FEMARA

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

Hi Galsal, I don't know the grade; how do I find this out?  Thanks,

Karne

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.

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?

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.

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.

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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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.

Anyone else have their alkaline phosphotase go up while on femara? How about urea?

Day, crap! I was afraid that might be what it meant. How high was yours, if you don't mind?

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.

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.

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.

Thanks Day, I would really appreciate that.