Bottle 'o Tamoxifen

Rachel_BC

and PattiB- that's the way it SHOULD be at all salons.  Yay for you, you got a good'un.

AllieM22

ugh Leggy--so sorry to hear that although glad it is over and soon you'll have more info. Hope it's all nothing!!

Rachel--so glad you and Chelev got to meet! Your life does sound like madness now!! Hope the court date went well--sounds horrific that you've been out of your house that long!!

Rose--I didn't actually have uterine issues (although the pelvic US found some uterine fibroids I didn't know I had--yikes! But likely those have been there for years and I just didn't know I had them since they have been apparently well-behaved.) I did notice a big difference after stopping the flaxseeds although I miss them! So great for the digestive tract...it could be that my system just adjusted but it's odd it was at the same time--so I just thought I'd mention it. I could try having less but want to see if the cyst will go away if I have none...

I also couldn't get the BRCA test approved by the insurance co b/c I didn't have any family cancers (ovarian or breast) only that I was young to get it--but their cut-off was under 40 and I was 42. Hmmm-considering the tumor probably had been growing for years, that doesn't make a lot of sense...so I decided not to get it. Did meet with a genetics person who reviewed my history and said the likelihood was around 5% I think--so I thought it was reasonably safe not to get it. Also--and I didn't know this--there are two gene mutations that cause breast cancer--BRCA1 and BRCA and if your tumor is ER/PR+ then it is 90% that it is not a BRCA 1 mutation--still could be but low odds--although you could have the BRCA2 mutation. Since mine was ER+, that lowered the odds even more... 

and yes, they can deny you life insurance. I believe if you are within 5 yrs of having cancer, you are also denied life insurance... 

HelenaJ

Dust storms were amazing Leggy - real armegeddon stuff and we live 9 hours drive from Sydney and still had dust everywhere.  Hope you are recovering from your sampling ..and the pain has subsided.  yikes.

Patti - kids say the darndest things.. I NEVER ask my DDs if my bums looks big in this .. great you are lovin that hair.. hugs

Brendatrue - hope your spark is burning bright.

KorynH - your side fx have certainly been harrowing but I would think the fact no one had told you about them is because they are rare side fx and don't happen to most women, not discounting your pain and suffering but there are many women coping well and living well with tamoxifen. Hugs.

Rachel - no not the cat pee - we really should get that sitcom happening. And how wonderful that you met Chelev.  Hope everything goes your way tomorrow at court and may justice prevail.

Kari - hope you enjoyed your dinner with your DD - nice hey. 

Allie - good news on the well behaved uterine fibroids hehehe.

Can't believe this but tonite on the 6.00pm news they had this big story on brocolli sprout powder and it amazing results with diabetes and some cancers.  So we aren't all that too far behind you guys LOL.

I know when you are sleeping when I have to scroll down the active topics to find this thread.  So have a great sleep everyone.

lots of hi-fiving

Helena

Mary22

Hello, You have been a bunch of busy beavers. I have not posted for a few days. I skimmed through the posts, but since I have not had my coffee, I do not remember  what I wanted to say. I suffer from CRS(can't remember shit). Not sure if it is just natural old age or if is is tamoxibrain.

Helena the lice thing sticks out, because our school just checked everyone for lice. I remember when I was living in Florida it was a regualr thing.  Lice can not live in "dirty" hair, so have your dd put hairspray on her hair.

There are other genes that have are linked with BC. Cowden which is the PTEN gene and Lynch Syndrome which is NPHN.  FORCE, Faccing Our Risk of Cancer Empowered, talks about genetic cancers.  facingourrisk.org

Hope this helps. This was infor I was given after I tested +.

PattiB

Helena - Hope the dust settles down in Oz.... or maybe your are in Kansas.  Seriously hope all is well in your home.  2 birds with one stone, washing away nits and getting rid of dust at the same time,  seems if you had to get lice it was good timing, if there really ever is such a thing.

I started eating flaxseed with my yogurst after reading it was really good for you. I forgot to ask the nutritionist at the cancer conference why it wasn't one of her buzzfoods.  I guess I'll stop for now until I get a chance to ask about it.  The estrogen comment concerns me a little.

Skimming everyone's posts with work it's hard to read everything.  On the computer all day, so I want to get off a a decent time.  I seem to have 1 1/2 hours of reading my personal stuff, can't do that at work, too busy.  I am such a slow reader... skimming doesn't work to well for me, I seem to miss a few important words when I do that.

Reneepals

I really do not think that flaxseed is a good idea with Er&Pr positive Breast cancers. It is a phytoestrogen and mimic natural estrogen. But I could be wrong.

AmyIsStrong

I was told that the ground flaxseed I take is almost all fiber and passes through the system so it is ok. I HOPE so because it is SO helpful to my digestion. There doesn't seem to be a conclusive consistent opinion on this. Makes the decisions so much harder.

kookiesmom

I can't belive all that is going on here!  Anyway, I am up getting something to eat & a cup of coffee so figured I would kill some time here while it brews.  I went to my Dr. yesterday and he has me on strict bedrest - bathroom and eating I can get up for - nothing else!  First thing he said was "did you stop the tamoxifen"  I said yes and asked if he had seen it cause blood clots before and he said Yes.  He told me to eat ALOT then take 2 safety coated aspirins several times a day.  I have been on a diet and exercising for the past couple of weeks but whatever. I know I could eat alot of low calorie food but who wants to do that when there are chocolate chip eggos calling my name?  I should be able to get up over the weekend.  No working - my boss is gonna start looking for a younger healthier model I fear! 

Helena - Someone else on here from FL chimed in about using hairspray  to keep your little friends away - they are very common here but knock on wood we have been spared.  I do know lots of others who have had to deal wih 'em and I have heard what they like is really clean shiny hair - so use lots of  gel & hairspray.  Good luck.  Now I am itching...good luck!!!!!  Maybe let the red dust get in your hair?  That looked so wierd on the news.

Thanks to all who have wished me well - I better go get back to my bed and elevate.  This is so boring!!!  I wish I had a laptop!

kfinnigan

Wow, I hadn't watched the news yesterday, so I looked online at Helena's OZ yesterday...check these out!  http://www.boston.com/bigpicture/2009/09/dust_storm_in_australia.html?p1=Well_MostPop_Emailed7

Leggy, glad you got through the SF-Sampling yesterday!  I thought of you last night and wondered how you did. Your description made me laugh!! 

Brenda, I get the slow burns too, exactly how you described it!

Rachel, SO cool you and Chelev got to see each other!  How far is it to your salon??  You've had quite the BUSY life lately!  Hope all goes well and as Helena says, hope justice prevails!!  Go Get 'Em Girl!!  Ok, I've been practicing my secret handshake lately! haha

Mary, CRS!  LOL LOL!!!!!!!!!!!!  I can't CRS either half the time!

Helena, broccoli sprout powder eh??  Ok, I'm gonna have to break down and buy some of this SF broccoli sprout stuff! haha  Are you healing and sleeping ok?? Big hi-five!

I've been wondering about the Flaxseed stuff too, do we or don't we??  I have a bag of the stuff but haven't been eating them.

AllieM22

Ok--here is my two cents on the flaxseeds--they believe phytoestrogens work like they think tamoxifen works--that it is a weak estrogen that takes the place in estrogen receptors that stronger estrogen would otherwise take. This is a good thing b/c you have less strong estrogen wreaking havoc on the system and for us, the boobs! Plus they are excellent to keep things moving (i.e., good poops!). The more that moves out of the digestive system the better.

Here's a quick ref on fiber: http://www.healthcastle.com/fiber-solubleinsoluble.shtml 

Rachel_BC

Mary- I love you, will you marry me?  CRS hahahahahahah

Kookiesmom- I am going to commit bigamy and marry you too, who is going to eat healthy when there are cookies around?

Court went good- many thanks for well wishes .  One step in a long long trip (sounds like SFBC TX right?).  Nanny was half an hour late, so that put the pressure on and how... and its 87 freaking degrees here... la la la ...I am so wired.  And sooo far behind on these boards... I haven't even been to the Hair thread but I understand there's some pics up there... will post anon, and will check out Helena's dust storm... jeez we really do need to start that sit com.

Mary22

Yes it was very hot here too!!!!!!!!! but we took advantage of it and took the kids outside twice to play.

Rachel_BC

Mary does that mean you won't marry me?

kfinnigan

You guys are funny!

So I wrote my Rad Onc and asked how much my heart was hit and I am happy with his reply!  He never told me!!

 Kari,

I reviewed your radiation treatment plans. Your heart received almost no radiation because I was able to arrange the beams that way. I am not aware of any heart monitoring tests for early detection of heart problems due to radiation. We have the standard heart tests that are performed when a patient is suspected of having angina or a heart attack. I think your risk for heart problems due to radiation therapy is exceedingly low.

Dr. Koo

Mary22

Rachel, if I wasno't already married, I would Marry you. Right now I am ready to choke DH!!!!! Please do not report me. How can men be soo oblivious to everything. I was tired last night, so I went to bed early. He evidently he was mad, to bad so sad. He wanted me to type up an estimate on the computer for him. I told him to leave it by the computer and I would do it the morning. Well it wasn't there, so I got him up to ask about it and he wanted to sleep!!!!!! Why is it ok for him to sleep and not me? Am I just being stupid or what? Enough ranting about rotten men!

Work was miserable today! It really feels like it should be the end of the year, esp with the warm or rather hot weather.

PattiB

I called the nutritionist at the Abramson Cancer Center to ask about flaxseed.  She said that as for Breast Health there is no study about pros or cons.  Flaxseed is good for digestion and Omega 3's.  The estrogen is not the same as soy so it is ok.

Have a great Friday & weekend everyone.

LeggyJ

It's been a good day....nothing new. Hey Rachel, what about the rest of us, "what are we chopped liver?"

HelenaJ

hehehehehe ... chopped liver ....

AllieM22

I know--where did THAT expression come from? 

Patti=-thanks for the additional info on flaxseeds...! 

Mary22

Good Morning TGIF!!!!!!!!!!! Looking forward to the weekend. The kids are punished, so I will not have to run errands. FunFun!

kookiesmom

Rachel - how houghtful of you to propose - I could use a wife right about now!  On day 4 of bedrest and although I am enjoying not having to cook & getting take-out for dinner  the last few nights my house is fit to be condemned!  My cleaning lady cancelled on me this week.  Maybe Mary should come over & punish my kids too !  Back to bed.  ARRRRGGGGHHHHH!

Mary22

I will send my dd to clean your house!!!! She wrote a paragraph at school on how could help at home and she said she could clean the whole house!!!!

PattiB

Most people stay away from chopped liver.  But, I DO like liver and onions!!!

carollynn79

No thanks to any liver!!!

Thanks for the info on flaxseeds, enjoyed some on my yogurt with a tree fresh peach off our tree today!  I am going to work form home today for a few hours, pick plums, make some preserves, going to take a walk in the fabulos fall weather we are having, and I have to clean house.

 My DH has been trying to tile, paper and paint the half bath/laundry room but we fianlly got rain so everyone is planting wheat and he cleans, treats and sells wheat seed so he is swamped. Of course the washing machine has been parked in the kitchen all week but he managed to paint where the washer goes and put it back.  Now I have to wash and hang out 4 loads of laundry.  I have offered to help him all summer but no he waited until I went back to work, he likes to work by himself around the house, oh well should not complain he does a wonderful job and helps pick out everything.  Will warm flush hot flash is done have to log onto work.  Hope all have a great day today.  

kfinnigan

Patti, thanks for checking on the flaxseed, good to know!!

Mary, I think your DH needs to be on 'time out' this weekend with your kids and then you can go play all weekend! heehee

Have a great day all! 

kookiesmom

I am so upset!!!!! I had a gyno appointment that I kept this morning even though I am on bedrest for phlebitis from Tamox.  I figured I would be lying down at his office so it would be OK:)  I have been having some really strange fluttering sensations in my uterus area and felt I had better get it checked out.  After my exam he said lets get an US just to be sure it isn't "anything".  OK so they luckily had an appt. right then for a transvaginal US.  Never had one before and it was interesting.  After the test the technician said he is gonna want to talk to you.  OK so now I am getting nervous.  Back to his office full of woman and he takes me right in, closes the door and tells me I have cysts and fibroids.  When I asked him how many cysts he gave me a medical term of "bunches" of cysts.  He knows I have a really crappy gene pool so due to the size and looks of the cysts I now have to get a CA-125 test.  I asked him what do we do about  these bunches of cysts and he said well if isn't ovarian cancer and it is caused by the tamoxifen (AGAIN with the flippin Tamoxifen)  then I can have my ovaries removed. I hope I am making sense here.  I am feeling so sucker punched as I thought maybe it was a bladder infection or some stupid little thing.  Anyway as I see my onc. on October 7th so she can do the CA-125 test when she takes the bucket of blood needed for all of the other tests.   I had a minor crying jag pity party in the car on the way home.  My next quandry is do I tell people or not?  I told my SIL cause she is my rock and we both ranted and raved about it.  Saw my husband briefly when he popped in to check on me and I could tell he is feeling sucker punched too.  I just hate all this drama in my life.  It is getting embarrassing.  Anybody else get "bunches" of cysts from Tamoxifen?  I wonder what my next drug will be and what that will do me.  Rant is over.  Thanks for listening.  I gotta go elevate my friggin leg now - which doesn't hurt as bad today so at least that is one good thing.  I want my mother!!!!!!

kfinnigan

Oh kookiesmom, I'm so sorry about the bunches of cysts...I'm praying for the best results of your test.  Try not to get too worked up over it and cause too much anxiety, I know easy for me to say, but let's wait to see what the next step is.  poor thing, I want you to have your mother too!!  Love ya girl, hang in there!

prayrv

kookiesmom,

Yes I am having issues with fibroids, increased uterine size and cysts on my ovaries.  We are monitoring them via transvaginal ultrasound.  My next appt is next week Thursday.  I hate getting sucker punched too.  (can anyone say - it's only dcis, it's only a mast, it's only idc, it's only rads, etc) however, I digress.  If my cysts have grown since my last exam (June), I will insist on CA125 and a ct scan.  You are making perfect sense (to me anyway).  If you want to tell others, go right ahead.  If you don't want to, don't.  It all boils down to how you feel in confiding in others and what their reaction might be.  Sending you hugs and prayers.

Trish

Anonymous

Kookiesmom,

That's awful.  Getting one "rare" side effect from the Tamoxifen is more than bad enough.  That is one place we really don't want to hit the jackpot.

As far as telling people, at this point you have some idea how many of the people in your life will react.  Tell the people who you think will be helpful to you, and don't bother with the rest, at least until you are sure what you are dealing with. 

HelenaJ

Kookiesmom - I bet you had a crying jag ((((hugs))))).  Both my sisters have fibroids and my 19 year old niece has a cyst on her ovary - all non cancer/tamoxifen related.  All being monitored regularly (like Trish).  See your Onc - get all the info, get all the tests.  And yes, all the bloody drama is just too much isn't it.  As for telling people, you know you may make a decision not to tell someone then just blurt it out, it will probably depend on how you are feeling at the time and who it is. It is NOT embarrassing it is just unfair and sux big time.  Look after your leg and I want my mother too. 

soft hugs

Helena