TRIPLE POSITIVE GROUP

chrissie29

Lago The liquid is better than the foam? Is that what you get? Thanks for the info.

ArleneA

Since we are talking about Aromotase inhibitors, I am due to begin my switch from Arimidex (5 years) to Tamoxifen. Of course, I read the literature on Tamoxifen and my gynecologist mentioned it too, which shows a side effect can be uterine cancer which scares me a bit since I just had a scare with thickening of my uterine. The biopsy was negative but it's scary. Seeing my oncologist next week to discuss again.

Congrats to those who have finished their 5 years.

Tresjoli2

so my MO does not think it's cancer in my armpit. Yay! She thinks it's a cyst. She says that when I have my MRI in October, they will be imaging that area anyway, and felt it was just fine to wait til then. Works for me! I just wish the darn thing, what ever it is, would heal!!!

KateB79

Great news, Tresjoli!

ElaineTherese

Wow, Tresjoli! That's awesome!

rozem

hi ladies

I had a question for all you triple positives on tamox vs an AI - I'm done my five of tamox and I know I need to do another 5 of some sort of hormone therapy. I'm back on Ovarian suppression because my periods came back after a 2 year hiatus (yes they are stubborn) -

if feel like everyone who is high risk has moved to an AI - (high risk being defined as needing chemo) I tried 2 types and both were horrible

my question is 1) is your doc comfortable leaving you on tamox if you are pre-menopausal with or without ovarian suppression 2) have you been advised to start OS + AI 2) what was your experience with SE if you moved from tam to an AI 3) ArleneA you said your MO said it was better to do 5 of one 5 of the other - I am wondering if the order matters?

I'm so confused - if I need to switch to and AI I will remove my ovaries at this point since I am obviously no where near menopause even at almost 48 -

Is it ever ok to have these puppies functioning again? even at levels that are not high enough for a period? does it work that way?

Heathet

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

Tresjoli2

rozem I am on OS and tamoxifen. It's only been a year for me...so I can't answer the five year question, but my doc thought tamoxifen was working so why mess with an AI.

rozem

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

Musosgirl

My Onc wanted to do OS for 10 years and I was not okay with that. It sounds drastic but I opted for a total hysterectomy. Good thing because I need to be on Paxil (tried Effexor with Tamox and that ended poorly), so I start my AI tomorrow. Overall my risk of recurrence is very low now and no worries about ovarian or uterine or cervical cancer. I'll try for the 10 years--go as long as I can

ArleneA

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

quick update...I went to see my onc yesterday, she is encouraging me to remove my ovaries since it is her opinion that having too much estrogen is never a good idea for us ER positive ladies...sigh

I am going to get a second opinion

fightergirl711

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!

ang7894

For the woman 5 years out or longer when do you stop seeing your oncology doctor ? I just stopped on my own and had my family doctor do my blood work once a year and breast exam once a year and calls for my once a year mammogram now. I found out that my family doctor does blood work every year and looks for the same thing as my Oncology doctor did. And finding out it's costing me much less then going through the Oncology doc.

rozem

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

Anonymous

I plan to see my onc as long as he will have me. Not because I think I need to but it just feels like a safety net

Heathet

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

Heathet - your MO probably wants to wait until after chemo as it may push you in to menopause and therefore removal or shut down is not necessary

SOFT does show about 4% survival difference between Tam + OS vs AI +OS (this being more effective)

my issue is that these studies followed women in their first 5 years after treatment - I'm 5 years out and not sure how these stats apply to me but my MO said it will never be a good idea for me to have estrogen circulating

Mommato3

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.

rozem

thanks Mommato. With your family history you absolutely made the right decision!!!

4% is a big deal -the reason I tried an AI but they were horrible. I am going to try again because I know that it's better to be on one plus I would like to finish my next five years on an AI not 10 years in tam

My doc said he younger patients have the most difficult time with this... No kidding!!!!

fightergirl711

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

fightergirl - I would suspect that rads is the culprit...lots of damage/scar tissue messes with the shoulder. The key is to keep breaking down the scar tissue

I tried Femara as well and it totally kicked my butt!!!! I hope that my SE are better second time around

fightergirl711

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...

Denise-G

FIVE years ago today, my family physician and long-time friend called and told me I had breast cancer.  It was also a Monday and Columbus Day that year! 

I am so grateful to be alive and thriving.  Was only able to have THREE months of Herceptin because of heart damage, but I am here.

I stand amazed and thankful for all of you that supported me through the years!

rozem

Amazing Denise...Congratulations!

ashla

Denise-G

Congratulations on your milestone! Now let's Keep them coming year after year.

Me too this week is 5 years for me too:)

Question: anyone do the Reclast infusions (zoledronic acid..bisphosphonates) for bone loss. Just had my 5 year bone density and I now have osteoporosis.My new MO was in a big rush( not pleased) so I don't really understand how bad it is but 2 years ago I was osteopenic and holding my own from the start of treatments.

Risk of jaw necrosis?

Advice?

ElaineTherese

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.

ashla

ElaineThere

I'm older than you so the whole bone density issue has been a big topic with my friends even without the added risk posed by Breast cancer treatments.

By the time it may be an issue for you the protocols will likely be different but the thinking and research suggests that breaking a hip can be a very deadly foreshadowing . I've seen it personally in my family. It's almost inevitably the start of a downhill spiral.

Blownaway

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.

Zoziana

Ashla--Check the AI drugs thread. There is one there Bone Loss--maybe "Anastrole and Bone Loss" or something. I am in my late fifties, and only started treatment last winter, but was found to be osteopenic so zoledronic acid is the plan from the get go, for three years. I am still researching it and have many concerns, both because of the dangers of osteosporosis and because of the dangers of the side effects, which are very rare 1-2% usually is the number, but obviously severe. And given that I seem to get the most rare of rare side effects so far with cancer drugs, antibiotics, etc. I am worried. I hope this helps. As a plus, it is known to help prevent bone mets especially for HER2+ folks, so there is that.