FEMARA

Lily55

Yes first few months were the worst for night sweats.....

micheleboots

I hae night, morning, noon and anything in between sweats..

maltomlin

Hi Aussieched

I had a very pleasant surprise when I saw my onc yesterday. She asked about any s/e I have, and I went through them - weight gain, memory loss, a numb foot etc. Nothing compared to some. She then said that although the trials weren't yet complete on the benefits of extending femara/letrozole, as I had node involvement, she felt that I should stay on for another 5 years, providing my dexa scans don't show any serious deterioration in my bone density.

So I'm happy (well sort of). 

It is tough though. It would be great to finish all medication but I don't want to tempt providence.

Have you made a decision?

gardengumby

Yes to sweats morning, noon and night!

micheleboots

I had  quite  a day.  I fell  at work, right on my bottom.  It hurt like hell.  Now I got two sore hips.  My ct scan on Thursday should be somewhat confusing for sure...I think I 'll take some tylenol and crawl up to stairs..

HLB

Thanks ladies for the replies about night sweats. Maltomlin, can you tell me more about your numb foot? I had a numb left leg from the knee down for about a week and never figured out what the cause of it was. It was really weird. Woke up that way and I couldn't even walk right. Gradually went back to normal.

aussieched

Hi Maltomlin, No I haven't made a decision yet.  I am still sitting on the fence, and I believe the medical people are also, until more data comes out.  I am thinking at this stage to stay on it until at least the end of the year, then hopefully we will have more info on it.  I would definitely stay on it, however my bone density is dropping rapidly and to osteopenia now.  When I started 5.5 years ago they said I had the bone density of an 18 year old, so it has really plummeted, obviously the oophorectomy would be contributing this loss also.

As they did not recommend chemo at the time of diagnosis, I had a positive gland, I feel I need to keep on it also, to minimise my recurrence odds.

thanks Ched

maltomlin

Hi Ched

After my dexa scan 3 years ago, I too had bone loss and was borderline osteopenic, but the last year's scan showed no difference, so I await my scan this summer. Although I did have chemo, I still think of femara as my security blanket (rightly or wrongly). I've kept the beast at bay and whether that's down to femara, I'm not willing to chance.

I did have terrible s/e for the first few months and thought 'I can't do this for 5 years', but they gradually subsided (thankfully). My brain certainly isn't as sharp as it was and I'm more tired & lethargic, but hey......still here.

HLB, my foot? Well it's felt numb and has 'tingled' for a few years, so I am certain it's due to the femara. It doesn't really cause me any problems. Just feels strange. When the duvet catches it etc etc. I'm sure if your leg is affected then that is more of a problem.

Take care

gardengumby

aussieched - did you have an oncotype test done?  I didn't have chemo or rads, had 2 positive nodes and have been on this stuff for about 1.5 years now.  My oncologist has been talking about the ongoing tests, so I'm anxiously waiting to see what they say - but as of this moment in time, I'm planning on no more than 5 years, as the stuff beats me up.

aussieched

Hi gardengumby,

No, in 2007 we did not have the oncotype test available to us here in Australia, so I have been flying blind as to the odds on recurrence. I have had every problem there is with femara, pain and loss of use of my limbs coming and going over time, vertigo for 9 months where I could hardly stand or walk, however through it all I have continued to work full time, I felt if I gave in to it, I was giving up, so I have pushed on and tried to be positive, but it has been very hard.

My latest problem now is lymphangioma circumscriptum which is small tumour like growths which have come up in my axilla, about 20 of them now, they are painful and weep, and are continuing to grow and spread.  They have caused me to spend time in hospital with major cellulitis and I am now battling to find someone here to know how to treat them.  Apparently they can be lasered however will come back and spread.  I have been told they might spread over my entire upper body, where I had radiation, and there is no known treatment to stop them.  I can have the laser but they will grow back, and could in time turn into angiosarcoma, so my prospects are not looking that good at the moment.

Frankly it is wasn't for the bone loss, I would say on femara for ever if I felt it would keep a recurrence at bay.

Keep in contact, thanks Ched

gardengumby

That sounds terrible!!  You say that they are spreading where you had radiation?  Is it related in some way?

aussieched

Gardengumby,  Yes it is a side affect from combination of having 30 glands removed, lymphoedema + radiation on top of it.  In the first place I was opting for a mastecomy, however the surgeron talked me out of it, saying lumpectomy and radiation had just as good a result.  Boy am I sorry now that I had the radiation, and didn't have the mastectomy.

These new types of growths are a direct result of a large number of glands being taken out, then lymphedema and effects from radiation.  It is very rare and it has taken me almost 2 years for someone to actually give me a diagnosis.  I have been going to many doctors with no outcome.  

I just really hate what has happened, and of course they are all saying it is rare and never seen it before.  I actually diagnosed it myself from researching on the internet, until I finally found a visiting doctor to Australia from Scotland, to actually agree with what I thought it was.  Now I know there is no cure, just trying to slow it down.  These are the problems they never tell you about when they are talking you into the treatments at the beginning of your diagnosis, and obviously you sign your life away signing on the dotted line to undergo the treatment, however they say problems are rare.   Yes some problems are rare, however I just happen to be one of the people who now has major problems from the treatment.  I guess much the same as the poor ladies who have permanent damage from chemotherapy.  There are no guarantees from the treatment, however they do seem to downplay the side affects, (especially radiation) until you become one of the unfortunates to experience problems.

Ched

HLB

Ched so sorry you are having this problem. I agree that they do downplay the SEs and the late effects. I don't care how rare something is, if you are the one who gets it, it may as well be 100 percent. I refused tamox due to the uterine risks and he said the problem now is breast cancer. In other words don't even consider the future ramifications. We all have to do our research that's for sure.

Malto thanks for the response about your foot. Just curious because I haven't found anyone who had this problem. Its better now but I still wonder why it happened because the numbness was so severe at the time, I had to call off work because I couldn't walk.

HLB

Here is a possible tx from a pubmed article. Have you seen a dermatologist?



Lymphangioma circumscriptum: treatment with hypertonic saline sclerotherapy.



AuthorsBikowski JB, et al. Show all Journal

J Am Acad Dermatol. 2005 Sep;53(3):442-4.



Affiliation

Department of Dermatology, Ohio State University, Columbus, Ohio, USA. drb@bikowskimd.com



Abstract

A 38-year-old woman came for treatment of multiple clear vesicles and hemorrhagic papules on the posterior aspect of the right shoulder and the right axillary vault of 5 years' duration. These lesions would spontaneously manifest as clear or blood-filled vesicles (or both) and appear to be exacerbated by physical contact from certain articles of clothing. A biopsy was done and the results revealed lymphangioma circumscriptum. The purpose of this case study was to evaluate a new form of treatment of lymphangioma circumscriptum with the use of 23.4% hypertonic saline sclerotherapy. The patient's lymphangioma circumscriptum significantly resolved with minimal side effects, such as mild hyperpigmentation. Decreased sensitivity was noted and no further treatment was indicated. This case showed that hypertonic saline 23.4% solution can be effective in treating the appearance of vesicles containing clear fluid or lymph and those containing red blood cells in superficial lymphangiomas and that this treatment can be considered for long-term management of lymphangioma circumscriptum.



PMID 16112350 [PubMed - indexed for MEDLINE]

Full text: Elsevier Science

maltomlin

Hi

I have to tell 'the other side of the coin'. I had 24 nodes removed during clearance and have had no  problems at all. I am careful with that arm. Do all the normal things BUT don't lift anything heavy, and am sensible. The arm is fine. I'm over 5 year's out and feeling fantastic.

Everyone is different.

gardengumby

I also had 19 nodes removed (2 were positive).  I haven't experienced any issues, either, and I can't say that I'm all that careful.  No radiation, though, or chemo.  As you say, everyone is different.  When we have cancer the doctor's focus is to rid us of that.  They do often downplay the possible side effects of the varied treatments we are receiving, as their (and our) focus is to get the cancer gone.  I've been lucky thus far, and hope to continue to be. 

The only thing I am religious about is using compression when I fly (and I still puff up like a marshmallow).  I often find myself lifting with the "wrong" arm, because unfortunately the "right" arm is extremely painful from other things.  I've cut myself on the compromised hand/arm more times than I can count, and have been bitten by bugs (why is it that they always want to bite the compromised arm???).  One day in the doctor office (I was side-tracked by the fact that he was getting ready to cut out some skin cancer) the nurse put the blood pressure cuff on the wrong side.  I freaked out as soon as I realized what I had allowed to happen - but even that didn't create any issues - nor do the massages that I get about every other week. 

But letrozole/femara has been very difficult for me.  I am in pain most days (both muscle and joint) and am incredibly tired most of the time.  When I was first diagnosed I was insistent that i was going to work until I reached full social security age, but my aches and pains and hubby have convinced me otherwise.

Momine

I had 22 nodes out on the right, as well as chemo through that arm (before surgery) and more chemo through the other arm after, then rads.

While still in treatment, the arm did swell some, and it felt like I had something stuck in the armpit. I got myself to an LE therapist and saw her weekly for many months, and wore a sleeve/gauntlet all through the rest of treatment and for about a year after.

We fairly quickly managed to reduce the swelling, but for several months after that, I would still see lines on the arm from the bed clothes when I woke up. So the swelling was not measurable, but there was still something going on.

Now even that is gone, and I think it is largely thanks to careful, gradual, regular exercise with small weights, daily walking and 15 minutes of yoga a day (this last is a recent addition, but it really seems to improve circulation).

nanna

Does anyone know shelf life of femara? How long does it stay in out sysyem?

gardengumby

I don't know, but I heard that it stays in our bodies for a few weeks.  Six is the number that springs to mind, but I don't honestly know.

jacee

The shelf life is 5 years. The half life is 2-4 days. Staying in our system, don't know. Side effects remain for up to 3-6 months I was told.

artsee

Hi all, some of you wanted me to stay in touch on this thread to let you know how things were going after going off of Letrozole.

My 5 year stint ended May 13th and I have to tell you I immediately felt like garbage. Nothing was getting better...same old same old.

About five days ago things turned around for me completely.I should knock on wood...but I feel better than ever. This is very unusual for me as Femara and it's partner can do quite the number on our body's and minds.

I'll keep lurking, because I have gotten to know some of you well, but right now I'm not complaining. The only thing that has stayed the same is the amount of hair in my brush and comb. I was hoping that would end and maybe it needs more time. That is one of the side effects. My hair is not showing my scalp but it is fine and thinner than before BC.

Hang in there everyone, God is in charge!! Don't hesitate if you have questions. I will answer as best as I can.

Hugs to you.....

Scottiee1

Artsee.....thank you for your constant updates....glad you have started to feel better.

gardengumby

Thank-you for the update, Artsee. 

maltomlin

Hi

The 'half life' of femara is 48 hours.

Lily55

Proof we are not imagining more stress when on AIs...



http://www.dailymail.co.uk/health/article-2359132/Why-women-cope-better-stress-men-Oestrogen-helps-block-negative-effects-brain.html

beergirl

Is 5 years of femara still the standard length of treatment? I finished 5 years in May (I think), but now my onc wants me to take it for 2 more years, or maybe 5 more years. I already had osteoporosis before I was diagnosed with bc. I have not had too much of the SE's of femara. I have achy knees which I think are caused by arthritis, but my onc says it's the femara.

GrandmaV

Youlook, As far as I know, 5 years is the standard length for early stage breast cancer.  My onco confirmed that today. There are ongoing clinical trials exploring the optimal length for femara, but they won't be finished any time soon (that I know of). 

Eph3_12

What GrandmaV said

chrissyb

Yup I agree with Granma as well.  They are trying the longer time with an AI as well as doing a combination Tamoxifen/AI to see what is going to give the optimum benefit to us but the final word on that is still in the wind and lord knows which way that is blowing.

Love n hugs.  Chrissy

cfdr

That's correct as far as I know...5 years is still the standard. However, my onc told me that it is not unlikely that they would start recommending longer (possibly lifelong) treatment in the future. AIs haven't been around long enough for them to really know yet if 5 years is enough.