TRIPLE POSITIVE GROUP

goutlaw I was diagnosed with low D several months before the breast cancer diagnosis. I was in the single digits. I was on prescription for a while now just OTC. My onc checked me again before chemo. I was 79! (High normal is 70). You don't want low D when doing chemo. I'm still taking extra D.

LeeA My ear was drained by the ENT guy. Pathology showed all B9. Never came back. The bill is another story! OMG. I have a high deducible so this was at least a $1600 ear with all the doctors visits, clinic charge, pathology charge. I'm not happy about that.

Welcome back LeeA! Sorry to hear about your DH. Sucks. I remember getting my termination letter the week of my last tch. Really sucks. I hope things work out for your retirement.

Goutlaw, I take 4000 units of D a day and my last D was only 34. Just barely over lowest normal range.

Chickadee, sorry I didn't know you'd been out of work, but I am sorry about that.

Much love to all.

I wonder if I should b higher then 2000 a day? Well I can pick up extra vitamin D over the counter! My doctor is getting on my nerves...I had to ask for that test!



Then my oncologist said they put up the lab values and need to put them back down...so now everyone is low ...well they put up the values for a reason...I'm just getting mad....its just bad....I was in the office not even a minute the other day and she was done with me. Guess she didn't care she gets salary

Just mad I have to ask for tests and if it wasn't for this forum...O would of never known or got checked....now she better check me every 3 months with other blood work. I'm gonna remind her.

Hi goutlaw, my oncologist tested my D levels on the very first visit (37 and that was after 9 days in Kauai in the sun all day long plus we live in California).

He had me meet with the integrative physician at the Disney Cancer Center (he's the director) and she said I should be taking more than 2000 IU daily.  She says 5000 is the max but I know people who take much more than that (note: I'm not recommending you do that).  I take 5000 IU daily but something to consider:  some of these Vitamin D capsules have soybean oil in them which probably isn't good for those of us who are triple positive (or anyone who is ER+). 

Hi, I am "new" to this group, unfortunately this is my second diagnosis. In Dec 2010 had left mastectomy for multi focal DCIS, 2mm of invasion. ER- PR+ HER2-. No chemo, no rads.

JUMP to June 2013, felt smal pea sized lump in upper left quadrant, just outside implant area.

6mm ER+<PR+<HER2++.  Some confusion as to if this is a new primary or lymph tissue.

In shock. Now being advised, chemo, Herceptin, Rads, surgery, AI( you name it and they want ot give to me..) I live in Maine, care is good but I have a sister in Chicago and she is urging me to get a second opinion and consider getting treatment in Chicago.

My questions: Any advice or experince with care in the Chicago area? Considering forgoing chemo and going to rads, surgery, herceptin and AI?

Any advice, experiences etc..?

Thank you all, this forum has been a Godsend as I stalked it anxiously through sleepless nights...finally decided to post and join the fray:)

Welcome oconnor2450,

Too bad we meet this way...

Imho, a second opinion especially since this your second go round is a really good idea.

Boston has some of the best cancer facilities in the world ..including Dana Farber for your second opinion consult if you want to stay closer to home.

Once you've established the course of your treatment, however, again imo..most cancer facilities are so familiar with these protocols that you can get the treatments close to home.

I live near Memorial Sloan Kettering and could have done my treatments there but I liked the idea that the staff actually recognized me when I walked in that door.for care.

LeeA - Glad to see you back but sorry about the reasons you have been absent.  I can vouch for the fact that Florida has some cheap real estate if you have thought of relocating here - also, no state income tax, but property tax and sales tax are a bit high to compensate.

goutlaw - my onc did not test my D level until chemo was finished, but I did not have to ask for it, it is just his protocal to wait until after chemo.  Many oncs will not prescribe metformin (including mine, I asked) because it is still in trials for cancer recurrence purposes.  I know a lot of people have gotten it from their primary care docs because they prescribe it far more frequently for its traditional use.

Criminy, for some reason the motel I'm in keeps trying to block this site...

rozem,

Going back to your comment on the previous page.... it is difficult to apply the many differences in diagnosis all at the same time when considering the risks, but my response to your comment about recurrence among HER2's is both yes and no.

The problem with that (I think) is that the recurrence rate is higher for HER2's but most her HER2's are HR negative, so the recurrence IS higher early on and not later, but not for HR positive HER2's. So applying chemo to catch the early recurrences makes sense for HR negatives but not for HER2 positives who are also HR positives.

And yes -- it is not just tamoxifen but menopause that changes breast density by getting rid of the support tissue and replacing it with fatty tissue, which reduces the breast density. I was pre or perimenopausal at dx and after tx with chemo and after tx with rads at age 52, and put on tamoxifen because of that. The tamoxifen removed my breast density and my gender, and reduced my risk.

A.A.

Oconnor..



I was one of the fortunate ones for whom chemo and herceptin were not nearly as bad as anticipated. Was it easy? No way but very manageable . I had many of the side effects except the one I personally feared most...nausea.....but I got though it as we all do. In this forum you will meet ladies who have had all the traditional complications and side effects to the max ..and are here to tell you and guide you.

I think I can safely say that the noticeable side effects of herceptin are relatively minor. I had a constant runny nose and regular minor nosebleeds. I ran into a problem once when they ran my infusion over one half hour instead of the 1 1/4 usual but that seems to be a rarity. There are, however, several women who have had loss of cardiac function as a result of
herceptin. Several of them had to discontinue treatment altogether and others take a break until
their EF...ejection fraction is the problem... Improves.

Hi Camille...



Welcome home....:)

Yes trying to fight this...Been going to gym everyday including intense classes such as zumba, hula hooping, tonight going to boot camp and did core or more... Man I am really out of shape lol...Now I'm happy got vitamin D lool...trying to eat right now and lose weight

Welcome Miss Oconnor.....these women  here are amazing!

Miss Ashla...your links always rock!

Bren u'r doing Ok now. Right. U always sund so good. It's hard to tell.

I have my new surgeon's app't Aug 12th---and I told my primary that the County Coronor gave me his name (I know how stupid this sounds) but I was glad she uses him--she was off today but called back so that was nice. It's good tho cuz these compters are filled with all the info they need, even the actual pics of scan. OK u know I'm not a computer person so let me be awed by technology--I'm old. I told the gorl making my app't I have no boobs, no female parts and now my liver wants to move out-I need my liver--so that's my story and I won't talk about it again til I know what I'm talking about--could be never.

Question....lately I have been over obsessing about "mets"....how do you know when you get/have them?

 Does your Onc routinely scan. ?.should you ask for scans?  Any words of wisdom?

Oconnor2450 I don't post often on this thread because there are so many women here with much more knowledge and wisdom than I. However I'll give my two cents on your question of where to have treatment. I too have a sister (in N C) who initially suggested I come out there for treatment, citing her connections with too notch medical centers. I opted to stay in CA where I know my team and more importantly have a good social network. I didn't have to have chemo/rads/herceptin (at least not yet!). DEFINITELY get a second, and maybe third opinion re treatment options. You'll know where you feel more comfortable. Consider your relationship with your sister (good AND challenging) and consider your other social relationships. I don't know what I'd do without my local girlfriends!