Brain mets, WBRT, SRS, TDM1 and a VP shunt
 

Not sure if this is the right forum. If not, please let me know which one to post in.
My wife received TDM1 for the first time on March 9th, and had a severe reaction, with greatly increased brain edema. We found out later that this was also discovered at the University of Colorado in patients that had undergone previous SRS, as reported in the Feb 2014 Neuro-Oncology journal. My wife has also undergone three rounds of SRS in 2013.
After initial treatment with high steroid dosages, the oncologist, neurosurgeon & radiation oncologist decided to insert a VP shunt, which has helped.*My wife is now scheduled to restart the TDM1 today,, and also undergo another round of SRS in about 2 months. The doctors here admit that they do not know of any similar cases that include brain mets, WBRT, SRS, TDM1 and a VP shunt. They called my wife a "pioneer".
Is there anyone out there who is aware of a similar scenario?

Re: Brain mets, WBRT, SRS, TDM1 and a VP shunt
 

Chuck18,
It is very upsetting that your wife (and you) had to endure such a scary experience. I am hoping she sails through the rest of her treatments with as much ease as possible. I personally do not have experience with the factors in her treatment, but wish you all good things.
Karen

Re: Brain mets, WBRT, SRS, TDM1 and a VP shunt
 

Chuck, I'm glad you found us but sorry you had to. I think where you've posted is fine and should be seen by our more senior and knowledgable members who can relate to your wife's experience. Thank you for reaching out on her behalf. I know this must be a difficult experience for you too. Keep the faith

Re: Brain mets, WBRT, SRS, TDM1 and a VP shunt
 

Dear Chuck,

It's hard to be on the frontier of knowledge and experience. You must both be exhausted. My thoughts are with you and your wife. I am thinking that if the shunt allows the TDM1 to continue to do its work, that is a good thing. Hold your wife close and think of this cancer community surrounding you. You are not alone.

Aussie girl

Re: Brain mets, WBRT, SRS, TDM1 and a VP shunt
 

Hi Chuck,

I don't have experience in any of the things you've listed. But many members of my brain tumor support group (I have a separate issue of life-long brain tumor) have shunts to drain the fluid and reduce the cranial pressure (caused by the edema?).

http://www.cancer.org/cancer/braincn...eating-surgery

Hope things improve and T-DM1 will do it's job.

Sending you good vibes.

Re: Brain mets, WBRT, SRS, TDM1 and a VP shunt
 

Chuck, please know that your wife and family are in my prayers. Gods blessings.

Re: Brain mets, WBRT, SRS, TDM1 and a VP shunt
 

TDM-1 has Herceptin and emanstine bound together. If they get to the brain, it might be too aggressive inside of the fixed confines of an encapsulated lesion. It was important to start Intrathecal Herceptin at 40 mg per patient before going to the higher dose to prevent this same issue! Nina had no issues with Intrathecal Herceptin after SRS (twice) and another round of band radiation. She had radiation to the lower spine due to mets there. Nina has been on IT Herceptin at for 27 months with the disease kept at bay. I think TDM-1 is not a good idea for brain mets, but I am not 100% sure. I am sure for IT treatment. Please be aware that Emanstine was not allowed in the past because it was so toxic in the general body usage. If the cells are compromised in any way, and there are residual tumor cells present, the reaction may be too strong. That does not appear to be the case with Herceptin. We are looking at Perjeta the same way, but there is a reluctance by those in Clinical Affairs to use Perjeta because the Phase I trial at Northwestern for Herceptin through Intrathecal introduction is not yet complete.
PM me if you want.