Clinical Trial Day Finally Came

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 trial is startling but not what I need to focus on. I need to focus on the hope being given me, very blatantly. 

She explained that the bone marrow involvement is considered "minimal" with only 2 - 3% of my bone marrow involved. She said these drugs will take care of those cells. She shared that most of the people she's seen are doing really well without lots of troublesome side effects. I'm glad Dr. Haverkos warned that things could get worse before them get better so I don't panic if I have any side effects, but I'm also happy to hear of people generally do well 

I am now swimming in the deep pool of conventional medicine, trusting the professionals I'm working with, and trusting God to protect me from the possible negatives. I also pray for the will and discipline to do what I know I can do to help myself manage and even overcome this. 

They took 40 vials of blood to check for everything from hepatitis (all negative) to pregnancy (also negative) - phew! (-:

My Uric Acid keeps going up. She asked if I eat lots of processed meats and drink beer - neither of which I do. She warned that my kidneys may have trouble with the new drugs if they don't treat this so I am starting a medication for a week to hopefully bring that down. Interesting that I know at least 2 of my 13 known 1/2 siblings deal with gout. 

They are concerned about my Immunoglobulin Panel. I should qualify for an IVIG (Intravenous Immunoglobulin- Gobulin) infusions when I go back next week. IVIG is prepared from the blood donated by thousands of people, to make a super-concentrated and very diverse collection of antibodies against many possible infectious organisms your body might encounter. This will depend on insurance but should be approved. My functional specialists have wanted to do this before but my numbers were never quite bad enough to qualify with insurance. 

Good news - my LDH (Lactate Dehydrogenase) has come down from the last 2 visits. Higher LDH levels in blood may be a sign of tissue damage or disease. Blood LDH level can also let your doctor know if your disease is getting worse or whether your treatment is working. 

I continue to have a pesky viral infection, confirmed by my dermatologist via biopsy, around the base of my neck and chest. Fortunately, one of the drugs in this trial is an anti-viral that goes after the Epstein Barr Virus as well as HSV. 

I am not thrilled with another round of antibiotics for the lingering and pesky cough. They are so worried about my suppressed immune system as evidenced by the immunoglobulin numbers, my taking Prednisone for so long, and the killing off of cancer cells over the next weeks - so they talked me into it. Once all this is balanced out and I these attacks on my gut biome are hopefully done, I will probably do the $10 - $12,000 fecal transplant, now clinically called Rebyota, to repopulate my gut with all that the antibiotics and other medications are killing off. (Not to mention weaknesses in my lifestyle over the years.)

As a person who doesn't take Tylenol, for heaven's sake, it feels like mental gymnastics to trust all this:

+ Thyroid meds every morning (I had to have my thyroid ablated (knocked out with radiation) many years ago because of out-of-control goiters. I wish I had tried Iodine therapy first but...you don't know what you don't know...

+ I will continue to take 10mg of Prednisone daily for the next month and then they want me to go to every other day. I forgot to take any Prednisone yesterday and didn't have my emergency stash in my car. I paid very dearly for this with my knuckles swelling to double their size, the painful feeling that my knees were locked up, and my hands and feet and ankles painfully swelling. I had the chills by the time we got home so back in the bathtub I went after trying to warm up otherwise. The rash felt like it was coming on but I tried to fall asleep before it got too bad. Generally I felt just horrible! Prednisone is a miracle drug but it also has it's drawbacks like the bruising and easily torn skin (I bled unexpectedly in one of the offices yesterday from an unknown weird little gash). I also have developed the thickening at the base of my neck and it can cause osteoporosis and blood sugar problems. I've gained a ton of weight on it and my dermatologist confirmed I have the prednisone puffy face. She can see the difference year after year and has lots of personal experience with this. 

+ Patients with EBV-associated lymphomas have inferior outcomes with standard-of-care therapies compared to those with EBV-negative disease. I have always tested positive for various current and past strains of the EBV. Nanatinostat is a selective class I HDAC inhibitor which induces EBV lytic phase protein generation, activating (val)ganciclovir to its cytotoxic form (makes it kill cancer cells). I will take Nanatinostat, HD 20 mg orally once daily, 4 days per week in 28 day cycles. I will also take Valganciclovir, 900 mg orally once daily in 28 day cycles. At this point there is no limit to how long I can be on these meds, as long as they are working. The trial is officially supposed to end mid 2025, but I should still be able to get the drugs, even if off-label. 

+ Another round of antibiotics. LevoFLOXacin 750 mg. 

+ A round of AllopurinoL 300mg to bring down the Uric Acid. 

+ I will have Ondansetron 4mg (Zophran) on hand, in case of nausea from the new meds. 

Because of the unexplained and life-altering rashes that seem to come and go from nowhere, I have stopped all supplements, herbs, hormones. I will restart slowly, with Serrapeptase, that helps clear out dead and dying cancer cells as these drugs start working 1st off - whenever I have an empty stomach - probably when I wake in the middle of the night. It has been shown that cancer feeds off of dead and dying cancer cells so cleaning them out is important 

Then I plan to slowly reintroduce: 

Shaklee plant based protein and Vita-lea multi as a base. 

Daily green smoothies to increase veggies (the only things shown to actually kill cancer stem cells). Add flax meal and Hemp seeds to increase Omega 3s to decrease inflammation. 

Juicing carrots, celery, ginger, beets, ... 

Magnesium at night (low levels have a direct correlation with cancer).

Berberine to help keep blood sugar level. 

Zinc, Vitamin D, Omega 3s, Pre and Probiotics, Methylated Bs, Turmeric/black pepper.

Low Dose Naltrexone - I think I will hold off for a few months since we have no idea how this will interact with these 2 drugs and the cytotoxic effect of the anti-viral once paired with the HDAC inhibitor. 

Capsol-T - as suggested by Dr. Williams in Mexico. It is high dosage green tea extract and capsaicin. 

Growing up, I hated how we would gradually increase supplement piles until it just got to be too much. I am very conservative in what I take. I've paid for expensive tests in the past to see what I actually need. I have learned those can vary greatly over time, diet, and other variables so I don't really rely on these much. 

There is so much to be thankful for! 

+To have personally found this clinical trial via clinicaltrials.gov and pubmed.gov, when I was initially only finding options in other states or even countries ... is a God- led miracle. If people don't look themselves, they are at the mercy of their local oncologist. The APP yesterday was visibly stunned that I was still offered CHOEP when other, better options are here - and more are coming! 

To find an option that is oral drugs. When you are offered IV drugs, it's a life changer. Psychologically, you are in an infusion center with cancer patients. It does something to me. We now know so much about how our thoughts affect our health - identifying and substantiating myself as a cancer patient "with a dismal prognosis" week after week is just not good. And, some of the drugs they routinely use to flush the port lines, reduce the chances of allergic or other reactions, and even saline seem to make me feel lousy. I am hoping that I tolerate (and even thrive on) the 2 meds here and the others dwindle over time as I do better and better. 

I am retired - I can't imaging having to try to function at work or be raising children with what is going on right now. We are financially stable with a warm and comfortable home and are still involved in things that energize us and keep our eyes on what's most important. 

We have a church and church family we love with growing relationships. 

We have wonderful neighbors and new friends in Colorado. 

And we have deep relationships with family and long-time friends we treasure. 

I have been prayed for! A lot. Faithfully by people who love me and strangers too. Someday I think I'll get to understand what this has meant. 

The rashes are better. I can feel them coming on sometimes and I feel a sense of panic. But, in general, things are better. 

We have new hope. As I've shared, the statistics are pretty scary with Peripheral T-Cell Lymphomas. But new breakthroughs are happening. I've been told by more than one specialist that I probably saved my life by denying standard of care. I can't take credit for that - I've been sweetly led and informed through this process. And I've been treated very mercifully when I have fallen short on doing my part. 

So much to be thankful for!