Last herceptin tomorrow!

emmastarr · 11-07-2011, 09:15 AM

Hello everyone!
I have my last Herceptin tomorrow and am absolutely petrified about not having it anymore. Did you all feel this way? I am relieved however to be at the end of active treatment, which has not been at all easy, juggling two little boys and teaching high school kids part time!! Quick question- for you highly ER+ ladies in the US, is Zolaex/lupron offered as standard to close down the ovaries? It doesn't seem to be offered routinely here in the UK. I just want to make sure that I am doing everything that I can as I was highly ER+.
Also, do you normally get scanned when Herceptin finishes to check for sure that you are NED? When I asked my Onc if I was in remission, he told me that I was cured- I took that with a pinch of salt as I have read on various sites that you cannot be cured from this- is that right?
Thanks in advance for your excellent advice. Emma xx

BonnieR · 11-07-2011, 11:41 AM

Hi Emma! "Cured" is a big word that means different things to different people. But it sounds like a great word to hear from an oncologist! My onc told me I was cancer free. She told me to just go about living my life. And that is what I suggest to you, even though it seems surreal somehow! Because it is a new normal we have to adjust to. I felt like I should be DOING something still to keep cancer at bay! But we have DONE it already.
What made the end of treatment final for me was throwing an "Independence from Treatment" party. (It was around July 4, Independence Day here in the states.)
I dont receive any scans routinely. Just lab work including tumor marker. Cant address the ovary situation.
Anyway, the jury is still out whether we are "cured" or not. It has not been so long that Herceptin has been given to early stage cancers. We need to be followed to see the long term results.
So just try to find the joy in the NOW. What a blessing to be cancer free! Keep the faith

snolan · 11-07-2011, 12:22 PM

Congratulations; I finished in Aug and felt the same way, very scared at first but have settled in. I haven't had my first check up with my Dr yet so I don't know what is planned, guessing just blood work. My Dr told me I will always be considered to be in remission until the day I die from something else they can consider me cured from cancer. I'll take a life time of remission any day. Congrats on your milestone, here's to many more years of "cured" for you.
Suzanne

Kellennea · 11-07-2011, 01:31 PM

Congrats Emma! I finished my Herceptin last Wednesday... Everything you are feeling is totally "normal". I still feel that way

When I was originally dx, my oncologist had me fill out a bunch of paperwork and one of the forms was regarding treatment. One of them was a sign-off on treatment and at the very top of this documant it said "treatment for cure of..." and there was a check mark next to it. My oncologist told me back then that we were going for cure. At my last herception visit she used the word "cured". I'll take that with a grain of salt as well. My next follow-up appointment is on the 28th and then I will do 3 month check-ups. I asked for a PET scan (just to make sure everything was a-okay) and I was told that scans were not used for patients that had clear nodes. I think that kinds stinks because HER2+ is so sneaky. I do get chest MRIs yearly and mammos every 6 months plus blood work every 3 months (including tumor makers)

I am currently taking Tamoxifen to shut down estrogen production.

So, yay for you! Everyone kept telling me to celebrate... I finally felt better after I did

k

Jackie07 · 11-07-2011, 04:32 PM

Congratulations! Emma.

Your doctor's statement was probably based on his experience and the fact that your bc were caught in the very early stage. The size of the tumors were very small - better chance for chemo/Herceptin to wipe them out. You have completed the whole regiment of the standard treatment. It's great that your doctor felt confident enough to say those magic words: "You are cured!"

However, don't let your guard down. As one of my neurosurgeons stated: "People who have one type of cancer is more (than others) likely to have another type of cancer..." Enjoy your life and keep all your appointments. Pay attention to your health and always make sure the scans/tests are being read correctly...

Congratulations!

'lizbeth · 11-07-2011, 06:15 PM

Yeah! Congratulations on finishing Herceptin. The time after this treatment was the toughest for me. I had lost my "safety net" of Herceptin.

I dealt with it by finding every other way I could reduce the risk of re-occurrence, nutrition, exercise, vaccine trial. I've been very lucky and this month is my 4 year cancervesary. I have remained NED and feel very, very fortunate.

Plus I promised my doctor I'd follow the 2 week rule: 2 weeks of symptoms before I bothered him about a little ache or pain - it was my rule not his. Most things didn't last, and I stopped worrying.

Wishing you the best health!

Becky · 11-08-2011, 06:18 AM

Although a happy day, it is also a scary day too. You will think about it for awhile - especially three weeks from today when you say, "I should be getting Herceptin today". Remember that Herceptin has a long half life (25 days) which means that 25 days from today, half will still be in your body and 25 days from then, 1/4 will be in your body. It takes 4-6 months for it all to be gone so it is still in there working for you.

So, by the time it is gone, you will be getting used to your new "no cancer center" life. It will be a new normal for awhile (2 years or so) but you will start being your old self soon. Life is good. You will be fine and we are all here for you.

emmastarr · 11-08-2011, 09:11 AM

My infusion has just finished!! My nurse has just left. I would like to thank you all for your messages, you always make me feel better.
I agree, Becky, it will really hit me in 3 weeks time when I don't get my fix- will have to make sure I have something nice planned to take my mind off of it! Becky, I did read somewhere that you mentioned what supplements you were taking and dosage- did your Onc recommend them/is it something you have read about? Sorry to be nosey!!
Lizabeth- I have already started taking supplements, follow an organic diet, stopped eating red meat, doing some exercise, drink lots of green tea but do fall off the wagon occasionally and have a glass of organic red wine. Not sure what else to do on the staying healthy front! My doctors don't seem to give much advice on this!
Kellenea- it's good you have such regular testing. I will see my Onc next week, then won't see him for a year, no blood tests, or scans which freaks me out. I might pay privately for a scan to make sure all is OK. It looks like your docs in the US are much hotter on keeping tabs on patients when active treatment is over.
Again, thanks so much gals. Lots of love xx

JillaryJill · 11-24-2011, 02:24 PM

My last Herceptin treatment will be December 22, 2011. For a while I had all kinds of anxiety and was asking my onc about clinical trials for Tykerb etc. to extend my treatment. She sort of lectured me and told me, there is less than a 10% chance I will get this back with all the treatment I had. She said, they threw the book at me and she treats a large number of early Stage er,pr-Her2+++. The cure results have been excellent. Somehow I have been able to mentally "give up" my anxiety about my Herceptin ending. Holding onto more treatment options would prolong going on with my life. I have decided to go on with my life and not spend one more day worrying about getting this back.