A new clinical trial with lots of hope.

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, and then kills the tumor. The "kill" strategy is to go after specific mutations such as Row A (classic for AITL) and Tet 2. The HDAC inhibitor in this case is more targeted with less side effects. 

These drugs are taken orally, which is much better than IV, as I've learned. When you do drugs via IV, they come with several other drugs that inhibit allergic reactions and other negative side effects, but that make me feel lousy. 

To qualify, I have to have a tumor (swollen lymph node) greater than 1.5cm and be taking less than 10mg Prednisone daily. I need a new bone marrow biopsy and head CT to make sure the lymphoma has not spread to the bone marrow or brain. I'll have to go to Denver ever 2 weeks and get new PET scans every 2 - 3 months, indefinitely. 

I asked Dr. H if the goal is remission or just management of disease as in the past. He told us of a patient who has been on this regime and essentially in remission for 2 years. They keep wondering if they should keep him on the meds or take him off. Since he is having no side effects, he plans to stay on the drugs for now. 

The drugs are Nanatinostat and Valganciclovir. I will have to go through the evaluation process over the next month or so, between trips, for them to make sure I qualify. 

It sounds promising. 



Comments

Post a Comment

Popular posts from this blog

Ya, I'm starting cytotoxic chemo tomorrow.

 The MD/Researcher, Dr. Haverkos, called this afternoon to talk about yesterday's PET scan. It appears the first couple months the drugs held the disease at bay but the last two months, it has take off. After asking other questions I don't have the energy to share right now, he suggested I go into the hospital tomorrow and start Brentuimab and CHP. The letters all stand for drug names.  Again, I'm struggling to stay awake so I'm not including as many details right now.  The time in the hospital is a stretched out series of IVs, instead of the usual doing it all at once, to protect my kidneys that already seem stressed. The first round of chemo (I will do 6) kills off the most tumor load, so stretching it over a week is a good idea.  After 2 months, we will do another PET scan to see how we are doing.  I feel like it is time to get after this and see if we can actually get it into remission. He mentioned a Bone Marrow Transplant, which I hope we don't have to do....
Read more

The good and the bad - accepting both.

 I'm thrilled to report that the port wine colored blotches that look like huge deep bruises on my legs are looking better! I thought they were permanent. My hair is falling out faster than I expected. I guess things are just as they should be: cytotoxic chemotherapy kills newly dividing cells, healthy or cancerous. The lymph nodes in my neck are definitely reduced. I'm having night sweats which is a "B" symptom of lymphoma.  I'm 12 days out from the last chemo so I kind of expect to feel really good by now but I realize I am not sure what that is. My muscles all hurt. I'm going to take an Epsom salt bath in a bit. Is it the lymphoma? the chemo? or from being so sedentary? I don't know but I hope it improves soon, especially my neck, which really hurts a lot of the time. We keep trying remedies. I go to a a chiropractor, an acupuncturist, and a massage therapist and my hubby puts patches and CBD pain stuff on it all the time. It has resolved in the past bu...
Read more

Staying flexible and trusting in God's perfect timing

Image
Howdy. I so hope your 2025 is starting off well. We had such a wonderful holiday season with an exceptionally fun time celebrating my 60th birthday, the end of 2024 filled my emotional cup in a very special way. It's been nice having these unexpected free days since going into the hospital was postponed to get organized a bit, meet with friends from my Al-anon group, see our small group from church, go to church which I love, and just regroup after such a busy time.  I got another call today from the nurse transplant coordinator. It turns out donor #2, from Poland, is not eligible to donate for some reason. The nurse explained that donor #1, from Germany,  was re-contacted - she had told the doctors she could not donate for at least 2 weeks later than what they wanted. Because there is some danger in waiting (if the lymphoma comes back, I'd have to do chemo again before transplant), they had gone on to #2. The first one is now able to donate 1/30 so I will now go into the hosp...
Read more