Have stage 4 HNSCC or so they tell me. Was told on July 23 2019 nothing to worry about. 95% chance they would get it. Said I would see my 4 year grow up and graduate highschool. 35 days of radiation..a feeding tube and 3 rounds of chemo later they said we got it. Then on July 5 2020 they told.me they were wrong and it had ended up in my lungs. Told me I was incurable..
They told me I was down to only one option.. Immunotherapy could possibly help me with my PDL1 issues. That they might be able to extend my life.. Three scans later they can't find my cancer but they tell me it is most likely still there.
Had to try something else as they seem to not really have a grasp on this thing. Diagnosis is not prognosis so began to research Cancer as a metabolic disease.. therapeutic Ketogenic diet... eat to beat cancer. Angiogenesis Foundation and Care Oncology UK.
This has all been so confusing??? Dont know who or what to believe???
Just know I got to make it to that graduation.
Living somewhere between faith and fear. The stars and the floor.
Hi Notdoneyet
Sorry you have found yourself in the battle again.
There have been some remarkable results with immunotherapy and it seems you have responded well. Are they keeping you on it for the full two years?
The problem with our cancer is that sometimes it spreads early and hides and that spread is already there when we present with symptoms. The doctors cure the primary disease but the secondary disease is invisible at the time. Maybe there is a case for attacking this disease with immunotherapy right from the outset along with the Rt and Chemo. I think there is research on this already
I know what I believe. These alternative theories are rubbish and give false hope to people in dire need of an answer. If they worked every oncologist in the world would be treating people that way.
From your post do I detect that you might be in The States?
Would your insurance pay for the full two years immunotherapy, because that is what I would fight for.
Good luck and my very best wishes
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Hi. I didn't say keeping healthy and looking at your diet and exercise didn't have any impact, of course it does.
Just think that only 10 years ago no one thought ones own immune system would have the power to attack cancer.
But it has been known for many years.
Efforts to modulate the immune system have been made for over a hundred years.
Thirty years of research led to the first checkpoint inhibitor being used for melanoma.
Our immune system destroys cancer cells all the time. Immunotherapy therapy drugs don't "boost" the immune system. They work in a different way. Cancer cells develop a strategy of hiding so that immune cells don't recognise them as foreign. Immunotherapy disrupts this system so that they become visible and open to attack. Different cancers have different ways of doing this which is why a variety of agents targeting a range of defences have been manufactured.
This community has a number of people who are in a position of last resort and it's wrong to give them false hope in an idea that dietary changes can achieve what their therapy hasn't.
I hope you keep healthy and wish you well
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
