FEMARA
Comments
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you can see my stats below. My onc score was high so after being told that I probably wouldn't have to do chemo, the MO & BS both encouraged me to do it after all. What they didn't know was that I had pretty much decided I was going to do it anyway, no matter the score. I wanted to throw everything I could at the beast.
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The current standard of care is shifting, in large part due to the oncotype test -- and the new acceptance that that chemo works better with agressive cancers -- but with slow-growing tumors (low oncotyoe) chemo can actually cause more harm than good.
If your tumors were so small -- were they able to grade them? If so, then it seems odd they couldn't also oncotype them.
I have not heard of this situation before ... and (being a bit cynical myself) I kind of wonder if there might be another reason the oncotype test wasn't done -- like an error by the surgeon in not ordering it to be done... hey -- everyone is human and no one is perfect.
I would definitely get more opinions -- some women feel as EPH does (above - about throwing everything at 'the beast') but chemo is poison whose aim is to kill every new cell in your body -- cancer or healthy. It can have some very detrimental consequences... so there is no sense in rushing to take poision that will harm you -- unless its affects are considered to be beneficial.
Take your time and ask a lot of questions so that you feel comfortable with your decision.
You might start your own new thread asking the question -- because only Femara/Letrozole women will probably see your question here.
Best of luck
Linda
Best of luck
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Karen, I was node positive but had an oncotype score of 14, so didn't have either chemo or radiation. It's a tough decision to make, though, as on occasion (such as when I reacted EXTREMELY badly to tamoxifen) I wondered if I should have thrown more at the beast (as Eph says). But femara is treating me OK, and now I'm back to being thankful that I didn't take poison.
I'm with Linda that there might have been other reason(s) for not doing the scoring, but how small were your tumors, and how many did you have??
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Hi gardengumby, Linda, and everyone who replied to my post.
I had one ILC 1.8MM and two microinvasive ductal carcinoma (0.4mm and 0.5mm) which were adjacent to one another also DCIS low to intermediate grade and LCIS, focal. 100% strong for ER and PR. No other invasive cancer was found in my breast after the mastectomy.
My oncologist said very rare but sometimes there is not enough tissue for the OncotypeDX test; doesn't mean that the number would have been low; only there is not enough tissue. However, he did believe that the number would have been low given the properties of my tumors if the test could have been done.
I am now in the process of getting names of breast cancer oncologists for a seond (or third) opinion.
Thank you all very much.
Karen
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What did it receive for Grade though, Karen?
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Hi Galsal, I don't know the grade; how do I find this out? Thanks,
Karne
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Karen -- Did you get a copy of your pathology report? Your grade will be there -- as well as a lot of other good info.
BTW -- I ALWAYS get a copy of every report sent not only to my doc, but to ME. Sometimes it is amazingly hard to get them to give you your own information -- but I can be a pit-bull when I need to!
Linda
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Linda Ranching, I absolutely agree with you. When this whole fandango started, I created a binder with dividers--path reports, labs, procedures, drugs, etc. EVERY TIME something is labbed, scanned, prescribed, operated on, or sliced up and studied, I get a copy of the report. If it's imaging, I get a disc of the MRI, mammogram, CT scan, whatever. It all goes into my binder.
I can't tell you how many times, with all the damn physicians I've consulted over the last 1 1/2 years, this has saved me time, money, and frustration. I'm not crazy about all this being on-line and having every physician, PA, nurse, and dog-catcher in the world allowed access to it, but I can be the keeper of my story and share as necessary.
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I've been on femara for 5 mths and besides the ridiculous joint pain, I'm noticing my hair thinning radically and my scalp feels like that chemo thing before your hair falls out - are we talking major hair loss here folks or thinning ( neither of which is appealing).
Kathryn
PS I'm taking this for a metastatic recurrence (12 yrs after initial dx - are you friggin kidding me!?). Most of the posts seem to be from people are using it as a preventative thing. Sorry, I'm new to all this - is it used for both?0 -
Ktm -- either way the goal is to flood the system with fake estrogen that attaches to the cancer ER/PR receptors, providing those pesky cancer cells with nothing real to feed on.
I started Letrozole just over 2 months ago -- still no SE's -- and my bloodwork came back with everything still solidly in the normal ranges -- so I can't help but wonder if some of that is the supplements I take. Could the 3 glucosomine per day be way-laying joint pain? Maybe... and I am also taking "Green Food" (containing concentrated brussel sprouts brocolli powders) and "Super Green Algae" three times a day... as well as extra vit D3 and E and wonderful all-natural full-range vitamins (from Melaleucca -- which takes great pains to balance/pair vit/min in ways for best absorption -- and not 'over' dose what can't be absorbed).
My next blood work will be in March ... keeping my fingers crossed.
Ktm - are you taking any supplements to help balance the Femara/Letrolze SEs?
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Hi Kathryn....many women have an issue with thinning hair , myself included. I started
Losing from the get go. It's been almost a year now and my hair has started to grow back slowly, but the texture is very bad....like straw...I take biotin and it helps somewhat.0 -
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Day, I just started using organic Argan Oil last night, funny you should mention that...lol
I will look into the shampoo and conditioner...is it organic? I have become a little anal
since my BC dx.0 -
PS Day....your hair looks amazing!!!!
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ktml- I didn't have any hairloss until around month 2. Since then it's been a gradual hairloss and it sucks kinda. I have real thick hair and always had to get it thinned when I got my hair cut. Now I pretty much wash/brush my hair and it's falling out.
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Kim, I also have metastatic disease and have been treated for the last two years with Femara. It is keeping me stable which is a good thing. I had a lot of hair loss which has now pretty much stopped but I still have the sore/sensitive scalp just as you describe. My hair didn't grow much for ages either but has of late begun to grow again but it is slow........it's also very fine and a lot thinner than it used to be but there is still more than enough to fluff up with some product and a hair dryer when the occasion calls for it.
Hope you do well on it.
Love n hugs. Chrissy0 -
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Day, thank you very much....sounds good!!!
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I just completed a year on letrozole. About 3 months into it, I started having joint pain, which was usually relieved with naproxen. I have to say that at this point, I'm having much less pain. I had really thick hair before chemo, but now it's considerably thinner. I'm hopeful that it will start growing again as some of you have indicated.
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Anyone else have their alkaline phosphotase go up while on femara? How about urea?
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Day, crap! I was afraid that might be what it meant. How high was yours, if you don't mind?
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I just completed my 5 years of Femarra. I experience hair thinning over a period of time so it is difficult to say when it really started. However, after about 2 1/2 or a maybe a little more, I experienced problems with joints and bone density. I sometimes feel a little tired other than that no other major effects.
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Bjcm, you say "completed" so that means your doctor isn't pushing for an extension on your consumption of the Rx? Congratulations. I hope that your aches & pain & tiredness will begin to go away now.
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Hi everyone - I was originally on Tamoxifin but then had a hysterectomy in May of 2012 and then was put on Femara. I still have joint pain and horrible hot flashes - I am on high dose of effexor and just recently started taking vitamin D3, fish oil and the Melaleuca vitamins which are helping me feel better - My question is for people that have been on Femara for awhile - when do you feel the SEs get better - after a year, 2years? Thanks!
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Sheribell- I had minor joint pains for a couple of months, then I had another surgery TE placement and was placed on Levaquin and that started up major joint pains for 2 months. I guess something between the two causes major issues. Since getting off the Levaquin I have not had any issues, plus I take 2 glucosamine pills a day to help prevent joint pain as well as advil.
Bjcm- Congrats on completing your 5 years. In may will be my 1 yr anniversary on it.
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Hi Chrisrenee - thanks for the info - do you think the glucosamine is making a difference? That is one thing I am actually NOT taking as of yet - I take a handful of supplements everyday!
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Sheribell- I think it is a combination of the Glucosamine and the advil. One of the things my Onc told me was that Femara actually dries out the fluid from your joints, and that taking glucosamine helps keep the fluid in the joints. The advil helps keep the inflammation down. Now when my PCP or PS wants to give me Levaquin (which also sucks out the fluid from the joints) I request amoxicillan, or bactrim or both. Before diagnosis I only took 3 pills, 1. hormones 2. sleeping pill 3. multivitamin. Now I take 1. sleeping pill 2. multivitamin 3. Effexor 4. glucosamine 5. calcium 6. advil 7. Femara. I am about sick of medication. Hope that helps you Sheribell, if you need anything let me know.
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