CALLING ALL STAGE I SISTERS

Teal3Pink1

Is anyone else on 50,000 units of vitamin D? I just got a prescription in the mail from my med onc's office for weekly vitamin D-2 capsules for 8 weeks and then every other week. I thought this was one of the ones to avoid while on radiation. I have my first appt w/RO on 2/28. I'm confused. 

I'm also sad because I don't qualify for the partial breast irradiation study at my hospital because of focal lymphovascular invasion. I was hoping to get things done quickly. Oh well.  

sheila888

(((3JaysMom)))  So very happy for the wonderful news.♥

annettek

hi slinky- yep, you need the oncotype test...am surprised they are not asking you to take tamox (assuming you are pre menapausal) or an AI if post...mine was very early too with BMX and they are beating me over the head to take an AI to beat back the estrogen. My onco score was a 6 and tumor was 5 mm. You just want to be informed so you canmake the right decision.

Good luck and welcome (although I wish you didn't have to join us:(

annettek

i am teal 50,000 units 2x week until my levels are boosted back up..my D was at 18 they want it higher. Are you sure it is not D3 they want you on? That is what I am taking.

sheila888

http://www.aphroditewomenshealth.com/news/20030509002215_health_news.shtml

Teal check this out.

Is it Vitamin D or VD3?

Nicole112

Hi Slinky, 

Another great question to ask or read on your path report is about LVI (lymphatic vascular invasion)... I had this and this is another factor in how aggressive to treat the cancer.

Any questions you have, ask the ladies, they are great resources... better than the doctors sometimes!!!

Nicole

o2bhealthy

I take 10,000 UI of D3 daily (skipping weekends)  My Vit D level was 24 at dx, it took a year to get to 33.4, another 4 months and I was at 42.6.  My onc then told me to cut back to 5,000 UI and 4 months later I had dropped down to 33.2.   I remember reading several times that Vit D levels should be 75 -100 for post BC ladies so I went back to 10,000 UI's. 

Edited to add:  There are a couple of good threads regarding Vit D on the Alternative forum

Teal3Pink1

AnnetteK, Sheila, O2B, 

Thanks for the info on Vit D. I don't feel so "defective" now, especially if this is going to help the rads work. My Vit D is 19 right now. In late 2009, it was 10 and I took 1000 units of Vit D-2 daily, which got me back to the normal range in 6 months and I was told by primary care doctor that I could discontinue. 50,000 units seems like sooooo much!

The prescription is for ergocalciferol (vitamin D-2). I will check out the Vit D threads on the alternative forum! Thanks so much!

Teal3Pink1

Nicole112,

I got mixed concern over focal LVI. I heard that some doctors treat LVI like a positive node and others ignore it. The three med oncs I saw last week didn't consider the LVI when recommending treatment plans. And yet I was disqualified from a radiation clinical trial because of the LVI. Sigh.

Ladies, Did you have LVI?  What did your doctors saying about LVI?

Thanks! 

jo1955

Teal - I don't want to sound stupid,but what is LVI?

sheila888

Teal--The same here I know what it means but I dont understand it.

And one more thing none of my DR's talked to me about this.

Do you have to ask?

o2bhealthy

LVI (lymphatic vascular invasion)  means that there was a blood and/or lymphatic supply to your tumor. So basically cancer cells had the ability to travel through those blood/lymphatic vessels.  However being node negative is great news.  If you were node + then there would be more cause for concern.  Hope that helps!

jo1955

o2healthy - Thanks for the explanation.  Guess I did not have to worry about that - I was node negative.

catbill

Hi slinky,

My tumor was 9mm after biopsy and 1.2 cm after BMX.  I was a stage 1, also ER+ PR+ and I am on Arimidex, but had no other treatment other than surgery. ( I'm a grade 1 as well with an oncotype of 8.)  I was very happy about no other treatment , but sometimes I worry that I didn't do enough treatment.  I guess I have to believe my onc.

samsue

Thanks O2bhealthy... I didn't understand that either. I don't think the BS said anything about that in my pathology report. It's always good to know as much as possible about this confusing and changing BC information.

sheila888

oakley

Sheila - I finally watched last week's AI.  I didn't realize Hollywood Week started on Thurs.  I seem to always be able to tell who is going to continue on...basically because of the sob stories (which most of them are just so sad!) they tell.  I still love watching though!

Good morning! 

annettek

Teal- just make sure to ask why you aren't getting the D3 since that is pretty standard nowadays...

Seyla- beautiful picture--thanks:)

Catbill- may I ask how you are doing on the Arimidex? You and I are pretty close in DX and treatment...I just have not started the Arimidex or Femara (hahaha, I am collecting AIs..) instead choosing to try the DIM, grapeseed extract , etc. But of course I am nervous about this. I know it only pumps up my chance of recurrence to 10% from the 5% with treatment, and the alternatives I am taking are giving me similar SEs that others report on AIs..(hot flashes back, fighting the weight, etc)...but I just wonder if I am being a total idiot not trying them. I just wanted to beon something I could take the rest of my life. So, any honest feedback would be appreciated as I mull my decision. Still waiting on my estrogen test results which should be back this week (they take a week or 10 days to get a result on estrogen). My progesterone is dead low at .3 and I need the estrogenlevel to help make my decision. Thanks-this is really driving me crazy. I am excited to go to MD Anderson this Tuesday and find out if I am accepted into their clinical trial for stopping smoking- it is intense and I need intense to finally quit...they will monitor and counsel and poke and prod for 13 months-which is unbelievable support-they really wan tthe trial to be successful...I figure even if I get the placebo the ancillary care will really help. Thank you all for being here...miss smartypants me is freaking scared

Teal3Pink1

Annettek:  Thanks! I will definitely ask about D-3 tomorrow. I go to a major cancer center and D-2 seems standard for them b/c these instructions are on a form letter. Yesterday I asked my FIL who is a retired radiologist and takes vit D. He said that although D-3 is closer to what happens in our bodies, both D-2 and D-3 will get the job done to raise our levels and D-2 is available in a larger dose. Even so, I think I would prefer D-3 and I'm calling the office tomorrow. 

Kymn

otobehealthy I have LVI but am node negative so does this mean that the cancer did not spread anywhere else? thank you for your explanation on it my doc tried to explain it to me and it didnt make any sense at all. Mabye they should read these posts and see how to talk to us lol.

sheila888

Kymn....Sometimes DR's get uneasy if we know too much.

Since i joined BCO I learned so much.

Yes We get great info here and we understand better than the DR's explanation.

Have a good day Sisters

Peace

Hugs

Valgirl

AnnetteK - We have similar diagnosis except I opted for lumpectomy and radiation.  I started Arimidex on 1/1/11 and have no problems so far.  I met with a nauropath who helped me with my supplements and diet.   I always tried to eat a healthy diet but doing more now such as eating as much organic as I can etc.   I wish you the best of luck on getting into the trial to stop smoking.

annettek

thank you so much Valgirl...i appreciate the input a lot. I can't have much estrogen left on the regimen I am on but, it seems dumb to me not to try it. As my husband said this morning, if it is wrong, you will know soon enough. He is right. Anyway, thanks I have a lot to think about....I am oddly excited as I have NEVER wanted to quit smoking for real before. First time I want to quit. So , I think I will. With a lot of help:)

lestwin

annettek:  You can do it.  I quit smoking "cold turkey" after many, many years of smoking and just before knee surgery that morning, I sat outside and said, d--m, I won't be able to smoke for 3 or 4 days and I'm going under for surgery, what the hell am I doing!  I decided right there and then to take it one day at a time (quit smoking) and I have never looked back.  I even kept a new pack in the cupboard (just in case).  I threw them out after about 5 years.  It's been 18 years now and smoke really makes me nauseated.  YOUR CAN DO IT.

annettek

Thanks Letwin I have changed my avatar to what I don't wanna be:)

oakley

lestwin - congrats on that huge accomplishment of quitting smoking.  What kind of surgery did you have on your knee?  I tore my ACL last February and had reconstruction in May - I am still not healed and it's very frustrating.

annettek - you go girl!  That woman is HORRID in the picture! 

BarbaraA

Annette, you can quit. I did and you need to head over to the stop smoking thread. Great tips and help there.

Eph3_12

I quit after 40 years of Marlboro reds on Jan 2 '09.  3 months later, to the day, I got my BC dx-I came very close to starting back up & have had moments since but as of today-2 years, 1 month & 11 days clean!  Yay! 

sheila888

annette.....I dont know what to say except im happy for you and Good Luck in this journey.

I never smoked. I eat

HUGS♥

deborye