have disappeared altogether by the time I get to see someone, usually the way,eh?
Aches & Pains continue in arms, fingers, shoulders, legs & feet but it's just becoming part of life now.
Haven't heard anything back following mammogram last week so I'm taking it as no news is good news till I hear anything different, not sure how long it usually takes.
Linda, I also get swollen legs and feet from time to time, when I asked if it was linked to the lymphodema the onc said NO, it's another known side effect of the Femara! Let's be thankful at least it's summer and we can wear sandals. The trouble sleeping I can completely sympathize with - I asked my onc about melatonin and she said absolutely NOT, instead she presecribed a mild sleeping pill called zoplocline (I think) and that works great. I take one every night, I tried without and the sleeplessness came right back, As for hair, again I know what you mean. I had my last chemo in mid Nov last year and mine is still thin at the front and it too was more white than black/brown. Before all this I had to get my hair cut every 3 weeks, so far I have had it cut (back only) once - well maybe twice - when I returned to work I had my hairdresser try do something with it just to tidy it up a bit as I was sick of wearing the caps (August to March was just too much). And yes it seems the hair on legs grows faster than on the head although now the hair on my legs has slowed right down and very little under the arms, which for me is a great thing.
I have a great tip for anyone going on vacation or intending to go swimming this summer, or even sunbathe - try inserting a shower scrunchie (or part of one depending on size) into the insert part of the cup - I did this in Cuba and it really worked great. They keep the shape and the water runs right out so it doesn't get heavy and pull down or anything. Maybe I mentioned this in an earlier reply.
Great to hear from everyone, take care
Gaynor
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Hornet: see my June 5 post. My hospital stay (with leg-stimulator things and TED stockings) was two weeks ago yesterday and my legs/feet are still great. It is winter here and I've been wearing long doc martens boots, which used to be killer-tight on my left leg. (Post chemo). I have had a few 4-5 km walks in them and I STILL have had no leg or foot pain. My left calf is also now comfortable in the boot. Admittedly I've been also OFF my feet a bit, but this is a very real difference. I would love to conclude that these AIs interfere with circulation so much that it causes all this pain! How exciting would that be! Remember all our grannies used to wear serious elastic stockings? Have we lost some crucial wisdom here? I'm going to start wearing my hospital TEDS to bed..every night I have a couple of hours of really restless legs which is ruining any chance of a decent sleep
will keep you posted. 0 -
I like the Femara Divas tag. - I'm going to keep it.
I've been on post chemo Tamoxifin for ~ 1.5 years and recently Femara for ~1.5 years. I've gained about 30 pounds, but am trying to exercize. Am walking 20 to 30 minutes per day and doing stretching and strength exercizes prescribed by a physical therapist. I'm really suffering with bone and joint pain in my shins, knees and hips. Dr.s are aware but not much help. Daily Advil helps. I'm going to try Yoga next.
I dealt with restless leg syndrome by getting a bottle of vitamin E oil and adding a few drops of lavender oil. I rub this on the bottom of my feet every night when I get into bed and it works for me. If I forget - I know it as soon as I try to settle down.
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There is something at Sharper Image called e-Squeeze. When I was on taxol and was having restless leg 24X7 I would go to the mall and just sit in the demo chair for 30 minutes !! no one messed with me with my eyebrowless face and turban lol....
It was expensive so did not think about buying it but now I have foot pain in the mornings and cannot run anymore..
If circulation is the issue how about massage ? Hmm...
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LOL Tri! ALWAYS, I repeat, ALWAYS! play the cancer card. I'm going to check it out. It could be the answerJust found this: www.chiactivate.com/products/slimleg/legmassager.shtml. XXX 0
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Gaynor,
Once you get to a stage where you can see that the Femara is working, you will think it is all worth while.
Cry when you feel like it. I was reading an article today that said that crying from stress is good medicine so try to look at that as if you are healing yourself.
I agree with Cathleen about how things would be different if males were going through this. I saw an article on TV yesterday about how they are using sound waves to blast tumours in the prostrate and therefore doesn't damage any surrounding tissue. Why can't that work for us?
We are Women, We are Strong.
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Hello everyone! I have been on Femera for three weeks. I have been reading about the SE's. When did you begin having them?
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Have been on femara for 5months. The s.e. have not been to bad. the flashes have almost gone hope they stay gone
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I am right behind you Nana (4 months on) and my side effects are also subsiding...thank God!
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Good luck
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Hi Everyone,
I have not posted to this board before, just been kind of lurking. My onc wants me to start on Femara, having finished my chemo and rads. I did a round of Zometa about two weeks ago and am still having a little joint pain, especially in my hands from that. He said wait until that goes away completely before starting the Femara. I am really apprehensive after I had a pretty severe reaction that I had to the Z. I know the two drugs are not related and was relieved to read that only one out of seven women get the SE's from Femara. Thanks everyone for being here to bounce things around.
I have a naturopathic oncologist in addition to my regular one- they work together- and he said to take melatonin for sleeplessness. It is a hormone, so I do not see where it would be a problem to one's liver. I agree the male onc's should try their wares, although the center where I go, it seems like almost all the docs have had cancer and that is why they made it their specialty. I have yet to see any female onc's, except my rad onc was female. She is very cool- was friends with my surgeon.
Love to Everyone,
Linda
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I will be a Femara Girl in July. I was told not ot start until 90 days post-op (oopha), has anyone heard of this type of delay? My onc (fyi- Linda my onc is a female- her name is Dr. Payne- gotta giggle at that one) I hadn't had a checkup in a while and decided to call and found out I was suppose to have a follow- up every 6 weeks or so BUT no one called me? I just happened to look a my calendar. I have already experienced hot flashes, sleeplessness and knee pain. I hope it will not get any worse, not looking forward to adding anymore to the list. But is sounds like the SE's do get better (lower) with time. A big thanks to all of you, for sharing your wisdom! I really appreciate these discussion boards. I have read all 12 pages over the last couple of days and will be armed with more information when meeting up with my onc and surgeon over the next few months.
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i've been on Femara since March 1st and the few hot flashes have disappeared. no other s/es. Had pain in my right thumb for about a week and that is also gone now.I'm keeping my fingers crossed.
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Thanks, Artsee, for some hope of a small amount of SE's. It seems like the women that write in are the ones with the worse SE's. I am keeping my fingers crossed for all of us!
Linda
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Femara Divas,
I am doing okay on the Femara (3 months), but lately when I wake up, I feel like I have been run over by a truck. The top of my arms feel like I have been fighting in my dreams.
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Lias-Lisa - My onc also delayed my switch to Femara from Tamox after ooph. I had the ooph in early Jan (started Tamox in Dec), then switched to Femara in April if I remember. I went into chemo pause after 2nd A/C chemo, however after chemo treatments really felt a few times like my periods were trying to turn back on. So I requested the ooph to avoid taking Zoladex shots. I did have really extreme hot flashes, mood disturbance and sleep issues on Tamox. In winter months I wanted to walk around outside in a tee shirt!! Any physical exertion and I was sweating through my clothes. I don't think I would have lasted 5 years on Tamox.
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cp418- Thanks for the information. I guess its just so individual with the SE's, only time will tell......I plan on getting as much help as I can to reduce the SE's as possible, if I can't stand them and with all the stories here I feel somewhat comforable in knowing we all go thru it differently and the doctors really don't clue you into this stuff or even know about it. I just keep thinking 5 years is a very long time to deal with painful/annoying SE's. I still have chemo SE's and look forward to the day when all that clears out (finger nails, fatgue, insomnia, minor body aches) I just feel older than my age! "YUCK" Am glad to have the chemo behind me, a little freedom does lift the spirits! On another note: We will be traveling and I was able to order a lymphadema sleeve FYI I found that it is a special order product that most do not carry and insurance is separate for coverage so if anyone would like to have one for prevention purposes order it as you make your travel plans so that you will be able to get it in time. Sending out GirlPower energy to you all 0
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Hi Femara Divas
Can I join this club???? I took my first Femara pill June 15th after being on Tamoxifen for 2 1/2 yrs. So far, no SE's other than I have a few minutes when I first get to work and get settled in for the day that I get a 3 mintues hot flash, but that is it so far....of course, Im blaming the Tamox for some of the achy/stiffness, but Im sure Femara will just carry on with that....
Lisa-Lisa-I was 1st put on tamox, after I finished rads I had a complete hysterectomy, one week later the onco put me on Arimidex.....I made it 4 months on it and was miserable the entire time....that onco left and I talked about this with the new one and he said that he doesnt change someone for months and months after they are menopausal because he doesnt feel that the estrogen level is low enough and he said that he has found waiting helps with less se's.....after my experience I would say I have to agree....I went back on tamox and tolerated that ok until just a few months ago.
Heres to hoping we can help each other through se's and the after bc treatment land!!!!
Jule
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Hi Girls,
Sorry I haven't been on for a little while, had lots of family stuff to deal with which kinda stressed me out, enough said. Unfortunately I did find that major stress brings back the SEs bug time. I swelled in my arms & legs, ached like I coudln't believe - oh and the sweats. However the stress is now under control (I think) and the SEs are slowing down. I got an appointment for the lymphodema clinic, mid August! I had a mammogram 5 weeks ago and still haven't got the results (taking it no news is good news, although they probably lost the report) - go figure, however I bumped into my Herceptin nurse yesterday and she's going to check into it for me in time for my Herceptin appointment today. Did you guys get any other tests done at the one year mark? I have another muga scan for my heart scheduled & an appointment with the onc but nothing else.
OK, just had a week off work so now I'm back I'd better get on with some stuff before I leave for the Herceptin for the morning.
Love to all
Gaynor
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Hello, Divas! I jumped on the Femara train this weekend. As I have had really horrible se's (and secondary se's) from chemo (TC) and had to stop early, my doctor and I have agreed that I should start slowly and work my way up. So, I started by taking 1/2 pill on Friday, so as it's Monday, have only had 2 full doses. Weird foot pain on Saturday night, but that could have been anything. Already been doing the hot flashes since February when I stopped taking HRT after we found the lump and I was dx'd, so nothing new there. Already on Prilosec for acid reflux, so if there are any stomach issues with cutting the pills, I haven't seen those either. I started taking fish oil and Vit. D, and calcium, plus an antioxidant vitamin prior to starting on Femara, and have been taking Biotin since end of April to get my hair growing (it's trying). Biggest thing I guess is I need to get MSM (what is that?) and Glucosamine to help with the joints. Also, restarted my yoga this weekend, and boy did those stretches feel good - first time in 6 months I really stretched anything! I plan on upping my walking, and we've been getting more bicycle time in, and plan to do this a couple of times a week too. I guess after about a week or so on 1/2 doses I'll try to up it to a regular full dose, unless you ladies have gotten any research that just doing the half tab is fine - then I plan to stay right where I am. I am nervous of the pain / stiffness se's, as my job entails me to be very physical at times, I am a marketing manager for a boat builder, and I need to do photo shoots, set up boat shows and events, etc., and I am fearful that this could interfere and not allow me to work!
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