first chemo done

Janet- I found a recipe for lemon curd for my "pink lemonade party" I am still looking for one for the lemon-raspberry square.  Did they come out pink, when you made them?  I also thought that I would make Lemon cake or maybe a pie. I've been looking for party hats for the group, going to try and make this a fun occasion. You really had a great idea thanks for sharing it.

kathy

Hello Everyone,

 I just back from an Alaskan Cruise and it is great to read up on everything that has been happening.

Wow, Jill you have lost 5 lbs, have cause havoc with your doctor over Tamoxifen ( I agree with you) and have lost a dear friend (I am so sorry).  Maybe this week you could just hang out and do nothing.  Maybe burn some brownies or something.

Cruise - so sorry about radiation.  By now you are hopefully done done done!  I hope so, It can be tough for another week or so afterwords but then you get to heal.  Healing is really cool.  I am 2 months out of rads and my breast skin is now pettier than it was before rads.  It is really smooth and of course tighter than my old boobs.  With the exception of a nipple my boob looks better than before.  Also, I remember the Doctor from the North Pole well, I was amazed at her strength.

Laura, 2nd treatment here you come.  You go for it girl.   Loosing my hair was a tough one so I sympathize with you.  I opted for hats instead of a wig, it is so hot that hats have been great.  I am now starting to not wear the hats everywhere.  My hair is about an inch long, I still look like I have been through chemo but I am no longer bald.  I might suggest that you take a picture when it is bald.  I am glad I did.  I can look back and say wow my hair is long...considering.  I will be thinking of you.  I hope all the next treatments go FAST.

When on the cruise, besides eating lobster, filet's, scallops, salmon and lots of pastry I was able to get away from the house.  It was so nice to see different sites.  This trip was suppose to be kind of be my coming out event....after everything (all treatment) is over.  Well, it was not to be, we kind of wanted to get away from cancer, not talk about it, not think about it and kind of forget about it....but.....on the ship they had a Susan G Komen "Walk the deck for the Cure" walk.    I guess I was not suppose to forget about it.  We walked 3 miles around the boat along with about 45 other people.  It felt great and I was not sad at all infact it was kind of invigorating.  I have a great hat to prove it.

Thanks for listening

Kristi

CRUISE:  Congrats, congrats congrats!  I am sooo happy for you.  I know that you will cherish each precious moment of life.  For now...just have fun with Meah!  

Had some good news today....I went for an ultrasound to see what, if any, effect the chemo is having on my tumors.  Well, the large 2.5 cm tumor has shrunk to 1.5 cm!  The smaller tumor showed some progress, but not quite as much.  I am pretty happy with the large tumor's progress since I've only had 3 treatments of chemo.  I am a little concerned that the tumors are shrinking at different rates.  I'll have to see what the onc says about that. 

Take care all.

Janet

Hey ladies,

Been off the boards for a few days but still thinking of all of you.

Cruise, WOW, I am so happy for you!!!  Get to healing and take great care of that poor skin of yours - I hear that a nice glass of wine now and then is a good thing....  You shoulod buy some really pretty bras for yourself.  I have always been an underwear snob, but recently got a very pretty aqua demi-bra from Gilligan and O'Malley at Target, of all places - it's lacy and has cute panties to match.  Not a bank-breaker and very sexy!

Janet - YEAH BABY!  That means the chemo is kicking ass.  Wow, congratulations, that is wonderful news.  I bet you were walking on air!!  Now for the remaining tumors... time for them to pack their bags and get the heck out of Dodge. 

Kristi, we've taken several bald Laura pix. I was so depressed about my hair falling out,  until I buzzed it and got through that last week.  Then I buzzed it down as short as I could a couple of days ago.  Oddly...  I actually like the way I look bald.  I know that sounds totally weird, but it turns out that I don't have a lumpy head.  Even my husband said, "Wow, you have a really nice skull."   I don't know if I'll stay this way....  I expect I'll like having hair again... but I feel no pressure to get a wig, which is nice - I am just going bare-headed, with lots of sunscreen and an occasional scarf! 

Jill, glad you like the coffee.  "Brilliance Blend" - made me think of you.  You might consider offering a cup to one of those tent guys...  Maybe pour it over some ice, add some cream, bring it out so you can watch him drink it down... wow, I think I need to go cool down...   

I'm three days out from TCH #2 and felt okay until this morning, when even thinking about food made me want to retch. I'm tired and have no interest in anything except lying around, eating saltines and reading bad novels.  And my lower back aches, but I can't decide if that's from the chemo or just from lying around on my ass for 24 hours.  Oh, well, I'm going to go meditate and relax and wait for it to pass - which it will.  My sister is here visiting and that makes ANYTHING bearable!  

Hugs to you all, I love hearing all this good news.  

Laura  

Hi Ladies...

Well as you can see...its almost 11:00 PM and I can barely keep my eyes open...my little Meah really has me going every minute.   zzzzzz znore....zzz

Laura...thanks...I really am not a lacy kind of girl...I usually go with Victoria Secrets...barely bras...wide straps and underwires...just gotta find one that has a nipple on the left side to match the right when I get a chill...LOL...I really think the lacy ones are pretty sexy...but bra less is even sexier....LOL

Kristi...girlfriends...we are all SURVIVORS....let me tell you....God gave us CHILDBEARING and Breast Cancer..cause he knew we could HANDLE anything...LOL

Well...I am off to bed and rest before PANCAKES at 6:00 with Meah...and watching Hannah Montana...I think I know every song......

Happy 4th to all of my ladies. 

Thanks Laura..........Hope no news is good news.  Where and how is everyone?

Laura-you are certaintly making progress!  How are you feeling otherwise?  Is your sister still visiting?  You are doing it lady....keep it up.

Mom is plugging along with her radiation and begining to get a little sore.  But, still doing relatively well.  She too is getting the Herceptin and seems to be doing alright with that particular med.   Other than that.....things are alright here.  Getting a little anxious to hear updates from everyone.  Hope to catch up very soon.     Shannon

Wow Jill!  I really admire your ability to do the research and articulate it so well!  I research and research and then when I try to explain it to people it just never seems to come out as well.  It is so difficult to have so many options and hope we are picking the right ones.  Something has been bothering me about the road I am on and wanted to see if you ran across this during your research.  I have't been able to find much.   I have alot of faith in my doctor here in Houston who is one of the leaders in the HER2 research but it still scares me but I am sure that is how most feel.  My situation is that I am highly ER+, PR+ (low) and Her2+++.  As you know I finished with chemo (Taxol) in Jan09 and am now taking Herceptin until Nov09.  I am not taking Tamoxifen.  I am taking Lupron to suppress my ovaries and Estrogen production.  My Onc has told me that it is kind of a toss up between the two... some would say Tamoxifen and others would say Lupron.  He made the comment (and I can't remember exactly what it was) that there are now some studies that the Tamoxifen is not as much of a benefit in Her2.  So, it seems everyone that has had BC takes the Tamoxifen but I am not.  It worries me.  He made the comment that my tumor was very small and we were aggressive with the bilateral mastectomy, chemo, Herceptin, etc.  Anyway, just thought I would ask in case you have some info on it.  Jill, I must say you have been a wealth of knowledge on this website and I hope you know how helpful you have been to so many.  Sending happy days your way!

Cristl

Here is something I found while searching.  This is actually my oncologist.  It seems to add more support to your details above.

http://www.breastcancerupdate.com/bcu2006/6/osbourne.asp

Pathoogy from Bi-Lateral showed IDC (.4cm) in same breast as DCIS and nodes negative
Dx 6/25/2008, IDC, <1cm, Stage I, 0/0 nodes, ER+/PR+, HER2+

Hi, Cristl !

Wonderful hearing from you after all this time.  You know, I had always wondered why your doc went the Lupron route with you instead of tamoxifen, but after I did all this research, I understood why.   And here you pipe in and confirm it for me. 

Anyway, let's be clear on a couple things.  First, my research focused specifically on tamoxifen and what can affect its efficacy.    What I found was that, as your doc mentions, there are several studies out there that suggest that Her2 can interfere with the endocrine activity of ER, and hence make an ER positive tumor not respond as "well" to tamoxifen.   I have posted below an except from a question on the Dr. Susan Love site that reinforces the point you made.   This point below reinforces your doc's opinion to go the Lupron route.

 My tumor is HER2-positive and estrogen receptor (ER)-positive? What hormone therapy should I use?

Recent studies indicate that women who are both estrogen receptor (ER)-positive and HER2-positive may not respond to the hormone treatment tamoxifen. If you are postmenopausal, this means you should consider using an aromatase inhibitor for hormone therapy.

If you are premenopausal, you may want to consider ovarian ablation, a term that refers to stopping the hormones produced by the ovary. This can be done by surgically removing the ovaries or through the use of a class of drugs called gonadotropin-releasing hormone (GnRH) agonists. These drugs reduce estrogen levels and suppress ovarian functioning, putting a woman into temporary menopause. The drugs most commonly used for this purpose are goserelin (brand name Zoladex), leuprolide (brand name Lupron), and triptorelin (brand name Trelstar). Ovarian ablation would also allow you to consider using an aromatase inhibitor.

 Secondly, the reason I am still not going the ovary ablation route is because my level of ER is so low - this is a key difference between your and my cases.  If I were highly ER, I would likely consider this route.    With only 20% ER, I am not sure it is worth it for the little bump in the stats I would get.  Herceptin though... wow.. those stats are impressive.   I am pinning a lot on that drug. 

Finally, I am impressed with your doc if he knew about all this.  I am finding the Europeans are ahead of the US docs on this front.   The best studies I found detailing the ER/PR and Her2 cross talk effects were coming out of the UK.   I am finding the NCCN to be rather wishy washy on the whole matter (which gets me wondering if there are concerns about litigation risks driving the science). 

Oh.. and by the way... there is a study on the front of this board (your doc references it), in which an ER/PR negative tumor "converts" to positive when blocking Her2 via herceptin.  (Keep in mind that the studies I talked about did not factor in herceptin use).   While this is only lab data at this point, it would suggest that Her2 does indeed mess up ER/PR because getting it out of the way allowes ER/PR characteristics to "blossom".   This means that in the future, perhaps hormone blocking therapies like Tamoxifen could be "efficacious" in a context containing Herceptin.  But, lots of data still to come to drive that one.

Anyway, I hope that answers it.   It appears your doc is rather progressive.

Jill

P.S. I saw your link - the one track I was really interested in - Track 5- I could not access.        

Morning Ladies....

 How is everyone?  Shannon...How is Mom doing?

Reading throu the posts of the last few days, I'm struck by how empowered we women are to take charge of our health decisions - I know sometimes this all feels overwhelming and confusing and disempowering, but what Jill described is a striking, incredible contrast to what my aunt went through in the early sixties - a nightmare of surgeries and pain and loss.  Just twenty years ago, a colleague went through a mastectomy that was the decision of her surgeon - not hers.  She remembers waking up to find her breast gone and crying as she realized what had happened. 

We might drive our oncologists nuts sometimes, but it's great that we can have some sense of control in all of this.  Jill, good for you exercising your brain and your decision making ability!  It's really inspiring.

Happy weekend, everyone!

 Laura  

Thanks, Kristi, I wish I were done too! Thanks for the good wishes.   I'm officially 1/3 of the way through as of yesterday.  Only 4 more TCH/H/H cycles.

I can't complain so far; it's been pretty easy compared to what I expected.  Yesterday I did my Herceptin without Benadryl, YEAH!!!  It felt so good to walk out of the hospital without feeling stoned.  (Not that I'd know anything about that.)

Laura 

YEAH.....DEB....

Way to go LAURA.....

Shannon ...give your mom a hug for me....so glad things are going well for her.

Just checking in....getting kind of lonely here. Hope everyone is doing alright. Missing my ladies-