Herceptin and the brain

Thanks for that information Karen. The cancer has now spread to the brainstem and I am taking the Tykerb/Xeloda chemo combo with severe side effects so far. The Kadcyla sounds good. Cheers Sonia :-)

Hi Sonia,

 

I have had Advanced Breast cancer fro 8 years, the past 3 with brain mets.

Mine have been managed through radiotherapy, stereo radiotherapy and surgery.     I had stereo radiosurgery on a lesion in the frontal lobe and I am pleased to say that it had complete disappeared after 12 months.   I also had a lesion in my spinal cord C2/C3 which was treated with radiotherapy back in January 2013 and my last scans show that it too has completely gone!

I have two lesions in the cerebellum which have been more problematic becuase of their location, being close to my main vein in the brain.   They grew quickly so I was operated on in March 2013 to remove as much as possible but some cells were left as they were attached to the vein.   These were monitored through MRI scans.   Thre grew back and I underwent radio stereosurgery in April.   I am pleased to say that these have also reduced signficantly.   I have been fortunate to not experience any symptoms in the brain as lesions have been picked up with my regular 3 monthly scans before they had a physical or neurological affect.

 

I have not have had whole brain radiotheraphy as I have not presented with many lesions.  

 

I have been on Herceptin for 7 years which combined with various chemotheraphies has kept my bone disease in check.  However in recent times I had paid for Kadcyla being Herceptin and a chemotherapy Emtansine.  This drug targets cells that express too much HER2 protein adn doesn't attack good cells.   I have never felt better, side effects have reduced to neuropathy, dry mouth, dripping nose and fatigue.   I used to have digestive and gastric issues which I no longer have.

 

I am in Melbourne and my oncologist, Dr. Mitchell Chipman works out of St.Vincents in East Melbourne and my neuro radiologist, Dr. Claire Phillips works out of Peter Mac in East Melbourne.

 

Perhaps there is something here that may help you.   Kadcyla is being submitted again for PBS.  I hope it gets up.

 

All the best with your treatment.

Karen Cowley

 

Thanks for the info Sam. Hang in there, and rest up on the bad days. Be kind to yourself, you deserve it! Cheers Sonia :)

Thanks Denise, Screaming doesn't help much, I prefer to laugh in the face of obstacles...it makes them so much more insignificant! Good luck Sonia

Thanks for the information Amanda, I'm not on Facebook as yet, but it's only a matter of time. I live in Launceston, Tasmania. I am still in hospital in Hobart after my neurosurgery and getting stronger every day. Only one more tube to remove! Starting to feel more human every time they detach something!!!! Eyes not playing nicely together and very unsteady on my feet, but improving every day. So good to see my kids today for the first time since i came to hospital on Tuesday. Stay strong with your own journey, Amanda. :-) Cheers Sonia

Thinking of you and good luck with your surgery.

Sometimes you want to scream....arghnhhhh!  :)

Take care

denice

 

Sonia, i am on abraxane and carboplatin in addition to the herceptin..these drugs seems to be a bit easier on the body and i don't seem to have side effects that cant be managed well...fatigue is still frustrating me ..so i take each day as it comes, rest when i have no energy and catch up when i do..each day can be different...There are always new drugs on the horizon and my oncol has assured us she has more options if/when this regime stops workking..

good luck with ur chemo

Sam :)  xoxox

Hi Sonia Glad to here Sam has chimed in here. As She said Tykerb and Xeloda are the likely combo - tykerb crosses the bbb but it is also thought that after whole brain radio there is possible leakage of herceptin into the brain too. There is also interesting work into intarathecal herceptin in the US with some people getting good results. I don't have brain mets but have lung mets and am currently being treated with Tykerb and Xeloda with good results so far (very little else has been effective for me). I would suggest having a look at www.her2support.org It is a fabulous site for Her2 - the boards are full of women living well - some with brain mets many many years ago and cancer free, others managing stage 4 as a chronic disease. I find it full of hope and information. Are you on FB? We have an active group for younger women with BC on there. Where ins Aus are you? I'm happy to be a contact too. Best wishes for your surgery. Amanda (Melbourne)

Hi Sam,

Sorry to hear you are having a hard time of things. What is the targetted treatment you are on now in addition to the Herceptin? I am not sure yet what my oncologist is going to use for my next chemo regime or the targetted therapy. I guess there are new developments all the time.

Hang in there and be strong.

Sonia :-)

Hi Sonia,

I wont bore u with the diagnosis rollercoaster (u can read my profile for all that info) but i had the same experience in  that the herceptin let me down and i ended up with several tumours plus quite a few "spots" around the brain-surgery not an option..tumours around 1.8 cm did the whole brain radio thing at the freemasons in melb (great staff!!) then started oral xeloda & tykerb mix..a follow up CT at 3 mths post radio showed tumours down to 1 cm..YAY.!!!.however the oral drugs really didn't agree with my system (apparantly has/is working really well for most)..but not me, so at 6 mth CT post radio tumours were back up to 1.9cm  BOO!!!  so now i am back on herceptin plus 2 chemo drugs just to keep everything at bay at least...

anyway, that has been my experience

feel free to check out my profile here and add me as a contact if you wish

 

Sam  :)