Brain mets question

pattyz · 05-14-2006, 07:29 AM

2nd opinion: Sounds like an excellent plan, Susan.

The MRi done prior to any type of rads for brain mets is more specific, ie. using triple contrast and much smaller 'slices' of pics. This is the one that often shows more than the 'regular' MRi, and did in my case.

HOWEVER, if it does show more, they will be of small size and should not add too much to your total volume.

No matter what treatment plan you choose, it is ALL scary with brain mets.... but I have found that once again, most of my fears were unnecessary.

With your brain mets being small, I hope and do think, this will be what you find, too...

more good wishes,
pattyz

Susan2 · 05-14-2006, 11:02 AM

Thank you for your support and sharing your experience. I just can't believe that I'm here. I thought that passing my 5 year anniversary recurrence free was cause for celebration. However, just celebrated a bit too soon. However, knowing that others like you did it and I can do it too. Again, thank you.

Susan2 · 05-18-2006, 04:29 AM

Well, I had my MRI and there were a few more - very small, but there, nonetheless. Now, the dr. is really pushing wbr. However, he is willing to do smaller doses over a longer period of time to try to minimize damage. I am so torn.

I was hoping to get a 2nd opinion from Dr. Keith Black at Cedars-Sinai based on several recommendations from people on this website. However, I'm not sure that will happen. Today is the 5th business day from when I first contacted his office and I don't have a determination if he will even see me - much less an appt. time. My dr. here wants to start wbr on Monday. He says that right now I have no edema, but that could change at anytime.

This is so frustrating. Thanks for being there.

al from Canada · 05-18-2006, 04:56 AM

Edema can be treated, keep calling Dr. Black or show-up on his door step. Proper ediquate ends when your life is at stake. I remember Ginger Emprey , a 10 year survivor who almost died, recounting that she literally almost broke down a door, jaundiced and all, to get herceptin. If she hadn't done that.....we know the answer.

I'm sure that most of us here know that cancer is only half the battle.

Good luck,
Al

pattyz · 05-18-2006, 07:26 AM

Susan,

I know how hard this is, the decisions, the FIGHT to get the treatment you really want, the uncertainties...

These questions are important to what tx you have:

Are you symptomatic from your brain mets? To what degree?

Do you have extracranial mets? To what degree?

How is your overall health and normal life functions?

IF you are minimally symptomatic, have minimal extracrainial mets/none/stable, and have a good 'performance status' in day to day activities, you are most definitely a candidate to get a series of focalized treatments for your brain mets.

However, if you are not up to the fight this will require, or are too fearful of NOT doing WBR, then you have to try to find some peace with the WBR tx's. Ultimately, the confidence in whatever route you go is what's important.

Should you develope edema, Decadron will control that. And if that happens, we'll do posts on the horrors of Decadron again! But, it is VERY effective drug for symptom control of brain mets.

Still here for you...
hugs,
pattyz

Susan2 · 05-18-2006, 12:08 PM

Thanks for your thoughts and support. I've got to decide if I am nervy enough to fly across the country to show up on his doorstep without an appt. I would like to think that I'm brave enough - I'm just not sure.

I have no symptoms other than no reflexes in my knees. I play tennis and I walk regularly - so the lack of reflexes has had no impact.

I had a recurrence in a pectoral lymph node and what were thought to be lung mets last fall (they were so small that I refused a surgical biopsy). 6 months of Navelbine / Herceptin later, I was NED at my last PET scan. I continue on Herceptin.

The dr. is pushing hard for wbr because 1) at original diagnosis 6 years ago, I had more than 10 lymph nodes positive and 2) it apparently metasized to the lungs. He's concerned that because of the multiple mets there are more that are not visible on the scan. He's concerned that I will have an immediate recurrence.

Another option that he has raised is to drop the dose of the wbr and spread it out over a longer period of time to reduce the potential for damage. Conceptually, I like that idea. However, it seems to me that the cumalative damage is still there.

We are also exploring the various drugs to protect the brain during radiation. Al, thanks for the names. I'm continuing to research them and talking with the dr.

Thank you again for your support.
Susan

pattyz · 05-18-2006, 03:19 PM

Susan,

yes, the longer course with lower dosage at a time would be the way I'd have gone, hoping to get that drug in conjunction (brain fart leaves name a mystery...) to help with effectiveness. I'd also be looking at adding a low dose of Temodar which has been done in a small study with positive results.

yup, the concern is for quick recurrance. And that was true for me. But I was willing to risk it and then deal with it as it ocurred.

It sounds like you're in good shape! I think that will be to your advantage no matter what course of tx you pursue.

You're very welcome... When I was first dx'd with brain mets I spent a lot of time looking for others who could share their experience, since the documented numbers looked bleak. But their were few at the time; not so anymore.
xoxopatty

Annemarie · 05-18-2006, 09:04 PM

Hi Susan,
Tomorrow is my 6 year bc anniversary! I was diagnosed at 32 with Stage 3b er/pr positive and her2 +++. I have had single lesion brain mets 3 times since initial diagnosis. I will give you "my" best advise and that is to get the WBR. I did not do things correctly. I kick myself for not listening to my doctor. I even called the ACS and they faxed me studies indicating that WBR was the appropriate treatment. I also went to a teaching facility and the head of oncology told me the same. I am so stubborn and I punished myself for a long time by not following all of the doctors I consulted with advise.

The second brain met was so close to the spinal cord I had to have a spinal tap and they were almost certain it went into the spinal fluid. Well that was not the case -thank god. I did have RT to the brain half and half (which is not the way) plus Temodar. My brain function is almost normal. I suffer a little bit from memory loss but everything is pretty much normal. My hair is not as thick but I have my life. Everyone is different but I personally think I could have saved myself a lot of hard ache if I was treated as recommended the first time. Just my opinion based on all I have been through. I respect others right to choose other options. And whatever path you take I will say a prayer for you!! I go for a brain MRI tomorrow!!