FEMARA

Aoibheann

hi ladies, has anyone had a feeling of numbness near the tip of their tongue? I'm wondering if it's a SE of femara or something else new and weird?

rozem

Aoibheann  my lips were numb on Femara - and I was only on it for a week so I know it was the Femara

Aoibheann

Hi Rozem, thanks for letting me know. There's always something... How are you now?

ShetlandPony

Keep moving. Walk around, dance, wave your fingers. My onc says being active helps with the aches and pains, and I have found that to be true. It's kind of counterintuitive, because feeling sore makes you want to sit down. I wake up with painful hands and a stiff, achy body, but once I'm warmed up, I feel pretty good. Same thing for getting up after sitting, especially driving. My mom says she feels like this just because of her age; she is not on any meds. Letrozole makes me feel old, but I'm hoping it will help me survive to BE old!

kittysister

For those of you who are on magnesium, I was wondering what brand you use. I have been taking the Nature Made brand (because I have heard it has a good rating and is safe). I just noticed one of the ingredients in it is Soy. I will probably be checking the ingredients on my other vitamins, too.

zjrosenthal

I started walking yesterday. Did about 15 minutes. Limping along but I hope it will help the stiffness in time and give me some strength back. I'm 72 but feel 92. Love, Jean

Snowgirl63

Hi kitty,

I take natures made because of the rating and advice from my pharmacists and three days after starting it again in doing better but I'm also taking Tylenol 3 every four hours and naproxen every six hours for an inflammation of some tendons in my foot. So that may be helping too but today is the first day I have felt my normal self other than the too hot for cancer hot flashes (lol). I feel so relieved and as well I read an article on this site that anti inflammatories may be helpful as well in reoccurance so if it helps me move and suggestion that it helps to prevent reoccurance then I'm in. I shoul add I've been taking the pain medication all along but couldn't afford the magnesium along with all the prescriptions for the burns etc. so they obviously weren't key to my relief from bone pain, but the magnesium is

Teresa

kittysister

Thanks Snowgirl. That's which I use, too. Hasn't been helping much, though.

Rose63

I'm taking the Spring Valley Magnesium 400 mg from Walmart. I started with a different brand (don't remember which) but that one needed two caplets to equal my recommended 400 mg dose. The Spring Valley is in one caplet and I prefer that.

I've been trying to walk too. I was a runner up until about a year ago. But after my third surgery last year and enforced 'down time' I never got back into it. Now just walking is a pretty big effort. And then I over do it, because, hey I used to be a runner! And then every drop of energy I have is gone for the rest of the day. I need to get a grip and do what I can manage now, because not doing anything should not be an option.

kittysister

Thanks Rose. I am only taking 250 mg. gel kind. Will check out the caplet at a higher mg.

No, I've never noticed any numbness in my lips on femara.

ShetlandPony

Jean, that's great that you started walking. Stay with it; I think you will feel better. I hear you, Rose63, about not wanting to either overdo it or to do nothing. Do what you can. A couple times during chemo I actually came in the door and collapsed on the floor feeling nauseous from pushing myself too hard. Today I was tired from not sleeping and I didn't exercise at all. I should have just taken a short walk and congratulated myself that I did it at all. Exercise does take some of my limited energy budget, but it also makes me feel better. I remind myself that it is a priority because it is about physical and mental health.

cloudsinmycoffee

After reading in 2013 that some women give their bodies a break from the side effects by not taking the Femara for a month or so each year, I asked my oncologist about it. He said it's not a good idea to stop because it works the same way as an antibiotic. In other words, when you start taking it again, it may not be as effective. I know I'm not explaining this very well. All I can say is that we are always told to take the entire round of an antibiotic prescribed; don't stop it just because you are feeling better. I don't know if the same holds true for continuing to take it but just taking less of it. I don't know how correct my oncologist was, but I didn't want to take the chance he was correct and I would be suffering with all those side effects I'd been through with no apparent benefit if I stopped it for a month or so each year. I did stop taking it completely after 13 months. My chances of the cancer returning taking the Femara was 5% and is 10% not taking it. I decided all of the side effects were not worth the extra 5%. In addition to horrendous hot flashes (I was told not to take black cohosh), I gained 50 pounds in 1 year, my cholesterol levels and blood sugar levels went way up, my vaginal tissues became really thin with a poor blood supply (were gray instead of pink) and tore easily, my vagina no longer lubricated when I became sexually excited, the pH of my vagina changed from acidic (normal) to alkaline (making me prone to bacterial diagnosis), I had extreme joint pain and joint edema (in addition to the severe joint pain in all my joints, it caused trigger-finger thumbs bilaterally and severe pain and swelling around my artificial knee), forgetfulness or temporary short-term memory loss, and a lot of hair loss.

Rose63

Clouds, that looks like quite a long, difficult list of side effects you had on Femara. I get wanting to get back some quality of life. But I'm sad you are losing that 5% of extra protection.

Perhaps, after a rest, you and your MO can talk about one of the other drugs available for you. It seems some women here talk about having terrible reactions to one or two of the drugs, and then finally do find one that they tolerate well enough.

Best wishes to you.

windingshores

I have noticed that when I first start walking, the pain is worse, but after 10-15 minutes I start feeling better. For me, once I finally got on (brand name) Femara after ramping up, my energy level is actually higher and I actually get sleepy at night too. But I noticed if I don't stay active I feel a little revved in the middle of the day.

For those of us who are, say, over 60, some of the side effects are very familiar: we have been experiencing hot flashes ("power surges" ?) or joint pain for some time. That may make this easier in some ways. I have been waking up with sweats for more than 10 years already.

My biggest concern is osteoporosis. I have already had it for 5 years and cannot take biphosphanates. I am doing strontium but the MD I meet with next week is not going to be happy with that as a treatment.

BC2015

I go to a gym with a lot of NIH Drs and researchers / biochemists. One in particular knows my story and all medical / bone pain / menopausal issues. He recommended a magnesium product called CALM MAGNESIUM. (Google it). It is a powder you mix with warm water. Tastes a little like alka seltzer. He said it is absorbed directly unlike the pills. It helps with constipation and sleep also. I take it around 8pm. Ramp up because it can cause some stomach discomfort.

PoppyK

BC, thanks! Wish we had a like button... it would come in handy for posts like yours.

Snowgirl63

BC2015

Thank you for posting the name of the magnesium you take I will look for it mine is a liquid capsule and says easily absorbed and I feel better that I have in quite a whil already but something to compare to that's for sure .

T

Rose63

BC2015, I'm intrigued. I found it on my amazon prime. I'm ordering. Also, I've been taking the pill in the mornings with everything else. I'll try your suggestion and try it before bed. Thanks for the tip!

cbaird99

Got my scrip today to start on Femara. For some reason I am more scared of this than surgery and radiation, I guess cuz it's so long term. Suggestions on best time of day to take it, morning or nite? Any other general suggestions to make doing this easier and calm any possible side effects before they start?

zjrosenthal

I'll be 4 weeks out from rads on Fri. Started Femara at the end of January. I finally got off my butt and started moving. Isometric crunches lying in bed and stretching has helped to get rid of back pain. I've been walking most days for about 15 min. A little over a mile. Today I did nearly 2 miles counting walking in the supermarket and my stiffness is improving. Slow and steady wins the race. Love, Jean

MsPharoah

cbaird, we are all different and you may very well not have difficulty. My only suggestions are 1) stay active. Most women experience stiffness, joint and muscle aches. These are lessened by exercise, best exercise is walking. 2) start taking your medicine at either morning or night and change if it doesn't work for you. I started taking it at night and had insomnia...switched to the morning and no problem. 3) check your other medications. If you are taking a statin or any other medicine that could have muscle and joint pain as a SE...take it at a different time than you do the letrozole. When I stopped taking them together, I had a dramatic decrease in pain. Felt like a miracle. My side effects sort of sneaked up on me at about 3 months and I am doing well, so far.

All the best to you. This is powerful medication and you want it in this fight for sure.

MsP

cbaird99

MsP, thank you for your answer! It makes sense to take it in the morning to me too, otherwise if nothing else I think I will lay there and wait for my body to blow up lol:). I do stay active, cannot stand to sit still, and I'm only on BP meds otherwise so that's ok. I have asked to get a scrip strength dose of Vit D weekly for 12 weeks to get my reading up higher, and I'm going to start taking calcium since currently I just get it from diet. And I occasionally take Natural Calm Magnesium at night and I think I will make that a regular habit too, can't hurt:)

Nash54

good luck cbaird99....so far I haven't had any SE's. I stay active (yoga and walking) and take magnesium at night. I also take my femara first thing in the morning.

shelleym1

cbaird - I'm more scared of it than surgery and rads too!!! Still haven't started mine.

BC2015

today I started having back pain. Not sure if it is the radiation or Femara. Not liking it regardless. I started they Femara the end of March.

BC2015

Shelley - I felt the same and still do. The SEs are scary to read.

windingshores

I had a really hard time getting on an AI, and had to start with 1/4 dose, then 1/2, then a whole. The first weeks I felt buzzy, almost anxious, and the neurolgical problem I have had for a few years, burning tingling in my arms, got worse. But then, all of that got better! It makes sense that as our estrogen level drops, we have more symptoms and then our body adjusts, so don't let the first weeks scare you. And you might not experience anything: I had preexisting issues.

As for joint pain, I did start having that but it is not inflammatory like arthritis. I just got back from my daily walk, which helps enormously and has other benefits too. I see people, see flowers, see dogs, look at things along the way.

I have had hot flashes and night sweats for years. The ones from Femara are not as bad as what I had naturally and they have eased as well.

The buzziness morphed into energy. I feel really good actually,

And this is the part where maybe we can get back to normal- no offense to those who are in fact struggling with I's.

Hope this helps.

nanna

JUST WANTED TO LET EVERYONE KNOW I AM A  7 YR SURVIVOR. IT WAS A LONG HARD ROAD,BUT I KEPT MY FAITH IN GOD AND HE HAS HELPED ME EVERY STEP OF THE WAY. I HAVENT POSTED IN A WHILE THOUGHT CHECK IN SEE HOW EVERYONE ELSE IS DOING. 

 

farmerjo

Hi Jean!!!

 Haven't seen you in a while! I was on anastrozole and did not do well so starting Femara next week.

Good to see you! You always made me laugh.

farmerjo

WindingShores - Good to see you again, too! Hope you are doing well. Seems I'm running into some January/February sisters on this thread..

Like I said in an earlier post, I did not do well on anastrozole. I started at 1/4, then 1/2 and that's as far as I got. Itching, burning, peeling scalp, and I literally could not walk. I am only 56 and had to lean on DH to go from room to room. I have scoliosis and lumbar arthritis so I'm sure the AI exacerbates that. I am normally extremely active so living like that won't work for me.

Anxious to see how the letrozole works.