Going off herceptin/info please

[JKrak1975]

I will be going off herceptin in March after 1 year for stage lllA, her2+++, er/pr - with 8 of 18 nodes +. Now...what has been your experience when going off treatment? As you might expect, I'm scared to go off. Feels like I'm giving up my safety net. Anyway, those of you that have gotten treatment for stage 3 or less, what happened? Did you stay cancer free? Did you have other effects? Did you have your port taken out? (BTW - I just had my 18 mo. mamms and all are clear:-) Surgeon says "Pull the port! Healthy people don't need ports!" But I'm afraid to take it out as well...but I'm anxious to get back to life at a relatively normal way. I'd like to hear your stories! Judy

[Mickey]

I had my last herceptin last January for stage III. I had my port taken out in June and in November had recurrance to lungs and brain. Sorry. I am sure this does not happen to all.
Mickey

[Margaret]

Hi Judy,
I was stageIIIb,her2+++,er/pr-, with 16 out of 16 nodes positive in Nov.2001. I did 8 rounds chemo, full radiation and then 1 year of herceptin and now I am completely NED! I take no medicine and I feel healthier than I have in 10 years. What works for me is having as healthy a lifestyle as possible. Eating well (lots of fruit and veggies) exercising ( I love yoga) and taking care of myself emotionally and spiritually and finding as much joy as possible in my life. There's no guarentee for anyone in this life but I choose to use my cancer as a 'wakeup call' to myself. I 'woke up' to my life and plan to make the most of any day I'm given. I now see life as truly a gift and each day that is given I want to feel grateful for and live it to the fullest. Good luck to you. I hope this is helpful.
Margaret
margv@san.rr.com

[micheleu]

Judy,
I am finishing my one year of Herceptin Feb 18th. I am scared also to go off. I was wanting to try to get my insurance to pay for it, but i'm looking into a vaccine trial and i have to be off of it for a month. I think it is scary for everyone to stop tx. Then we have to just "live" without our lifeline. There are lots of gals that are 4 years out now without recurrence. I would love to hear and talk with you, my email is mulmer@mainstaycomm.net

[Kristen]

Hi Judy,

I went off Herceptin in Dec. I was stage IIIb. 3/12, er/pr-. I was so scared. I started getting scared a couple months before it came. The things I was scared most about was that I wouldn't catch it if it came back, but I have my tm going and check ups every 3 months and mams and scans every 6 months. I had a masectomy and just recently had my recon. and in my mind it just did something for me. I felt like I didn't have a daily reminder that I didn't have something. It just did a number on my mind, which has been great!

I am in a good place and just continue to tell myself that I need to trust my body and be vigilant and that is all I can control. I am happy that it's over and yes there are times I get scared still, but not like I was. Life can return to normal for whatever normal will be for us. They say the farther you get out the less you think about it. I hope you have the same experience. Mine has been good. Take Care. k
ps, i still have my port in, just not ready to take it out yet. When the time is right I will know and will have it done.

[JKrak1975]

Mickey...I was sorry to hear about your mets. It IS the information that I wanted to hear though. Just to get a feel for where people are. I wish you well on this journey! It will help me figure out what I should do about the port. There certainly are many women here who have hung in there for a long time. Are you back on herceptin now?

Margaret and Kristen....that is just want I wanted to hear as well! Your celebration of life is so affirming! I love that. We sure have come to see our lives in a very different way.

Michele...you and I are taking this journey together. I'm glad that I have someone to connect to.

Question...did your insurance pay for you to have your ports flushed monthly? Someone suggested to me that they might not:-( I'm anxious to hear from all of you who have gone off herceptin no matter what the result. The only way to make informed decisions is to be informed!!!!
Judy

[Audrey]

Dear Judy,

I was diagnosed with Stage III breast cancer in July 2001 (age 36) with a huge tumor, Her2+, ER/PR-, 11/24 + lymph nodes. I received A/C, weekly Taxol, radiation and 52 weeks of herceptin. Now it is Jan 2005 and I remain NED! I still can't believe it hasn't come back and have kept my port --just can't seem to part with it! I guess I'm being superstitious that if I take my port out, that's when the disease will come back and I'd have to have it put back in again. Anyway, I was also scared to go off the Herceptin, but my oncologist convinced me that one year of it might be an optimal dose in the adjuvant setting. She told me that years ago when they were testing the safe amounts of giving chemo, the researchers thought that if one year of chemo was good, then two must be even better, but then it turned out that two years of chemo was too toxic for the patients and decrease the time to six months was even better....so I'm happy to remain part of the clinical trial to see if one year of Herceptin is a good amount of time. I still go in for my port flush every 6 weeks or so and it is covered by my insurance. Plus, it gives me the chance to visit the wonderful nurses & staff I became friends with during the weeky visits... I hope this information is helpful to you!--Audrey

[*_anne_*]

Hi Judy,

I am glad to see so many positive resonses. My mom has the same dx and will be going off the Herceptin in September. She is due for her 1 yr. mamo in one month and asked me last night if she should worry. I don't know what to tell her. I am glad that it worked out so well for most of you. Mickey, I am sorry about your progression. Unfortunately there is no miracle drug yet? Judy, I am glad to see that you are looking for a vaccine trial. Please let me know if you find one. Most of them that I know of will exclude you if you have had adjuvant Herceptin. I am looking into some private company's vaccine, as scary as that sounds but I think the more stuff you can have early, the better. My mother is doing yoga and has chaged her lifestyle. Organic stuff may be very important to cancer survivors. I wish you the best of luck and the very best of health.
Love
Anne

[JKrak1975]

Audrey...that is the best news yet!!! You certainly lifted my spirits about this. I so much appreciate your reply and congratulations on the success for your treatment. I think my oncologist would agree with yours. He actually wanted me to go off at 6 months. He...the guy who give you enough chemical to kill you and hopes the cancer dies first....doesn't like pharmacuticals!!! Doesn't give anything that isn't medically necessary.... I chuckled at your comments about your port as well. I DO feel like it is a part of me...and my protection! Is that sick??:) I'm glad I'm not alone on that! Thanks also for the info about insurance. Someone had suggested the insurance may not pay for the flushing...I'm glad that yours has done so. All of you have made me feel hopeful a future after herceptin!