Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

Hi Evlin
I am no expert on these chemicals, all I know that 90mg seemed to stop the cancer grow but did little to cure it, with 150mg we are seeing very fast removal of these tumors, and 150mg were perfectly tolerated by my wife, so there should be no problem by escalting the dose slowly, even above 100mg. Wish you luck
Mario

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

Due to the atypical cells showing in the spinal fluid, the doctor set up the treatment for Herceptin IT 60 mg. instead of the 50 mg he had originally agreed was a next step. Not completely theraputic mg per kg for my daughter but a step forward to getting there.

She tried adding Tykerb back into the mix but had N/V so had to go back on her nausea medication. Stopped the Tykerb again.

She is scheduled to get the Ommaya replaced in a week or so. Hopefully that will aid the profusion to more areas of the meninges.

So far this has been an "uphill and against the wind" battle but we are keeping hope alive.

Ev

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

This is a long thread, and I'm not sure whether anybody has realized that Sloan-Kettering is also conducting such a trial:

http://www.mskcc.org/cancer-care/trial/12-123

Joan

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

I looked up the protocol at Sloan Kettering and it seems quite in line with the Chicago trial my daughter Susan was in for a short time.
Some get higher doses than others but go only to 40 mg.
The routine is usually 10 mg twice week for the first month.
The dose not large enough to work for my daughter even at 40, so she is being given 60. Higher doses seem to be needed to clear the meninges.

Thanks for the info. Getting clinical trials started though is progress.
Ev

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

Yes, Sloan is part of the Chicago trial, on same principles. You can view here.

http://clinicaltrials.gov/show/NCT01325207

Twice a week at 40mg is equivalent to 80mg a week, so it is not such a low dose. My wife is still doing 150mg IT herceptin and 50mg IT steroid a week through lumbar puncture, with no side effects at all.

Wish you luck Evlin.

Mario

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

Some were started at the lower dose without any hope of that dose escalating. My daughter was selected to stay on the lower dose and continuing that dose throughtout. That is the main reason we sought out another source to allow excalation of the dose.

This is a very diffucult business as we know the timetable for Leptomenigeal cancer is short if the dose is not adequate.

We are bit discouraged right now since the last two spinal cytology showed atypical cells again. A lot of treatments, MRIs and traveling to appointments taking up most of her life without mesurable change and improvement in the MRI views of the cancer cells in the spinal cord.

It is a great positive though that the physician has finally gone to 60 mg.

We need some good news right now though, and signs of some reduction of the cancer cells.

Ev

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

Ev,
Keep pushing for Susan. I talked to her on the phone in July and was told that things were going downhill quick. Keep talking to doctors. The dose that seems to be effective is 1.5 mg/kg of body weight (ie 150 mg for 100 kg or 220 pounds in Malta for Carol, 90-100 mg for Nina at 63 kg or 139 pounds), etc. The lower dosage may be why other patients only put the disease into hold. There is good evidence that it works even on lesions that are up to 4 cm below the surface of the brain, although the response time is up to 60 days. Keep on fighting for Susan. I am getting settled in Boulder and have started the new job. With a little more travel away from home, this forum will get my attention a little bit more. Nina is seeing her mother every day as we are staying there until we close on our new house. Last January and February we struggled to get to these levels, but by April things had turned around. Keep kicking them in the shin. If nothing elsee, give me their contact info and I have bigger shoes than you!
From a happy and healthy Nina and Paul the driver

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

From our MRIs at 50mg IT herceptin we already saw that the cancer did not grow more, for 220 lbs mass, so in your case I think that with 60mg you should see shrinkage. But if you can get more without any side effects I think that you should keep pushing once you settle at 60mg, I am sure the doctor will agree to try 70 or 80, if there are no side effects at 60. Wish you luck Evlin.

Mario

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

I have been watching the stories on these threads on IT Herceptin and have to say I think you are all so brave and thanks for being out there for all of us who might need this type of treatment in the future.


Karen
Treatment: Memorial Sloan Kettering Cancer Center (NYC);
World Trade Center Survivor (56th Floor/North Tower);
Dxd: June 2010, liver mets. ER-/PR+10%; HER2+++.
July 2010: Begin Taxol/Herceptin.
January 2011: NED
April 2011: Progression in liver only. Other previous affected areas eradicated. Discontinue Taxol/Herceptin after 32 infusions.
May 2011: Brain MRI: clear.
May 2011: Begin Tykerb daily, Xeloda twice per day for one week on, one week off, and Herceptin.
June-October 2011: CEA in normal range. PET/CT stable; no new lesions.
November 2011: Progression in liver. Previous tumors remain eradicated.
December 2011: Begin trial: 09-093 Taxol, MCC-DM1 (T-DM1), Perjeta. Brain MRI: clear.
January 2012: NED. Liver mets eradicated.
March 2012: NED. Taxol removed from regimen. Continue Protocol of T-DM1 and Perjeta alone.
May 2012: NED.
June 2012: Brain MRI: clear.
June 2012: NED.
August 2012: NED.
September 2012: NED.
October 2012: NED.
November 2012: NED.
December 2012: 09-093 trial concluded; enter trial extension 09-037. CT, Brain MRI, bone scan: clear.
January 2013: NED. Forever, please.

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

Thanks Karen for your continuous support, surely we are trying a treatment that will cure thousands in the future, especially those that had their lymph nodes tested positive on detection of the first breast cancer. But we are not the pioneers. I did follow some that did it years ago and got to know this from Courtney L., who did it two years ago, and worked on her too to clear her brain from tumors, sadly she had other places with tumors. I am so grateful for her. Nowadays it is not that difficult to find a way to do it, since now it is available in many places, even at Sloan Kettering in NY.

Mario

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

We agree with Mario. The people that are getting treated now owe their lives to Courtney, a woman in Germany, a UCLA patient who is four years into good health, to a woman in Japan, to two women in Eastern Europe, and to those that have gone to Chicago and Sloan Kettering. The cases are out there, and some of them are very scary. There is no way to know the fear that they had. There is also no way to thank them for overcoming that fear and taking the risk. We firmly believe that Nina is alive because I could access their information and make some judgement calls. We cannot thank MD Anderson enough for allowing the treatment to occur. We cannot thank Anthem BCBS enough for the coverage they have given us, and the support to take the stress off our minds in terms of financial impact for the treatment, and we cannot thank Genentech/Roche enough for supporting IT Herceptin treatment development. Lastly, and most importantly, I personally cannot thank enough the members of this forum for their support emotionally as this was a very hard year. For 8 months, Nina and I would get together every other weekend, but the times in between were mentally challenging. This forum provided me with something positive to do, a place to put my thoughts, and calm my fears. Keep up the great work for all of those who read and may or may not contribute themselves.

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

Carol is still doing fine, today is her 47th birthday and is enjoying it to the full!! Will have an MRI in 2 weeks and will post results here.
Mario

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

YEAH, HAPPY BIRTHDAY Carol, You are such an inspiration to others, Have fun.

Prayers for continued healing and Improved scans and MORE BIRTHDAYS!!!!

Darita

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

Happy Birthday, Carol!!

I hope we're both around to celebrate your 57th, 67th, 77th.....

Denise

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

Hope Carol has many more occasions to celebrate. My daughter felt she had accomplished something of importance when she made it to her 50th this last year. With this new IT treatment we have renewed hope for many more birthdays.
I hope there are many more birthdays for all.
Ev

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

Thank Denise, Darita and Evlin for your good wishes!
Happy Valentine's to all.

Mario

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

Susan's MRI is showing some type of increased activity. Could it be from the lumbar puncture truma? We were so hoping for some irradication signs in this last MRI.

At least the Ommaya is now in place and she won't have to use the lumbar area from now on.

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

Carol's first MRI also showed increased activity, only after her 2nd MRI had it settled. I think it is the herceptin working on the cells and had happened with my wife. It takes time.
Mario

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

She was at 40 mg several months. Then she rceived 60 mg x four and then 80 x one and this is not just the second MRI. I am just hoping against hope that this is just activity from destruction or possibly truma from the several very difficult and painful Lumbar punctures.

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

But Carol's dose went up very quickly, if i remember correctly with the 14th dose we were already at 100mg, and MRI still showed more new spots inside the brain on the 2nd MRI after the 14th dose, then went to 150mg and after 22 weeks it just settled. With 40mg I doubt how much was it working, but with 80mg it is going to work and you will see the result over the next 2 MRIs. I don't think that doing lumbar instead of ommaya does much difference.
Mario