FEMARA
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Yes Nancy, please check back. I am also trying to decide if I am going to try temoxifin. I'm a week off my last AI attempt and I'm having more hot flashes than ever. Hang in there gk too. Hopefully we can be a resource if we try tamoxifen!
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Is there such a thing as AI withdrawal? Today is day four off letrozole and my hips are so stiff and
painful, and my thigh muscles also painful. I just tried doing some weeding and I had to quit after 45 minutes. I'm walking like a 90 year old woman.
The good news is, the hot flashes are pretty much gone.
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Hey Nancy,
I took Femara a little over a year and the same with exemistane. Couldn't stand the side effects so I got off it. Never noticed withdrawals but eventually felt like I had fibromyalgia. I now have metastatic breast cancer mets to the lungs and back. Back on femara/kisqali and zometo infusions. Work with your docs to find something to help with SE. I had a distant metastasis nothing in lymphnodes ever. I had the best kind to treat but always a cancer patient. It's sneaky. Know how you feel. Hugs and peace.
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Nancy, I take a statin called Livalo which is 2 mg. i have had no problems whatsoever with this one. Had to abandon all the others due to pain. You may want to check into this one.Wishing you the best.
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I have only been on Letrozole for 4 months and I can not take the side effects. They told me at my last oncologist appt. I could go off for 1 month and see if the symptoms went away then we can try something else.
Everything I read says they all cause the bone pain & back pain.
My back, hands, feet, legs and knees have all hurt from this medicine just not at the same time. The back pain was by far the worst of them all.
I will be watching to see how your new meds go for you.
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JoE I wonder if they missed something initially with you. It's really rare to have negative lymph nodes and then have metastasis.
Honeybee, I'll keep that statin in mind. I think I'll wait until I am on tamoxifen and have my cholesterol tested again before deciding. It would be difficult to tell what was causing the pain if I take both at the same time.
Stexas, I haven't had back pain. Mine is mostly hip and thigh and calf, which is actually more muscle than bone pain. Makes me wonder if it's something else, not the AIs. All I know is that I feel like crap and I'm frustrated.
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Nancy,
I had wide clean margins, no node involvement. Low onco score, grade one, HR+ Whole breast radiation.Took AIs for two years couldn't tolerate them so I got off them.2012-2014. Moved to Texas and took two years to settle and find new doc. 2016 regular onc visit, normal blood work and mammo. We talked about femara again but I couldn't see it. All my pet scans still show normal nodes today. Pain was the symptom that triggered the series of images. X-rays by my primary didn't show anything. Go figure. It all seemed to happen pretty quickly.
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hey Nancy, I haven't taken statins since my diagnosis in 2012 because of the aches. My cholesterol is off the charts. I've take aspirin since I was 50 after aTIA. Had just gotten off hormone replacement therapy for 5 years. I know exactly what you're talking about
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SherryC66 - I had exactly the same side effects is the same amount of time. I was three weeks in with Femara and started my early morning nausea routine. I would just turn over and went from fine to thought I was going to projectile from my pillow. Now it lasts pretty much all morning or different periods throughout the day. I'm also dizzy, which doesn't help with nausea. I had been experiencing vertigo for years, but never made me nauseous, surprisingly. Spoke with my onc and she's ordered a FSH and Estradiol blood lab for me. Not sure what that's going to tell her, but I'll let you know.
Have you done anything that has made a difference?
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Nancy618--I had the thigh and hip pain like you. Didn't ever have the calf pain. I'm not sure which of the things I did worked or if they just all worked together but for me it was the Gaia turmeric which has the black pepper in it, ginger, 5000IU of Vit D, magnesium citrate and lots of walking along with yoga twice a week. And recently I ordered some Mo' Maggie magnesium lotion from Amazon and found just a tiny pea size amount rubbed into my thighs keeps the pains away all night. I am sleeping so much better!! And as a bonus, I've been having some shoulder pain from too much swimming (I think) and that lotion has stopped that annoying pain in it's tracks!
frankieJ--the only thing I could find to help with my nausea was lots (and I mean lots!) of water and a good probiotic. Once I got about a month into those 2 things my nausea and dizziness finally went away.
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I've never had nausea or dizziness with any of the AIs. Have you tried taking it with a meal?
Day 7 and my hip and thigh pain are gone today. I also use Mo Maggie at night and it does seem to help.
I started taking the Solgar turmeric about 2 weeks ago, so maybe that kicked in. Also take magnesium and 5000 Vit. D. Plus Probiotics and krill oil.
I haven't been walking, but we're at our cottage and I go up and down stairs to the lake and back. I have been wearing flip flops which I'm not supposed to wear because of my bad feet. Today I wore sandals with an arch, so that may have made a difference too.
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hi ladies, just have to do my venting/rant whatever you want to call it this morning. I am on 11 weeks now of being off the letrozole due to joint aches. The back pain is the worst. I just finished up some physical therapy for that. It got a little better but, I would like to see it get even better. My feet also ache. Especially in the morning. I hobble out to the kitchen to get the coffee. I am also on zoladex shots monthly. Given that I've been off the letrozole for 11 weeks I'm starting to wonder if the zoladex may be causing the aches and pains. My onc has talked about taking me off the zoladex and putting me on tamoxifen. I've been afraid to try the tamoxifen due to a severe history of endometriosis which included endometrial implants on my kidney and bladder in my abdomen. I'm afraid that tamoxifen will possibly turn those into cancer. I had also heard that letrozole had a slight Edge over tamoxifen for treating the cancer. Then, I started to think about what I had heard after networking with some of the other girls on here that sometimes the aches and pains are from fillers in the letrozole not necessarily the letrozole itself. I kind of had an epiphany this morning as I was reaching for my other supplements. I take calcium,vitamin D, magnesium, fish oil, Claritin, vitamin K2, and glucosamine and chondroitin. I started wondering about the purity of all these other supplements. I mean maybe they have the fillers that are bothering me. Has anyone thought about that? My neighbor is a early-stage breast cancer survivor about 10 years older than I am, but I saw her the other day and she said she's literally gone off of everything except one blood pressure pill a day. She said she's never felt better. Now of course I'm not advocating everybody go off their meds but I can't help but wonder if all these supplements I'm taking maybe the cause rather than the letrozole. I mean I don't want to blame the letrozole for everything. I'm so sorry this has gotten so long but just wondering if anyone else has had these thoughts? And what your thoughts actually are on this. Joe can I ask with your back mets did you have back pain? There's a part of me that's terrified that this is bone Mets. But just seems like I didn't have any of it until starting the meds. So, in my opinion if it was mets why didn't I have the pain before and why would it get worse with the treatment. I also had heard from people that had gone stage 4 with bone Mets that they honestly had no pain. It was usually found while working up something else. I guess I'm just confused at this point. Any help I can get would be appreciated golly ladies I'm so sorry this has gotten so long forgive me. The good news is I had my gyn pointment the other day and I talked my gynecologist into ordering an estrogen level. I just was always curious if I could possibly be suffering all these side effects without the meds actually working. My estrogen level came back at <5 so that's pretty good considering how long I've been off of the letrozole I guess.
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I am 6 months into my 6th year of taking Letrozole/Femara.. I was doing okay with it for the first 5 years had all the joint pain, trigger finger etc.. but for the most part I was okay with it.
The 6th year not so much I am experiencing more joint pain and foot pain than before. Is there anyone out there taking Letrozole past the 5 year period that can give me some feedback?
I'm wondering if there are others like me taking it so long. Thanks0 -
evy6
Hi. I am into my 6th year on Letrozole. I do not have any of the pains and aches you describe. I do have hair thinning and I am never sure if this is from the drug or from chemo as the two overlapped,
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Thanks, I've been having hair thinning for quite a while. I'm trying to figure out if my new joint pain is arthritis worsening or being on Letrozole for so long.
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Has anyone had their ferritin levels drop while on Femara? The day I started Femara my ferritin was 31. For the last two (or more) years it has been hovering at 9.....normal is 15-150.....of course my onc says it’s not from the Femara. I have had colonoscopies, endoscopy, capsule endoscopy, etc... because they said I must be bleeding “somewhere” - all came back fine - thank God. But still no explanation for the low ferritin....I’m stillguessing Femara....or maybe radiation treatment? But that was over four years ago.....
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I don't think my oncologist routinely tests ferritin levels. I'm guessing as long as ones hemoglobin level is normal, there would be no reason to test it.
Day Ten off Femara and I don't have hip or thigh pain anymore. Only an occasional hot flash. Will start tamoxifen on Saturday.
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Gk, I had wide spread muscle and joint pain when I took Letrozole. After two years of AIs I took myself off everything. I was left with something like fibromyalgia so I was put on cymbalta by my primary doc. This time last year I started lower back and hip joint pain that came an went. . I stopped the cymbalta. I had seen my onc February 2017good blood work and clear mammo. Primary ran X-rays, I had physical therapy and he gave me anti inflammatory meds but no improvement. MRI found 5 lesions along sacrum joint. By then I was in excruciating pain. After PET scaN 5 tiny pin points found in both lungs no symptoms in lungs. HR+ is sneaky. I have a distant metastasis. No node involvement clean wide margins. I was in that 10% of distant metastatis. Short answer is letrozole causes back pain. I'm back on it for the time I have left. Still have back ache from meds. Radiation to the tumors relieved my cancer pain. Voice concerns to your onc and ask any question no matter how small. Hugs and peace.0
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Joe I'm so sorry that happened to you. Thank you for sharing your story. I do get a little nervous because one of my margins was very close. And I was also multifocal, had more than one tumor. But the largest was only one centimeter so that's how they staged me. Can I ask you one more question? Did any of the joint aches get better on the aromasin? That has been an idea that my doctor also brought up was possibly going off the letrozole and trying aromasin. But she did say in the end they're all the same type of meds so I may still have the bone aches and joint aches on that as well. I did ask her once how we're supposed to know if it's bone mets or side effects of the meds. She said bone mets would be persistent and progressive pain. She said eventually it would get so bad that it would wake me up at night and it would just keep getting worse and worse. She seems less concerned about pain that moves around. What I mean by that is, it's your hip one time it's your lower back the next it's your shoulder the next, versus pain that is in one spot that doesn't go away. I guess I might have to try the tamoxifen even though I had endometriosis. And see how that goes. I have an onc appointment next month so I will discuss the long term management. Blessings to you Joe.
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jo, I'm glad you posted. I am sorry this is happening to you, but iam.the same as you, low risk, negative nodes. So of course, you think of yourself as cured. You have made me reconsider stopping my AI . Hugs to you, and I hope you get some relief of your pain
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Jo I'm so sorry... And what you wrote has me concerned. I was clear but close on my margins. Everything else good.
I've now been off letrozole for 12 days. My thigh pain is back... Wakes me up and keeps me up for awhile during the night. It's on the backside mostly and runs down to my knees.
I've been on Aromasin too and besides the high cost, I had mild depression on it and still had bone pain.
I've been at our cottage for 2 weeks. Part of me wonders if it's lack of yoga class and regular exercise.
I wasn't sure who to contact about this, my onc or my PCP, but think I'll send a note through My Chart when I get back home.
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so this happened ..
I've been on Letrozole/Femara since Oct 2017, just after finishing rads. I had VERY bad joint and muscle pain all over, the usual “now I walk and feel like I'm 100 years old" feeling. Six weeks ago I had DIEP reconstruction surgery, which removed my tissue expanders (I'd originally expected to move to implants but changed my mind in favor of DIEP). I also had tummy muscle repair and a lymph node transfer. The surgery was long - it's usually 9 hours, but mine was 16 bcs of complications from prior unrelated surgeries and rads. I was off Letrozole for four days after surgery, but started again once I got home.
It's been six weeks - and the aches and pains have NOT returned. I have some stiffness, but now I'm back to feeling 60, not 100. No unusual or over the top joint pain.
My MO wondered if it had anything to do with the acupuncture I had during surgery for nausea. The anesthesiologist stuck small discs with tiny pointy things behind each ear. I still had one on when I got home - so it was in for 3-4 days before I noticed it (and it worked great on the nausea!).
Was it the acupuncture? Removing TEs? 16 hours of anesthesia? A 4 day break from Letrozole? A week and a half of double strength Tylenol? Pure luck? Whatever ... I'll take it
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Well I have an oncology appointment on Wednesday. I'm going to discuss trialing off the zoladex. I just don't know what else to do. Quality of life is just in the toilet right now with fatigue and joint aches.
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Gk, it's all about quality of life for me.
My aches aren't as bad... It's been 24 days off letrozole now. However, I'm still very stiff. Could be because I haven't been exercising as it's been raining for a week. My sleep is still horrible.
The only thing improved is my ears aren't dry and itchy and I no longer have stress incontinence... Although I'm chalking that one up to Femdophilus.
I did send a note to the onc office which they will probably see tomorrow.
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I was taken off of Femara and anastrozole because of joint pain. I am now on Tamoxifen. I feel so much better. I just have occasional night sweats.
Nancy, It may take 3 months for the letrozole clear your system. I was off the anastrozole for three months before I started the tamoxifen. My onc did not want to mix the meds and wanted me to have some relief before I started the Tamoxifen.
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ktab96, it's good to know you have had success with tamoxifen!
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Great news ktab about tamoxifen. I hope I have the same results.
I heard from my onc. He wants me to stay off meds another 2 weeks and they will check on me then to see if I can start the tamoxifen.
I questioned the pharmacist about waiting to take the tamoxifen when I picked it up. She said I didn't have to wait and to start taking it right away. Glad I called my onc!
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I have had some pretty severe neck, shoulder and arm pain worse at night from letrazole.
After last visit with MO, we discussed two things:
1) that I alternate Advil and Tylenol at night before bed
2) that I go to the medical marijuana clinic and see the palliative care specialist that is the lead doctor there to see what could help.
I’ve been taking the pain relievers and they have been helping sooooo much!! I can’t believe I waited so long to do this (or understand that I should do this).
Tomorrow I have my first appt with my hospitals MM clinic and am excited to see what the doctor recommends. I’m in PA and MM is finally legal, yay!!!! Curious about how it will all pan out.
Stay tuned!
Hugs all, Brenda
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Ok I had my onc appointment today. I'm going to cancel my zoladex shot for today wait about 3 months, do a blood test. And then another blood test 3 months after that. I have to be off the letrozoI that whole time. If we can confirm that I'm in menopause I can try the letrozole only again. The other option is to take tamoxifen or try aromasin. Ideally she would have liked me to stay on the shots till 55 (am 53 now). The truth is I just don't think I can hack that. In the end she's on board with it even if it isn't her best recommendation. She just explained it's hard to qualify how detrimental that might be to my cancer prognosis. But, at least she listens to me. I agree with you Nancy, quality of life is important.
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One new thing I learned in my AI class today was that accupuncture has been proven to help with AI symptoms. I may try that if I need to
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