Femara

Hey Lisa

Reading your post about the Femara is sounding exactly how I feel.

I also found that around the 4 month mark of being on Femara the "real" pain and stiffness set in. Getting up from sitting or out of bed in the mornings I look and feel like I am 90.

I thought in the beginning I had got off lightly with the Femara but between the pain, stiffness, chills and then sweats straight after each other all day and night I now know I am taking the dreaded Femara.

My onco wants me to change to another AI (3rd one) but I am thinking I don't know whether that is a good thing to do because I am a good few months down the track on this one and starting a new one who knows it will be any different. When I go back to see him next month he will probably be annoyed at me but I guess I am scared to change now.

I agree with you that exercise definitely helps but doesn't quite take the pain away. I am on natural anti-inflams every day plus Panadol Osteo every 4 hours to get through the days at present along with Krill oil, Vit E, Vit D, glucosamine, B12, COQ10, orobiotic, multi, caltrate plus. Needless to say I rattle when I walk. I sometimes ask myself should I bother with taking all this as I still get all the symptoms. I have seen GP and Naturopath and shown my list to onco and they all agree I should stay on them..........The hormone clinic has now also added Clonodine to my tablet regime......

Sorry to say it but I do feel better knowing I am not the only poor bugger suffering from the Femara and I also remind myself there are sooooooo many people out there a lot worse off than me so I do count my blessings every day.

Lots of luv, Mich xoxo

18 months!? O no! I know my onc said it could take anything up 2yrs to settle reactions but I have been praying for a shorter time. Thanks for the hints. Maybe I'll increase my dose of fish oil and see how that goes. I gave in and took an Endone last night but though it did ease the leg pain, it made my tummy feel yuck and I didn't get to sleep till 2am. I'm having a lie in today. Its nice to listen to the rain on the roof now the wet season is finally here. I think I'll make today a "gather my strength" day. Thank goodness for smart phones! I can chat online from here ;-)

Hi Lisa, I have been on Femara now for 18 months. Most of my side effects didn't kick in till about the 4 month mark. Your description of standing up from a sitting position or on the floor is exactly what happens to me, and early on, even rolling over in bed caused pain. I hate my stiff fingers and swollen finger joints, but I have discovered that large doses of fish oil really do make a huge difference. I take the triple strength capsule morning and night. ( I always forget about the midday one.) I have been doing this now for over a year, and it really does help. Good luck with it all. Love Chris xx

Hi Girls Happy New Year! I thought now would be a good time to check in and compare notes. I'm three months in to my Femara treatment and am finding it quite a challenge to continue. I have surrendered to the scowl on my face each evening when I take my tablet. I know, I know - I could be much worse in my reactions and I should be glad that I don't have the nausea or terrible rash that some ladies get but I still hate it! My joints are stiff and sore and getting up from a seated position (especially if I'm on the ground) is really difficult as I can't lean on my hands. My wrist and finger joints collapse as soon as I put weight on them so I have to roll over to my elbow.... Kind of comical for spectators but frustrating for me. Once I'm upright, I need to stand still for a few seconds whilst I teeter on my stiff, sore feet before I can walk on them. It has only recently occurred to me just how high my head is from the ground - I'm 5'10" - and sometimes I have to stagger and catch my balance. The funny thing is that within about ten steps, I'm okay. Movement and exercise definitely helps! I think the worst thing we can do is sit about and favour or rest the sore joints because those tight tendons will shorten up, for sure. I am back to paddle training three times a week and swim 2km (building up to 3) once a week and though its hard to make myself get up at 4.30am and go, I feel way better when I've done it. I got carried away over a glass or two of bubbles last week and committed myself to a rather large challenge..... I'm going to do an ocean swim at Green Island in September! I've never been in a swimming race before. Its difficult to train for it here in Cairns as it is stinger season.... Hence the distance in the pool ;-) The swim event is over a distance of either 1.5km or 3km and looks like a lot of fun and Green Island is magic - if you'd like to join me - I'd love the company! Meanwhile - here it is near midnight and I've just popped an Endone on top of my usual panadol to try and stop the aching in my leg bones and get some sleep.... Hope your journey is also manageable. Goodnight :-)

Hi Mich,   Good to hear from you.  I don't go on here too much these days as I find it can be a little depressing sometimes.  All is still OK for me and yes my GP put me on Caltrate after that bone density at the 18 month mark. My Vitamin D levels were good when tested so he said just Caltrate was fine at this stage.   I will have another bone density done about September next year and hope that the Caltrate has helped to hold the levels where they are.  I saw my Radiation Oncologist last month and she said usually there is a considerable decline in the bone density after starting on Femara but then it tends to plateau.  Fingers crossed she is correct.  I also asked about staying on Femara for another 5 years.  She said depending on the results of next years bone density it is a possibilty.  My 5 years is not up until February 2014, so still a little way to go yet.

I still get hot flushes too which do disturb my sleep at night as well  and am a little stiff in the mornings for the first few minutes but I think I just live with it all now.  It is my new normal so to speak.  I consider it not too much to put up with as long as I stay cancer free.

Wishing you all the best,      Jill    xx

Hi Ladies. Lisa I am also on thinners for non valvular atrial fibulation which was only discovered in July after a stroke. I had started on Tamoxifen beginning of May & had the stroke 8weeks later. After a barrage of tests the neurologist found the NVAF & thinks the Tamoxifen "assisted" the clot to form. So I was switched to Femara which I only started on Oct 1 after waiting a while to clear the Tamoxifen from my system & then surgery to get my port out & then switch from Asprin to this new thinner (xarelto). I only wanted one thing going on at a time because I need to keep a check on what causes what reaction. I have been on Femara now for 8 weeks & can honestly say I feel so much better than when I was on Tamoxifen. It was rough to start with,(the Femara) I had several days of vomiting & nausea here & there & headaches. I also have a "pain patch" for osteo arthritis so I am hoping that this will offset any extra joint pain. When I was on Tamoxifen I felt awful most of the time, & really only realised this after I came off it & I think it took a good 6weeks for that to happen.

Good Luck with it all

Carmel

Hey Lisa

Congrats on your grandson!!! I am waiting for my lil granddaughter to arrive 1/1/13. All very exciting. Plus it is my daughters child which makes it even better.

I have been on Femara for a number of months now after trying Tamoxifin which I found I could function while on it so Medical Onco swapped me to Femara. To start with in first couple of months I thought YES this is going to be a breeze but then a couple of hot flushes started to creep in and the muscle and joint pain was back just like with chemo and I though oh my god........BUT I persevered and it has settled down somewhat again now. It took a little while. I still suffer with sore neck and hips but I had that even before my journey started. When I saw Medical Onco again the other day he said he could put me on a different drug and I thought about it and thought I could be worse off on a different one so I would rather suffer a little and see how I go on Femara at this stage.

I am walking 30mins a day, doing pool based exercises at least once a week (I have to travel 65klms for a pool) and back doing a gym session as often as I can. I am still getting tired but that is to be expected and I just tell myself everyone gets tired. I don't have nanna naps anymore, I have lil revivers where I just lay down as can't fall asleep like I used to. I am sleeping well at night with no sleeping pills so for me that is wonderful as sleeping was a problem.

I am also on Caltrate Plus, Vit D, Vit E, CoQ10, soluble B12, 1 Krill, Multi. I also take 2 Nalgesic Forte which are a Naturopath prescribed anti-inflammatory to help with my aches and pains. Plus I do take Panadol if needed and a Berocca when I need a boost. Needless to say I rattle when I walk but if it is going to help me get some energy back and keep my bones going then so be it. Medical Onco also told me to go onto Glucosamine/MSM the other day as well. I also try to have a good diet and added Chia Seed and Flax seed.

If you have any suggestions of other Super Foods for this wanna be active lady I would be so grateful. I was seeing a Naturopath before my diagnosis who was fantastic but she has since moved out of the area and my closest one would be 400klms away at this stage.

I hope you are enjoying your lil grandson and spending precious time with your daughter. I am so hanging out for my first cuddle of our soon to be new lil Princess :-)

LOL, Mich xoxo

Hi Lisa, Jill and Lynnelle

It was good to read your update Lisa.

I had a bone density test last week after twelve months on Femara and of course the reading was down slightly. My GP was not concerned but encouraged continuing weight bearing exercise.  When I finish my current Vit D + Calcium I am returning to 1000mg of Vit D. 

Stay well and positive everyone.

Judy

Hey Jill

Great to hear from you.  Sorry to hear the Femara has not been good for your bones.  I had a bone density test last week and will see Oncologist for results shortly.  I have only been on Femara for a short time so far so I hope I have good bone density at present.

I was wondering if you were told to go on to a specific calcium tablet???  I saw a doctor at the Hormone Clinic at KEMH in Perth and she suggested I be on Vit D, Vit E and also calcium so I have added them to my regime of early morning tablets.  I take so many tabs I rattle when I walk but if they are going to help then so be it.

I suffered from bone pain and stiffness prior to chemo but it worsened to alarming rates on chemo and then it all eased off somewhat but now I get some stiffness and some bone/muscle pain but nothing compared to when going through chemo thank god.  I have also noticed a few hot flushes sneaking back in at night times over last few days where as they were really good after I stopped Tamoxifin.  I can handle minor flushes as again they are nothing compared to what Tamoxifin did to me.

Lovely to hear from you and wishing you continued good health and happiness.

Mich xoxo

Thanks for the comments, girls. I still have a few weeks before I visit my onc again so I will keep researching.... I have been perimenopausal for four years now so I am accustomed to hot flushes, night sweats, headaches, etc so that won't be anything new! As a matter of fact, I believe I'm in this situation today due to side effects of hormone management.... My gynecologist put me on the pill (Yasmine) to control heavy periods and hot flushes - 12 months later, I had a chest full of blood clots, 4 in my right leg and one in my left leg. This was "an unexplained event" so I was prescribed Warfarin for life. Next she put in a "Mirena" IUD - again for hormone control - and 2 years later, I have breast cancer! This is why I am nervous about side effects. I also feel tempted to go and give that gyny a piece of my mind! I will give all this some serious thought and have to thank you, Janet for the "voice of reason" you are no doubt correct when you say we may get a somewhat skewed view in online comments in some cases..