Anyone starting Chemo in August 07?

Oh, cool, DeAnn! I'm so happy you found a holistic doc. When is the appointment?

Alas, lilith. My husband tells me that beer is already being imported to the U.S.  You will have to find another good one for us! But we DO need to get to Italy sometime. It's high on the list of places I want to go!

My appointment is for Thursday next week. It's a very different paradigm than what we are used to! Insurance isn't involved unless I have labs done. At first I thought it seemed expensive, but then I realized, wait, $225 bucks is not bad. It cost me $375 for my BRCA gene test, and I paid over $1,000 this summer for an echocardiogram (these are all the parts insurance didn't pay for), so really it's a drop in the bucket all things considered. Especially since, at the first appointment they plan to spend 90 minutes talking with me and getting to know my health history and lifestyle. 90 minutes! The last time a doctor spent 90 minutes straight with me I was in surgery! 

I'll let you all know how it goes! 

Me too DeAnn!  BTW, I live in Atlanta now.

hugs all......

June

P S  June, you are in Atlanta??  Is this where you live??   I'm not thinking clearly tonight; I'm tired from the long drive up and back to my oncs.

Good night...

Nash,

Thanks!  Work was ok, I guess.  I had to go in early, and really wasn't in the mood for work.  I didn't sleep at all last night.  I guess I was all worked up from my onc appt.

I think you are right.  When I was going all the time, it was just the routine, I was used to it.  But now, every time I go, I get all tied up in knots, and trying to get my list of questions, since I won't see him again for 6 months. 

He said "you are anxious and worried, and you always have questions, so I'm ok with you coming in every 6 months."  I had asked him if I was going to have to return in 1 yr. or 6 months.  He didn't get it...  I was hoping for him to say...  once a year is enough... 

I came out with a script for Femara, so the next chapter of my breast cancer journey begins.  I will probably start Femara on Jan 1st, since I still have alot of Tamoxifen pills left.

So, you are getting Zometa?  I forget, are you taking a hormonal??  an AI??  My onc. didn't say that he recommends Zometa.  I guess he wants to wait til my DEXA scan results are in.  They want me to go next week, but I think I'm going to call and reschedule.  With Christmas coming up, and I was just up there, in Wilmington, so I am really not excited about driving all the way up there again next week.

The Christmas show sounds like a lot of fun!!  I LOVE QUEEN!!!  

Hugs to all,

Harley

Nash,

You are good with taking Tamoxifen for the entire 5 years, but I had to have a D & C for the uterine thickening and the uterine polyps I got from the Tamoxifen.

I have a script for Femara, but am afraid to get it filled...  Then I'll probably keep it in my night stand drawer, afraid to take it....

Can't wait to see your skating pics!!

Hugs

Harley

Ugh, Harley, I don't blame you for not wanting to take the AI.

The skating show was OK. There was barely any rehearsal time in the weeks leading up to it, and our group never actually skated the whole program through together with each other prior to the show, so considering that, we did pretty well. DH only took video, not still shots, and I can't get the video to load into a viewable format online for some reason. So, alas, nothing to put on FB.

There are two ice surfaces at the rink, and we were trying to run through the program together before the show over on public session, when a random teenager who was there skating took a major face plant and required paramedics. One of the girls in our number is an EMT, so she lept into action, and I had to race around the place in costume assisting her (getting the staff to stop selling tickets and call 911 on the land line b/c there was limited cell reception, getting her pen light to check dilation b/c of head injury, etc). So...not the warm-up we were looking for, but what are you going to do. Guess that's why I get such a rush from skating--it's basically really dangerous!

Finally got skating pics up on FB.

Off to the onc on Wednesday. DeAnn, good luck with your appointment on Thursday!

Nash - Sounds like the skating show had a lot of drama! I haven't checked out the pics yet on Facebook. I'll have to do that tonight. Hope your Zometa infusion went OK. 

I met with the holistic clinic today. I actually didn't meet with the main MD because he was booked out until February, but I met with the nurse practioner who specializes in women's hormones. It was so interesting! She spent 60 minutes with me today, but because of my cancer history, she wants to confer with the MD on Monday and then she'll spend the remaining 30 minutes with me on the phone going over his recommendations.

Here are some interesting things I learned:

Even though my vitamin D levels were "normal" at 41 she said they were low normal. My onc said normal was anything above 25, but at this clinic they say the research shows that 40 is the low side and since I had that level back in August after a summer of sunshine, she wants me to supplement with 5,000 IU every day! Wow! 

They want me to follow a "paleo" diet - which I'm mostly doing anyway, but good to know that I'm doing the right thing. Basically that means, mostly fruits and veggies, gluten-free grains, fish, only non grain fed meat (so grass-fed beef is OK, and naturally raised chickens, venison, that sort of thing). And I need to add Fish Oil and fresh ground flax seed. 

You need to eat about 13 servings of fruits and vegetables in a day in order to get enough of the minerals you need!  

She didn't put too much stock in the Dexascan that said I had osteopenia. Since I'm very small and always have been, she said the numbers they compare to are based on people who are quite a bit larger than me. My bones are for sure going to be less dense in comparison, but she said there are many things I can do to rebuild bone density with natural means. 

They are pretty anti-Tamox and anti AI.  (Also anti silicone implant. Oops!)  

Their role in functional medicine is to figure out what my deficiencies are that helped to contribute to me developing cancer in the first place and to give me proper dosages of the supplements that I need. They gave an example,that one person might only need to add 400 mg of vitamin C, but another person might be missing a certain gene that causes them to not metabolize something correctly, and they might need a megadose of 2,000 mg in order to get the same benefit.  Just like I can't metabolize Tamoxifen well, there may be many other things that I don't metabolize well.  Lack of certain gene alleles just makes it more difficult for my body to detoxify myself. 

They game me a whole ton of info on estrogen metabolism, hormones, bone stuff. A lot to read. But I left feeling super confident that I have made the right choice and found what I was looking for. I'll keep you posted after I talk with her Monday. 

Have a great weekend, everyone!

Hugs!

DeAnn 

Nash - yuk about the nurse. I hate that. I guess chemo did a number on our veins! mine play hide-and-seek... anyway, happy to hear Zometa was - is - uneventful. I will not go and ask for it right away, but I think I'll bring it up and keep an eye on it for the future - given that my mom developed bone cancer 30 years later, maybe it could be useful sometimes. (thankfully, for now she is in remission, even if still doing chemo now and then to keep it that way).

DeAnn, I am happy you found what you were looking for. I sounds like you are getting a lot of attention and some good advice. 

Hi girls. I really need to get connected with you. I was diagnosed March 2007 at age 43. I am really having a hard time emotionally and with my meds. My cancer history and diagnosis is on my profile. I just need to vent and know that I am not alone. Gotta go now but I will check back in later today.

Lilith,

Great news about your Mom!

DeAnn,

Are you taking a hormonal treatment??  Are you going to stop taking it, since your holistic dr. doesn't like them??   I am having a bone density test on Tuesday.  My onc is switching me from Tamoxifen to Femara, and we need to see what my bones look like before I switch to an AI.

Hope everyone is having Happy Hanukkah, Merry Christmas, or Happy Holidays!!! 

Hugs

Harley

Hi Penny! Glad you found us, but not glad you are having a hard time with things. I was diagnosed at 39, so not much earlier than you were.  Feel free to vent away here. We do it all the time! 

Harley, at this point, I'm quitting on the Tamoxifen and I've started using DIM and Calcium-d-glucarate, and I'll find out about some of the other recommendations next week I think. I don't know if there is a way to post a pdf here, but I think I have most of your emails if anybody wants to read some of this estrogen and bone health stuff they sent me. Really good info! If any of you want me to send the files to you, just let me know. 

Oh, and speaking of venting, I have to vent over the fact that I just found out this week that because I have a $5,000 deductible on my insurance policy, I now have to shell out over $3,000 for the BRCA gene test. Why, oh, why didn't my onc do this test back when I had surgeries and chemos and everything and had already met my deductible?!? The genetic counseler said they were going to check with my insurance company and if it was going to cost me more than $375 they would let me know first.  So, apparently the genetic counseler is prone to lying through her teeth. Oh well. They had just better be OK with an extended payment plan! 

DeAnn 

DeAnn,

I can't believe that you are having to pay over $3000 for the BRCA test!!  I was worried when my onc. suggested that I get that test, and not sure whether  my insurance would pay it.  So, I told the nurse who took my blood that I was serious:  "If the insurance won't pay for it, I don't want this test done."  She promised me that they would call my insurance company and if they won't pay for it, they would not have the lab run the test.  I had it done this past June, and I didn't hear anything back from my insurance or the lab, so I guess the insurance paid. 

Yes, I am also interested in the information you have.  DIM and Calcium-d-glucarate?  What are they and what do they do? 

Happy Holidays, everyone!

Harley

Kaye, Harley and Nash- I emailed you the files as that's how they were given to me so it was easy to just forward them on. A lot of info to plow through, but more info is always better than less!  

DeAnn