i just received the news about my fathers latest mri.
3 weeks ago they said it was operable, and we wanted to do dendritic cell therapy but in that hospital they didn´t want to give the tissue.
so we scheduled a new appointment with another hospital my dad got a new mri and now they say its inoperable and it spreaded.
I AM SO DEVASTATED !! WHAT CAN I DO, IS THERE STILL SOMETHING I CAN DO?
I think i read a while ago about some kind of morphine that causes regression please help me
We went through this with my Dad. We were at the hospital with the IV going and waiting for surgery (awake craniotomy) and the Dr. came back and told us his tumor had quadrupled and we could not proceed. It is devastating. We are now trying the cocktail with temodar and radiation. They say if his language improves or the tumor shrinks we can try again for surgery.
ReplyDeleteI replied to this post by email. In certain situations I'm not always completely comfortable making suggestions on the public blog. If anyone else has ideas please make them known.
ReplyDeleteStephen
I replied by email too
ReplyDeleteOk - now I want to know your ideas :-) My dad can't have surgery either. Our tumor grew 4x in one month. Email me ideas too please! Thanks
ReplyDeleteJust looking over your dad's cocktail profile Annie. It's quite extensive and there isn't much I can think to add, besides DCA, cannabis oils, minocycline. Of course he is already taking disulfiram, and risk of neuropathy is probably even greater adding DCA on top of that. Some people have not tolerated minocycline very well, and he's already taking so many drugs, but it's hard to know without trying.
DeleteAmong other things, I suggested to Lycka to contact the CUSP9 people in Germany, and not to rule out Avastin since it could buy some time to find better options.
I regret not mentioning the thyroid hormone management strategy to you Lycka, it slipped my mind. One or two others on this blog have adopted this strategy.
ReplyDeleteThis involves two drugs: methimazole and Cytomel, and the goal is to reduce thyroid hormone T4 (thyroxine) levels as low as possible. This is the purpose of the methimazole. The Cytomel (synthetic T3 hormone) prevents hypothyroidism. This was the subject of a recent clinical study including advanced GBM patients, by Aleck Hercbergs (now at Cleveland Clinic) with a few very impressive cases.
This study abstract is here
http://www.ncbi.nlm.nih.gov/pubmed/25410096
and I'll make sure to add this to the Library if it's not there already.
thx! much appreciated Stephen
ReplyDelete