Help! Need info re:new brain mets

[Jackie]

Happy New Years to everyone! Unfortunately, mine is starting with yet another issue to deal with. Seems like something always happens to me this time of year, but at least this year it was AFTER the holidays. I found out today that a suspicious area in the lining of my brain has thickened and needs treatment (I had gamma knife last June for 2 lesions that are now gone). As I was looking at the films on his computer with the dr, I wondered how such an narrow, elongated area could be treated stereotactically. The answer is that the recommendation is to treat it chemically with methotrexate, which requires that some sort of port has to be "installed" in my head for access. I don't know yet what the schedule of treatment is (weekly, monthly, etc.), but I guess will be in addition to the chemo I am receiving monthly now for bone/skin mets. The rad onc couldn't answer many of my questions, but this is the first time I've even heard of this kind of treatment for brain mets! I had an idea that I was going to hear that treatment would be necessary, but this has me floored. I see my regular onc on Thurs, but sure would like to have more info when I get there than I have now.

Has anyone else experienced this type of treatment? How big is the access port used for the head? (Surely smaller than the other one I have!) Do you experience side effects as you do with chemo infused into the body? How long might it take to zap the rotten thing? Hair loss? Has anyone had a spinal tap (I have to have one asap)...is it painful?

Aside from my problems, I was very glad to see Lisa back on line, and to hear that Mary is doing better....Christine is right, just the word hospice is scarey. I didn't know they were involved in pain management, and am glad to hear that. Also that others have clear scans and other good news to celebrate....what a great way to begin 2005!!

Sorry this is so long....many thanks for any information someone may be able to pass along.
Love,
Jackie

[michelemd]

Best of luck!!

I can't tell you anything about what they want to do, but my prayers are with you!!

Michele

[*_Beth_*]

There are a couple gals at my Oncs office who have the treatment.
One gal just got her port and had a regular size bandage over it. They
lay back in the easy chair when it's administered and then sit for about a half hour to 45 minutes so as not to get a headache. (I talked to one of the girls). She seems to be doing fine on the treatment. Best of luck.

Beth

[Lolly]

Jackie, I did research the type of treatment you describe, but unfortunately couldn't access a lot of the citations as for some reason PDF isn't working on my new computer. Try Google, "breast cancer metastisis brain membrane chemotherapy delivery" if you have PDF. Also, have you tried the "Resources" page on this site? Lots of links there, you may find some info. Keep us posted, and stay strong.

Love, Lolly

[*_Christine_*]

Jachie
I never experienced this method of treatment for brain mets and do not know many who have had this procedure called Omaya Reservoir or VP where the port is put in the tumor area followed by chemo drugs. Methotrexate is one used and I'm not sure about side effects. You may want to do more extensive research or get a 2nd opinion. The location of the thickening is important to note. Also a biopsy may be obtained through this port to make sure of malignancy of this thickening. Question the Onc's about the possibilty of being a benign thickening. After you are completely satisfied with responses you can make a more confident decision. Please ask why you are not recommended to have WBR. I had Whole Brain Rads for 20 days. Even though I cannot recommend it , it may be an option. Also, you may be eligible for Gamma-knife again depending on the Size, and also check into Cyber-knife. Chemotherapy may also be an option . Check out all options with all your Onc's, with experience with OM port proceedure..
Jackie, you can e-mail me your # if you would like to have someone to discuss your present situation. Let me know where you live., also.
Wishing you a healthy new year, Hugs, Christine @her2support.org

[*_Annemarie_*]

I have only heard this method used when spinal mets was also present. I know this method is used mostly with spinal mets.

[Jackie]

Thanks to all of you....I didn't find much info on the net but probably didn't put in enough info to really "google" on. Will do so tonite. Also appreciated the good advice about biopsy, etc. I think my brain goes into shock when confronted with this stuff and I just don't think clearly. I really like and trust my onc, and will pose many questions on Thurs.
Thanks again.

[*_Christine_*]

Jackie
You may need to get further information from the Rad Onc and the MRI report. You mentioned recently that a membrane on the outer cover of the brain is the thickened area. THE QUESTION i HAVE IS... IS THIS A LAYER CALLED THE MENINGES? AND IS IT THE RESULT OF INTENSE RAD THERAPY. OR SWELLING? I have found out from my radiologist that an
-MRI PERFUSION can help to make a positive brain dx. Maybe you can pose this ?? to the Rad ONC. I had a situation where the tumour ater TX w/ Gamma and WBR started to swell and looked like cancer, but with patience it was the result of necrosis after intense Rad Tx. Questions are in order for you to make an educated decision. Hugs, Christine
PS I am interested to find out what your Onc's conclude on your behalf. Call Christine 760-602-9178

[Christine]

Jackie
If the location is near the area of the brain Gamma-knifed there can be lesion swelling in nearby membranes. A spinal tap can identify cancer cells in tthe spinal fluid to better understand the nature of the swelling
Also, if you can have the MR- Perfusion to help identify this thickened area
Sorry to be so persistant, but you need to get your answers to all these questions if possible before taking the chemo method. Christine

[Jackie]

No need to apologize for anything, Christine! It's been a very long and discouraging day, but I have lots of answers. I had a very detailed spinal MRI today (2 hrs in the darned machine), and am to have a spinal tap tomorrow morning. Apparently, benign tumors in the meninges have a different shape and grow very very slowly. This thing was not there in June, and has grown appreciably since Nov, so it does not "look" benign. A biopsy when inserting the resevoir, for fear of introducing cancer cells into the ventricle, but the spinal tap should show that cancer cells are present. They feel that delivery of the chemo directly to the ventricle is the best choice since it will completely bathe the entire brain. WBR would be the choice if the chemo drug doesn't work, tho I think there is one older drug to try, and one currently in trial. This is the worst place a metastisis can occur, and life expectancy is not generally very long, thus the lack of much information about this type of treatment. However, my onc did say that she had another b/c pt who was maintained a "long time" on methotrexate delivered this way, but I didn't ask her to define that. The neurologist was pretty amazed that I was not sick, as he said most pts with metastisis to the meninges generally are, but he said that was a good thing. He also commented on the fact that many oncs give up when confronted with this situation and he was glad to see that mine didn't as it was his philosophy to treat. There are minor risks associated with the insertion of the reservoir, and risk of infection thru accessing, but I'm trying not to worry about that. This would be pretty interesting if it wasn't my brain we were talking about....the neuro dr said I should have been a dr, but I told him I didn't like the hours!

I'm trying to give you as much info as I can. This is not very common, as evidenced by no first hand experiences posted, but if it comes up again, maybe my experience will help someone else.
Love, Jackie

[Christune]

Jackie
The spinal tap should should identify the cytology of the cells as cancer, giving you the knowledge that the chemo is a necessary treatment

If it is negative, ask more questions about the necessity of the OM reservoir. Either way you will get the answer. Wishing you well, Christine