More relief and more questions...Management or cure?

Yes, we traveled to Seattle, Washington when it was considered ground 0 for the coronavirus. I so hope we never regret that decision. 

As I detailed in the last post, we went to see Dr. Andrea Shustov who I learned about from patients on facebook who said he was different. 

We left there stunned that this expert didn't chastise me for waiting so long - in fact, he congratulated me for my decisions! We finished our time at SCCA house and flew to Colorado. What a difference 3 days made - lots more masks on people in the airport and planes. 

I made all the kids wait until we had changed and washed up before we could hug. The grandkids were so excited to see us. What medicine!

My the end of the night we got home, I was really hurting though. People ask me what my symptoms are. I know I look healthy and when I am at work or out, I am using all of my energy to be functional. But, when it hits- it's as if I have the full-blown flu. I get the chills, ache and hurt all over, my hands and feet, wrists, ankles, and more swell and hurt. My throat swells more and hurts. I am just miserable. I have a new symptom - my left jaw is stiffening so that it is tough to bite food and it can hurt to chew (at least I hope it is a symptom that will get better with treatment). My fingers dislocate when I am trying to do things like blow-dry my hair. I can't peel things. My fingers actually get stuck at 90 degree angles until I force myself to straighten them out. My cartilage all hurts with any kind of contact. 

Yesterday I did absolutely nothing. Thankfully My Drew was up for cooking or I just would not have eaten. 

This morning we got up very early to go see Dr. Bradley Haverkos at University of Colorado Health near Denver. He is the T-Cell Lymphoma person for U. of Colorado. I was nervous because we've been coming to see him for about 2 years; this is the 4th visit and we've never done what he said I should do. 
We caught him up on the new biopsies, new labs, and the modified diagnosis. We went over the escalating symptoms. He went into the chemo therapies he would suggest. He is one who downplays the seriousness of the treatment, the possibility of long term ramifications, and the danger of the transplant. He said that, because of my health and age, they would expect 30 out of 100 people like me to get into remission and 40 out of 100 to stay in remission (be cured) with transplant. That means that 7 people go through treatment before 1 is put into remission. To him - that is great. I can't imagine doing his job all day. Thinking about it - how we learned from Dr. Shustov (number needed to treat/harm), makes me take pause ... again. 

Then, he really excited me by mentioning Balinostat and Romedpsin for management. We talked about it he said he liked the idea of Belinostat. But then he also talked about the possibility of a clinical trial of Romdepsin combined with a Kinase Inhibitor. Dr. Shustov had talked about the promise of combining these kind of drugs. It sounded so exciting. He wasn't sure I could do the clinical trial without having already gone through chemo first. (and relapsing). He'll call tomorrow. The downside - these IV treatments are indefinate. For Belinostat, I would need to go get 45 minute IV infusions Monday - Friday and then take 14 days off - then back to 5 days of IV (with some flexibility for vacations and stuff). He would set me up with an oncologist closer to our home in Colorado for treatment and he would supervise. If I ended up feeling well, we could find an oncologist in Southern California to take over so I can work. With Romedepsin-it's a long IV once weekly for 4 weeks (in Denver an hour away) and then a couple weeks break (with no flexibility because it's a clinical trial). We left encouraged and relieved and excited at the possibilities. 

Today I did a bit of research and found a couple good resources. This is one of the best overviews of this particular lymphoma
https://lymphoma-action.org.uk/types-lymphoma-non-hodgkin-lymphoma-t-cell-lymphomas/angioimmunoblastic-t-cell-lymphoma-aitl-and

"Belinostat is a histone deacetylase (HDAC) inhibitor that blocks tumor cells from growing and dividing, causing cell death. Similarly, another HDAC inhibitor, romidepsin (Istodax), has been approved to treat PTCL in patients who have received at least one prior therapy."

Unfortunately I found information that Robedpsin can cause a reactivation of the Epstein Barr Virus, which has been shown to be a precursor of this lymphoma (as well as HIV and Hep B). Something to ask about and try to put to rest when I speak to Dr. Haverkos tomorrow.. And then there is a possible anemia problem with Belinostat. Ugh.

Also, in my reading today, I found passages that talk about people dealing with the lymphoma symptoms with steroid drugs alone. I started on 5 days of prednisone today, which both doctors said should help my symptoms greatly. That's a drug I have resisted for problems in the past because of what they can do to the immune system. But I will ask the doctor tomorrow about how this may be managed with steroids as long as my PET Scans and bloodwork are stable. 

We shall see. Thanks for reading and caring...be safe and healthy!!! C