FEMARA

Hello again, it's been a while since I've been here, although I often read the posts. I have been on letrozole for 12 weeks now. I have fatigue, difficulty sleeping, hot flashes, but worst of all muscle/joint/bone pain and stiffness. I walk and swim regularly and do stretching exercises. I am struck by the differences in opinions of and treatment by our MO's. My bone density is great, with T score higher than young adult mean, and I am now in my 60's. I was told to take at least 1200 mg/day of calcium with vitamin D, which concerns me given the studies about calcium perhaps being more harmful than helpful. My bone density will not be rechecked until 2 years, at which time I will be given Prolia injections every 6 months if needed. I have always had high total cholesterol (200's to 230's), but with great HDL and ratios, so no physician has ever recommended a statin. However, my baseline cholesterol before letrozole was the highest in my life -- 265! HDL 62 (down from 80's). I was told to wait 6 months for recheck and to start statin at that time if it increases. I'm an RN, and accustomed to preventing medical problems, not waiting until they are bad enough to require treatments that can also cause adverse side effects. Does anyone else struggle with feeling that we are sometimes treated in a "one size fits all" manner," or that current studies do not support our treatment? I REALLY like my MO, but only saw him when first diagnosed; I see and communicate concerns with an NP ever since; I communicate via patient portal and have not received replies to my last 3 queries from one month ago or more. Thank you for letting me state my concerns. I'm not sure there are good answers, but maybe others with thoughts about these issues.

Thank you for your reply, Nancy. I think that seeing your MO every 4 months would be great. After intensive initial treatment of surgery and radiation, and then being prescribed Femara without follow up until November (started 3/23/18), with the nurse practitioner from here on out from my understanding, I feel a little "lost." Like just another number in the system. I think of questions or concerns all the time, and would feel better with more frequent contact. I'm an RN and know that NP's provide a wonderful function and often listen and respond more than an MD; I would, however, like to see the MO at least once per year, with my diagnosis being 12/21/17 and I only saw him for initial visit on Feb 1. I love my PCP, and she is working with my antidepressant medication, which I really need right now.

Nancy, that must be very reassuring! I had great initial medical care, but no nurse navigator available and no one with whom to address concerns on a consistent basis. I'm thankful for this site and for my ability to do independent research on questions which concern me, but it's certainly not the same as having a personal guide.

lane - my MO also started me on Zometa every 6 months. He said it was up to me if I wanted to do this as the research was not clear that it would help with early stage BC and my bone density is still in the normal range

mielli, can you tell me more about why the calcium is harmful? I guess I hadn't heard that. I'm also in healthcare and agree with you about trying to prevent problems. I had a Baseline bone scan prior to starting my letrozole a little over a year ago. I was told it was in the normal range. Which is true. But what I didn't realize is I was very borderline in my left hip. If I go down by 2 more points I'll be in the osteopenia category.. I have started doing jumping jacks to get more lateral movement in addition to the walking that I do daily.. but I am interested in any information I can be given about the calcium being harmful.

Okay ladies, I am OVER it with the Letrozole, the emotional toll is crazy.  I handled menopause fairly well and am so surprised at the emotional rollercoaster that I am on.  I was on HRT before the BC (lowest dose of combi patch 0.05 - 0.14)  because of some of the same feelings.  Anger, depression, tears, short fuse- a pot continually threatening to boil over...that I am.  The first two months of Letrozole I was fine and now 4 months later I am ready to blow.  Any advice?  I am anxious all of the time. 

Any tips?  

I do know that my manufacturer has changed a while back, could this possibly be the cause or is it truly just the lack of estrogen in my body?  I am cross posting to my Triple Positive as well to try and get as much input as possible.

The vaginal dryness is a small bit better because I use Replens every other night (terribly messy, but it is working).  I have not as of yet tried the Luvena as I wanted to compare a month of Replens to a month of Luvena.  I will then (with my ONCO's approval) try the Intrarosa for a month to see which is the magic bullet.

On the bright side my last Herceptin is in 2 days!  I may kill someone before then .....lol.  just kidding.  Please send cigarettes to the prison even though I don't smoke....I may just start.   

Lula, I am not.  Elaine on the Triple Positive thread mentioned that as well.  

Goodness this BC is a bite in the behind!

moody, I didn't know how depressed I was until I stopped taking femara. I was on about 9 months and I got to the point I couldn't bring myself to shower and barely get to work. Then id come home and sleep until bedtime, then sleep. I am trying different AIS and am still waiting to.find the silver bullet.

I was VERY angry today. Small things set me off. But I was chalking it up to lack of sleep as I'm still having issues. Overall, I'm having the fewest side effects from Femara. I've also tried Arimidex and Aromasin.

I couldn't use Replens. It burned and gave me a gross smelly discharge. Used Premeno Duo which was ok, but had to come from Germany and was expensive. What has worked better for me is a Probiotics called Fem-dophilus. It was recommended by my pcp. I have also tried vit E suppositories which weren't messy and didn't burn

My MO hasn't mentioned any infusions. My bone scan was borderline as it has been in the past. I take 3000iu Vit D. Along with a bunch of other stuff listed in my bio. The stiffness today is bad but I also wasn't very active. I should have gone for a walk this afternoon. I have to talk myself into it because our subdivision has HUGE hills no matter what direction you go.

I had reflux with femara. I really was good about eliminating coffe, carbonated water,spicy food etc and it was better. I found the best thing was a tsp of baking soda in water. Settled it right down.

Hi - I'm responding to a bunch of things ...

1. I've taken Femara/Letrozole am and pm and didn't feel any difference.

2. Am trying vit E suppositories. No mess, but I need to store them in the fridge bcs otherwise that little bugger slips right out before I can make a fast dash for bed. They start melting literally in seconds.

3. I've had good success with Tumeric as a pain reliever in lieu of gabapentin. It seems to take the top off, kind of like a low dose Oxy. (But obviously not as well). All over joint pain from Femara is still a problem.

4. I've been getting acid reflux but I thought it was from all my other pills (vitamins, glucosamine, Tumeric, etc,). Now I know! (WHY are vitamin pills so gd big??)

5. Today a friend gifted me a small bottle of CBD gummy bears. She takes them for arthritis in her hip. I'm going to give them a try. What the heck. There has to be more to life than hobbling around like a decrepit old woman, even after BC. Will report back.

6. I started on Cymbalta for help with anxiety. It also helps with my neuropathy (thanks chemo!!). Has also curbed my appetite and stress eating. Am going to ask my Dr to kick it up s notch. Ladies, don't shy away from these drugs - they can really improve your quality of life, Wish I'd started 10 yrs ago.

Lanne

Sherryc, I didn't have a problem with that, I take the generic- Letrozole

Patsy...I also take mine first thing in the morning. I had a few side effects at first (stiffness mostly) until my body seemed to adjust. I chose mornings because it said not to take with alcohol. I'm not a big drinker but IF I have a drink it's in evenings.

I had oncotype score of 24....good to read the TaylorX report supports "no chemo" for my age group and diagnosis .

Lanne, let me know what you think of the CBD gummies after you have been on them awhile, I am curious if it will work.

Thanks!

Okay ladies I'm needing some help/ dvice figuring things out. Anyone been on letrozole and zoladex? I've been having bone and joint pain so bad various areas of my body. I finally called and made an appointment with my oncologist yesterday. She wants me to trial off the letrozole and then see if things get better. But I can't help but think that it is the zoladex shot that's causing at all. She seems less willing to trial me off of that. She thinks it's more the letrozole that's the problem. The only reason I think it's the zoladex is I started the zoladex two months sooner than the pills and joint pain started with the shots.. I am going to be 53 in July so I'm thinking I'm probably a natural menopause. Anybody out there had this situation? Can you talk me through how the doctors decided when it was okay to trial off the zoladex and how you did that? What did that look like? timing of blood tests Etc? thank you all