FEMARA
Comments
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Snowgirl...I'd never heard of MMS so I googled. I found this article. Might want to check it out.
http://healthwyze.org/index.php/component/content/article/320-jim-humbles-mms-fraud.html
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just started letrozole today. Took arimidex for 8 weeks and my knuckle got deformed and stiff. Switched to Aromasin for 6 weeks and my whole body stiffened. Hands like claws. Can't close my fists or bend my toes. Sure hopig this is the one for me
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I'm getting ready to start Femara in a couple of weeks. I started on Arimidex, the joint pain was too bad and my foggy brain was intolerable. Next I was on Aromasin. Joint pain the the bottom of my feet were extreme. I just started Cymbalta. Hopefully it will help ward off some of the Femara side effects. I'm nervous to start all over again on yet another med. Well, I guess I will just think positive and hope for the best.
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Chloesmom - I've got the whole claw thing going too! So wierd! Hanging in there with you
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I've been on Femara about 9 months now. So far no SE's. I do yoga and walk when I can. I heard exercise is great for the stiff joints. I've always taken magnesium so I never had any hot flashes. Best of luck to those starting out on Femara.
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Thanks for the encouragement Nash. Nice to hear the positive. I'm just 1 month into letrozole & feel like I'm waiting for the SE to hit. My Onc said about 3 months but I notice my toes are stiff & sore when I wake up & that's new. My hands & wrists hurt most of the time anyway due to carpel tunnel & tenosynovitis but seem extra aggravated, maybe from trying to catch up on the gardening that got set aside for tx. I'm just wondering if the SE could hit sooner since I've been postmenopausal since 2007? Any thoughts on this?
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No real bad pain for me...its been 6 months now. The only time it hits me is when I am sitting or laying down for any length of time..then I go to get up, I feel joint pain in my knees, feet, lower back and my left shoulder has some pain...most of the pain is gone after I am up and about for a while... the only pain that stays around is my shoulder on my non MX side, but I did have a lift and implant put in on that side so wondering if it has anything to do with that or is it the fermara.. my thoughts always drift to maybe its....... but I keep telling my self that the pain is worse after I get up from sitting or laying around then goes away. I do feel slight discomfort but not pain in my shoulder...can the joint and bone pain from fermara sometimes be felt all the time??
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I have been on Letrozole for 8 months and have severe joint pain, also insomnia and some hair loss. I am taking Venlafaxine for the sweats and flushes and it helps about 40%. I was told by the cancer clinic pharmacist that I could not take any supplements except Vit. D3 and calcium because they might interfere with the Letrozole. I had been taking magnesium and B vitamins before for fibromyalgia and it helped so much. Now I am dealing with fibromyalgia pain and joint pain from Letrozole. Are any of you taking supplements with your pharmacist's blessing? By the way, I was diagnosed and had a mastectomy of my left breast in Oct./14. Stage 2 - 3.5 cm. tumour; lymph nodes clear, hormone positive. I received neither chemo nor radiation (thank God) but followed my oncologist's recommendations for hormone therapy and "watch and wait". I am 79 years young chronologically - much, much younger in spirit. It breaks my heart to see so many young women afflicted with this disease.
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Maggie...just to clarify...so your pharmacist advised against taking magnesium with femara? I had thought magnesium might be needed to help calcium and vit D absorption. What to do?
PB
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same here - my onc said fine to biotin, magnesium, glucosamine chrondroitin.
Welcome Maggie! Nice to meet you!
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I also gave my cancer clinic pharmacist a list of all the supplements I was taking which included magnesium, B vitamins etc. and she said the only thing acceptable was Vitamin D3 and calcium. I'm wondering if they really check all of the supplements to learn about any restrictions or if they just use a blanket coverage to save time?
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Maggie, I also take Magnesium and B vitamins with my onc's agreement....maybe you should get a second opinion and let us know what they sa
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My MO also said no restrictions except some soy products. I need the magnesium to balance out the calcium.
Just read that we should split the calcium between am and pm as our body process it better that way.
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I've been on Femara about 9 months with no noticeable side effects. Maybe stiff first thing in the morning, but I think this was true even before Femara. Anyway, I had my first mammo since DX yesterday and everything was good. I also had a DEXA, which revealed osteoporosis in my lumbar (T score -3.4....anything less than -2.5 is defined as osteoporosis ). I don't think Femara has caused this because I was DX'd with osteopenia about 10 years ago but it definitely won't make things better. The NP mentioned possible infusions to strengthen the bones. Just wondering if anyone else has had this experienced.
FYI...I was 43 when I went thru natural menopause and I'm now 60. I've always been thin which I think my be a contributing factor. My workout routine is mostly yoga and some walking.
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Thanks for all the replies everyone. I am so grateful I found this discussion board and am discovering there are lots of people a lot worse off than I am. I had my 6 month mammogram and ultrasound on my healthy breast and just got the results - it is still a healthy breast. Hooray!! I go for my 6 month checkup with the oncologist on Sept. 10/15. I have lots of questions for her including the matter of supplements and particularly magnesium. Will let you know what she says.
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I just had my dexa scan on Monday. So far I have heard nothing from my MO...he is the one that ordered it. I was diagnosed with Osteopenia in 2009 and 2011... then didn't go for a few years...so I am hoping that after being on fermara for 6 months hasn't caused it to be Osteoporosis
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Nash, I work for a nursing service that does infusions for osteoporosis. The one we give, Aclasta, takes just 15 minutes once a year and seems to work wonders for lots of people.
Great to read about the clear scans
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Thanks Tammy....that's good to hear!
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Thinking Positive - Hi, I just read a medical article on calcium and DMX bone screenings. It read "Osteoporosis, as defined by DXA bone screenings using the T-score, are highly misleading , because they compare your bone density to a 25 year old (and not your age group) as the standard of normality. Bone strength and density are two different things, and having highly dense bones may increase your risk of breast cancer as a woman by 300% or more." I am thinking twice about continuing my daily calcium dose. My density test came back at a low-normal which I think is pretty good for a 79 year old woman (a far cry from 25!). It seems as though we've all been thrown into a huge guessing game when it comes to knowing what's best for us. I am from southern Sask., Canada and I am amazed at the number of women I have encountered who are afflicted with breast cancer.
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Hi Everyone,
I am 3 years now on Letrozole, and today I noticed just how thin the hair is on the crown and back of my head. It's so depressing. Can anyone tell me if it comes back following getting off this drug?
Does anyone else of this? I am sure it is getting worse for me.
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thanks Maggieb. I think I will call my mo and find out the results. Used to always say that they would call you if there was anything wrong but I was mistaken last year after my MRI. Didn't find out until two weeks after my MRI that it picked up additional lesions then the biopsy ultrasound and mammography. So I'm not taking any chances I think I'll call and find out the results of my
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Maggie, good for you! Interesting about the comparison...I had wondered about that.
Thinking positive (((hugs))) and positive thoughts from me for good results!
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MaggieB.....interesting. I was wondering why my bones are being compared to the "youth population" when I'm 60. On the other hand, I had BC and I guess my bones weren't dense. So the concern for me is spinal fractures as I continue to age.
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winter socks.....I never had hair thinning while on Femara. However, strangely, when I finished my 5 years last September, my hair started falling out in large amounts for the next 8 months or so. It has now stopped and thick again. Maybe the follicle was weak/damaged after 6 years of chemo/Femara, and just had to get healthy again
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I finished rads last week and saw my MO today. I had expected to start letrozole but she changed the plan when I mentioned my high cholesterol. When I saw my new PCP last year he asked me to take a statin for my cholesterol. I had known for years that my total cholesterol was in the high 200's but I also believed that my HDL was also high and I didn't need medication. My PCP said my total cholesterol/HDL ratio wasn't that good any more. I asked for time to change my diet and exercise more in hopes of bringing it down. I have always resisted prescription meds. Around the time of my dx I realized I hadn't made that many lifestyle changes and should go on the statin. My PCP said to wait until I was done with surgery and radiation. The MO wants me to start the statin now and will put me on tamoxifen for 3 months. It apparently doesn't affect cholesterol like the AIs. If I tolerate the statin and my cholesterol comes down she will switch me from tamoxifen to letrozole.
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jacee,
Thanks for your reply, That's really interesting your observations of what happened to you. I never felt like my hair on top grew in as well as the sides after chemo. It is hard to tell if chemo is the cause as I went on the Femara, almost right after finishing chemo. I do feel that it is the Femara as it seems to be getting thinner on the crown and parting. I am so pleased your hair is back and thick again, that must feel really good.
I am finding I am feeling really upset about it.
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Well it been awhile since i posted anything. i have been cancer free for 7 yrs. I thank God everyday for his blessings. I have been doing good. i dont always post on here but i read different post from time to time. Hope all of you have a blessed day
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Nanna....congrats on 7 years and thanks for taking the time to share some good news 😀
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Seeing your post and treatment and that you are doing well has encouraged me. I'm to have my ovaries removed soon and 3 months post radiation but having problems with emotions and lyphedema and nerve pain that shoots up to my ear. I have cut off my long hair because of feeling like I'm going to spontaneously combuste(something I thought I would never do) I just want so bad for my life to be "normal" and keep looking to this site for encouragement since I can't find it anywhere else..I actually think some people don't believe I had cancer and that is really hurting my trust in people now. Because I didn't have chemo even though it was part of the plan(oconotype score was low) and after the fact they decided not to do it but I got really burnt ms blistered with orphan sores from the rads and I'm still feeling so fatigued and just not myself anymore. I have been divoriced since 2001 and lost a son in 2009 and feel like no man will ever want me again. Is there anyone here who has had a lot of really stressful things happen that can help me I lost contact with a couple of gals on here's a hope to reconnect...I wish someone lived near me so I could actually get together in person. Anyone who wishes to cont me please send a message I really want to be part of this community because I recognize I'm really not dealing well with this emotionally and cancer society has offered me only two phone calls from a encouragement partner from the cancer connection program. I know I need ongoing support.
Thank - you, Teresa
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I won't take it anymore... Thank you for taking the time to give your opinion. F
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