Mamace (Kim) how are you?
 

Hi Kim
I remembered it's some time since you stopped herceptin and just wondered how you were doing?

Ellie

Re: Mamace (Kim) how are you?
 

I was just thinking about Kim today. If we don't hear from her, I will give her a call. Sure do miss her smiling face and posts!
Karen

Re: Mamace (Kim) how are you?
 

Thanks Karen,hoping and praying she has remained NED since stopping herceptin.
Ellie

Re: Mamace (Kim) how are you?
 

Hi Girls!
Thank you for the wake up call - I must get back on this site and get caught up with my "sisters".
And Karen, thank you for your phone call today! I loved hearing a voice from the Her2 boards and more importantly it was just plain great to hear how well you did on your last clinical trial.
I have to update my signature - and I would tonight except my 17 year old is pacing around the kitchen waiting for his turn on the computer....so....in short....
I went off Herceptin June 2011 (it was WONDERFUL...energy....joy...like a big push through the air on a swing!)..... the swing came back to the ground when February scans showed recurrence of 1 tumor in my lungs. Just one small one - so back on Herceptin I went. May scans showed the same 1 tumor; no bigger no smaller. Staying on Herceptin. Will keep you all posted on August scans. I am totally NONresponsive to ALL tumor markers - so it will have to be scans that mark any changes.
Karen - the article I told you about is here:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3251862/

A small bucket of hope - it is a full discussion of options beyond Herceptin - Novel therapeutic strategies in Her 2 positive metastatic breast cancer.

It puts all our options out there and may be helpful as you analyze available clinical trials.

Ellie, how are you doing now? What is your status? I don't see a signature and unfortunately, my window for being on line tonight is rapidly closing!!!
Please keep me posted on your doings and status.
Love and Hugs,
Kim from CT
ps Karen! watch your PM's, If I have 5 minutes tomorrow, I will jot off a message and maybe we can connect in NYC for a lunch?

Re: Mamace (Kim) how are you?
 

Kim,
How I've missed that smile and yellow jacket!
So happy to "see" you again.
OK, I'll check the PMs, we'll make a lunch date. Thank you for the link. Now, I'm going to put my 8-year-old to bed--she has a Spring Concert (violin) tomorrow!
Love
Karen

Re: Mamace (Kim) how are you?
 

It is unbelievable that you are NED for years until they take you off Herceptin! What would we do without that fantastic drug. Best wishes on getting back to being comfortable with NED.

Re: Mamace (Kim) how are you?
 

Hey Kim -
Sorry to hear NED stepped away for a moment, but he WILL be back.

At least all is stable at this time. And you know that there are some other drugs a short way down the road that can do the job.

At least you got to take off the clinic leash for a while.

Re: Mamace (Kim) how are you?
 

Hi Kim
Glad to hear from you but sorry the darn thing came back! Really pleased you are stable and sure NED will be back.I told my onc last year about you following a discussion about herceptin resistance. He argued (as I believe Dr Slamon does) that resistance occurs in most patients after a few years. What I think is clear is that there is probably a subset of women who do NOT gain resistance.this is encouraging but also confusing as I guess currently we have no way of knowing who is in which group. If it were clearer we could continue herceptin for women in high risk groups for recurrence.
I was interested to hear how well you felt off herceptin. I have been having it for 4 years and feel that there are cumulative effects the longer time you have it but can't seem to find anymore info? However despite side effects I am grateful for the benefits this drug brings to so many of us.
Hugs
Ellie

Re: Mamace (Kim) how are you?
 

Hi Kim
I was hoping you were just living your life and just forgot about all the bad days. I am so sorry you have to update your signature. I hope Herceptin will keep that stupid tumor quiet. Hugs. Michka

Re: Mamace (Kim) how are you?
 

Hello Kim,
Sorry to hear about a new tumor but hopefully the Herceptin will end that. Have they thought about adding something else in with the Herceptin?
Take care and get back to NED quickly
hugs and love
sarah

Re: Mamace (Kim) how are you?
 

Hey StephN - I am so darn glad to see you are still active on the boards - it seems like yesterday we were clinking wine glasses in Seattle! I am thrilled beyond belief that you are in the TVG vaccine trial. Please send along my fondest regards to Doreen, Dr. Salazar and Dr. Disis - warrior angels all.
Ellie - You have been on Herceptin for 4 years...ugh! Yes the side effects do accumulate - I think after 4 years I started getting canker sores in my mouth from it - then of course the sore joints, etc, but minor when you consider the alternative, right? I agree that there is a small subset of women who do not experience Herceptin resistance - I am not sure if I am in that group yet; but I will know more in August. An afterthought - keep up with your cardio, as you don't want a declining heart function to impede your eligibility for future treatments T DM1 or other clinical trials., right?
Michka - Stupid tumor is right - please tell me that you are NED now on TDM 1
And Sarah, thank you for chirping! Your puppy is adorable!!! In August, if my tumor grows, yes they will add to the Herceptin- how are YOU doing?
Wow this is almost as good as a girl's night out - all we are missing is a table and a few bottles of wine. It just warms my heart to see you all here and doing well.
xoxo
Kim (from CT)

Re: Mamace (Kim) how are you?
 

Kim
It was great to log on and see an "old timer" checking in.....sorry to hear your flying solo without super H didn't last....but glad Theynare keeping a close eye on you..I too rely on scans..tumor markers don't show accurarately for me...they are usually in normal range when I have something g going on....hoping the Herceptin will keep you in check without adding any drugs

stay in touch...we miss you

Re: Mamace (Kim) how are you?
 

Hey Mama

I am still here too and rooting for you.

Remember Atlanta!

Re: Mamace (Kim) how are you?
 

Hello Kim,
I am so touched that you can think of all of us when you are going through so much. but that's you and why we care so much about how YOU are going.stop worrying about us and concentrate on you and getting well.
Be well. This new treatment is encouraging.
Have a nice glass of red wine and some chocolate!!!
big hugs - we all need them
get well
lots of love
hey I expect you to visit me here in Provence! Ask Stephanie about how cute is my village and my dog!!!
love sarah

Re: Mamace (Kim) how are you?
 

Hey Becky! Yeah! You are still with us! A role model for all - I loved our time at ASCO in Atlanta - I still tell my husband that you are one of the smartest people I know! At first I thought...when my cancer takes a real serious turn (as if Mets isn't real serious...who am I kidding?!), I would call Becky. That is when I realized that I needed to crack open the books, analyze the journals and abstracts and instead of calling you , simply put in the effort and do what you do, instead. You are a real role model for me

Sheila, thank you so much for your encouragement - I can see by your signature that you have been around the block many many times. Your journey is a humbling inspiration for me.

Sarah - you are so sweet - I totally agree with you that when in crisis, there is nothing like a glass of red wine and chocolate.
I still wonder about your treatments and how you are doing. Be careful who you invite to Provence - you may find yourself with 100 Her 2 ladies at your door! All of you girls across the pond should come to the states and visit us! The lobster on our Connecticut shore is delicious!

Karen - it is Friday - I am watching my PM's and thinking of you.

Love Kim (from CT)

Re: Mamace (Kim) how are you?
 

Kim
Thanks for the reply about long term herceptin use and side effects. Interesting I have never had a sore mouth until recently so it made a lot of sense. I strongly believe that you will respond again very well to herceptin but I suppose your onc will want to add something if the pesky met doesn't go by your next scan. I also wonder how much impact the vaccine had on your immune system in fighting the cancer? I know we will never know but kind of makes you wonder.
Ellie

Re: Mamace (Kim) how are you?
 

Hello Kim,
Nothing better than northeastern lobster!!
Had my angioplasty and stent put in, chest pain gone but breathing still a problem but that's due to the fibroids or whatever they're called in my right lung, also due to radiation! I've known about that for a while but seems to have worsened along with having the chest pain. taking some new meds for it ( an inhaler) and hope that keeps it from getting worse, told no way it can improve but hey, I've got another lung and I can still go to the gym (pilates, yoga, t'ai chi - no heavey stuff) and walk and swim so no complaints! who can complain living in the south of France!!! Certainly not me. thanks for asking but I'm ok. now let's make sure you get ok, ok!!!
well if a bunch of you show up, come in the summer when I can put up a tent in the back yard because my house in small but cute!!
hugs and love
sarah

Re: Mamace (Kim) how are you?
 

I am so glad to hear you are active and in good spirits; although chest pain, angioplasty and a stent does not sound like a walk in the park! It almost sounds like you got a radiation burn to your heart muscle??!? I hate when these "against the odds" things happen, but here you stand, with a peaceful. " it is what it is" attitude. Thank you for your tranquil but determined outlook, it is an attitude I reach toward. I am glad you are OK.
XOXO love and hugs,
Kim (from CT)

Re: Mamace (Kim) how are you?
 

I hope NED shows up soon !! He is missed when he steps away for awhile.