Re: brain mets
 

Paul 40 mg weekly?, and steroids how much IT or IV. Going to Onc tommorow to talk about Ommaya placement. since the political entity at the hospital will do the IT chemo but no herceptin due to off label. so after all the run around I'm off the Nuerosurgeon for ommaya and then Dr office Onco nurses do the IT herceptin
Darita

Re: brain mets
 

With Nina, we started at 40 mg and had them give typical steroids for methotrexate or gammaknife. We went four weeks at that dose, then went to 1.5 mg/kg weekly. If someone is at 70 kg (154 pounds) go to 1.5 x70 or 105 mg. Congrats on taking things into your own hands. You will sign the can not sue paper every time, but it sure beats the alternatives. Again, since I am not a doctor, this is what I would did for Nina. I cannot give you medical advice, only assist you in making a good judgement. Have them do MRI scans at monthly periods until there is nothing showing on the MRI scans. If they pull fluid, have them check glucose and protein. Then protein should spike and come down. The glucose should come up. No cancer cells should get protein and glucose to normal. Again, this is what happened with Nina.

Re: brain mets
 

I know in Los Angeles UCLA does IT herceptin. I didn't know herceptin is off label. Maybe you can contact Genentech for patient assistance.

Re: brain mets
 

Genentech is not supporting anything other than the Northwestern and Sloan Kettering work to determine whether IT Herceptin will hurt you at 10 mg, then 20 mg, then 30 mg, and finally 40 mg. They are not testing up to therapeutic dosing of 100 to 150 mg. MD Anderson wants to test at these dose ranges, but there is no drive by Genentech as they do not see the need. Off label treatment at the higher dosing still gets them drug to sell without paying for the high dose that is needed to be therapeutic. The drug does not get the brain and spine, that is why intrathecal treatment is needed. The drug metabolizes really fast in the spinal fluid, which is the reason for the high dose necessary. We pushed hard to have the cancer agree. I pulled every favor and every miracle I had to get Nina treated. I am trying to do the same for all the forum members that need the info, but my bag of tricks needs to be refilled. I am working on it. Nina is NED since October (really since April if you do not consider the two month's of "we don't know what this is" on the MRI scans). Time to help others.
Rolepaul (Superior is my new home town so should I change to SuperPaul?)

Re: brain mets
 

Paul
So wonderful to hear from you and best of all, you are near a caring and loving family, and Nina is thriving!
Happy 2013 to you both!
Warmly
Karen

Re: brain mets
 

Mom Update:
Just returned from Mayo clinic (7 hr car ride). Mom's bone mets are stable as well as nothing in liver. Her brain mets, post WBR, went from 8 to 4 lesions. Doing another MRI in 4 weeks to see if WBR has removed anymore tumors. Gamma Knife down the road......after WBR finishes it's job.
Good news.
Mom is still on flasodex and Herceptin for below neck treatment. Zometa to strengthen/heal bones.
Her oncologist told her there is not a "pill" or "chemo" that will go past the brain barrier. Is that what you all understand? She said there have been new studies done with something they thought worked, but did not.
Thanks for all the support and feedback.
Kim

Re: brain mets
 

How wonderful your Mom has shown so much improvement! Please know that your Mom and you are in my prayers. Gods blessings to your family.

Re: brain mets
 

Kim,

Your mom can have a lot of hope. I had a brain met treated with targeted radiation in fall 2008, and all has been stable since then.

Don't give up hope.

Joan

Re: brain mets
 

If the radiation does not work, then they may suggest just hit each one with radiation separately. If that does not work, there is an opportunity to get intrathecal Herceptin. There are a number of patients treated this well, including my wife Nina. The results so far, when given in doses that are in the range of 1.5 mg/kg, are showing some positive results. Initial work done in 2008 seemed to have been overlooked. I am pushing this to be evaluated and there are some doctors willing to look at this again. Nina was treated at MD Anderson in Houston.

Re: brain mets
 

Okay, I have a question. KG said her mother was told that is no pill or chemo that crosses the blood brain barrier. I was under the impression that Tykerb crossed the brain barrier? Was that incorrect? Im all done with the WBR, and waiting six weeks to get a brain scan to see what effect it has had. Still on the Herceptin, getting ready to start Tykerb. I actually thought that was why I was starting the Tykerb was that it crossed the blood brain barrier.

Re: brain mets
 

Tykerb and Xeloda do pass the BBB. Herceptin does not in therapeutic amounts. Gamma Knife and IMRT will continue to be a first line therapy as they are less costly and can provide an immediate response that is measurable in a month. Intrathecal Herceptin is not widely in place yet. It is costly and requires weekly visits. I think if the lesions are not kept under control with WBR and/or Tykerb/Xeloda, then the IT Herceptin is the path to go.

Re: brain mets
 

Thank you, Paul. KG-I would definitely mention this to your mother's oncologist. My oncologist would like me to start Tykerb because it DOES cross the blood brain barrier. We need to attack these brain lesions with everything we can get our hands on. I am told that the Tykerb is quite tolerable with the Herceptin, although a lot of GI issues. Lots of prayers and positive thoughts your way. I hope your Mom is feeling better each day.

Re: brain mets
 

I will definitely be looking into this! She claimed new studies say it doesn't work. Maybe I misunderstood. Thanks for all the help and support. This is why this site is so important!

Re: brain mets
 

I haven't read any recent studies, but I know there are quite a few ladies here on the combo of Herceptin and Tykerb. Can't hurt to discuss it. smiles

Re: brain mets
 

Nina continues to show no sign of disease. She had the last MRI scans at the same time as Carols on 2/23 and 2/24. She is now at IT every four weeks and IV every three weeks done locally. The new health insurance did not even blink on the IT Herceptin. We moved into a new town home on 2/15 and have been spending every moment available working on it. The view is incredible, with 30 miles on 270 degrees of the view, with the North Denver lights, the plains, and the Rocky Mountains. Nina has had so many changes in the past 15 months that she is overwhelmed. We are 2.5 miles from her mother whom she sees daily, and she sees other relatives weekly. My job has me traveling a bit, and I went down to Houston the 2/22 to 2/25, but I am happy as well. I wish that the our happiness can spread to all that are reading this, but know that there are many difficult steps on the trail.