Choosing What to Believe....can be a challenge, but it is crucial!

I made an appointment with my oncologist after reaching out to her about how bad I have been feeling. She started out by giving me a copy of a study she had found on the drug we want to try next, if needed. I've talked about it before, it's called Duvilisib or Copektra and Dr. Shustov in Seattle told me about it last summer when I consulted with him. He claims to be getting about 70% remission with his elderly patients who he doesn't want to put through Chemo and the Bone Marrow Transplant. That is pretty remarkable-almost unbelievable. 

Anyhow, because it is not approved for my kind of lymphoma, we have to jump through these hoops of trying at least 2 other "failed" treatments. I did an IV today and have 1 - 2 more planned, each a week a part. Then we plan to stop it. It has worked in that I am reducing the Prednisone gradually without swelling, my tonsils are down to normal, and lymph nodes are smaller. But....I'm not tolerating it well with lasting feelings of being very sick and fatigue that is unbelievable. My muscles go weak and shaky and I have no choice but to lay down - even as much as 10 days after my last IV; it is very unnerving. 

The first line on the study she handed me (paraphrased): The median survival for patients who have "failed" 2 other treatments - 6 months.

I don't share this to scare anyone. I had a little stomach-drop moment and then realized how different my reaction is from when I was first diagnosed and one of the doctors introduced himself as, "Well, this isn't the kind of lymphoma you want to have." Or when I was online early on and found the prognosis of 19 - 30 months with full normal treatment. I want to print out good peer reviewed science about the Placebo Effect and give it out to these doctors. There are a ton of research that proves that many doctors die almost to the day of their prognosis - often without other explanation. 

It's so hard to understand but I guess it's summed up by another conversation I had with an OB/GYN who seemed pretty open when he asked my story, dressed in work out gear, talking about his own intermittent fasting. After we talked, he said that he believes cancer can be prevented by food and lifestyle, but not cured. I told him it takes meeting a couple dozen people who have beaten cancer they shouldn't have beaten to become a believer. He seemed intrigued....but they never ask where we get our info, who we follow, or anything like that. I just pray God brings each of us the right influences, people, knowledge for each of us. 

The biggest problem, I suspect, is that we are all so scared to be proven wrong, that we might not be open to new info. I am praying against that in my life because I'm just as susceptible to it as anyone. Becoming entrenched is dangerous. 

The other issue I run into is people think you have to spend a fortune like I did at first to beat cancer with things not covered by insurance. Believe me, you can...but I don't buy that anymore. I just can't be part of something that is only available to people with big resources. I got so sick of watching people cash in their 401Ks, sell their homes, etc. It just isn't right. Don't get me wrong - people have the right to do it if they chose and the alternative centers can be amazing with real options available nowhere else. I just chose not to go there anymore. 

So...tonight I'm grateful to report this afternoon and evening hasn't been too bad - not as bad as the other 3 IV days/weeks with Romedepsin/Isodax. We shall see how it goes but I am grateful for now. 

God bless and keep you!