PattyZ,Steph and Mickey,Lisa I Need your Help

[kristen]

Ladies, I have read all your posts on this page, I need your help to see if what Patty is on is my friend Wendy's best option, her onc's told her this past Friday that she is out. This will be her second time she was told she only has 6 months to live. Her first dx was 6 mths ago stage IV with mets to liver and brain, her liver would look shot on film but function test says it's at 99.9% capacity. Good news! Wendy gets scanned every 3 months, last one, everything was stable with no new growths. This last Friday she has a new tumor in her brain, can it be this size? 23cm? It has wrapped itself around the brain with tentacles and you know it's inoperable. The radiation she recieved last time was the max, they say. I have some questions and I know Patty is out of town and was wondering if you could shed some light on what she was saying? I really would like to give her some options she is only 35 with a toddler, please help me, help her. Patty said this may only be temporary, but the results were good only after 2 treatments. What would cause it not to keep the mets in check? Is the Temodar only good for small mets, not one large one? What does the leaky bbb mean, is that good or bad? I am thinking it's good it lets in chemo? If it makes her sick with the Xeloda, there is an option of cutting the dose down? The regemine is Temodor for 7 days plus Xeloda, 2000mg for her bwt. cut in 1/2 is that once a week then again the other half the following week? or every day for 14 days? Then one week off? With a tumor this size she is on decadron, she isn't sleeping well, told her about Ativan, Mickey didn't take it but they were small, should she continue to take it? Is there a chance to cut the dose down? Patty also wrote and this gives me hope, treatment stops when there is permenate disabling brain damage, she feels great and has no symptoms, she is just now feeling like a plastic glove is starting to squeeze around her head. Or Patty said severe progression of other mets indicitive of something, I can't read my writing, but she doesn't have that. That brain mets progression alone there is not a lot of good information that it doesn't happens very often. With a tumor this size is a MRS scan applicable? Could some of it not be active? She has 2 oncs. The onc who delivered the news is very impersonal and looks at charts where as the other one knows her by name and her daughters name and tells her options. This one didn't. Just told her to come back and to continue to get Herceptin every week. I am really scared for her, but still have hope. Have any of you known anyone who has a tumor this large and beat it? Would she have a chance with Patty's combo? Is there ANY thing else you can advise me on? I feel time is of the essence with the size of this monster, seizures, etc. Thank you for endurng this long post. I just know you all will pull together and help me, help her. Your the best! Thanks for getting back so soon, I know you will. God Bless you all. LOL

[StephN]

Hi Kristen -
Just got off the road from a drive across our state. It is late, but I will answer that first of all the tumor size you reported is impossible - that would be about NINE inches. It must be 23mm (millimeters), which is about an inch and that is the size my larger tumor was. Tentacles wrapped all around is also a little bizarre as BC brain mets typically have smooth surface and are quite round in shape, which is how they are distinguished from the normal looking brain primary which are usually more irregular.

She needs to find out if she can have Gamma Knife on this new tumor. Seems from what you say that Wendy has brain mets, but we need more specific info as to their status right now. Yes, if there is inflammation, she most likely needs the Decadron, and there are sleep aids and herbal teas that help the long, restless nights. I took a high dose at 16mg per day - in four doses.

I hope she can get with the other onc or get another opinion from a good rad onc who will maybe give her some other options.

More soon.

[pattyz]

Kristen...
I only have a short time before getting set to leave today.

What Steph said: I agree with. If this tumor has 'tentacles' it sounds more like a type of primary brain tumor than metastatic tumor. Also as to the size more likely at 23mm. Not cm.

If indeed primary and malignant, treatment with Temodar may in fact be a good idea...

Focalized rads with something like this is difficult because of the "tentacle" aspect.

If operable to a degree, with added Temodar and a few sessions of smaller dose focalized rads to areas that were not able to be removed may also be an option.

So many of us metsters have had experience with response to a chemo with progression after a few to 6mos. or a yr. The cancer becomes 'resistant' to that particular chemo. it learns to not respond anymore, so to speak. That is what I meant by not knowing how long this would be effective for me.

Leaky bbb is a good thing when considering treating with chemo.

The tx combo I am on was 'invented' by my onc with my support. There is NO current standard to go by.
I continue with the Xeloda at 2000mg in two divided doses on the second week. ( so, I take 1000mg 2x's a day). Then I have two weeks off before beginning again.

Don't know how helpful the MRs would be with what is seen at this point....with the wrapping around, tentacle stuff. Sounds like that is something the docs could determine from what they can see...

As to the Decadron....that could be reduced to effective amounts. Whatever her symptoms are from the brain tumor, the dec is supposed to control them. And yes, DEFINITELY take something to help with sleep. This drug is my LEAST favorite... I should say drug from hell. yet it does it's appointed job so well...

That's all I can think of, have time for at the moment. Hope it makes sense. hope others have more ideas. But, whatever the future brings, your support and love will be the most helpful to your friend.
hugs,
pattyz xoxo

[mickey]

I am so sorry for this news. Unfortunately, I have taken no chemo for the brain. Only radiation. No brain damage here, yet. Only old age creaping in. I will post if I feel I will be of any help. Hang in there.
Mickey

[kristen]

Hi, It's me again,

I have been on the Internet looking up clinical trials and put in a call to the CTCA. I talked to a nurse there that said Tomo Therapy might be an option when the maximum has been given for WBR. Has anyone ever heard of this? It's supposed to be a conventional therapy. I have just never heard of it being used here on any one, so didn't know if any of you have heard anything positive or negative about it? There is a place in Canada that does do Tomo therapy also. I can give her what I have found out, but would feel bad if it was bad info. Just checking. Thank all of you so much for getting back to me so fast. I just can't tell you how much this means to me and Wendy. You all are just so amazing. You just blow me away every time someone yells help and you are there in a second. I love you all. Thanks again and again.

[Unregistered]

Dear Kristen

I can hear the panic in your post and certainly understand it. If your friend is able to travel, I would strongly encourage her to look into cyberknife radiation. It is a kind of stereotactic radiation that is very focused. Look up the company Accuray on the internet and they can give you sites across the country. There is a support group on line and the link is www.cyberknifesupport.org. There are neurosurgeons and radiation oncologists who can answer questions if you can provide them with accurate details. 23 cm would be impossible, that's almost 10 inches and I don't think it's right. Maybe you can get a copy of the report and post your question to the cyberknife doctors on line. I have had brain mets and found them to be very kind and helpful.

[kristen]

Thank you all so very much for all your help. You are all correct it is 23mm. Wendy wants to thank you all for everything you have provided her with. She is now looking into everything and is now taking control of her situation and going forward to see what her options are.

When she was first dx her concern was for her daughter and she trusted her oncologists. She believed that everything was going to be alright and for 6 months it was. When she went in for her last MRI and they didn't call her she thought everything was the same. Then she went in for her Herceptin treatment and the onc. told her that she had growth and a new met in her brain. She was in total shock and wasn't prepared for it. By Saturday she had all kinds of questions. She has never been one to look at her scans or know her options, but now she is looking into all of this. I mean in one hour after posting I had Steph post and found Patty Z.'s treatment and by Monday found other posts available. So just as a reminder to others reading this, when an onc. tells you there is nothing else we can do for you, don't believe them. Patty didn't and I sure as heck don't. To look at Wendy you would never know she was sick. Her counts are good. Her liver mets are stable. She feels great. She has it in her to fight. I think it is just the inadequatecy of the onc. because she doesn't know what else to do. Look around and find that onc, who will fight with you and for you. I want to Thank all of you who posted and I want to tell you what a huge difference you made in one woman's life. You gave her something her doctor couldn't and should have. You all are commendable. She will be looking into gamma and chemo options and anything else she can get her hands on. I just can't thank you enough. Love to you all.
ps. If any of you think of anything else, please keep on posting.....

[StephN]

Hi Kristen -
Thanks for the last post - this make a lot more sense.

I sure hope that by now Wendy has had a consult with a good team of brain specialists. In my case they also gave me a choice of surgery to remove the large tumor. Since I wanted Gamma Knife for the smaller one, I opted for Gamma Knife only. The smaller one has completely disappeared, and I have some scarring where the larger one was.

I went with the Gamma Knife as it is accuarate to 1mm and does not have the other risks of open surgery such as possible infection. My blood counts were all normal, but for someone with low counts a surgery has increased risk.
Just a little more food for thought. ;)