My MCL Journey

A new therapy has been approved by the FDA for the treatment of MCL....pretty cool stuff. https://lymphoma.org/newsarchive/u-s-food-and-drug-administration-approves-first-car-t-cell-therapy-for-mantle-cell-lymphoma-brexucabtagene-autoleucel-tecartus/

2 days in a row feeling good with energy all day...got to play in the water with kiddos all day today (Thanks Deepee Daddy & Sumi Mommy)!

All, if you're not logged in with a Google Account and you leave a comment please leave your name in the comment so I know who you are! Otherwise it just shows up as 'Unknown". Feeling much better today and it feels great to be home with the family!!!

Finally got released from the hospital today after a full week! Gotta say it felt great to get some fresh air and just as good to be home. My white blood cells are back on track and back to healthy, normal levels....w/in 2 mornings I went from 0 neutrophils to 400 to 1100 - Life is good . Here's a pic of me leaving the isolation floor! If all goes well I won't have to be back here until my stem cell transplant.

One thing that has become VERY apparent to me is HOW IMPORTANT BLOOD DONATION IS . I urge everyone out there who possible can to begin donating blood. There is an extreme shortage with COVID and in general there is never enough. I used to donate blood through work and unfortunately I will never be able to do that again. I am someone who is probably going to need transfusions off and on for the rest of my life, so if you really want to help PLEASE DONATE!!!  https://www.redcross.org/?cid=generic&med=cpc&source=google&scode=RSG00000E017&gclid=Cj0KCQjwpNr4BRDYARIsAADIx9zk1bjlJnTsJITUMJymemE4hLXDykLLk9ub9MqMYXealy90sED5BY0aAtOVEALw_wcB&gclsrc=aw.ds (***someone told me if you have the same blood type as someone you know you can actually save your blood for them, not sure if that's true but if you're O Negative and actually go out and donate you might ask!***)   

After 2 blissful nights in our new home I've had a little set back. I was cruising along with little to no side effects from treatment until the afternoon of Wednesday, July 15th: Wednesday, July 15th: I woke up Wednesday feeling good. Throughout this process I've continued to work as is allowed with appointments, treatments, etc. I was working on Wednesday and after I took a break for lunch and to hang out with Avani & Anya for a bit I started to feel a bit off (slight headache, fatigue, cough) . This got worse over the afternoon and around 5pm I was feeling pretty shitty (and now very warm). I took my temperature and I had a temperature of 102. I immediately sent a text to my Oncologist (already knowing what her response was going to be) . I had already begun to pack up my backpack by the time she responded. Load up the car! Family trip to the ER. I haven't mentioned this yet but I'm at Northwestern hospital in Chicago so of course we have now moved to the burbs a...

Let me interrupt all this doom and gloom with some great news! On Monday, July 13th our family made it's way out of the city and moved to Downers Grove! The kids are absolutely loving the change and it makes me extremely happy during this time to see how much more there is for the kids in their new home & suburb. Here are some picks for your enjoyment....oldest sister supervising the youngsters!  

I had my 1st chemo/immuno treatments on July 7,8,9th. My treatment consists of a 3 drug combo: Day 1 - Cytarabine Day 2 - Cytarabine + Bendamustine Day 3 - Cytarabine + Bendamustine + Rituximab I went into treatment expecting the absolute worst as it relates to immediate & post side effects. To my surprise & delight I had absolutely no issues or real effect other than fatigue (which I've now had for 3 mos anyways 😃 ) after the 1st two days. Day 3 (Rituximab) was not as easy. During treatment I had a reaction from this drug (which is common when it's introduced into your body for the 1st time) . Luckily after a break and some other meds my body took the treatment and I was able to complete. That day ended up being around a 10 hour day so needless to say I was absolutely exhausted! Once I got home I quickly started to not feel well and had developed a fever (100.3). I quickly popped some Tylenol and got on the phone with my Oncologist. She said if my temp went up to 100...

After several weeks of tests and awaiting results we finally had our final diagnosis appointment with my Oncologist on June 25th. The Verdict: Mantle Cell Lymphoma (aka MCL) . I'm not going to spend a lot of time explaining what MCL is. In summary, it's a very rare form of NHL and the avg. age of people who get this sub-type is 65 years old (only 6% of all NHL cases are MCL) . If interested in learning more I recommend this site:  https://lymphoma.org/  The other thing I'd caution you about if you're 'Googling" is there is a lot of old information out there especially with the developments in both NHL and MCL w/in the past couple of years. So now what??? There is no standard/universal treatment for this disease across the world (or even the U.S. for that matter) . Many are very similar across the top cancer institutions but they all have their own twists. My treatment will be a 3-phased treatment: Phase I: Chemo/Immuno Therapy for 6 treatments. Each month I w...

During my night in the ER and my transition to an inpatient room I had to receive 4 blood transfusions. This was because my hemoglobin levels were at dangerously low levels when I arrived at the ER. For explanation purposes a healthy, 39 year old male should have a hemoglobin level between 13-15. When I arrived at the ER my hemoglobin level was 4.8. The baseline (safe) level that Dr.'s use is 7.0. After my transfusions I was now above that level and for the 1st time in over a month I felt pretty decent again.  During my stay at the hospital which lasted for a few days I began to see all kinds of Dr.'s roll through my room (poking prodding, pushing, questioning). Luckily, guest restrictions (due to COVID) had just lifted the night I was in the ER so Maneesha was able to be with me in the hospital and hear the info from the Dr.'s 1st hand. A HUGE thank you to our friends who helped out with Avani & Anya (especially Kelly & Ramon)!   It was pretty much established that...

One day in early April (shortly after the COVID lockdown was put in place in Chicago) I went out for a run after work. About a quarter mile into my run I was extremely winded, and my leg and hip muscles felt as if I just completed a leg workout at the gym. I continued to push myself to run/walk 2 miles. Although I knew someone was not right, I just chalked it up to not working out for a few weeks and having a bad day. A few days later I tried another run with the same results. This went on for a couple of weeks with my shortness of breath and ability to push through declining. At this point (a few weeks in) I had also started to notice that I was becoming more fatigued throughout the day and even winded when bringing little Anya up the stairs from her crib (a mere 20lbs and 10 stairs!). As the time passed, I also started to develop a constant headache each day, it was very minor pain so again, I brushed it off as “allergy related”. As time progressed (probably about 1.5 mos in now) ev...

I am writing this blog for all my family & friends with the intent to stay connected and provide updates. I know there are many loved ones out there who care tremendously and would like to be updated on our family's journey. Please feel free to comment or post questions and I will do my best to answer and respond.  Let's F'iiiiiiiing Go ~ TB12 💪