Back to One Day at a Time having "dodged a bullet."

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, MD1

1: Falchi L, Ma H, Klein S, Lue JK, Montanari F, Marchi E, Deng C, Kim HA, Rada

A, Jacob AT, Kinahan C, Francescone MM, Soderquist CR, Park DC, Bhagat G,

Nandakumar R, Menezes D, Scotto L, Sokol L, Shustov AR, O'Connor OA. Combined

oral 5-azacytidine and romidepsin are highly effective in patients with PTCL: a

multicenter phase 2 study. Blood. 2021 Apr 22;137(16):2161-2170. doi:

10.1182/blood.2020009004. Erratum in: Blood. 2022 Mar 10;139(10):1600. PMID:

33171487.

The last one has Dr. Shustov involved, who we went to see in Seattle a long time ago. He was a huge help. 

I thought about if I need to go to one of these people who are looking at the cutting edge of what might work for AITL. There is a ton of info, most still calling prognosis "dismal." But what if they are right on the verge of a real breakthrough?

And I am still being offered CHOEP, which almost always fails long term. 

I found a recent article by Dr. Haverkos, who I've gone to before from U. of Colorado. 

Nanatinostat (Nstat) and Valganciclovir (VGCV) in Relapsed/Refractory (R/R) Epstein-Barr Virus-Positive (EBV ⁺) Lymphomas: Final Results from the Phase 1b/2 VT3996-201 Study

Bradley M. Haverkos

It made me think that I may need to give him another chance. I really don't like how he says things like, "You'll be worse next time I see you." He clearly believes that a person with this lymphoma should be going after it and not waiting like I have. It was about this time 3 years ago, I think, that he told us it was just stupid to wait until after the holidays to start treatment and/or get into a clinical trial that would require PET scans every other month, going off all supplements and herbs so they could study whatever concoction they were studying... On the other hand, sometimes trials can give you a chance to try things not available to the public yet. 

Also, I just don't want to go to NY or MD Anderson in Texas and be away from my family. 

So I went into my appointment, armed with how I have known so many people for whom CHOEP has hurt their health so much and I am wondering about some of these things I am finding online. Dr. Mellott looked tentative when she came in. I presented her with a poinsettia and kind of ignored that we had engaged in a tense conversation over the phone. 

I told her it seemed to me that we understandably thought the escalation in my symptoms was the lymphoma but that it actually seemed to be EBV. I gave her a copy of the research on people with active EBV and AITL and she was receptive. I also gave her a copy of my skin biopsy, showing it was probably from the virus, not the lymphoma, and the labs from the DO that showed EBV raging. I wish I had thought to talk about the hs-crp. We discussed the recent scan and the new lymph node in my chest. It's not huge, but we will now keep an eye on it. I wonder if it is affecting my breathing. I am so out of breath with any exertion, it makes exercise hard. 

When I showed her Dr. Haverkos' research article, she asked me if I'd like her to contact him. I said she could or I could. She said she would and she'd also ask if he wants to see me. 

I told her my theory that the EBV was bettered by my use of the herb Lomatium but that I had gotten lazy about taking it the last couple years and here I am. She asked if she could do EBV labs so we could measure how I improve if I start taking it again. I LOVE that! Maybe we can get some objective info. And, maybe she will learn about something that could help someone. I doubt she could ever suggest it clinically, but who knows. 

I left there with a follow up appointment with her in 6 weeks and the feeling of fuzzy headedness that I don't really like. I know I dodged the CHOEP bullet. I actually have ordered special mouth sore medicine and some soft beanies because my hair was supposed to be falling out by now. I'm relieved but a bit numb, back to not knowing and needing to just live my life day by day, without a plan or direction. It's not an easy place for me to be. 

I emailed Leslie Barlow from Barlow Herbal tonight. I can't believe it's been 4 years since I started thieir Lomatium product and almost lost my mind dealing with the rash! My DO in California uses it for EBV and other things because I told her about it. I asked Leslie if she's ever seen someone start it when they already have a rash from EBV. We shall see what she says. She's super knowledgeable, for sure.