FEMARA

peacestrength

My MO also indicated 10 years on some form of AI.

Question:  I have been taking Femara for over a month now and have been getting these itchy bumps - I'm wondering if it is a se.  Anyone else experience this on Femara?  

LKSHER

I have had a few itchy bumps.  Not major, but they are there.  There is a mild rash on my back.  When I use the Emu oil left over from radiation on it, it seems to get better.  I thought it might be from dry skin because of this winter, but who knows?

More than one Onc has said I will be on hormonals indefinitely.  I'm fine with that unless a better more solid treatment (cure) comes along soon.

naturegirl2

YoungTurky, hmmm mouth sores. What are you doing for relief?  Also, are you taking Zometa or Xgeva injections?

Scottie1- sorry you too are having mouth sores.  What was recommended for you for relief, and are you too taking Zometa or Xgeva injections?

My dentist did not see mouth sores for me but an irritation.  I tell you, a few weeks back, it was actually pain in the roof of my mouth, now, when I pass my tongue over the roof area, it's a soreness and pain.  I reported this to my oncol.  His nurse said it was a first they heard in relation to taking Femara as well as having Xgeva injections.  It is nice to know there are others out there experiencing same/ or similar problems.  My oncol. recommended Bioteen mouthwash which I tried and did no noticeable good.  My dentist prescribed what he calls his magic mouthwash which IS helping.  It has a numbing effect.  On the bottle, it says C-Lidocaine HCL, Benadryl & MAALOX.  I'm on my 2nd bottle but really not sure how long I can stay on this.  My dentist also told me I could make the concoction myself, using liquid Benadryl and milk of magnesia.(equal parts of each).

Others out there experiencing pain in the roof of their mouth and who are taking Femara or Femara and Xgeva shots?  Speak up.

Side Note-I've been on Femara/Lexatrole for 14 months, Xgeva shots for 8 months.  I have not experienced the pain in roof of my mouth until a month ago.

YoungTurkNYC

naturegirl2 - I am not on Zometa or Xgeva injections.  I should probably inquire about those when I see my onc next.  As you described, mine are also more of an irritation rather than sores.  I have not done anything in terms of mouthwash etc. to relieve the irritation.  I feel like I am already on too many things - Femara, baby aspirin and Vit D.

peacestrength

LKSHER- mine are on my back too.  Interesting....

LKSHER

Yes, it is interesting.  Hopefully, it will just subside.

gardengumby

i get itchy bumps on my back and legs occasionally. No mouth issues.  I always have so many allergies I haven't related the bumps to femara, just assumed I had made contact with an irritant... 

beergirl

My MO at first said 5 years of femara. Now she says 10 years, or maybe the rest of my life.

BigDBeatingBigC

Glad to be getting this information on Femara before I start to take it.  Heck, if it will save my life, I will take it for 50 years!  I say that now, I know, before experiencing se's but I do believe they will continue to work on new and better treatments for us.  There is always hope.

chrissyb

BigD many women don't get SEs and a lot of others get very mild ones.  What you read here are possibly the worst case scenarios as those who don't get SEs don't post.

We are all different so take your meds and perhaps you will be one who has very little, mild or no SEs just like me.

Love n hugs.    Chrissy

BigDBeatingBigC

Thank you, Chrissy. 

Scottiee1

naturegirl2........no treatments regarding the mouth sores as I have never mentioned them to my MO only my GP .  They are more of an irritation than anything else.  He did give me an ointment once to rub on the inside of my mouth which did help somewhat.  I will see my MO next month so will mention it to him.

naturegirl2

Thanks for your response YoungTurk.  Maybe that mouthwash conconction I mentioned earlier could help you. Scottie1, is it a prescribed ointment for your mouth?  If so, what is the name of it?

I wanted to talk about Femara and our breast cancer sisters here who have been on Femara/Letrozole for a number of years.  I thought I read recently someone has been taking Femara/Letrozole for some 10 years?That is remarkable.  I would stay on Femara/Letrozole if it has stopped the progression of Stage IV BC.  Can't remember who posted this, maybe more than one person.  I'd like to know how often your oncol. schedules cat scans to check on this?  I'd like to know who else is on Femara for a lengthy amount of time.  I know chrisssyb has 3 + 1/2 years under her belt, and Ephi3 has 4 years.  That is great.  When my oncol. first put me on Letrozole, I asked if the drug would continue to work for some 5 years as I thought I read about.  His response was ' get up and do a dance if that happens'.  He says generally, Letrozole/Femara works for 1 year or maybe 2 years.  Hope I see numerous + responses to this post!

LKSHER

I don't understand.  Are you saying that your Onc thinks Femara will only work for one or maybe two years for everyone?  I hope that's wrong!

Srh242

I hope that is wrong too

BigDBeatingBigC

Nature, I have recently posted that my MO intends to put me on Femara for 10 years.  That is dependent on the results of my genetic tests and bone scan, which I have not received yet.  I am meeting with my MO on the 18th.  He said he used to recommend that his patients stay on the drug for 5 years, but has recently changed his mind.  He now recommends that anyone he puts on Femara stay on it for 10 years.  As with any medicaton or treatment, we are all different and will have different reactions.  Some with have SEs and some will not or will have very few.  And maybe the drug will not work for many years with some patients, but may work for others.  I am certainly no expert here, I am still very new.  There was someone else here whose doctor recommended that she take Femara for 10 years.

chrissyb

Naturegirl I am stage IV and the Femara has gotten me to NED at the moment so I will stay on it for as long as it keeps working.....if that is 10 years then I will be one very happy camper.  It is just a couple of months off four years for me now and doing well with few SE and those I do have come and go.

My doc orders a mamo annually, a dexa bi annually and any others such as CT and MRI as required.......there is no pattern to these. They are ordered if I present with symptoms.

Love n hugs all!     Chrissy

Momine

Oceana, what naturegirl means by "working" in this context is halting progression of stage 4. Not the same as giving it to lower stage women in the hope of preventing (or at least delaying) progression to stage 4.

naturegirl2

I'm thinking I should have started a thread under 'Stage IV breast cancer as I did not realize there are people who are taking Femara and who are not stage IV BC.  Hmmmm.

All I know is my oncol. said I would be lucky to see 1 to 2 years of Femara working.  When I told him I thought 5 years, he said to celebrate.  Maybe only for stage IV bc patients, this drug would work for the allotted time.  I'm not sure.  But I have read there are bc patients who are seeing much longer time on Femara, but not knowing if they are IV stage BC or not.  May make the difference.  I hope not.

Chrissy, I didn't know you did not have a mastectomy.  Where has your BC spread to?  I think that is great you are seeing some 4 years of this drug working and in stage IV.  That offers hope to me and others.  I would love to prove my oncol. wrong and have the progression of my Stage IV halt for some 5 years or so on this drug.  I too do not want to readily get on another drug as I think Femara is a good drug, so far, and it's been 14 months since I've been taking it.  My oncol. has cat scans ordered for middle of March so we will see what's the latest is for me.  I had cat scans 4 months ago.   He also takes cancer antigen levels tests on me every other month, and that is how often I see him.

Others on Femara that are Stage IV seeing more than 2 years of this drug working?

chrissyb

Naturegirl I did have a mastectomy......right side so I'm a uni boob girl......lol.   I was originally dx 10 years ago and found out I was stage IV at my five year check up.   It had spread to my bones and is still bones only.  I was put on Arimidex when I was first dx'd stage IV but that one lasted just over a year before I had some progression then was changed to Femara.   It not only got rid of that progression but killed off what was in my arm.  Now I take my Femara each day and watch the months pass but always with the thought in mind that one day it will no longer work for me.

What your onc was quoting re length of time for stage IV was the average but there are many women who have been on Femara for years.  According to most research that I have read, the average length of time for any one med on cancer that respond well is between six and 24 months but that also includes chemo.

Like all things cancer, we, each of us, are so different that length of time for a good response is just as different.......all we can do is hope that we get more than the maximum quoted.  I was never quoted a time limit other than I would be on it until I had further progression......how ever long that took.

Unlike lower stage women who use it as a preventative, and that's a good thing because we know it works, Femara for us is a use until the cancer mutates and gets around it's blocking abilities thing........then it's move onto the next treatment etc, etc, etc until there are no more or we choose to stop.

I sure hope you can prove your onc wrong and there is every possibility you will..........he sounds like he is keeping a very close eye on you as well and that's a really good thing.

Love n hugs.    Chrissy

Kicks

Femara/letrozole is definately not only for Stage IV.  I'm Stage IIIc IBC and it's been working for me for 4 yrs this month.  I've been told I'll be on it 'forever' at least as long as it keeps working.

Safetyyfirst

Gardengumby, I began taking letrozole (femara) in Oct,2013.  The itch was terrible

And kept me awake at night.   After a week or so I called my onc.  She prescribed

Claritatin to take one before my letrozole.  This relieved the itch in about a day.

Tr h 

lahela

Five days and I'm already suffering SEs - constant headache and the itching is getting worse by the day! Spent all night scratching last night.

I'm only Stage IIa (micromets in the node) but my BC was 100% ER+ so my onc feels that this is the best drug for me. Out of 5 women in my immediate family with BC, I was the only one who didn't have multifocal, so I'm considered extremely high risk for recurrence - I'll be on Femara for at least 5 years, probably 10.

chrissyb

Lahela try taking a claritin anti hystermine tab with your Femara to try to control the itching........I did this for a while when I first started taking it and it worked for me.  That little SE disappeared after a couple of months.

Love n hugs.   Chrissy

Tammy_M43

Naturegirl, I too hope you prove your oncologist wrong....they don't know everything 

Anonymous

Anyone waking up with stiff, swollen hands? My onc thinks it's part of my fibromyalgia, but I'm terrified of Lymphodema. The swelling goes away after about an hour. But there's still a little stiffness and soreness. Any suggestions?

GrandmaV

rohanna, Had the stiff, swollen hands for about a year with femara, now only occasionally.  Got better after I started taking omega 3 fish oil, but it might have gotten better anyway.  I take 1000mg capsules 3 times a day. 

Anonymous

Thanks, GrandmaV. I'll add fish oil to my supplements. I've already increased my calcium and D3. Maybe that will help too.

naturegirl2

Thanks Chrissyb for your response.  You and I have something in common besides having stage IV BC, I too am a uni boob girl, had my left breast removed some 7 years ago, then had a stage IV diagnosis Nov. 2012 and have been on Femara/Letrozole since Dec. 2012.  Cancer was detected in a rib, sternum, and in both lungs.  My next cat scans are scheduled for March 6th. Seems he is having them done every 4 months at this time.   Yes girls, I'm out to prove my oncol wrong! LOL Thanks Tammy M for your response as well!

lassie11

I've been on Femara/Letrozole for 4 1/2 years now. The sore hands thing happened early on and then left. All sorts of side effects come for a little while and then leave. The most peculiar one is that one side of my face sometimes will flush and feel a bit "full" and the other doesn't. Knowing that's all it was made me feel much better.

The most real side effect is that I now have osteoporosis and need to take medication once a week for that. I couldn't have the bone density test on schedule to see if I might break a bone because I was in the hospital with the after effects of having broken a bone! That was over a year ago and is all sorted now.

Mostly the side effects have not stopped me from doing the things I want to do. It would be nice to have more limber joints, thicker hair and more energy, but these pale in comparison to keeping another recurrence of BC away. This time it was Stage IIb.

My oncologist says that five years will be all that's needed for me. Both the oncologist and my GP say there will be close monitoring ever after.

I wonder what people find who have stopped taking it - what symptoms disappear or reduce and how long does it take for those things to happen?