Is NED really NED

tachilders said:

I'm getting confused, as I

I'm getting confused, as I thought you had already taken multiple Removab treatments.  Can you summarize exactly what you did at Hallwang, and when, prior to becoming "NED"?  Was it just chemo-embolization and the DC vaccine, or was it those two and one Removab treatment?  Regardless, it sounds almost miraculous that they were even able to get you tumor-free based on your condition going in.  Aslo, I'm not sure that a lack of side effects is equal to lack of efficacy.  It may just be that there are so much fewer tumors for the Removab to attack that your body is responding differently this time.  You sound disappointed, but the docs at Hallwang never promised a cure I assume?

Tedd

see the media release on my blog, at the bottom is the german medical report from hallwang with dates and times of treatments.

in summary three removab's 5mcg, 10mcg, 10mcg. three vogels, one vaccine.

i have used NED initially based on our commonly accpted convnetional definitions.

now i am back trying to stay NED, getting advice and opinions from a range of clinics.

but given NED equals no evidence of disease, i consider the ctc's as evidence of disease, so i am not  NED yet. that is why i am  here, for as long as it takes.

the side effects of removab are driven by the ecamp receptor expression throughout our body in stomach, liver , blood vessels etc. see the side effects that phillg found for me all those months ago.

to generate an immune response, to get the tumour killing effect that drove my cea from 81 to 1771 in a week post removab, thats what i want. that first week i was so drained, barely alive, tired and overloaded, my liver hammered by the tumours being killed, and also by detox needs. all that dead tumour tissue has  to be got rid of. i was jaundice etc etc etc.

i am still confronted by the reality of this illness and our mortality. the gentleman John who had the serious removab style response of Friday ( but not removab ) while i had no reponse is in hospital in intensive care, his life support being turrned off soon per his wishes. the conjunction of multiple brain mets from melanoma and possibly the therapies here, maybe not, well soon this wonderful aussie I just really met for 3 days will be at peace soon. This is the nature of the truth of our cancer challenges. I wished he got here much sooner, maybe his outcome would have been better, maybe not. 

I am not really down, I am focused, I am pushing ahead deeper into therapies and research and training than I ever thought possible. I need more sleep. I won't really be able to rest until my ctc = 0 in my mind, and that asir says, we have done all that can be done. how long i have to go, well this part of the path is like the mountain climb.

so effectively I reached the sumit of my everest, i just i realised now getting to the summit is 50% of the battle, getting backdown of the mountan alive and uninjured the other 50%. this final 50% is before me now.

the journey is a marathon not a sprint as we say. to its starting tto look like an ultra marathon.

your comment about lack of side effects equal efficacy is spot on, but i would prefer the side effects. understading the nature of the response and what it implies going forward an unravelling process. the current plan to enhance my p53 suppressor gene function to guarantee apoptosis the current priority in therapy beyond removab here at hallwang. its exciting times, I am enjoying the medicine. I am glad to have met john, to spend a few hours and a few meals, to sit besides his smiling but torchored face in the infusion room an experience i will carry with me.

his decision to do a sydney based immunotherapy trial prior to coming here, telling for me in many respects i won't go into here, except to say my preference to do german style therapies first and conventional second. I hope this does not upset anyone, its just my opinion based on my observations. and i am observing and taking all this rich experience in, at many many levels. my copious blogging of late , my attempt to record a very intense phase of my life and spare my dear friends here my radical and extreme views.

I am literally researching my butt off, I am seeing asir tomorrow to discuss the rgcc results and the difference between the tests and implications for my staying ned plan.

Hugs,

Pete

PhillieG said:

You Can't Spell No Evidence of Disease without NED

"you will not like what you read, what i say and what i think is best for my survival"

For Pete's sake Pete! It's what you think best for YOUR survival. I don't follow your blog but you don't seem like you'd badmouth people for their choices. Everyone gets to choose their path and unlike gravity, which while we're on Earth, will always make objects fall to the ground the same way, different paths give different results to different people. The only time we run into trouble seems to be when people say they can cure cancer which thankfully is not something we have happen. My opinion is that Only a Fool would Claim such a thing and Only another Fool would Believe it.

As far as NED goes, I think it's self explanatory. No Evidence of Disease. I don't see how there could be any interpretation of it. It doesn't mean cured, it doesn't mean not cured. It is what it is...

 

but it hurts to realise how powerless i am to watch a lovely dad die right next to me. his brain fail when the tumours inside it, come under a last minute attack.

everywhere i look, at myself, at my friends everywhere, its cancer cancer. it is what it is, i know tht phil.

basically i am hpv 18 positive, it likely explains carcinogenisis in my case i think in many our our cases.

but again conventional does not test for this. 

i loved what you said about gravity.

basically i am introducing ctc counts as a new test to determine our ned status.

hugs,

pete