God's timing, just in time? I am counting on it.
I don't generally go back and read my posts before writing a new one so please forgive me if this is redundant.
It has been a very tough time.
I think about how I've generally felt well since diagnosed 7 years ago. I have met people who were sick right away. I have met people (and have gotten to know many on social media) who were diagnosed similarly to me through biopsies with a swollen lymph node or two) who were sick because of the treatment prescribed, many getting the bone marrow transplant(s) once in remission, only to relapse and even pass. They've been through hell. To be honest, I have not run across any others with AITL who have done the "let's wait to see what my body tells me" strategy I've used. I've tried 3 targeted drugs I couldn't tolerate. I've found myself wondering if I gave them enough of a try.
In December I seemed to tank. I felt terrible, had the horrible rashes, felt bad, and the lymph nodes in my neck grew extensively. Then we discovered EBV was raging (some of that info was a misunderstanding of labs by yours truly). But I improved with antibiotics because labs definitely showed some kind of infection.
Pubmed and Clinicaltrials.gov research brought options like traveling to Texas or New York for cutting edge treatments. I tear up every time I go there because I just don't want to be away from my family, home, life, and friends any more. We had a consultation with Dr. Williams from William Cancer Institute in Cabo Mexico. Essentially we'd be shooting in the dark on which immunotherapy drugs for him to use without a $12,000 test called Nano String Analysis. Sometimes he can get the cost lowered by batching or using different labs, but they usually take a really long time. I would also need to either have a new tissue biopsy or convince UC Health to share tissue, which they wouldn't do before so I doubt they would not. While discussing with Dr. Williams, comments were made like, "a patient may spend $150,000 for treatment but our foundation is kicking in more like $400,000” Ugh. He suggested I contact the NIH to see if there is any chance of getting the Nano String as part of a study or something. The directions were vague and the conversation was...interesting...with him talking way too much about famous and wealthy people coming to him. Essentially we came to the realization that I might go to him if "my back were against the wall" and he'd try what has worked for another lymphoma patient once. Yes, there are some red flags with that statement.
I asked him if he had any advice at this point. He said that, if he had cancer, he'd use Rebyota. I recognized it quickly as he started to describe it as the fecal transplant procedure, although I didn't know the name of the prescription. I've read about it but not for cancer. He stated that every cancer patient's microbiome is messed up and this holds great promise to help the body overcome cancer. I've learned I might be able to get it through The Cancer Center for Healing for $10,000 instead of the usual $12,000. I haven't asked Dr. Raleigh about it because I am having trouble getting an appointment with her...again. It's a matter of a medical assistant who controls too much there. There other advice he gave was to look into Capsol-T. This is a product based on ECCG - essentially Green Tea and Capsacian (chili).
We went to see Dr. Haverkos, the T-Cell Lymphoma expert for UC Health and physician/researcher that I had discovered has been conducting a clinical trial on AITL and EBV - back when I found the options in New York and Texas. It seemed tailored to my situation, not cytotoxic chemo, and oral, versus IV based drugs, which is so so nice for many reasons I've probably explained many times before. It took quite a while to get an appointment with him. He confirmed that I look like a good candidate but that I needed a new PET Scan, new CT of head and more, and bone marrow biopsy.
In hindsight, I made a big mistake right then and decided to continue plans for a couple trips coming up. We went to the Rock Legends Cruise with dear friends, following by a week in Florida in a time share and then 5 days to visit family in Florida. We were supposed to be in Alaska right now.
We went on the trip. The rashes were ramping up - I've decided there are 4-5 different rashes I will detail later, for my records and remembrance, if nothing else. It's amazing how I forget how bad they are when they aren't bad but that helps me be more understanding when others don't realize how debilitating they can be. The 2nd day of the cruise, I woke to a face that literally startled me. I looked....sick, swollen, blood shot and puffy eyes, big big neck, and my skin had a purple hue. I was actually embarrassed to be seen. I got in the shower and alternated iced cold and hot water on my neck to hopefully reduce the swelling. I took extra prednisone, used eye drops... Fortunately our friends are so low key and easy. I sort of did the minimum and took lots of naps over the next few days. I was given a great gift that I felt better the next day and was able to go on an excursion in the Dominican Republic. The hike was tough and took the extra support of a super nice young guide, but I made it to the top and was able to do all the jumps and slides into the 7 beautiful waterfalls. It was a beautiful day but it did have me wondering what my physical capabilities are.
The next day I woke thinking I'd caught a cold. I layed low, only making it out for the evening to see Sammy Hagar preform, have some dinner, and head back to bed. We decided to go to the time share in Kissimmee with our friends, calling to move up appointments for all the scans and biopsy and moving up our flights. We cancelled the trip to see family )-;
The rashes became more and more horrible. It's like there are 4 -
1) Pretty much like dry skin or bug bites. Very annoying and can be miserable. Lotions might help.
2) I get a rash of red points and my skin looks purple. It doesn't look bad from the outside but it's itchy and just ... uncomfortable.
3) This is the one coming on at this moment and I want to remember how panicky this feels. It feels as if a wool body suit is creeping onto my body - and there are strands of steel wool in the suit too. I have wracked my brain as to what brings in on. It seems worse with heat but I get the chills and sometimes just have to take a hot shower or bath. But I still don't know what helps or hurts. But this is simply miserable.
4) Sometimes the rash goes to another place that has me wondering if I need to go to the ER. I'll attach a pitiful pic here. The day this was taken, we had gone to the pool at the timeshare so maybe chlorine??? I wasn't in the direct sun.
5) I went to the dermatologist the other day as a follow up to everything. The T-cell specialist oncologist simply says the rash is from the lymphoma. But she saw a new type of rash with itchy boils under the skin and open sores spreading on my neck and chest. I asked if it could be infection from the port I've had for 6 years. She said it looked viral to her, biopsied it, and wrote a prescription for an anti-viral.
I have a prescription lotion that really doesn't help. I take Hydroxyzine (prescription stronger than Benadryl) but it doesn't appear to affect the rashes but may help me sleep, I take desperation baths with oatmeal bath, baking soda, and lavender which gives me a chance to get relief with a washcloth rubbing the itch. I lather up when I get out, then take a THC gummy, the Hydroxyzine, and a glass of wine and try to go to sleep before the itch takes over again. Ya - I know this isn't exactly a wellness regime.
There is hope that the clinical trial drugs will beat back these symptoms but it will take some time and Dr. Haverkos warns it could get worse before it gets better. Chemo knocks down tumors quickly. This will take more time. He warned he had a patient similar to me that was touch and go for a few weeks, threatening to have to start chemo because his airway was threatened as the lymph nodes got worse before they got better. It's good to have realistic expectations and, since I was so sick with the drugs I've tried...I need to stick with this if at all possible.
I had a cough and felt terrible a few days after coming home. The triage people in oncology wanted me to go get a chest X-ray and labs. Turns out I came home with Covid. They put me on the antivirals for that and antibiotics because, again, I have labs that show some kind of infection is raging. They helped the lymph nodes a bit, which is a relief. But I am suffering a bit as I reduce the Prednisone-my hands now always look like my grandmothers - fat and they are painful. But, to be in the trial, I have be under 10mg daily by the time I start.
I've tried to be honest in this blog. The first specialist I saw at City of Hope said as we were leaving her office, "Wait, but don't wait too long!" I've always wondered what that meant. She would be shocked to see me still here 7 years later with essentially no treatment. But I wonder if we waited just a bit too long. On the other hand, as my dear son said recently, "This is obviously God's timing." I mean ... I found the clinical trial just as the lymphoma seems to be taking off. I just wish we had not gone on the last trip, pushed for an earlier appointment with Dr. Haverkos, and started these drugs weeks ago. I continue to choose to trust that God is in control and that he is merciful with my mistakes and lack of self-discipline.
This is a whole new place to be. The purple skin, the inability to do much of anything but lay down- especially after rallying to do anything social or productive, the rashes, some night sweats, the swollen neck... it makes me wonder what this all means. If I didn't find the clinical trial, I'd have gone into the hospital to start CHOEP and whatever variation of that the oncologist wanted to throw at this.
In the meantime...it's a lesson in keeping my eyes on Jesus and keeping my mind in the present. I can't handle thinking much about the future, or problems with the world or people or anything else. I think about Corrie Ten Boom - itchy from flea bites and sleeping on hay with way too many women with no emergency baths, medications, warm cozy home. I think of Joni Erickson Tada - in chronic pain as a quadriplegic who uses scripture and her close relationship with Jesus to get through the unthinkable. I know what I'm dealing with is real and that God cares just as much about me, but it helps me keep things in perspective.
Below is some of the clinical trial info. It is important to know that I am coming into the trial at a time that I am guaranteed to be given both drugs as they've been tested to work optimally together (group 3B). I've had people concerned I'd be given a placebo. I feel fortunate to come in now, not when they were separating people into groups getting only 1 of the drugs or both.
Comments
Post a Comment