MCL - Salvaging First Line Treatment

A summary of my feelings about the whole thing.

(Originally published March 20, 2022)

I went through another round of treatment this week. The bone marrow biopsy results indicated we needed to make some adjustments to the plan and move quickly.

The treatment plan now looks like this:

6 rounds of a chemoimmunotherapy protocol called RBAC - Rituximab/Bendamustine/Cytarabine
The difference between this and our initial plan is that we have added a lower dose of Cytarabine to all of the cycles vs doing a high-dose version for the last 3 cycles.
The original plan contained a 3 day/2 night hospital stay for each Cytarabine treatment. This new plan does not require the hospital stay. Less hospital time is a great thing - as much as I have enjoyed my visits to the Inova Alexandria Acupuncture Spa and Wellness Center.
If the chemoimmunotherapy works - I still go in for the self (Autologous) bone marrow transplant and we will have bought me a few years.
If the chemoimmunotherapy doesn't work or when the cancer comes back after the bone marrow transplant - we attempt targeted therapy using a drug called Zanubrutinib. This will be in pill form.
Once the targeted therapy loses efficacy - I go in for CAR-T therapy. This therapy reprocesses my T-cells and puts them back into my body.

Right now, the CAR-T therapy is the most promising treatment for my circumstances. However, it is still new enough that I essentially have to go through the above steps before I can get to the CAR-T therapy.

Our hope is that what we are doing works well enough to buy me some time AND does not damage my body too badly in the process.

Unfortunately, I'm still struggling with the Rituximab drips. We spent 2 hours trying to get my body to accept the medication. One thing I learned is that I need to make sure I eat (hungry or not) during the parts of the treatment where I feel good. It seems to help pad the impact. The other thing I learned is that Benadryl is going to be my friend through this process.

Sadly, I threw a pretty nasty rash towards the end of the rituximab drip. The redness and itchiness on my face and neck was new and alarmed the oncologist. It also re-activated the rash I developed on the last day of my hospital stay - so I left the office that night very itchy. Not as brutal as full-body poison ivy, but not much fun either.

The oncologist hypothesizes that I might be allergic to the generic version of Rituximab approved by the insurance company. He's going to work with them to get the name brand for the second round to see whether I am sensitive to the compounding ingredients in the generic or if I am allergic to the Rituximab itself.

If it turns out I'm allergic to the Rituximab, I'm not entirely sure whether we ditch the whole plan and can move on to the Targeted Therapy, or we find a replacement immunotherapy.

We will see over the next couple of weeks how my body responds to this new protocol.

We have added another 5-day round of Prednisone to my pill count to try to get the allergic response under control, a 14-day round of anti-biotics, and a shot of Neulasta via one of those fancy tape on devices you see on TV to boost my immune system.

I've been fighting a cough for the past few days that under any other circumstances wouldn't be alarming. With this protocol, ANY threat of infection needs to be dealt with swiftly and aggressively. I am also now officially immunocompromised.

Everything we are doing is within the current National Comprehensive Cancer Network Treatment Guidelines for Mantle Cell Lymphoma. This document is one of the best introductions I have seen to Mantle Cell Lymphoma and the current standards of care.

Thank you, Anne Grupe at the American Society of Clinical Oncologists for pointing me to the treatment guidelines and many other resources.

Meanwhile, I have been getting blood tests to see how my body is handling the blood transfusions from my last hospital stay. Thankfully, it appears that my body is holding onto the blood. Platelet counts are good and the hemoglobin counts are dropping very slowly.

I will likely need another bag of blood this week for maintenance. The oncologist found a way for me to do this on demand and outpatient at another nearby Inova facility.

This might be wishful thinking, but it would be nice if the treatment I just did helps me make my own blood again. I'll admit, I'm still struggling to wrap my head around that bit of information.

Thank goodness I donated blood for most of my adulthood.

And I've been leaning towards more vampiric hours anyway for the past 10 years.

I am able to sleep in 3-hour chunks. Coughing, night sweats necessitating yet another change of clothing, needing to pee after an entire day trying to hydrate - all of it conspires to wake me up. I'm fitting in naps (or at least horizontal time) when I can.

My days are out of my control. If a blood test goes sideways, it's off to the hospital. Doctor sees something in the results, it's off to his office.

Outside of hospital and clinic visits, I'm under "house arrest" - so no restaurants, grocery stores, or other public places. Plus, I can have few visitors - especially with Covid still being a thing. Thank goodness I've spent 20 years with online communications and our technologies and systems have improved so dramatically courtesy of Covid. Especially grocery delivery.

I am also under what is essentially modified bed rest. I'm puttering around the house - but falls and cuts, nevermind infections, could turn deadly. If I'm feeling super saucy, I go out with Ryan and Cally on the "short walk" - which is about a block. Ryan holds the leash.

I'm still trying to wrap my head around how dramatically my life has changed over 2 months.

As "temporary" as I hope this lifestyle is, there will still be a dramatically different new normal on the other side.

Mantle Cell Lymphoma is a chronic disease with the current state of the science. I will not be able to blithely go to the doctor once a year for a physical and go on my merry way, generally ignoring my body and assuming everything will work as I want it to.

Even if I manage to go into full remission for a time, the disease will come back - barring me finally checking the "positive outlier special snowflake" box and bucking my current trend.

These treatments, this experience, is changing me both physically and mentally.

Cancer treatments, by their very nature, are hard on the entire body - not just the cancerous parts.

The sudden and dramatic change in lifestyle and identity - from active adult professional to "cancer patient" - is leaving me with a lot to process and grieve.

I may still get back to active adult professional and manage to get parts of my old life back as part of this journey. We're a long way from that right now. There are certain things that will never come back (I'm done with heavy weightlifting and dabbling in stupid human tricks). And other things I was already ready to let go of and was nudging myself in new directions prior to the hospital stay.

I don't know what my health is going to look like, how much stamina I will have, how my brain is going to work, what limitations I will be working under as I eventually rebuild.

And, as much as my control addict self wants to plan and schedule what post-treatment me looks like, I can't do any of that. I don't even know what my schedule looks like this week beyond a known blood test and follow-up with the oncologist tomorrow.

One step at a time. One day at a time.