TRIPLE POSITIVE GROUP

what does AL stand for and what are some of the OS drugs ?

Healthet - AI are the aromatase inhibitors which is a class of drugs hormone positive post menopausal women take (tamoxifen can be taken by pre or post menopausal but generally if you are post meno an AI is prescribed unless you cant tolerate it)

OS or ovarian suppression drugs are Zoladex or Lupron - given by injection, they shut down ovarian function and put you in to "chemical" menopause

thank you for the response Tresjoli2 - I know that OS plus tam is more effective than tam alone but my onc is really trying to get me on to an AI - last try I had vertigo and horrible joint pain

Rozem: I'm in the opposite situation. I just finished five years of Arimidex and supposed to switch to Tamoxifen. I've been putting off the switch though. I'm one week with nothing and feel so great. Talking to my onco next week. It seems keeping you on the same drug is not as effective but I know quite a few ladies on Arimidex stay on it for the entire 10 years but according to my oncologist, the studies have been with five years on one and five on another.

rozem It really depends. I'm premenopausal, and currently on ovarian suppression (Lupron) + Letrozole. Frankly I don't feel like having a Lupron shot every month for the next 5-10 years, there's no need for more drugs than necessary, so I am going to get my ovaries removed. Plus I've had my kids.

I really think it depends on your lifestage, your diagnosis and how you want to manage your care. There are different drugs and different combinations to try. My oncologist shared the SOFT study with me and so this is how I'm proceeding. But a second opinion is always a great idea!

thank you for the reply Ang. I emailed my second opinion doc. I'm done with my family ( long time ago!) but am reluctant because I know ovaries do s lot from protecting your bones, heart health-I have done probably 3 years on OS and never felt good.

My ONC will keep monitoring me beyond 5 years which quite frankly not sure why. No blood work questions about hormone therapy but unless something changes it been the same conversation last 3 visits! I think because many of us will be on hormone therapy past 5 years we are technically in treatment

what is the SOFT study? My breast surgeon recommended I remove my ovaries and my MO said we'll have that conversation when chemo is done. Not sure I want another surgery but I'm 90% ER + and I want to reduce my risk of recurrence.

Rozem, I asked my MO if there would ever be a time when it would be safe to have estrogen circulating through my body. Her answer was NO. I ended up having an ooph last September. Part of the reasoning for the ooph was because my mom had ovarian cancer at 18. The other was because I'm 90% ER/PR+. My period came back four months after chemo ended. That told me it would probably be a while before I'd go through natural menopause (41 at diagnosis). It was a tough decision due to the protective benefit of the ovaries. BUT, I'd have to potentially go ten years with Zoladex shots. Not Fun! For you, I would think your recurrence risk dropped dramatically when you hit your five years. I know there's still a risk down the road but it's definitely the highest in the first five years.

4% doesn't seem like a lot now but it sure did when I was first diagnosed.

Heathet, Rozem is right. Depending on your age, chemo may have pushed you into permanent menopause. It will take a while to know for sure but it does happen.

My MO at Dana-Farber told me every single percentage point counts in BC, so there's that. I don't want any regrets either. I'll still schedule the oophorectomy, but frankly after this past year I really don't feel like another medical procedure. The letrozole is already kicking my ass, and I don't know if the pain in my shoulder is from chemo, radiation or the letrozole. Hoping PT will offer some relief!

rozem - I'm giving letrozole a fair shake, hoping after a few months I'll either get used to the aches or they'll just normalize a bit. I do find that the more I move the better off I feel. I'm not exercising nearly as much as I used to, but I get my 12k steps in a day, or close to it anyway! Once the kids' football season is over I'll have more flexibility and get going again...

Amazing Denise...Congratulations!

Congrats, Ashla and Denise!!! Five years out! That's awesome.

Gosh, Ashla, I don't know if we'll go that route when/if I have osteoporosis. I do know that I was osteopenic when I began my AI..... Hopefully, someone else will chime in.

Denise-G - Congrats on your 5 year anniversary! I also had heart failure after only 7 infusions of herceptin (LVEF = 35 but now recovered), so reading your post gave me a warm fuzzy feeling. Now I know I can make it to 5 years also.

Thanks Zoziana! Will have a look. There aren't a lot of no brainer decisions with side effects of Breast cancer treatment. I was holding my own with the bones until I hit a wall with AI's at the 3 year mark.

Several ladies here( don't recall who) have done Prolia shots but my doctor wasn't enthusiastic. Didn't explain why. . Whe he saw the change to osteoporosis he immediately said bisphosphonates and I balked because everyone I know who tried them had trouble taking them orally or worse. One friend broke two different legs within 3 years.. Clean breaks!

The MO was pretty confident that infusions were the way to go and I shouldn't wait. I need clearance from my dentist because of the jaw necrosis.

My MO was also enthusiastic about the data showing bisphosphonates had a bonus of lower recurrence.

I'll let you all know what happens.

Glad I could help Ashla!. This post is also questions about tamo versus AI drugs, and AI drug side effects and management via complementary methods. I had a wham-bam rather unpleasant first month starting generic Femara.

I have some questions for any who know, and also would like advice on what to ask my MO next week about side effect managment and the differences in risk reduction between Femara and tamo, (I listed my quests. below) and also on what to expect with side effects for me personally. If anyone has any insights, I would appreciate it. Posting this in the Femara and Triple Positive forums.

If you start out the gate with lots and lots of serious joint pain (head to toe), does it go away later? Did anyone try acupuncture? I know my med center has a clinical study going for acupuncture and AI joint pain but I don't know if I will qualify, etc. Also, I want something that works, not a placebo!

I started Femara (a generic though) Sept. 8, and within 2 weeks,day by day, with things getting progressively worse, I had serious joint pain in all joints from toes, ankles, knees, hips, hands , fingers etc. Stiffness was bad in the morning. I also had a terrible headache and muscle pain. I had started back to hiking and was going to yoga, but the pain was so bad I really didn't feel like going at all--and walking and hiking are favorite activities of mine! I also felt lethargic and had no energy, and my cognition seemed sluggish.But, I was also dealing with a long-term sinus infection, so it is hard to sort.

At 4 weeks on Femara I was taken off because of the persistent sinus infection (since June, when on chemo!) that I can't get rid of, and I'd at the 2 week Femara point I had also been put on a different, very broad spectrum strong antibiotic and they wanted to just give my body a rest and try to sort out what was happening. But, given that the joint aches started before the strong antibiotic( I only had that one during the last 2 weeks of the Femara), I am confident it was the Femara. Hot flashes were also intense--at least once an hour, 24-7 . And, within days of stopping Femara, the joint aches all went away; by a week out off Femara, they are gone completely. The sinus infection is still present, though improving I think. My headache is still present but a lot better; I think I had "two" headaches: the one I've had from teh sinus infection for some time, and a "Femara" headache on top of it.

I am wondering if switching to Tamo is a better choice for me. I'm talking to my MO next week. My doctor doesn't switch better AI drugs, just classes of estrogen blockers. I do have genes which promote growth for colon, head and neck and breast cancer, and I've had colon polyps on 2 occasions and a parotid gland pre-cancerous tumour and of course BC, so the genes are active in me and despite a healthy lifestyle (other than extreme stress at times, which I am working on to learn to manage better), I apparently am a growthy person. Also have an IGF growth factor gene so am now eating vegan. I am not sure how much my MO is weighing these genes, as I tested privately for them . But I will present them in writing to her. It just hasn't been front and foremost to date. I want the AI or tamo drugs, but also want a drug that I can sustain.

These are my questions (for my MO and/or if any of you know). Are there are others I should ask? If anyone knows, I would appreciate help. Or, if there is another better forum in which I should post?

1) What is recurrence risk for HER 2+ women without metastatic disease without use of hormone blockers? 2) What is difference of my overall risk of recurrence, of Tamo versus an AI? 3) What is risk of uterine etc cancer due to Tamo in post-menopausal women? (I have an ovarian cyst and one ovary removed years ago.) 4) What complementary treatments have helped people, besides keeping up exercise? Acupuncture? Supplements ? (if so, which ones--I don't know if she will know, and I already use B vitamins, D, K, alpho lipoic, co-Q-10, zinc, green tea, vit C, Omega 3); meditation and yoga (doing that already). I have CBD oil I was using during chemo and am not averse to using that if it would help manage SEs.

rozem and fighter girl just to provide an alternate viewpoint, my GYN and my OB refused to even discuss having my ovaries out. They said there were way too many benefits for keeping them in. I am on Lupron to suppress them, I get a shot every three months. Then I take tamox.

In other news, the lump in my contralatersl arm looks like a sebaceous cyst and getting smaller. So that is good news!