FEMARA

jittersmom

I have been on Femera for 6 weeks. I had to go off Tamoxifen due to blood clots in my arm now i am on blood thinners...my surgeon is thinking they were caused by my port so on friday i am getting my port removed.ugh in her office anyone else have this done?. When she put it in i went under in the hospital! I am a little nervous!

Sue2010

Hi Nana.  I've been on Femara for about 6 weeks now and just had an appointment with my oncologist yesterday. 

Within the first week, I experienced some leg cramping and pain, however, my SEs have been mild, mild, mild. 

I'm losing my eyelashes but my hair seems to be holding strong (I take biotin so I don't know if that helps).  My appetite is in a major funk due to the nausea (what my MO said) , so where many women experience weight gain, I'm losing weight. In fact my MO gave me a script for an anti-nausea med because he's a bit startled by my weight loss, but I'm okay with that.  I explained to him I just joined WW and would like to lose about 10 more pounds but I'll need to take it slower, just so my MO isn't alarmed.

No major aches or pains beyoned my arthritis, for which he had me go off meloxicam because he was alarmed (I seem to have that effect on him!) by my ability to bruise at the slightest touch, LOL. He agreed to let me begin taking it again so I'm pretty sure the aches will go away.

In short, you are just as likely to have very mild SEs (if at all) as you are major. I was terrified to take Femara but went into it with an open mind and am now so willing to put up with any SEs just for my peace of mind. 

Hope that helps, Nana. 

Eph3_12

jitters, my port was put in under general anesthesia in the hospital.  It was removed in the doctor's office with a numbing shot.  It was fine.  I admit to nervousness & was a tad bit grossed out by the removal as I could "feel" the tubing leaving the vessel but all in all, it was OK.

jacee

Jitters...I also had my port inserted under anesthesia.....a 2 hr procedure. I kinda freaked when told it would be removed in the office. But, sure enough....15 mins. And it was out!

Eph3_12

That's cuz we are "Joni sisters!"

jittersmom

Eph3____12 and Jacee...thank you I am a little nervous , but i will ne happy to have it out!

slousha

Hi,

For ladies interested in to know more about D3

http://click.mail.medscape.com/?qs=e8310ae067e8d6e0c95d04315bbe82a5152aba98e45579a51fbf64dfc157d2f09fe1686762dbcaf6

Best

Usha

Scottiee1

Ladies....had my follow-up with the MO yesterday...talked about VitD3 and Mg and how it has been a little miracle for me....he was somewhat unimpressed!!!! I asked him re

amounts etc.....actually knowing this info, but just wanted to get a sense of where he was

coming from regarding how much to take. Wow....he said no more than 800 to 1000

for Vit D3 and just said to be very careful with Mg amounts as they can affect Ca in the bones!!! I'm confessing here that I lied to the man when he asked me how much D3

I was taking (I'm taking 6000IU). I said hmmmm around 3000!!!!! His eyes lit up and said

"Way too much " not necessary....Thank God I didn't tell him about the 6000....He said if I was concerned about my level I should ask my GP to have blood work done, which is exactly what I'm going to do ....I don't really care as this amount of D3 and Mg is giving me QOL, and that's what it's all about!!!! Any comments ladies????

gardengumby

Scottie - how much Mg are you taking?  Did he say how much would/could affect Ca?  My only other comment would be that if he doesn't know what your D3 levels are, then how could he say how much is too much?

Linda-n3

I had been taking 4000 units vit D and was in good "normal" range. I quit taking it when I had a high calcium level, then started again a couple months later at 2000/day. I have not had a level checked again. But I DO know that too much vitamin D can be harmful in that it has such an effect on calcium levels. My previous MO checked vit D levels at least once a year, sometimes twice, my new MO doesn't seem all that interested. I think my previous MO was more open to a lot of complimentary therapies, including dietary and supplements, but the new one not so much. If you have an opportunity to work with an integrative oncologist or at least an integrative MD or NP, that might be helpful.

Anonymous

Scottie.. I find it interesting that he pushed off the D3 testing to your PCP since I have read in several threads here that there is research to suggest that it is not uncommon for D3 levels to be low in BC patients. My MO tests me as part of my routine blood work and I got a letter from her with the results (mine was low) asking me to start by adding 2000 iu per day to my supplements. My own PCP just tested me because I am showing up with slightly high blood calcium levels and that balance is important (had blood draw yesterday so don't know levels yet).



Not to add to your burden, but a quick search on BCO will probably yield links to some of the research and you can then decide whether to bring it to your MO's attention or just work through your PCP. It just makes me testy to hear the MO blow you off that way. = (

!
Good luck and keep us posted

Momine

How does magnesium affect calcium in bones and blood? (If anyone knows).

Scottiee1

Linda...that's exactly what he said....too much Vit D3 can cause negative effects on Ca in the bones and if I'm taking "3000" IU I'm "obviously getting enough". Huh !!!! how does he know what my levels are like!!!! I didn't bother to tell him I'm taking 600mg of Mg because I thought he might blow a fuse...lol... He's basically an MO whose only concern is to check for lumps check to check if I have any symptoms and/or SE from meds



All I know is that my back problems have cleared up since starting this regime of 6000IU

D3 and 600 Mg of Mg ...I need some QOL....I noticed that when I go back in 6 months!!!!

he has requested blood work at that time. This is the first time since my dx . I did however, have a lot of blood work done when I started to lose a lot of hair and the only thing that came up slightly was a deficiency in Zn which is hard to have.....perhaps because I don't eat red meat....This was done during the summer by my GP.



What can I tell you ladies....all very frustrating.

gardengumby

I always have my blood checked by my oncologist, but (my frustration) on my last visit when I started asking her about what the different levels meant and what she was actually checking for she started talking about how checking blood levels isn't actual "protocol" but that she did it anyway for verification.  She talked so much about how it wasn't actually part of the protocol that I was completely sideways in the conversation and totally forgot about my original question. SO....  I still don't know what she looks for, whether she checks for vit D3 levels (I don't think she does), or anything else, really....   (banging my head against the computer....)

Shrek4

0

HLB

If that is working for you I wouldn't worry about taking 6000. I was taking 10000 for 2 months and my level was 63 after that. I was taking 250 Mag and the ND told me to double it. That was exactly whaat I needed to get me regular when absolutely nothing else was working! So 500-600 practically the same thing lol.

Scottiee1

Thank you ladies.....I will continue and talk to my GP about checking my D3 levels.

Day, I would love to change my MO and might actually look into that, if Inhave the energy...lol.....I'm pretty good at doing my own research when it comes to nutrition and supplements.....used to be a registered dietitian, so that helps.

ktab96

I have been taking Femara since 2011.  I experienced some hair thinning in the beginning but now it seems back to normal.  The only side effect I have is some elbow pain from time to time.  I exercise regularly.  My Onc told me exercise/strength training can help minimize the side effects.  It seems to work for me. 

nanna

My hair is thin since been on femara.

Scottiee1

I lost a lot of hair in the first six months and then it started to grow back in again.....perhaps taking biotin has helped.

summergirl1

Hi Ladies Im new to this thread but was just switched to femera after a year of tamoxifen and although I did fine on tamox except a little joint pain but as Im now menopausel he feels this will work better for me but Im terrified of this drug after googling the SE's such as weight gain, hair thinning I know I sound vain but the hardest part of this journey so far was losing my thick long hair which made me very depressed it is now growing back and I couldnt bear to go bald again.I havent read all the comments but wondered how many of you had hair thinning and does it grow back I kinda wish I could have stayed on tamox.

Scottiee1

Summergirl......we all react to these drugs differently. I for one have lost weight on Letrozole. Not everyone has issues with their hair either. If you happen to be one of the

unlucky ones, you won't go bald.....your hair will thin out for awhile and then grow back

again slowly, maybe not the way it was initially but enough that you won't need a wig.

I always say to myself...."think about the alternative".....for me, a small price to pay. Good luck on Femara......😄

summergirl1

Thanks scottie I wouldnt mind a bit of thinning I could handle that Im just scared of going bald again it really knocked my confidence and still does as I hate my short hair now I dont go out much anymore but yes its a small price to pay to be here I didnt gain any weight since dx or on tamoxifen so hopefully that wont happen now. Its scary not knowing what to expect. x

Scottiee1

Summergirl.....I have a friend, an ex-nurse and her philosophy is "don't look at the S/E or you'll have them".....lol....there could be some truth to that. A lot of women here will remind you that most women don't have S/E only the few of us that post here. One day at a time.

chrissyb

Hi Summervirl, I'm one of those women that don't have very many SEs and the ones I do have are fairly minor or well controlled. I did have hair loss and it got so thin I was almost to the point of wearing a wig. That has now reversed and my hair is once again getting thicker and at long last beginning to grow. I haven't heard of anyone going totally bald while on Femara just thinner.



Love n hugs. Chrissy

jittersmom

I also switched from Tamoxifen to femera about 6 weeks ago.I had bloodclots maybe from the tamoxifen. i feel so much better on Femera, so far no weight gain I am trying to lose, and my hair is still thick it is growing slow but I thought maybe that was from the herceptin. I have stopped reading the side effects on everything until I have an issue then i look it up!

sgreenarch

Hi, Summervirl, I switched to Femara from tamoxifen in mid January. Main SE is fatigue which I am determined to work through by exercising, eating well, taking a mini nap and overall attitude! (plus side is that I have never slept as well at night as I am now sleeping. No sleeping pill and I get seven restful hours.) I have very thick hair and I do notice more on the comb, but nothing terrible. No weight gain (yet!) My onc said that these aren't necessarily SEs of Femara, rather of having very low estrogen levels.



I remember when I was first dx thinking that I didn't care if I became bald and fat (and I'm pretty vain.) just wanted to be alive to be there to mother my kids. Now 2.5 yrs later, I remind myself of that whenever the SEs get to me. Really is the bottom line. And no one looks at me can see anything dif except that perhaps I am more mellow and relaxed:)

sian

Hi

I have been on letraxole for four years now. A year or so ago I had thinning hair, soft nails, terrible joint pain especially feet and wrists. The took blood tests to check for osteoperosis and discovered I was low in vit D. I was given supplements, 25000 ug every day for a week, then once a week for a month then once a month for 4 months.

Pains went away, hair was fantastic, nails strong, all was well.

Despite taking 1000gu vit D 3 every day since, my symptoms have returned.

I have looked into it and on letrazole some studies suggest 86% of women taking letrazole are vit d insufficient and that 1000 a ay is not enough. A study showed a mig reduction in bone and joint pain taking 5000gu a day for 6 months, longer periods were not studied.

From this we might be able to conclude that if you take 5000 gu of vit D3 every day, it will significantly improve your side effects, but also some studies suggest, would reduce your risk of relapse, as there has been studies that suggest that vit D deficiency inceases the risk of relapse significantly.

Hope this is usefull

Xx

Jane

pamelahope

Hi all!

I just started Femara about two months ago and I have the stiff hands and other general stiffness. All that I can deal with. I exercise and swim.



The side effect that is bothering me the most is a feeling like I drank too much coffee. Also, I am getting very irritable. I did read side effects peak around now and then go away. Does the irritability go away? If it does I can wait it out. If it doesn't, I am thinking I may have to try Lexapro or an occasional antianxiety medication. Do antidepressants help with this? Does the irritability go away on its own?

I am doing pretty good otherwise.

Pam

Anonymous

I can't speak for anyone else, but I started Lexapro at the same time as Femara and have never regretted it. It seems to take the edge off the anxiety and hot flashes although I still use Xanax to help me through particularly rough patches. I have been on both for 10 months and find side effects to cycle/come and go.