Her2+ women

Anonymous

Helloo ladies

I am almost 3 yrs from dx and tho it does not say on the diagnosis here I am triple positive Her2, weakly ER+ and PR-. Anyone else with this same dx?

 I'm on Vancouver Island, new to the area.

Nice to know there is a forum here for Canadians! Awesome.

Dianne

rackie

hi dianne.

 i am the same.  i was diagnosed last june.  i am her2+, er+ and pr-.  i am on tamoxifen and herceptin.  how are you keeping?  i live in toronto.

jackie

Slainte

Hi, not triple positive, but I'm not sure there are enough canadains on this thread for a er-her2+ group lol. I am on herceptin until end of Nov. No tomoxifen as Er neg. I live 50 I'm outside Calgary



Christine

lago

I'm not Canadian but I'm HER2+ 30%ER & 5%PR. (Onc says I'm PR+ but my BS said I was PR-) Anyway I'm on Anastrozole for 5 years. I have 3 more Herceptin tx to go.

CoolBreeze

I'm HER2+, ER+ and PR-.  We are rare.  

Oops, I see this is for Canadians, sorry. 

Anonymous

I am keeping pretty well, thanks for asking Jackie. I have my 6 month check up in Sept. I opted not to take Tamoxifen or AI's because it was so little benefit, something like 4-6% and the se's weren't fun, so I quit taking them after a month or so. The naturopath I see has me on some supplements that are similar to older AI's w/o se's. I see you are in Toronto...a bit warm there eh?  We have rain rain rain on the west coast. 

Slainte, thanks for writing. Are we really a rare group? Yikes. How are you two doing with the herceptin?

 tuckertwo

Mantra

My sister was also recently diagnosed as Her2 +  ER + and PR -.  We have her first appointment with the oncologist on Wednesday so I'm not sure what her treatment plan will be.

marjie

Hi Ladies -

I'll join in...I'm ER/PR-, Her2+.  Finished chemo, rads and am now about half way or so through Herceptin (I lost count!!).  I'll be glad when I am done.

Anonymous

I heard that the newest thinking about taking lymphs out during surgery is don't do it. Too many complications from lymphadema. What have you ladies heard?

tuckertwo

lago

tuckertwo there was a recent study that seems to point in that direction but it's only for those with micromets in sentinal nodes and small tumors. This hasn't changed standard care yet but it does point in that direction for these cases: http://www.ncbi.nlm.nih.gov/pubmed/20566977

marjie

I had a sentinal node biopsy so there was no need to remove any more nodes and my chances of lymphedema are very slight. 

Anonymous

Thats a great way to go if you have a doctor who can do it. I would guess healing time is quick. Is it relatively painless?

 Also I am curious about the staging of your tumor. Mine was 2.1cm, no nodes, grade 3 yet my onc said stage IIb.

tuckertwo

lago

Tuckertwo I don't know why you're stage IIb but  here is some staging info that indicates you are stage IIa. http://www.cancer.gov/cancertopics/pdq/treatment/breast/Patient/page2 

marjie

Tuckertwo - yes, I don't understand the staging of yours.  It's pretty straight forward based on the pathology and size of your tumour.  Maybe just ask your onc next time you see him.

Anonymous

thanks, I'll do that. I guess it doesn't really matter....probably the fact that mine was 2.1 rather than 2 put me in another level.

tuckertwo

suemed8749

You're right - it probably doesn't matter - but mine was 2.2 cm (another was .7) and I was staged at 2a. We have really similar stats.

Sue

marjie

Mine was 4cm and I am a 2a.  If your tumour is 2cm but less than 5cm and there is no node involvement, thats 2a.  You'd be a 2b if you had lymph node involvement or if the tumour was bigger than 5cm.

But that being said - you're right, what does it really matter, as long as they caught it and we get the treatment we need!

Terry71

I'm er- pr- her2+. Started fec-d aug 4th 3 fec treatments then 3 docetaxol treatments herceptin for a year that starts with the docetaxol finished 2 rounds of fec so far.

Anonymous

Terry,

Thanks for posting, I don't get on here very much! How are you doing after your treatments in Sept.?

tuckertwo

shelloz1

Hi,

I live in Richmond Hill (Toronto area), just recently moved to Canada.

I had my lumpectomy 5 years ago tomorrow.

I just wanted to say hi and prayers to all the ladies.

Shelley

Anonymous

Congrats to you, Shelley!! Way to go!! Keep on keepin' on....

tuckertwo

Anonymous

How are the her2+ ladies doing? Anyone getting close to their five year mark?

tuckertwo

Caya

I am triple + and passed my 5 year mark in October 2011.

Recently diagnosed with osteoporosis (thanks Femara) - my onc. sent me to an endocronolgist who advised me to have an Aclasta infusion - good for the osteo and for preventing BC recurrence - a double whammy.  Had a wicked day after the infusion - chills, nausea, bone pain,headache - typical side effects.  Feeling better today.

Lilyn

Hi caya glad you are starting to feel better. you and I have a similar diagnosis. i had my last bone density done about two years ago. my oncologist at NYGH said I had osteopenia and to make sure I was taking the 1200 mg of calcium daily. sometimes i forget the second tablet in the p.m. I also take Femera. how much calcium were you taking when on Femera. i think I better get into my family doc and see when my last bone density was. congrats on your 5 year mark. that must feel amazing. i am now 3 years out  take care

Caya

Hi Lilyn

I was taking 1400 gm. of calcium daily - 400 in my multivitamin, and 2x 500 mg./day - but I also sometimes would forget to take that second pill. I do try to eat Greek yogurt - Liberte 0% fat - every day and/or low fat cottage cheese. Apparently it is very important to take calcium and Vitamin D after the Aclasta infusion - I have been taking 4500 U of Vitamin D3 for about 3 years now - my Vitamin D level is 101 - the endo. says you want it between 75 and 200.  I know mine was low before I started taking such a high dose, apparently very common for BC patients to have low levels of Vit. D at diagnosis.

 I had osteopania while on chemo/Herceptin, then had a bone density done exactly one year after starting the Femara - progression to osteoporosis.  It's always something. 

It's a big milestone to be 3 years out from Her2 BC, good for you Lilyn. 

lago

Caya I think your endo wants your d levels in that range because you have osteoporosis. I think for those who don't have it normal levels are between 40-70, at least the test they use on me. Mine was in the single digits before bc diagnosis. I got it up to around 40+. Then when I was found to be osteopenic I started taking calcium and it has some additional D. Last tested I was 79 and told that was high but OK. I also exercise daily.

5 month after being on Anstrozole (generic Arimidex) and 7 months PFC my bone density was tested again. It only went down 1/10 of a %  (.1%). So so far I'm OK.