Re: Sisters with Mets...should I stop Herceptin?
 

Kim,

I hope to be in your position one day with my oncologist asking me to consider stopping Herceptin. Wow! But it's a tough choice to let go of the security blanket, so I don't blame you for being nervous.

Joan

Re: Sisters with Mets...should I stop Herceptin?
 

Hi Kim -
Great to hear from another "liver mets" buddy that all is well after this period of years.

Sorry to hear about the blood pressure problem. Mine is still on the low/normal side, but my hubby has to watch his so I know about that.

Our brain mets were also about the same time, so I hope all will be well with you as with me.

We have not heard back from our friend Mamacz as to her final decision on stopping Herceptin. It gets easier, especially after the first 6 months when you get out of the routine of going for infusions.

Take care!

Re: Sisters with Mets...should I stop Herceptin?
 

Gosh it is a big decision Kim and i also think of Jackie(jhandley). "If it ain't broke, don't fix it"
Re Femara, i am nearing the end of it for me and i am terrified of going off it. I feel it has kept the cancer at bay and if i go off my oestrogen will cause a recurrence.
Good luck with your decisions.

Re: Sisters with Mets...should I stop Herceptin?
 

stephn,
your story sounds encouraging! by the way, did you ever take complimentary therapies along with your standard care? how about the other ladies in this thread?

Re: Sisters with Mets...should I stop Herceptin?
 

Hi Girls!
I love reading your opinions and ideas...and I am sorry for being absent for a while...I have this trouble of getting distracted with kids, holidays, sunshine...
StephN! How wonderful to see you and hear that you are still doing well! Is the wine store still doing well? And Kim! I feel like this is old home week and I am getting caught up with life long friends. I am just so darn happy that you both are doing well.
Yes, I did sleuth this out and here is what I found out. I spoke at length with Dr. Dang at Sloan. She has several her2 patients who are being maintained with mets. Her opinion is that yes, we can take a holiday from Herceptin. Many of her patients have stopped their Herceptin but they have all reoccurred at some point. Some as soon as 4 months and others have not reoccurred for 2 years. When she sees a renewal of cancer activity, she restarts the Herceptin and they continue to respond.
I am also worried about the radiation from all those scans. I have decided to stop the scans and go instead to tumor markers; traditional and Cell Search Circulating Tumor Cells. If one or both markers rise; then I will get a scan. Finally, I have decided to take the summer off from Herceptin from mid June through Mid September.
OK, enough yakety yak from me. While thanking God for many years of NED we will also have to continue to compare notes! I love hearing from you!
Love Kim from CT

Re: Sisters with Mets...should I stop Herceptin?
 

Kim
I think you have a great plan. I think it's well thought out and you are on the right path. I wish you the best, best, best, and that your markers never rise. You are an inspiration to us all.
Love
Karen

Re: Sisters with Mets...should I stop Herceptin?
 

Hi Kim
Good luck with your plan. I am really glad you have let us know.

Do you still get any side effects from herceptin?

Did Dr Dang give you any idea how long some of her patients have been maintained on herceptin?
My own onc says 5 years max which is why I tell him about others like you on the board!

I wonder if there are any stats about long term survivors that have stopped herceptin and not recurred? I am thinking of Steph and Andi BB?

Ellie

Re: Sisters with Mets...should I stop Herceptin?
 

Kim, I wish you the very best as you take your break from Herceptin. I hope that you have the wonderful results that I have so far. As I told you, my onc said that if it came back he and Dr Slamon agree that the Herceptin will take care of it. Have a great summer with your family. Best Wishes, Mary L

Re: Sisters with Mets...should I stop Herceptin?
 

Hi all,
Ellie - side effects with Herceptin? Yes - after 7 years....sore joints, nonstop runny nose...but nothing compared to the alternative; right?!

Dr. Dang has "many" Her 2 patients with mets - although I didn't ask her for a count.

However if you really want to feel hope beyond belief; attend an annual meeting of the MBCN group (www.mbcnetwork.org). The conference organizers start each annual meeting by asking for a show of hands...how many have lived 1+ years with mets; 2 + years, 5 + years, 10 + years, and yes they go up to 15, 20 and even 30+ years. That moment ... looking around the room and witnessing all the angels who live everyday lives with this is a simply hope filled moment of bliss and well worth the annual trip.

And Karen, hang in here with us. It sounds like you are getting good treatment and so far have had a positive response.

Love and Hugs,
Kim from CT

Re: Sisters with Mets...should I stop Herceptin?
 

Hi Kim
Thanks for responding and for the encouragement.
The reason I asked was in my own informal way I was trying to figure out if side effects were an indication that herceptin was working.
I am also very encouraged that your mets were also er/pr- which according to all the literature suggests holds a worse prognosis.

I will be keeping everything crossed for you over the summer whilst you have your herceptin break.

Hugs
Ellie

Re: Sisters with Mets...should I stop Herceptin?
 

Hi Kim and Everyone!

Well..... I saw my Oncologist yesterday and I have his blessing to STOP the herceptin. I'm still a little giddy, and overwhelmed at the same time.

The plan is to do Tumor markers and Her2 Serum in 6 weeks, and see how things are at that point. After almost 10 years of getting my Vitamin "H" every 3 weeks, I haven't quite processed how I feel about all of this. I unexpectedly burst into tears twice yesterday, just feeling overwhelmed by what seemed to be this monumental decision I've been pondering for so long.

I'm going to stay on the Femara for now. If I'm able to stay NED without the Herceptin, we will consider dropping the Femara next year, as it will have been 10 years for it too.

Kim (or anyone else) , can you tell me where I can find out more about the "Cell Search Circulating Tumor Cell" test you spoke of ? I would like to use all tests available to monitor things without having to do more scans.

I'll keep you all posted on how things go.

Kim in CA

Re: Sisters with Mets...should I stop Herceptin?
 

Hi Kim...
This is OVER THE TOP news! It sounds an awful lot like maybe you have...dare I say it.... a cure going on....WOW!
I was thinking the Cell Search CTC is the same as the HEr 2 serum test...but after some sleuthing, I see that they are different. I am copying information on the Her 2 serum test to bring to my oncologist. If you would like more info on the Cell Search; this is it:
http://www.veridex.com/cellsearch/Patients/FAQ.aspx
Good luck! Let's stay in touch periodically if things change...
Love Kim from CT

Re: Sisters with Mets...should I stop Herceptin?
 

I don't have any advice to offer i just wanted to say Kim: you're amazing!
-sue

Re: Sisters with Mets...should I stop Herceptin?
 

Hi Kim;
Just chiming in to wish you well on your summer off with Herceptin. What great news!
Hugs,
Kris......

Re: Sisters with Mets...should I stop Herceptin?
 

Hi Kim and Kim -

We have all walked a long time with this disease and been here to chat coast to coast about how we are and how we feel about that.

The question about Dr. Dang's response was "how long had those patients who recurred been NED on Herceptin?" Were they in OUR league, or are they a good comparison?

People stop taking their drugs for a variety of reasons, so such a very general answer leads to more questions.

Anyway, enjoy the summer away from your medical center, and focus on families and fresh air.

Re: Sisters with Mets...should I stop Herceptin?
 

So happy for both of you, I have done very well for 3 1/2 years and just had my scans run and everything was fine. I wish you both the best and hope you stay ned. Have a wonderful summer. Mary L

Re: Sisters with Mets...should I stop Herceptin?
 

Hello, I am new to this thread. wanted to ask StephN, Mary L how are you doing as we are now in the end of Sept 2011. Are you still NED? I 'd love to hear from you as you are an inspiration to a lot of us here. Also, i haven't seen any more posts from christine the founder of her2, i just hope that she is doing well while she is off herceptin too. PLease let us know.
Thanks
Ema

Re: Sisters with Mets...should I stop Herceptin?
 

Hello -StephN here,
I am traveling so just found this. My checkup in August could not find any trace of active cancer. It is now getting close 3 years since I have stopped Herceptin, and feel very well.

Christine is also doing well cancerwise, last I spoke to her. So, that makes two of us.

All the best.

Re: Sisters with Mets...should I stop Herceptin?
 

Kim and everyone else on the board,
Thanks so much for posting. It gives me so much to look forward to, I am almost in tears. I too am stage IV and want more than anything else in the world to become NED, and one day stop treatment so I can expand my family, as I am only 30. Kim, please stay in touch with the boards so we can all continue to hear your journey when and if you stop herceptin. My oncologist, like yours, says that after an extended time of NED, it is okay to stop treatment. I have nothing else to offer except that......the more women that take that scary jump and get off herceptin or what ever treatment..... the more doctor's will learn and hopefully one day millions of women will be able to avoid excessive treatments after becoming NED.

Not to take the decision out of your hands or to belittle your own judgement.... just something to think about. Even though its not a clinical trial (to end treatment) its still an important clinical question to answer..... how long.

Re: Sisters with Mets...should I stop Herceptin?
 

did jackie die?