Back to the drawing board

I was reminded the other morning how important it is for people to be heard. I sometimes wonder if that is one of the problems with this crazy time we’re all living through. People feel talked at by the news, social media, others with all their opinions of what is going on politically, with  Covid-19, spiritually, socially. I call it a mic-drop culture where people want so badly to be right and we are overwhelmed with conflicting information, so we just aren’t listening. 

Writing my thoughts and being aware that some people actually read them can feel daunting and, as I’ve shared before, can make me feel exposed and vulnerable. But, I was reminded again, by such a sweet message yesterday that there are people who are actually interested in my thoughts. Thank you! I wonder how much this has helped me over this past few years of processing the diagnosis and prognosis. Somewhere down deep I have been helped and healed by feeling “heard” through you and I am grateful. 

It’s been a time of trying Belinostat and being surprised by how hard it has been, feeling pretty yucky for periods of time, feeling better only to have the uncomfortable symptoms  come back, finding Prednisone to help a lot, and now deciding with the doctors that Belinostat is not working for me. We met with the T-Cell Lymphoma research oncologist from UC Colorado Health Monday. It was somewhat frustrating. The oncologist in Colorado Springs had given me a heads up that he was going to offer a clinical trial of Romedepsin (another Histone inhibitor) and Tanalisib, which is  called a Dual Inhibitor. 

I had expected to try Remedpsin alone next. I had questions about why we might think another histone inhibitor would work when Belinostat didn’t. He explained that they are different in what histones they target…

I asked if we could manage just symptoms since it appears the PET scan I did 7/6 looks pretty stable compared to the last one in Feb. He feels that, although changes don’t look dramatic, they are still changes that show disease progression and “he’d expect to see me look worse when I returned in a few months if that is all we do.” It felt like a challenge; keep in mind that he is completely conventional and glazes over if I talk about nutrition, supplements, or anything considered “alternative.” He added that, should I chose that path, we should also add Cyclosporin, another drug he couldn’t really tell me why I needed but that it as “at least a common protocol.” 

He did acknowledge that we’ve surprised them already. Keep in mind that the City of Hope testing told us the lymphoma was doubling every 34 days at the beginning and several doctors have pressured me to jump into CHOEP (5 drug cytotoxic chemo as standard of care for T-cell Lymphoma and so many other cancers). But, the statistics where overwhelming that almost everyone with this relapses after going through all the treatment, only to jump back into another treatment and another for an average of 19 – 30 months survival. It just didn’t make sense to me at the time to rush into that.

I have tried many alternative measures and really focused (and spent a ton of money) the 1^st year. Then I sort of shorted out and have had trouble doing it all since. I feel like I’ve been throwing spaghetti at the wall, which I would not recommend. On the other hand…my PET scans have stayed stable. We have been led and sometimes I feel I am being taught through the uncertainty and lack of self-discipline to trust. On the other hand, I sometimes feel the latter is a copout and I need to get with it. 

I have had more and more “constitutional symptoms” that can be pretty hard to deal with. Sometimes I look like I have water balloons under the skin of my wrists. My hands and feet can look huge like I am a cartoon. I get swelling in weird places like 1 knee or one toe or whatever. I get strange hard marble-like bumps in my hands that hurt. I can feel lymph nodes get bigger and recently the areas can ache. When I sought the advice of the T-cell specialist in Seattle earlier this year, I felt I just needed to do something to “turn it around.” 

I was so shocked when he congratulated me for following my gut and research these past years and even intimated that I may have saved my life by avoiding a bone marrow transplant after CHOEP. And…he introduced us to these new targeted chemo drugs that don’t promise remission, but maintenance and help with symptoms. 

(I’m sorry I am probably repeating myself. I don’t look back at past posts but only process what’s going on currently.)

Anyhow, back to Monday’s meeting with Dr. Haverkos in Aurora – I left there with the very clear realization that they don’t know what works for T-Cell Lymphoma and that they are continuing to try this and that combo. He isn’t a good teacher; he really can’t articulate why this trial would be a good option for me other than I have T-Cell Lymphoma and they are trying to figure out if this will work and for what subtypes. 

I was discouraged when he said I’d need a new bone marrow biopsy, probably a lymph node biopsy, and PET scan to start the clinical trial. I will have to drive an hour each way once weekly for an 8 hour day of IV and I’d take a pill twice daily. I’d have to have PET scans every 2 – 3 months, which is a ton of radiation. Uncomfortable side effects are common. Boy do I hate this world. 

On the positive side, I might be able to contribute to a  big T-Cell breakthrough like they’ve had with B-Cell Lymphomas. And…the only way for me to get this drug regimen right now  is through a clinical trial. It could be a synergistic success that could help me for a long time or maybe even give me full remission. 

We left there with no idea whatsoever of what to do and he looked perturbed when I said we would think about it and pray about it and get back to him. 

I have learned to pay attention to my gut reactions to situations and at least take them into account. I felt sad when I learned about the details of the trial. I felt excited when I thought about getting myself going on some of what I’ve learned might help my body fight naturally and proving this doctor wrong…again. 

The clinical trial coordinator called yesterday to give me more info. I asked how many patients they have in the trial so far because she said those she is working with are “doing well.” She told me they have 5 patients and that there was a past trial with these 2 drugs. I asked her to send that to me; the trial had a whopping 4 patients in it and 1 dropped out. It didn’t tell me anything about results; they were just testing to see if the patients could tolerate the two drugs together and at what dosages. It’s understandable how they are having trouble finding what works with such small numbers of people to test. 

When people ask for me for advice for themselves or a loved one with a new cancer diagnosis, the one thing I feel confident saying is that they can stop to breathe and pray and explore some options. Most oncologists create a fire-drill atmosphere after diagnosis and I remember feeling like we had to rush to beat the cancer from spreading. Most cancers take years or decades to develop and so taking some days or weeks to get oriented is usually a good idea. 

I think we all have to have time to come to terms with the physical shock of the diagnosis and come back to center. We need time to really process this perceived threat to our lives and grieve the loss of our illusion that everyone else dies but us. It sounds stupid but I believe it’s how we really think. Is dying really the worst thing that could happen? What if you are sick sick sick while dealing with cancer the way the cancer industry believes it should be dealt with – kill the host if you have to but get the cancer at all costs. Maybe the growing thought that many cancers can be managed if the body is strengthened rather than pummeled is something to consider? What does quality of life mean to you? What role does faith in God play in the decision making? Is he in the lead or just along for the ride and what does that mean to you? These are things each individual needs to decide for themselves. 

And…believe me. I understand the desire to turn yourself over to a doctor who takes the responsibility for the whole thing. I essentially did this when I started targeted chemo. I haven’t concentrated on my diet or supplements or meditation or detoxing or anything really. I once told everyone about fasting around chemo because there is science that shows it helps with side effects and makes it more effective. But I found food so comforting and a Bud Light Lime is all that could make me feel better after coming home from getting the IVs sometimes. Humbled again! 

So…for now, I am “pulsing” Prednisone when needed for symptoms and taking a little time to think and pray about it all. I am not anxious about the prospect of sitting in that IV chair again and potentially feeling awful. Once I commit to the trial, it would be very hard to change course – indefinitely. Long term effects are not known yet and I get very anxious when I think about possibly regretting a decision later. God has been faithful in leading us throughout this thing. In short, I need to and want to trust that he won’t stop now. 

                                                               

Oh ya, and I’ve made a telehealth appointment with Dr. Shustov in Seattle to get his opinion on it all. I sense the doctors in Colorado know and don’t like him but he can at least teach and encourage rather than just shrug his shoulders all the time and keep saying they just don’t know. We’ll see what he has to say. 

Love, health, faith, and joy to you. Thank you again for “listening.” Cath