Looking for next steps - Williams Cancer Institute and Dr. Haverkos, again.

I'm sitting here not knowing where to start. I usually have some idea of what I want to say here. I usually have something specific I want to document. 

Tomorrow I have a consultation with Dr. Williams from Williams Cancer Institute in Cabo San Lucas. He also has an office in Santa Monica, but most treatment happens in Mexico. His book is called the Immunotherapy Revolution and is available as an audio book free on YouTube. Here is Chapter 1. https://youtu.be/HsowoDUBwf4?si=Egsy4YjjFI7iFa03. You can look up the following 6 chapters on YouTube as well. It is so important that people realize that breakthroughs happen and are even reported in good, reputable peer reviewed journals, but they won't be available to patients in the oncologist offices for about a decade. That is documented in the main-stream literature. Unfortunately, to go out of the country to get to some of these options, it's cash only and very expensive. But...sometimes it's what you have to do. 

I have no idea if his treatments will work for me but it took a lot of work to get him all my records so I am going to meet with him via Zoom to find out. His specialty is intertumoral immunotherapy. Since I don't have bulky tumors, just swollen lymph nodes, I have no idea what he'll say. It was a bit frustrating not to be able to get some idea before going through all the steps to a consultation, but who knows. I might just learn something. I learned about him from Kiyomi; several people she knows has been using them with good results.

Monday I go to see Dr. Haverkos at UC Health in Aurora. He told my oncologist who reached out to him that he has "something new for me that is not cytotoxic chemotherapy." I suspect it will be another targeted drug, When I did one of the mandatory "chemo teach" sessions whenever you start one of these drugs, I asked if they are chemotherapy. She said that anything that deals with cancer is called that, informally. But cytotoxic chemo is so different; they are the ones that kill dividing cells so they are essentially killing all new cells - healthy or not.  I've tried 3 with pretty high hopes but I could not tolerate them. We shall see. 

I'm taking about 17mg of Prednisone every morning and 5 in the evenings. If I don't, I can feel my hands and feet swelling, the back of my left knee swelling, and my joints start to ache. I keep trying to cut it down but the symptoms increase. I have some easy brushing and I ripped some skin on my arm the other day when I don't think it normally would have happened. Bone loss is a possible side effect too. 
I really need to find a way to do some weight training, consistently, to mitigate this. Also, I have done some reading lately that muscle mass is the #1 indicator of how well people do in cancer treatment. 

I think that I've been living a great life for the last 7+ years, since diagnosis, but I have also been sort of waiting for the guillotine to drop. I've let some wellness stuff go - stuff I have just not wanted to do - because the long term just hasn't seemed very important. I hate to admit this stuff but I feel it's more important to be honest than try to fake some kind of wisdom I haven't had. 

I am nervous to hear what Dr. Haverkos may say, especially, because we have so many trips planned through June! So many great opportunities came up and we just went for it. I have no idea what he's going to suggest. If it makes me feel yucky - the travel might be hard. 

The biggest symptoms that cause me to be looking for my next steps, besides having to use so much Prednisone, are the lymph nodes on the left side of my neck. They are still big and hard, still feel like they are pressing on my wind pipe, and I feel I am more out of breath than I should be. I also made the mistake of reading about a woman who died painfully with the same kind of lymphoma on Fb. I don't know the details. It just kinda got into my head.  

We shall see and I'll record the details of those appointments soon. All the best! 

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