When the rubber meets the road

We went to see Dr. Haverokos at UC Health Ashutz Campus yesterday morning. I was nervous because he has been very clear in the past that "people don't wait with this diagnosis," and "you'll be worse next time I see you." He's a very likable person so it's been easy to give him a pass on these kind of messages. After all, he believes them, I'm sure, so who can fault him.  Yesterday he was wearing a mask, which led us to a discussion that he and his wife are expecting their first and only child. It was fun to celebrate exciting news with him.  After all the greetings, he started to tell us that he has been running an ongoing clinical trial, investigating a pair of drugs that seem to be well tolerated - better tolerated than the other HDAC inhibitors I've tried. (Like Belinostat and Romedepsin). The two drugs use what they call a "Kick and Kill Strategy," whereby an antiviral medication goes after the Epstein Barr Virus in the tumor, a...

What a ride it was to get to the consult with Dr. Williams. The Patient Consultant, while very nice and professional, is not a nuanced person but a technician whose job is to collect labs and scans and documents to prepare patients to meet with Dr. Williams of the Williams Cancer Institute. I heard of this place in Cabo San Lucas from my dear friend I met 7 years ago at the Cancer Center for Healing in Irvine. She said she has met people there who are going to this place in Mexico for treatment with good results.  His book, the Immunotherapy Revolution, is available on audiobook for free on YouTube. The first chapter is found at : https://youtu.be/HsowoDUBwf4?si=KRN4gELgajTGaSAE . There are 7 chapters and I highly recommend people listen to it before they have to make decisions on cancer treatment. I've lost friends I've met on this journey - friends who have been much more disciplined than I - and I wish they had some of this information either as or before they turned to the ...

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...

 I'm up and somewhat itchy but it's different - small scaly patches and nothing as bad as it's been. I've done 3 red light sessions in the last week. Maybe that is what is helping. I also stopped all hormones. The only thing I had changed was upping the testosterone amount with the estradiol. Both the oncologist and dermatologist didn't think this could be the problem but my DO said to just stop it all to see what happens. Maybe that has helped. Who knows. All I know is that, even though I am itchy tonight, it is like having dry skin. I have felt for months like I'm always wearing a miserable wool body suit during the day and fully broken out in the red, raised, terrible rash at night. I'm thankful to be better. 

 I'm having a miserable night. In general, I've been able to take a bath with baking soda, oatmeal bath, lavender, and coconut oil, take a topping 75mg of the prescription antihistamine, a glass of wine, and go to sleep. Tonight was different. The rash is worse and the stinging itch just won't let me sleep. I am tired of thinking about this. The rash is typical of the EBV rash, according to pictures I find online. Sometimes the rash is related to the use of antibiotics for EBV, but I got the rash before starting Keflex and this class of antibiotic is supposed to be less likely to give the rash anyways. I don't know if I should try Lomatium but Jane Barlow thinks so. I don't know if I should restart the Fenben protocol. No one answered me on the Fb site about rashes they've experienced. Do I try Ivermectin?  I'm afraid to do any of this because this night I thought I may have to go to the ER, the red, raised rash got so bad and has been so uncomfortable.  Whe...

I was nervous about seeing the oncologist today. But I woke up early, thinking about how long since I've don'e any real research about what's going on in the world of T-Cell Lymphoma research. I started looking and found there are some very recent clinical trials and I found a meta-analysis from November of this year, looking at several published research articles about what is going on in the world of actual treatment of AITL. It kinda felt good to use that part of my brain again. Some of the best info I found led me to look at Memorial Sloan Kettering in NY, because of some principle investigators:  Impact of Epstein-Barr Virus on Peripheral T-Cell Lymphoma Not Otherwise Specified and Angioimmunoblastic T-Cell Lymphoma. Controversies in the Treatment of Peripheral T-cell Lymphoma. Hemasphere. 2020 Sep Practical Treatment Approach for Angioimmunoblastic T-Cell Lymphoma Alison J. Moskowitz, MD 1 1: Falchi L, Ma H, Klein S, Lue JK, Montanari F, Marchi E, Deng C, Kim HA, Rada...

Hello dear ones.  I am so aware of the honor it is when someone spends precious time with our savior, praying for me! Thank you so very much. And, thank you, Andrea, for calling out the troops when it seemed as if my body was showing signs of the lymphoma "taking off," as the doctors have predicted all along.  Just a couple weeks ago, I thought my body was showing me it was time to listen to the oncologist and jump into a very toxic treatment called CHOEP. This has been strongly (and sometimes aggressively) recommended since diagnosis with a form of peripheral t-cell lymphoma 7 years ago. I am not at all against conventional, western medicine. It has just not made sense to me to jump into treatment with a very low success rate, when the treatment in itself causes significant life and health changes. And I have learned there are other options, albeit those come with time and discovery and faith. I can complain pretty good about the day to day - thinking about this illness ...