Need Advise

Faith in Him · 01-06-2009, 10:16 AM

My onc has told me that he does not know when to take me off chemo. Last scans were clear and the cancer we were fighting on my chest wall has disappeared after hyperthermia rads. I will continue with chemo for now. My second opinion at UCSF basically said the same thing. Here are the questions I am wondering about:

1. Should I consider getting a third opinion?
2. Should I stop chemo but ask to continue on herceptin?
3. Should I consider a clinical trial for locally advanced bc? I do not currently have measurable disease so I do not know if I will qualify.

Thanks for any input you may have.

Tonya

StephN · 01-06-2009, 12:55 PM

Hello Tonya -
GREAT NEWS that there is NO measurable disease.

Seems at the very least, you should stay on Herceptin since it is working for you. How are your tumor markers, if they are a good indication for you??

Do you know of a trial for locally advanced disease?

Vic · 01-06-2009, 02:19 PM

Hi Tonya,

Sounds like you're doing really well now, which is excellent news. I think Steph gave you some good advice about the herceptin as long as you're doing fine with it. How have your tumor markers been reading? I ask, because I'm curious from my own perspective as well. Do they fluctuate wildly or are they within a certain range?

I had a third opinion when I first was looking into chemo and sometimes too many opinions can make things confusing. After doing the research and reflecting, go with your own instincts.

Happy 2009 and live it with gratitude and awarness,

Vicki Z

Bill · 01-06-2009, 07:46 PM

Hi Tonya! Glad to to hear the good news! I'm sorry I can't help with any chemo. advice though. I'm a big supporter of second and third opinions, but, like Vicki said, at that point it can become confusing, and possibly expensive. My own thoughts-in your case, if the third opinion differs from the first two, then you might have to get a fourth opinion. It can get crazy. We got many second and third opinions, but we always gave the most credence to the older and most experienced onc. in the case of a "tie". Having said that, our older guy did stay current and would often use a phrase that separates the men from the boys, "I don't know". He was/is in the top of his field, but still willing to admit that he "did not know" and we always trusted him. Other docs. would know everything and blow smoke at us from all different directions, but the guy that "didn't know" was always right. Just my experience, mind you, but it showed us he was an honest man. I'll be praying for you to receive an answer.

BonnieR · 01-06-2009, 09:23 PM

Tonya, what I am hearing from you is that your first 2 opinions both said they do not know when to take you off of chemo. So, really, you have not received any opinions on which to base a plan. I feel like you want to know what your next step is going to be when the time is right. You want to have a plan in place.
I agree that too many opinions can be confusing. I got 3 when I was deciding what chemo to do. All 3 were different! BUT, I learned a little more from each one. And got more clarity each time. I think I got better at knowing what to ask and how to weigh the answers. I am also a believer in what you might call signs from God. Little things you pick up along the way that point you towards solutions...
I hope you find what you are seeking. Keep the faith.

SoCalGal · 01-07-2009, 12:46 AM

Hi Tonya-
It seems that you have not been disease free for a year yet. I would for sure stay on herceptin. I feel like there are other ways to see whats going on inside. Tumor markers should weigh in and what about a CTC (circulating tumor cells) test. What about adding an extra week between cycles until you decide what to do? I guess ultimately you won't know if it will come back until you stop chemo and see what happens but I wouldn't stop herceptin. This stuff is so hard to figure out so keep getting opinions until you find someone who makes sense. Good news on the scan! Flori

Mary Anne in TX · 01-07-2009, 05:34 AM

Hi Tonya! I don't think there is an answer that has been proven out. I do agree with Flori that I would stay on Herceptin at least until it had been at least a year with NED. I think this is a really hard question because they haven't got the data to give us much input yet. I would have stayed on Herceptin longer if my insurance had covered it. I hope you'll get tons of feedback so that you can begin to decide what is best for you. Lots of love, ma

01-07-2009, 08:05 PM

I agree with everyone else about staying on Herceptin at least. However, you really don't have 2 opinions IMHO at all. Both don't know what to do? Why is this? Have either given you a timetable of when they think they will make a decision. For example, Flori said that you have not been NED for a year yet. That was a smart statement. So, is that when your doctors will think about no chemo and only continue with Herceptin? Are they going to put some box around when they think they can make a decision and what are they going to base the decision on (since you are NED now). Will they use CTC tests, Her2 serum tests and tumor markers to help determine this. And when they stop chemo (but I am hopeful they will continue Herceptin for a longer period of time) what will they use for surveillance? The same tests above and scans?

Also both doctors said the same thing with no plan. Is that really a second opinion? Maybe so but there is no plan. For the surveillance or any additional blood work/tests you might want run routinely - well, maybe you should come up with a plan that you are comfortable with and try to get them to determine why they are not comfortable to put a timeframe on this and see what happens when you hit that time.

As I see it, there really isn't a plan or an endpoint - and you aren't even Stage 4 and even the Stage 4 women on this board end up with Herceptin only at some point even if a couple of years go by and they have to have chemo again.

Have any Stage 4 women on this board been given chemo and then not get some forward plan when they are NED - such as "you are NED but we are going to give you 2 more months of chemo and then just Herceptin alone" type of plan?

Keep the faith, Faith. You are doing wonderfully. Its hard to not have a concrete plan with anything in life and this has to be hard cuz its not like chemo is any fun. Why can't it just be that you don't know when you're going to go home from a great vacation.

Love, Becky

Mary Jo · 01-08-2009, 02:25 PM

Hi Tonya.....

First of all I am so thankful you have no measurable disease. My first thought that came to mind when reading your questions was ... "if it ain't broke...don't fix it!" Of course I know you can't and wouldn't want to stay on chemo forever, (of course not) without a plan in place I wouldn't change a thing yet. Yes, I think I would get another opinion and I would want to see some type of plan put in place.......chemo...how much longer....herceptin (most definitely in my opinion) .... and how are they going to "watch" you.

Things are looking up Tonya. Praise God. I look forward to your next post and what you will have to say.

Love and blessings,

Mary Jo

Shobha · 01-08-2009, 02:38 PM

My 2 cents: Please stay on Herceptin for sure.
Chemo part is more confusing and feel inadequate to comment.
The great news is that there is no measurable disease! May god continue to bless you with good news.

StephN · 01-08-2009, 06:15 PM

Becky asked:

"Have any Stage 4 women on this board been given chemo and then not get some forward plan when they are NED - such as "you are NED but we are going to give you 2 more months of chemo and then just Herceptin alone" type of plan?"

That is exactly what happened in my case, when It looked like my liver was clear of tumor and only scar was left. My med onc wanted to give any cancer that may still be hanging around "the boot." I stiffened my upper lip and took 3 more weekly rounds, before staying just on Herceptin and adding Zometa.

To my mind that was not a bad trade off for a better chance to remain NED longer.

atdec05 · 01-08-2009, 06:45 PM

Hi Tonya,

I would think if you're still considered Stage 3 that at some point your chemo would end since only Stage 4 would be eligible for 'maintenance chemo'.

There are clinical trials for Herceptin vaccines for women with no current evidence of disease. I looked into this, but I decided I didn't want to deal with flying out of state to participate. Maybe there is one closer to you.

How do you feel about your current 2 opinions? A 3rd opinion could confirm the first 2, or give you a new direction. I assume UCSF is a major hospital; is there another one to go to?

I had 3 opinions when I had my local recurrence - all with different recommendations. One wanted to treat it as metastatic; one wanted to treat it like failure of treatment and start over; one wanted to treat it as an incomplete treatment and add on what I didn't get first time around.

It seems like you wouldn't be asking for input here if you felt comfortable with the first 2 opinions, so if you can handle the stress of going through another opinion, you hopefully will end up feeling better about the decision you make about your treatment.

take care,

Anna

Faith in Him · 01-08-2009, 08:37 PM

Thank you all for your responses. I do feel that I need to seek another opinion. My onc does not do tumor markers so I believe at this point he would just order scans. I have had a total of three scans. Once after dx, once after my recurrence and the last one just because he felt it had been awhile.

He did not mention keeping me on herceptin but I will definately ask for that. I am willing to be on chemo for as long as it takes but would like some kind of idea of when to stop. At this point, since I have never had, to my knowledge, tumor markers done, I don't know if they are reliable for me. So I don't know if I should push for them.

I have two major University next to me. UCSF and Stanford. Stanford will cost me $750 out of pocket but in the big sceme of things it may well be worth the money.

I'll keep you posted.

Tonya