Need help in my arguments

Sherryg683 · 09-28-2007, 11:06 PM

I go to see my oncologist in a couple of weeks. He kind of shocked me the last time by mentioning that it was time that I stopped all this" I think the Herceptin I've been taking weekly for almost 2 years now". He's usually pretty good about giving me what I ask for but I'd like to have some strong arguments to put at him as to why I should stay on it forever (or until it quits working), I am stage IV. My first question to him will be...Oh are you saying I'm cured? Of which of course I"m not. He always says that he's never had a stage IV breast cancer patient stay disease free as long as I have with no slips...that will be another arguing point.Can any of you give me some better thoughts on this. Maybe something that other doctors have said or written that I can have all gathered together when I go in. I am not and will not be getting off my Herceptin, I feel I need it like a diabetic needs insulin. Just want to have my guns loaded so I can blast any questions he may have about how effective it is to stay on Hercepton indefinately..sherryg.

SoCalGal · 09-29-2007, 08:08 AM

Not to add to your plate, but I would switch oncs.

He does not sound very supportive. What are his reasons for taking you off? He needs to make a case to stop treatment MORE than you need to make a case to continue treatment.

STAGE 4 - NED on Herceptin - that says it all.

Seriously, please consider another opinion and another ONC if possible. Maybe there is a reason none of his patients are around. He sounds like an idiot. Sorry, it just seems crazy that you should feel you have to go in to your DOCTOR with an argument for a treatment course that is working and is well-tolerated. ANDIBB has been on Herceptin for years. I know my onc told me some woman stay on it for 6 or 8 years.

Channel some of my cranky mood towards your doc

xoFlori

Jean · 09-29-2007, 09:11 AM

Sherry,
"If it an't broke don't fix it"

Are all your test coming back well, such as Muga etc.
Christine has been on herceptin for over nine yrs.
I don't believe there are any studies out on woman
who have been on herceptin for multiple years?
Why is your onc concerned?

I certainly understand why you would demand to stay
on herceptin. I would get another opinion ASAP!

I am very happy for you that you are doing well on
herceptin and remaining NED! Yahoo!

God Bless,
Jean

tricia keegan · 09-29-2007, 02:36 PM

Hi Sherry
I'm too early in this "journey" to have arguments to help you in your case but in your shoes I'd change onc's before I'd give up herceptin.It's obviously working for you so do what you must to stay on it!!

lilyecuadorian · 09-29-2007, 03:42 PM

i AGREE with FLori ...if she is no going to let used herceptin (who got you NED) I will give my reason and check with another doctor (dont let nobody to take you out of your herceptin ) that is my opinion

Becky · 09-29-2007, 06:04 PM

I also have to add that besides this board, there is nobody at my cancer center that is Her2+ with metastatic disease that does not get Herceptin every week (or the triple dose every 3 weeks).

I would not stop Herceptin. Ginger Emprey has been on Herceptin 18 years (she was in the original trials). Tell him you are not ready to quit and evidence points that you may be on Herceptin for life. That's it! You need to stay on it. You can call Genentech and ask them what their protocol is for metastatic disease in remission. They will tell you to stay on and then ask your onc why he is going against the drug labeling.

anne2 · 09-29-2007, 06:09 PM

Hello,
I am glad you are going to argue w/ your onc. I think 5 years NED for Stage IV may consider stopping Herceptin. I think StephN talked about it sometime ago. DOn't forget the stupid ins. cies who think that they are paying for your Herceptin for nothing. I wonder if that is running through some people's heads. I would have to agree with if it aint broke don't fix it. You can always get a second opinion from another onc.
Hugs.
Anne

Sandy in Silicon Valley · 09-29-2007, 07:10 PM

Hi, Sherry -

I can't imagine what your onc is thinking, in stopping you after 2 years... was your metastasis very limited to begin with?

Here are the only 2 reasons I've heard of, for stopping Herceptin during tx for bcmets: 1) the metastasized bc has become Herceptin-resistant, and is progressing despite the patient being on Herceptin; 2) LVEF is dipping, and patient is at risk for congestive heart failure.

I've been on Herceptin for the 4.5 years since my mets dx. Even though I've had very indolent progression from the neck down (one still-small lung met, no symptoms), I have had 3 brain mets - possibly a fourth, which we're following to see if it's actually radiation injury or mets - and if Tykerb I started in July will have any effect if it's the latter. Still, since Herceptin has been working so splendidly for me neck-down, I didn't want to stop taking it, when I started Herceptin, and my onc was able to argue the "medical necessity" of both as my current tx (no chemo since July 2006!).

I don't think it's reasonable, given your current status, to discontinue Herceptin - now or ever, if it keeps your mets NED or stable, and if it works in combo with chemo, if you should have a progression in the future.

Maybe your onc is thinking of putting you on Tykerb instead? Or Sutent (a pan-kinase inhibitor predicted to be FDA approved for advanced bc in 1st Qtr 2008)? If it were me, I wouldn't mess with a good thing, to try something new, that doesn't work for everyone!

Wishing you success convincing your onc, or getting a second opinion to back you up, or if all else fails, finding a new onc!

(((hugs)))
Sandy in Silicon Valley

Sherryg683 · 09-29-2007, 09:56 PM

I don't know exactly what he was talking about when he said that. I assumed it was the Herceptin although he was the one that told me I would be on it indefinately. Maybe he was talking about the scans every 3 months or maybe going to Herceptin every 3 weeks as I have been doing it weekly. He is a very good doctor and open minded. I have pretty much told him what to do this whole time. Every time I wanted a scan done, I've told him to order it. He always does what I ask. I can't imagine him refusing the Herceptin, especially when my insurance is no issue here. I think he just sometimes says things off the top of his head and probably won't even remember he said that to me next time I go. It just frightened me that he would even consider it. I will definately let him know that I want and plan to continue it and if he give me any problem at all I will go to someone who will administer it..sherry

Chelee · 09-30-2007, 12:19 AM

Sherri, Lots of good advice here, but I think Becky stated things rather well. Since you like you onc and he was probably just testing the water to see if maybe you wanted a break or something? Or maybe as you said, he did say its time you stop *all this*. What's ALL THIS? Maybe someone whispered in his ear how expensive your getting with the 3 month scans and herceptin. Maybe all he is hoping for is you cutting back on the scans to every 6 months? Who knows what was going through his head at that moment?

If your onc *does* want you to stop your herceptin at your next appt., I seriously don't see any problems if you tell him almost word for word what Becky quoted you.

She is just stating facts and I can't see how your onc would even bother to try to go against that. Becky nailed it. You've been doing so well for far to long to change things now. (No way.) Good luck and let us know what he says.

Chelee

Sheila · 09-30-2007, 05:03 AM

Sherry
I have been on Herceptin for 4 years straight, and even when I have been NED during the 4 years, my onc. would never stop the Herceptin....it is like maintenance....oil for the car! Tell your onc. to keep you on it or find a new one!

tousled1 · 09-30-2007, 04:00 PM

Sherry,

If Herceptin has been keeping you NED all this time then why would your oncologist want to risk taking you off Herceptin? There are quite a few women on this board who are on Herceptin "maintenance." If there is no problem with your insurance company continuing to pay then I see no reason why your oncologist would even consider stopping the Herceptin.

JerseyGirl · 09-30-2007, 06:13 PM

Hi Sherry
It's weird, I was just thinking about you the other day, hoping you were still well. I always enjoyed your posts.
I'm afraid I'm in the other camp here. I was on Herceptin from Aug 06 to March 07; had to stop because of the muga scan. I was NED since Sept 06. Had another muga in May and a CT. Both were fine. I wanted to go back on the Herceptin because I felt like it was my force field, but my onc said no and he had some good points. And everything he's done for me has worked beautifully, so he's hard to argue with. Anyway, he said first, we're not sure if the Herceptin is what is keeping the cancer at bay. No one knows that for sure. Second, having progression on treatment is much worse that having progression off treatment, because then it means the treatment failed. Ok, I get that too. Third, no one knows the long term effects of Herceptin and if you can stay NED without it, why use it until you need it. All that said, I've stayed NED even after stopping the Herceptin in March; actually today is my first anniversary of NED. And I must admit, I feel a whole lot better being off it. It's amazing what physical quirks I can now chalk up to be on Herceptin. I know it's only been 6 months, but I'm hoping to stay this way for a bit longer. You've got a whole lot more NED history than I do, but I just wanted to let you know he's not the only onc that feels the way he does. Mine won't give it back to me until I have progression; I argue that theory now and then, but I do get his points. I'm so happy you're still NED; congrats no matter what you decide!
Julie