Stable PET Scan, a possible clinical trial, and suggested radiation

It's very early. It's Colonoscopy day so I'm up drinking and drinking and drinking the potion. 

I've been catching up on all things medical since the beginning of the year. Ob/gyn, vision, colonoscopy, oncologist, dermatologist (just had a biopsy done on my leg...the lymphoma may be morphing to the cutaneous type and we might want to treat it with light therapy and gels before it spreads). The dermatologist suggested I have some laser treatments on my face because I get broken blood vessels and my nose is quite red/purple as a result of a skin cancer Mohs procedure I had done several years ago for Squamish Cell Carcinoma. I just met virtually with Dr. Raleigh, the DO I love from Restoration Healthcare in Irvine. She monitors my thyroid that I had to ablate with radiation many years ago because of out-of-control goiters. We discussed my concerns about Prednisone and she suggested I start cutting it down very very slowly to see what the minimum is I can get away with. Everything I read says the smallest dose is the best - it can cut down on the blood sugar, bone density, hump and the base of the skull problems. I hate how I am always a combination of hot and cold when I'm on it. It can cause personality changes too. The MD oncologists would have me on much bigger doses if I didn't have these other resources. They just don't think wellness....only fighting disease. 

That's not entirely fair. The oncologist I see in Colorado Springs (Mellott) is a very normal and easy person to work with. She is not threatened by my situation and is even a bit curious when I share the herbs, fasting, diet, detox, mental stuff I do. In fact, she was interested to learn about Lomatium that I suspect is protecting me from Covid. The Native Americans who used it during the Spanish Flu survived remarkable well and I was seriously exposed to Covid over a 6 day period with my sister and didn't get it. It's just interesting and I am grateful she is a bit open. 

I met with her yesterday. I thought I would be talking to her about Copektra/Duvelisib and how the insurance company won't pay for it. We did...and she said Dr. Haverkos in Denver wants to talk to me about a different oral drug clinical trial. I am always open to the info but I don't want to do PET scans every couple months, new surgical biopsies, etc....that I have found go with the clinical trials. And...as much as I like Dr. Haverkos in Devner, he doesn't seem to be able to explain to me why certain drug trials are for certain people (me). It is like they are throwing spaghetti on the wall for T-Cell Lymphoma, hoping something will stick. He's not a natural-born educator like Dr. Shustov in Seattle. 

We talked about my tonsils and adenoids..the PET Scan confirms that they are huge. I thought we would be talking about taking them out. She stunned me by suggesting I treat them with radiation. Gulp. I was instantly emotional inside. She explained that it would be low dose and only take a couple weeks but it would shrink the swollen nodes. She is concerned about how I'd heal if they took out the tonsils and adenoids - since I have been on Prednisone so long. She acknowledged my concerns and said she knew I wouldn't be too keen on it. Of course, my throat felt better when I went in to see her. 

I have agreed to a virtual appointment with Dr. Haverkos to discuss the clinical trial and another with the radiation expert to discuss doing radiation on my tonsils and adenoids. I don't really intend to do either unless I learn something very compelling. 

I left the appointment very emotional. Whenever I am at a fork in the road and chemo or radiation are presented as options, I sort of fall apart inside. It feels like a slippery slide I don't want to get on. I seem to be in a month-to-month waiting game and I just want to move on. My energy is very low. When I walk or hike, I run out of steam like I never have before and it's like I have run a marathon for the next 24 hours or so. I am sometimes disheartened because I so badly want to build a new, healthy, active life as a newly retired Coloradan, but I don't have the energy. Dr. Mellott says this would motivate many people into treatment. I am looking for treatments but feel that the Standard of Care would be the beginning of the end of my health. If I had to do it to stay alive, of course I would. But that is not what God has shown me to do. 

In general, I am very thankful for the stability of this disease. I know I am so fortunate. As I've mentioned before, I am on facebook with people from all over the world with various T-Cell Lymphomas and another group of AITL patients, specifically. It is ... daunting. They are almost all doing conventional treatment. They have a very tough road with 5 - 6 drug cytotoxic chemo to start, bone marrow transplant if they get into remission, almost always a relapse (many times before they can get the transplant), salvage chemo, trying other drugs, and many times the family announces they died of organ failure or of the disease. With a mean survival rates of 19 months after diagnosis...this is a tough one.

But then, here I am...4 years after diagnosis. It sounds trite, but I am certain it is the prayers of so many people on my behalf that has made this possible. Yes, God is at play and he has a plan. 

I'm reading a great book, Evidence Not Seen, about an American missionary held captive by the Japanese during WWII. If you ever want to strengthen your faith in God's active involvement in our lives, read this book. It's riveting and convicting and is helping me rely on and trust him more. 

So...back for another glass of yukky sweet fiber-filled gatorade. I had an abnormal polyp removed about 5 years ago. Hopefully nothing unusual will show up today. 

Thanks for reading. This is the only place I keep track of the details which helps me. Everyone is so busy...I am always amazed anyone reads these. I appreciate the support, concern, and especially the prayers. Hugs!