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

Hi Mario, I'm pleased the treatment is working and also hope Carol feels better soon.

Has Carol always been clear of systemic disease? Are you able to try Kadcyla?

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

Prayers that Carol is able to leave the hospital soon. I am so glad that the treatment is working well otherwise.

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

What doses of IT Herceptin has everyone been receiving?

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

Carol passed away yesterday at 2pm gmt+1. Blood pressure fell till spo2 dropped and heart failed. She had an aspiration pneumonia that she could not cope with, mainly because of the taxol, causing complications with blood.

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

Oh, no. I'm so sorry. You have my deepest condolences.

Thank you for letting us know.

Amy

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

I’m sorry to hear about Carol. My condolences to you and your family.

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

Really sorry to hear this Mario, Carol was an inspiration for a lot of people. This thread has helped save peoples lives.

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

Marv,
You and Carol fought for each other in such a way as to give so many others hope and a new way to hang on in spite of such negative news.

You have my sincere admiration and prayers that you pain might ease.

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

So sorry to hear this - condolences to all Carol's family and friends.... Pam

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

Mario,
I am very sorry to hear this. Carol was an inspiration to everyone that had CNS involvement. My thoughts are with you in this difficult time.
Paul

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

Thanks everyone for your very kind posts.
I do not know what advances there was on this kind of cancer except that ONT-380 now called tucatinib is moving quickly in trials, and is very promising. Guess it will be the best medicine available soon.

Wish you all good luck.

Mario

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

Marvin,
I can't imagine how you feel. Nina has done quite well. We are approaching the sixth year of her being on IT Herceptin and Topotecan. November 2 was the 8th anniversary of the discovery of the large lesion on her brain surface. Just under 70 women have contacted me for help with HER+ Brain mets. The survival and no progression rate remains very high. I am sorry Carol wsa not one of those.

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

Thanks paul. You and Nina were always a great inspiration for us. I will always remain in this thread to help if i can. And Paul is the best in here on this.

Regards
Mario

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

I am going to be starting Intrathecal Herceptin hopefully this week. I had the Ommaya Reservoir put on August 1st. Diagnosed June 24th with leptomeningeal Mets.
Has anyone received this treatment or had the Ommaya ??

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

Kathy,

I have no experience, but want to wish you a great outcome and amazing response. Please let us all know how you are doing. Hopefully others will chime in soon!

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

KathyT, you are rounding another bend in a long road. Sorry you have to take that path, but there is a lot of helpful info in this long thread. You may want to ask about a two-pronged approach. There are some advances according to my med onc, but I don't have details, as she was in a hurry!

Will be very interested in how you do in drowning those spots with a great drug.