TRIPLE POSITIVE GROUP

Thanks pbrain.  I do think my medical team is on top of it, BUT I also think they need a little prodding.  For instance, my vitamin D levels will come back at 30 and MO thinks that's fine, but I read other women whose oncologists want it to be a lot higher than that.  Also, he mentioned that I did look to be a bit anemic and was trying to figure out why.  Which I guess means he is watching....  My MCV's are so low that they are close to the bottom of the normal range, or at it.

Ok and back into semi-hypochondria mode (I say semi just b/c it's not totally irrational for any of us ... I definitely wasn't like this before!)  -- my dad had chronic lymphatic leukemia.  I should probably mention that to MO in case being a little anemic is any kind of precursor to that. 

PBrain it's about time drinking is good for something. Well my dad thought it was good for every and anything so he drank everyday (red wine)who could argue he lived to be 96 and died without pain and quickly.

Linda 505

We wanted to keep it a secret from you but PBrain blew it. That's what's gonna happen to your hair after chemo. Her propeller just fell off. 

#truth #not

Linda-I sent myself into a diagnosed and treated panic disorder when I was trying to decide what to do, the future, etc. Lost weight daily, couldn't eat, cried every time someone looked at me, heart palpitations, my normal blood pressure was high, etc. NP friend diagnosed and put me on Cymbalta and a low dose of bp meds. Helped immensely. I'm convinced the Cymbalta was what kept me from having much joint pain through chemo. But had to quit taking it when I started Tamoxifen.

Oh....my blog was called "What do you mean I have no control?" That was the hardest thing for me. 

To all....I had the BRCA gene test done and received a letter saying I did not have the gene. Short and to the point. Should I ask for a copy of something  that has further detail?

Cypher-I too tried to read into every little bloodwork test result. My NP friend and her doc husband told me the three to worry about and said as long as the rest are readonable no need to be concerned.

Still waiting on results from the PET scan. Forcing myself not to call. Test was last Wednesday, so hoping they will tell me something tomorrow. My vitamin D came back at 47 total (42 D2 and 6 D3). Doc said he tested it last September and it was 86. That seems an awfully big drop in a short period of time. I am thinking that 86 had to be wrong.

fluff - 86 would be a very high D3! Your more recent result is more likely to be accurate.

I believe we all have the BRCA gene, what we don't have is the mutation. Did your letter say something like "no mutation detected" - that is pretty average wording for a negative result. Mine was similar.

fluff - I have always been curious about what all the blood work is looking at.

Hi Pbrain,

thanks again.  Yes I'm not actually worried about the CLL since my dad had it for decades and it didn't actually kill him.  Just seemed to be something they had to keep an eye on. But I thought my levels might in some way be related to that, because these are low blood counts that existed in 2009 and now, but didn't really exist when you would think they would!  I didn't even take that neuprogen shot or whatever you call it. 

I also see that he tested my b12.  I was well within normal range.  I looked that up because I wasn't sure why he would be checking that.  I am well within normal range, however I have also been taking B12 vitamins so that's not surprising.  Looks like it could be related to megaloplastic anemia, whatever that is.

And yes SK, I just wonder what it is they are looking at! 

cypher - fluff and I are in the same clinical trial and they draw so much blood each time - I have wondered just what they are looking at. They don't tell us what the specific tests are. I pretty much know what my onc is looking at when I have blood drawn prior to my appts.

SK, if you understand that stuff you are way ahead of me!

Fluffqueen my D level was 79 after chemo. It's now 37. My PCP doesn't think that's a problem. I will discuss this with my onc to see what she things.

Eileenohio, thank you so much - I think you may be my newest hero!  I can't imagine going through this alone - you go girl!!.  I do have a great husband and daughter that have been nothing but supportive and I am just so grateful to have found the forum and all of you have been so great and helpful already.    Tomorrow at this time I will be at the hospital waiting for my surgery.  Trying to decide what kind of bye bye party I should have for the "girls" tonight 

Arlene, I always heard that if it was moveable that was a good sign.  Thanks for updating us and please keep us posted!

I don't contribute a lot. Mostly just a lurker that asks questions in a panic and gets great advice.

I just wanted to share with you all what you have helped me through and might not even have known. 

Friday Was My Last Chemo!!! Thanks so much for all the time and experience you give to this site everyday!

HaR!  Linda, you see something weird on my head?  Ashla is on the money!  Tee hee...

When I was diagnosed, my cousin in Scotland went scoping for hats for me.  She sent me two very lovely ones, wool, super cute tartans which I have worn to death.  And she sent me the one on my head.  She calls it "the daft hat".  I promised her a picture of me in the daft hat, so there it is.  You crack me up!

Fluff, your D is probably low because of where we live.  Most of the body's vitamin D is made in the skin from chlesterol-type molecules interacting with the sun's rays.  After this Winter, I'm surprised you have any at all!

Sprecial and Fluff, what I've seen with clinical trials for products that are going to the FDA is that they collect all sorts of data points in case they need them to explain an anomaly.  Sometimes FDA will clear your product and let you label around it like "don't use the drug in patients with a fasting triglyceride of 300 or greater".  The biostats guys need to come up with explanations, and those need to be made a priori.  Another thing...with the big NIH sponsored trials, they will sell the blood samples to companies like mine so we can develop and validate blood tests for BC.  Those sample banks can cost a serious amount of jack, throwing in more dollars for more research.

Yay JKOmaha!!!!  And I agree with lago about if that is a wig??  You look great.