totally cunfused about treatment protocal

We had our discussion with our onc about treatment options for Linda’s liver mets, now in stable disease. She is on Navelbine and Herceptine weekly, which saved her life, but after 12 weeks has shown improvement and stalled in “ no disease progression� on her ultra-sounds. (We live in Canada) Her blood work-up and liver functions have shown constant improvements, from jaundice 12 weeks ago to normal, today's results. I told the onc that "no disease progression" is not the outcome we wanted because it precludes other therapies such as RFA. (her tumor is still to large for RFA.) We suggested to get the ball rolling, let's add another chemo drug such as Iressa or Gemzar, and get the mass down to spots. His response was that he doesn't want to use-up potentially effective chemotherapies on a questionable and non-approved treatment, (RFA). I asked him when he would switch chemo’s, when she started getting worse? He agreed. I suggested that there have been fantastic remission (NED) results with RAF; which have been posted on our message board; he replied that he knows of not one case where this has happened. His comment was that BC is systemic, where abatement only delays the inevitable.
I phoned my contact in Indianapolis and she basically concurred with our onc's. assessment: why use-up valuable chemo’s now, when you don’t need them and instead of the time when you need them during disease progression? (In other word’s, stay on the Herceptine and Navelbine until disease progression) Further conversations will soon take place between our Cambridge onc and our other one in Toronto.

Is RAF an experimental treatment as he said? What are the success rates and, who knows; is it available in Canada?? If RAF is credible, I need hard evidence as well as where the treatment facilities are, or else we will get no-where. He also challenged the accuracy of a PET scan as opposed to an ultra-sound for diagnostic purposes.

Please don’t misinterpret what I am saying: there is no professional slander here but I only want what’s best for my wife.

All info. appreciated,
Al & Linda

Al,

I don't know about the RAF, but I DO know about the PET v. MRI for brain scans. I believe I recently read something about this on the American Brain Tumor Association web site. I found it through google.

You know what I'm going to say...get another opinion. As far as RAF, my onc also isn't big on it. Especially when a person has mets in other areas. I don't think this is unusual. But I do know it can certainly be effective. Good luck on find hard data.

Love and light,

Lisa

Al, I don't know if this will help your cause or not, but here's a link to a page from Regence's Medical Policy regarding RFA. Regence is a LARGE insurance company here in the U.S., also happen to be my insurance company. There's a list of references at the end of the page, I think some are of studies done, which are mentioned in the text. Hope this helps.

As far as I know liver ablation is being done in vaious centers in the U.S., but has not achieved a standardized method of treatment because it's lack of reliability I asume. I've heard of sucessful treatments that have relapsed, which seems to be the overall problem. More research will make this form of treatment more reliable in the future. As long as her cancer is stable, you need to take a wait and see attitude. But if there are indications of progression, there are other chemo's worth trying to stop it again. Check out one of the platin salts w/ herceptin. Ask the Onc what would be his next line of therapy if needed.

Sorry I sent you my reply w/o my name.

Al,

I too had liver mets which totally resolved using weekly taxol/carboplatin/herceptin treatments. Very easy to tolerate and has me NED. As far as RAF goes, remember that your liver cleanses the blood and as such the cancer cells have been/are circulating throughout your system. Successful resolution of liver mets through RAF may take care of the liver, but does not address the necessity to continue some sort of treatment to prevent the remaining cancer cells circulating from taking hold. Having said that, I would make sure I continued on a chemo plan after successful treatment via RAF. I too have read about success stories but my onc is not too impressed with it. As it turned out for me this time around it was not an option I needed to seek out. Best of luck to your wife.
Kitty

Hello, fellow Canadian and not too far away- I am in London.
I hear your frustration. We read so much of things like RFA, gamma knife, stereotactic rads and it does not seem that it is a readily available option in Canada.
Having liver mets myself and reaching the point fo stable disease as a result of weekly taxotere and herceptin, I elected to stay on just herceptin since I was sick and tired of being tired so we dropped the taxotere. I agree with your onc about leaving options open until you need them. My sister was on Iressa as a study drug for a brain tumour and broke out in a nasty @#%&@ rash from the stuff and it did nothing for her. It too is a targeted growth factor type drug. Everyone responds to everything differently. I do not know a whole lot of info about RFA. I liked someones post about the liver's role in our body- NED in the liver does not gaurantee an end to progression, indeed the disease is systemic.
I guess the best thing is to do what you need to do. I have always had a 'no retrets' attitude,I did not want to look back and say- what if I had done that, so keep on doing what you are doing-seek info to help you with choices.
I have a great onc hear in London and I trust him implicitly to give me the best direction.
As far as PET scans are concerned, I know little there too, I know we discussed it. My onc is a firm believer of using consistent tools for assessments- I think there is good value in that, then you are always comparing apples with apples.

I am glad that you are going to bat for your wife- she needs this so much. I am blessed with such a husband as well!

Al wrote: "We suggested to get the ball rolling, let's add another chemo drug such as Iressa or Gemzar, and get the mass down to spots. His response was that he doesn't want to use-up potentially effective chemotherapies on a questionable and non-approved treatment, (RFA). I asked him when he would switch chemo’s, when she started getting worse? He agreed. I suggested that there have been fantastic remission (NED) results with RAF; which have been posted on our message board; he replied that he knows of not one case where this has happened. His comment was that BC is systemic, where abatement only delays the inevitable."

I sure "hear" your frustration after this onc visit. Since my med onc did not take the view you were subjected to with me or his other patients that I know, this gets my dander up. The plan with me and his other patients is "let's see if we can chase out those mets and get it down to micro-disease that is easier to manage with Herceptin, hormone suppressors, etc." I have a hard time understanding this "wait and see" attitude. There ARE other drugs besides Iressa that HAVE some positive track record that could be added and very possibly would knock the tumors down a lot more.
Waiting for a person to get worse, and THEN adding another drug is a two-fold problem. The cancer has a chance to take further hold, and the patient is more debilitated from long treatment already.
This is a situation when yet another opinion might give you another path. Your wife is more than just "another patient" - she deserves a fighting chance. Keep up your search.

Thanks to all who replied to this very complex situation. It's been almost 10 months and I'm finally coming to grips with the fact that this is a systemic problem that isn't going to go away in any hurray. We are getting our second opinion / conference this Wednesday at Sunnybrook Womens' Hospital in Toronto. I'm starting to wonder if I am rattling all these cages for Linda or myself, wondering if the writing isn't already on the wall.

Thanks from a fellow Canadian, practically neighbours! Your response was very insightful and helped clear my mind.
On a side bar, herceptine + Navalbine is very well tolerated, lttle fatigue and more effective that herceptine alone. Ask your Doc about it.
Thanks,
Al

Dear Al,
I sense a feeling of saddness and defeat in your last message. Please don't give up hope. I know it is very hard to keep fighting, but you hear so many stories where situations have totally turned around. Please know that you and Linda are in my prayers. Best of luck at your appointment next Wednesday.
Leslie

Hi Al, I understand your frustration, some oncologist are so intelligent they just don't understand the obvious, it is like saying don't fix the little whole in the bucket until it gets biggrt. We are continually told that we have microscopical BC cells in our body and something may trigger them, why can't they get rid of them before they do start up, a bit like termite prevention. I am glad I have an onc who listens to me, I suppose considering I should have been dead years ago, he so eloquently put it, to one of his assistance who told me, but because of this site I am not, and he tells his staff to do what I say and he passes all of our knowledge onto his assistancts and other patients with their treatments, weather they are proven or not by our standards. Keep on keeping on, just like the energizer batteries, we can do this.

Love & Hugs Lyn

Hi Elisabeth from London,
Are you aware of any Canadian facilities offering RFA?
Al