When the rubber meets the road

That is the question that goes through my head. It feels like I am made of concrete, walking through mud, and that I just can't support my own frame. I just crave to lay down most of the time.  I started the new medications Monday, the 18th after 40 vials of blood being drawn and meeting with Kelsey Watson, NP who works with those on the trial. Interesting that they have less formality in their protocols than the other times I tried "targeted drugs." Each time they make you meet with a pharmacist for "chemo teach," detailing what you should do if you get different side effects, and teaching you all about the drug. None of that this time.  The drugs are interesting. The anti-viral (Valganciclovir) goes after the Epstein Barr Virus in the cell. When the HDAC inhibitor, Nanatinostat,  then interacts with it, the anti-viral becomes cytotoxic (kills cancer) and the cell dies. It is not traditional chemo that kills all newly dividing cells, healthy and not. Targetted ...

Thank you to so many who have reached out with support. When I hear a person is praying for me ... it helps turn fear and doubt into knowing I am safe. I am very very blessed!  Yesterday was a challenge to get through but we got some really good messages from Kelsey Watson, NP and APP (Advanced-Practice Provider). She's worked with others in this clinical trial and had lots of very encouraging things to say.  I asked her about the implications of them finding the lymphoma in my bone marrow for the first time. I know this makes the lymphoma Stage 4. I've always been Stage 3A (lymphoma found above and below the diaphragm) or 3B (when I've also have "B" symptoms like night sweats, fevers, weight loss). I purposefully didn't get online to look for data since finding this out a few days ago. In the past, I've found things out I didn't have the heart to share with anyone else and I don't know if that's good for me. Even the data for this clinical tri...

I don't generally go back and read my posts before writing a new one so please forgive me if this is redundant.  It has been a very tough time.  I think about how I've generally felt well since diagnosed 7 years ago. I have met people who were sick right away. I have met people (and have gotten to know many on social media) who were diagnosed similarly to me through biopsies with a swollen lymph node or two) who were sick because of the treatment prescribed, many getting the bone marrow transplant(s) once in remission, only to relapse and even pass. They've been through hell. To be honest, I have not run across any others with AITL who have done the "let's wait to see what my body tells me" strategy I've used. I've tried 3 targeted drugs I couldn't tolerate. I've found myself wondering if I gave them enough of a try.  In December I seemed to tank. I felt terrible, had the horrible rashes, felt bad, and the lymph nodes in my neck grew extensivel...

So we went on the Rock Legends Cruise, itchy and with swollen lymph nodes ... thinking it would be a diversion and I can miserable at home or there. The problem is that I got worse and worse on the ship, to the point that I knew I needed to get home. I contacted the coordinators of the clinical trial and they were able to move the Head CT, Body PET, and Bone Marrow Biopsy up to March 11 and 12. I'm a bit freaked out that the biopsy will be without general anesthesia. It's bringing lots of memories back of 7 years ago. We then still went to the timeshare for 5 days with our dear friends. Thankfully, they were totally game for a very laid back time together. I slept a lot during the days. Why are rashes so much worse at night?   My hope is that, once I start the clinical trial drugs, I will feel better. That my neck will shrink back to normal, that the feeling of illness I get overwhelmed by will subside, the rash will subside, and the side effects of the drugs will be manageabl...

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...