Help Needed for a Friend

[lindseysmom]

I have a friend that was diagnosed with stage 2 NSLS last April. She is 69 years old, previous smoker. He has completed radiation and chemo. She has not had surgery. Chest CT shows all clear in chest HOWEVER now she has brain mets.

She has several treatments WBR. This has not helped. Her dr. has told her there is nothing more that she can do. She said she is not a candidate for the gamma knife treatments as she has more than seven mets. She said she really was not sure how many she has. I told her I think she needs a second opinion she feels she has her dr. called another dr. on the phone and he agreed. I really need so me suggestions to tell her. We have been friends for such a long time. I care for her and just want to help her. She is really upbeat and she has told that never has she thought she wouldn't make it.

Best Wishes,

Dee

[wiesia]

There are people here that were treated with gamma knife for more than 7 mets (8 at least, I remember). Maybe she needs to call around gamma knife specialists.

Also, I think after WBR chemo is supposed to pass easier to the brain. Did her doctor talked about chemotherapy for the brain mets ?

w.

[EastCoastLadi]

Dee,

Definitely let her go get another opinion, I also had similar thought as "w." - about doing more chemo. My husband went thru WBR, and IMRT still w/ brain mets and now is on etoposide (orally) and it is helping decrease the mets. Tell her talk to someone else, because there are always options for her to try, the stage she is in, they can do more for her. Please let us know what she decides to do..

Grace

[marym]

I do not know all the qualifications required for the cyberknife, but with radiosurgery they do want no more that 4 or 5 mets. I'm surprised the WBR didn't help more. I would suggest that even if all mets cannot be treated, they treat on an as needed basis - if it's thecerebellum, get it out!

I think I would want to see another doctor to look at alternatives for dealing with your friend's situation.

Good luck.

Mary

[trishnmiller]

Dr Aziak Wolf (neurosurgeon) at Doctors Hospital in Miami, Fl. will do more than 7 mets. In fact he feels that putting a number on the amount is insane. He is quite vocal about it. My husband has had a total of 18 and he used GK on all of them. In the beginning he had 8 and none of the other oncologists would let him have GK and I would not permit WBR. I found Dr. Wolf on the internet. I was so determined that I dragged Jeffrey to him and asked him to recommend an oncologist who would refer us back (for insurance purposes) to him (Dr. Wolf) and that is how we got the oncologist that we have today. I hope this all makes sense to you because you really can't just walk into a neurosurgeon's office without a referral (unless you have megabucks). We are lucky to live in South Florida but we would have flown here to get the treatment. I am sure there are others who will treat more than 4 but I don't know where they are. Best wishes,

Trish

[lindseysmom]

Dear Grace and W.

Her dr. has told her chemo is really not a option because they say chemo does not penetrate the brain. I had another friend who had Non Hodgkins lymphoma and the dr. put a stint into her head. I would think something else could be done for her.

Thanks for posting a response

Dee

[trishnmiller]

She must get a second opinion. There are chemos available that can work for brain mets. Here's the thing that I have found over and over again: Doctors (even specialists) are not always as aware of new medicines and technologies as many of the people here on this board and at the end of the day we are all consumers. The doctors are selling and we are buying. You know what they say, "Buyer Beware". Please enourage your friend to get another opinion.

Best to you.

Trish

[stand4hope]

Hi Dee,

I'm sorry to hear about your friend. She needs another opinion. My husband had 8 brain mets, was treated with WBR and 2 very tiny mets disappeared, and then had stereotactic radiosurgery (Novalis) (similar to gamma knife) to the remaining 6 mets, and then had it again 1 1/2 yrs. later to multiple tumors (I think 5).

He was treated w/Novalis the first time in November 2003 and at that time, the standard was no more than four, however, this doctor said the same thing Trish's said - they can treat as many as they want. It is a very, very long day, though, with so many to be treated this way. I don't know if gamma knife is any quicker, but both times we were at the hospital for 11-12 hours and we were both exhausted, but it was successful. The tumors didn't all completely disappear, but they shrunk significantly and stopped growing for a very long time.

About the chemo, I think there is some truth to the fact that most chemos don't get through the blood brain barrier, however, we were told that a little does. I also know there are some chemo pills that are given that have been successful. I think one of them is called something like Tremador. Ginny's husband, Earl, took that, but I don't remember how well it worked for him.

I'm guessing this onc isn't up on the latest technology or is considering her age and the odds, something he should not do. The only reason I could ever see that someone would not get GK or SRS would be if they were just in really poor health generally.

Oh, one more thing. You said she has had "several treatments", but not how many or how long it's been since they were completed. Sometimes it takes a long time to know the true success of WBR because the radiation keeps working over a period of time. GK and SRS are even more successful because they give a much higher dose to each tumor.

Prayers for your friend, Dee!

Love,

Peggy