February 2012 MX

Hi all

Well it looks like Arimidex for me. My MO would like me to start it May 12th to give my body a break and let the ovary removal have a little more time to settle in before I get slammed with that. I will be taking extra Vit D and Calcium as advised. I will be starting back with my omega-3 and vinegar Friday. My Dexa came back normal so I am hopeful this will not be effected much. They took more blood today to check my "D" level and some other things. I will see her in 3mons. As for the p53 test she did tell me I didn't have one of the mutations (thought was good) but I am set up for a colonoscopy May 7th so off to Gastro I go....uuggh...I guess tomorrow I will know exactly what they are looking at.

Hope everyone is doing well...has anyone else started on Arimidex?

Hi DebbieOS....I thought if you were on AI's you were post menopause...Tamoxifen is for pre-menopause...is there a different scenario you are dealing with....I am not up on all the different combos.

Thanks for the input...I have been trying to look up every different opinion. Hope you can find the one that is best...

DebbieOS...I am worried about the SE's more then I think I have worried about anything else...I guess because they are going to be long term and you don't know what you're gonna handle. I hope that works better for you. Please keep me posted? I am glad we have the FFF. I don't know what I would do if I couldn't check in. You and all of the ladies on this site are great!

Trying again today to have second consult appt with PS.  No closer to reconstruction than when first met with him! 

Good vibes appreciated that for a THIRD time it doesn't get rescheduled by some surgical emergency.  PS is head of the group and gets called in for all emergencies.  I'd have to lose it if this happens again!  Sadly, it's not that easy to get switched around with Docs at the VA so it's better to bide my time.

The vibes worked...to some extent.  Did the appt get rescheduled?  Nope.  Did I see the PS I was scheduled to see?  Nope.  I should be called next week for scheduling the surgery though.  YAHOOOOO

You did it, Bern!

Thanks Wren44...with my ovaries coming out the 12th I am having some hot flashes and once in a while some nausea. My appetite isn't really there either. I think I am just stressing over what "might" be. I will try it in the morning also when I start, I heard you have less sleep issues also if you take it in the morning. Here's hoping.

My Genetic testing wasn't so scary. The mutations are in parts that don't have any know association with any thing distinct. I have agreed to another test that will be broader and they are going to test other select family members to see if there is anything in their DNA. This will be family members that have had a tumor or cancer already, including my daughter, sister, her daughter and my mom (who has no cancer/tumors). I hope it is helpful for future info in the big picture of things and family screenings. I was told so far that my daughters will need to start their sceening at 25 with MRI's which puts 3 of them already at that point. My daughter that has a lump (25yr old) and was told it was a fibroadenoma, I was told to have her tell the docs to remove it. They are at a 40% risk of getting BC and the doc even went as far as telling me they my consider having their MX's sooner then later as a preventive measure. I thought I would lose it hearing that part. 

Has anyone else had any genetic testing!

Hope all is well with everyone! 

Hi Debbie...I had the large rearrangement test BRACA and the BRAC 1&2 all negative...but with the variety of cancers on my dad's side and just in general in the family they did one for the "p53" gene. The test showed  2 "polymorphisms" but they are not sure of the significant values of them when it comes to lifetime cancer risks. The lab is offering to test others in the family and my mom to see if it is hereditary and if I got it from her or dad or one from each, etc. I am sure this is just going to be used for research but could actually be helpful in the long run with screenings for our children and grandbabies...

I had the ovaries out because I was told my cancer was highly estrogen positive and I still had alot of it...I had a hyster 10 years ago but they left the ovaries because of my age. I just didn't want to take the tamox and ovarian cancer is very silent so it was the best option for me. I am 49 and should have been going into menopause anyway....

I asked the girls not to take any estrogen based birth controll... there is some very useful info coming from the test that hopefully will benefit them....

Debbie- Good luck today...let me/us know how it goes.

Hi Deborah2012....is this your final exchange? I didn't have drains for the final unless they are doing more then that. I try to overly protect my right arm where the nodes came out because of the fear of lymphodema because the nodes are not up to the task of filtering or fighting injury. Doc told me to use caution for the next 6mons. and make sure the cuts are cleaned well. I am not sure about the whole side in general. My left arm is still sporting a huge bruise from the misplaced IV the 12th. Maybe our bodies need time to catch up......wow 9.5 hour days, you are amazing, you may need some rest.

 I am seeing the GYN today to get cleared for work next week, I am excited but nerveous because I didn't start the Arimidex yet (start May 12th). I asked my boss to peek in on me once in a while in case my head starts spinning or something.

Off to get ready for appt...I will check in later to see if Galsal has a date, which AI DebbieOS is on and what else is new with the Fab Febbies

Hi Deborah2012, Bern, Dixiemine and all other Fab Febs!

Well, it's exemestane for me, ladies!  I'm going to start it tomorrow afternoon, and hope that it doesn't give me the headaches that Arimidex did...although my MO did all but accuse me of lying about the headaches to her.  She said over and over about how she's treated thousands of patients and "Not one" of them reported headaches to her as side effects...to which I quietly said, "Gosh, maybe I'm unique."  Then she went on and on again about how she wasn't sure what to give me next because "No one" ever experienced headaches of a severe nature in her experience, to which I said more assertively, "Well, maybe I'm special."  When she continued again to dismiss my side effects I just couldn't take it anymore and loudly said, "WELL, MAYBE I'M JUST LYING TO YOU ABOUT THE HEADACHES BECAUSE I DON'T WANT TO TAKE ARIMIDEX!"    Lordy, lordy.  Yup, she pushed my button!  (My son, the med student, was with me and he said afterwards, "Now, I know what NOT to say to a patient!") 

My plastic surgeon has been WONDERFUL, my breast surgeon has been superb, but my MO, well...my MO is something else.  By the time I left her office, my blood pressure, which the medical asst forgot to measure at first, was (after this discussion) above 180 over 80.  All that being said, she did put me on exemestane, which is a good option, and has also agreed to give me the option of doing sequential hormone therapy (2 1/2 years on one drug and 2 1/2 yrs on another)...so that sounds like a good plan. I guess that's what's important, not whether I like her or not

Well, good luck Deb, with the surgery on Monday...and Bern, good luck with the Arimidex in 2 weeks....

Hugs,

Deb

Some of you girls are moving right along with your exchange surgeries scheduled  so soon.  Maybe it doesn't seem like it is that soon to you, but I don't have my exchange surgery scheduled until July 5 (due to some vacation time my PS is taking)  He says all looks picture perfect, I'm glad it looks good to him because to me it doesn't it just looks like a boxy boob.

Debbie OS  - sorry to hear that you had such headaches with the Arimidex.  I am glad that you can start on Exemestane for the 1st 2 1/2 yrs. , maybe by that time they will have something else out there.  who knows??  My MO said the Exemestane is what she would also start me on as I am post-menop.  We are wating for my exchange surgery & recovery before starting so I don't have to deal with all of it at once. 

 Where has the time gone?  Feb. seems so long ago, we've made progress over these last months.  Hopefully that is the direction we'll keep heading. 

 To all - "a very good weekend"

Hello to all my dearest FFF squadron (Bern25),

Galsal, we must be living in parallel medical bureaucratic universes.  I still can't get my Mammoprint test because the local hospital that guards my remaining tissue block like some Greek mythological creature with different animal parts apparently doesn't have a "contractual relationship" with Mammoprint- only OncotypeDX.  My onc is personally setting up a 3-way meeting at the local hospital to resolve this Catch 22.  The poor mythical creature (who must be bound by some legal hospital curse), the enterprising Mammoprint representative (who is dying to use my 21 score OncotypeDX results for some statistical correlation of "intermediate women" with the Mammoprint information) and my Onc in her action hero cape will all convene.   

Bern25, you are correct. I am facing a drain again because Ms. Goody one-breast needs to kinda match Ms. Foob and change out the existing elective implant from ten years ago.  It's kinda trippy to be facing a drain again.  Brings back memories of the MX era.  I agree with others here that it seems like some previous lifetime that we were dealing with MXs and BMXs.  I laid out my drain station and am preparing for my "kabuki" cleanliness dance with the drain all over again!  

Janice 415 I'm guessing you are not facing the magical 90 days post MX urgency to employ some BC prevention treatment because you had DCIS no invasive?  Day 90 for me is 5-3-12. I wanted to do what you are doing.  Wait at least until my drain is out post recon.  However, I will start Arimidex Weds. 5-2-12.   Yes.  During pain pills etc that may mask or exacerbate SEs or perhaps some fairy Godmother will waive her magic wand and I'll be SE free!  Also, Janice 415-although I am physically ready and need to move on in the reconstruct phase- I am finding resignation rather than joy of my impending surgery.  I just got all patched up and rejoined the semi-normalcy world.  You may derive a benefit to waiting a number of months before recon? Don't worry ladies, I'll snap out of it, soon!

We have two pioneers for Exemestane in Janice415 and DebbieOs. Please keep us informed.  You will be standard bearers for the Fab Febbie Females!

DH and I went freshwater kayaking today.  Was weird to see my foob and boob in a bathing suit top next to each other.  Glad I wore a windbreaker!  You might be breast cancer patient if your idea of a good name for a bed and breakfast would be "Foob and Boob Inn" .

Ah ladies, I'm not even on the meds yet!  Stay tuned.  I'm home this week "recovering".

hugs, smiles, &  xoxoxs to all

Deborah2012

Enjoy your day Bern!

Deborah...it gets worse.  I wonder how many mythical creatures we'll encounter! 

The PS that I DO have an appt with is not the one I spoke with on the phone Friday but his partner.  I don't think he knows that.  When I called, I think the person heard PS and a Dr A with a short name.  Both the partners are Dr A with a short name.  So I'll be calling PS tomorrow and then likely to the VA again. 

The breast clinic is the one won't order the Brca testing for me, said Onc needs to do that.  Onc has been in contact with them and was told that since the NP at breast clinic who orders the test is out on an extended absence, they're trying to figure out how to get this under control of who orders what and what paperwork is needed, etc.  

LE has hit truncal again with a vengence, have been seeing LT weekly since about a month out from bmx.   Arm does better most of the time, trunk though has decided to be a real PITA.

Oh, and I should get through all this with ONLY psycho babble talk therapy?  WTF!  Do Jesus, give me strength!!!  To hell with that...made an appt with a psych through my insurance.  The VA isn't the only game in town and I don't have to play their game ALL the time.

Bern25,

I loved vicariously enjoying your day!  Farm animals and museums- is my idea of a great combo, too!

How fun, fun, fun!

Deborah2012

Galsal...Hope everything starts picking up for you...my patience would be at an end by now. Just a thought: I am not sure how close you are to The Moffit Clinic, but my sister in Tampa goes there and she said and my Genetic Doc said they are also BIG on Genetic testing. The rest of my testing up here of the family will be at no cost because they are using the info for their statistics also. They may be able to guide you or do some of the testing without a lot of hoopla.

The day at my sisters was great. Just being around some normalcy was great!

Hoping the best for everyone...thoughts are with Debbie2012 today, hope you can check back in soon because you are feeling up to it!!!!!!!