HER2 Support Group Forums - View Single Post - Working thread - what do you think the HER2+ standard of care should be really?

forher · 01-07-2016, 12:45 PM

I haven't had a chance to read everyone's posts. But I wanted to resonate a few points probably already suggested and more:
1. connections to a integrative or nutritionist
2. brain scans at dx (I got one) and 6 mos thereafter esp if there is lymph node involvement
3. bone scans at dx (I got one later)
4. some sort of preventative protocol like Kadyla or Tykerb or Xeloda esp if there is lymph node involvement
5. I had a "chemo teach" when I first started treatment to help explain tx and drugs...How about at Her2 teach to inform patients about Her2 disease and targeted therapy should we need it in the future.
6. Her2 "specialists" in the clinic who actually know about our disease, or access to one. Onc should know who to refer to in case of Her2 q's and we are definitely all different in our disease
7. Labs to check CBC's, Vit D, zinc, etc
8. More info on clinical trials and drugs in the pipeline for Her2
9. alternatives to WBRT. Yes, they can do SRS on several lesions. So why insist on WBRT??

My brain mets were only discovered because I got severe headaches from a degenerative disc at C5. If it wasn;t for the pain I was getting in my shoulders, neck and head, I would not have gotten the MRI that found brain mets. We discovered my degenerative disc at diagnosis, when I was 40. My MO thought my disc was causing more problems and ordered the MRI. Boy, were we surprised when 4 lesions showed up on the MRI! I'm still living with those lesions, but I have to do my own homework to find alternative treatments to WBRT.

01-07-2016, 12:45 PM	#8
forher Senior Member Join Date: Nov 2014 Posts: 83	Re: Working thread - what do you think the HER2+ standard of care should be really? I haven't had a chance to read everyone's posts. But I wanted to resonate a few points probably already suggested and more: 1. connections to a integrative or nutritionist 2. brain scans at dx (I got one) and 6 mos thereafter esp if there is lymph node involvement 3. bone scans at dx (I got one later) 4. some sort of preventative protocol like Kadyla or Tykerb or Xeloda esp if there is lymph node involvement 5. I had a "chemo teach" when I first started treatment to help explain tx and drugs...How about at Her2 teach to inform patients about Her2 disease and targeted therapy should we need it in the future. 6. Her2 "specialists" in the clinic who actually know about our disease, or access to one. Onc should know who to refer to in case of Her2 q's and we are definitely all different in our disease 7. Labs to check CBC's, Vit D, zinc, etc 8. More info on clinical trials and drugs in the pipeline for Her2 9. alternatives to WBRT. Yes, they can do SRS on several lesions. So why insist on WBRT?? My brain mets were only discovered because I got severe headaches from a degenerative disc at C5. If it wasn;t for the pain I was getting in my shoulders, neck and head, I would not have gotten the MRI that found brain mets. We discovered my degenerative disc at diagnosis, when I was 40. My MO thought my disc was causing more problems and ordered the MRI. Boy, were we surprised when 4 lesions showed up on the MRI! I'm still living with those lesions, but I have to do my own homework to find alternative treatments to WBRT.