FEMARA

Nancy don't leave us!! My doctor has actually offered me tamoxifen also. I have been hesitant to try it because I have endometriosis very badly and was worried about the endometrial stuff. But I haven't been able to take my femara for over 8 weeks due to joint pain. I would really like to hear the follow up in a few weeks to see how the switch goes for you. My oncologist thinks that since I'm menopausal now my endometriosis should be at bay and maybe the tamoxifen won't offer up such a problem. Still scared to try the switch but might be more open to it if I hear it has worked well for others. Only a year-and-a-half into this 5 to 10-year journey. I am starting to lose hope that anything's going to be better.

Lanne, Patsy and gk,

Thank you. I will check in and let you know about my switch to tamoxifen. I am off of any meds for 2 weeks to get the letrozole out of my system. Then will start the new.

I am in terrible pain today, off letrozole for 2 days, so I know it takes some time.

My PCP got my lipid results and says my CVD risk is 10% and wants me on statins. I wrote him back and told him I have enough aches and pains, I'm not going to take statins and add more. Told him I'm going on tamoxifen and going to get serious about regular exercise.

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.

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.

JoE I wonder if they missed something initially with you. It's really rare to have negative lymph nodes and then have metastasis.

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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.

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

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.

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.

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,

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.....

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.

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

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

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.

ktab96, it's good to know you have had success with tamoxifen!