My MCL Journey

  Hello family & friends...it's been a while since my last post. There are 2 reasons for this: 1. The pneumonia was the cause of my issues post chemo (rounds 1 & 2) and the last 2 rounds (3 & 4) have been non-eventful and I've felt great (for the 1st time since last year) !   2. After my 4th round I was due for a lot of testing to determine 1) If the treatment is working and 2) based on that; will we move forward with my Stem Cell Transplant (SCT) after my 6th treatment.  A MOMENT OF TRUTH! I received all my test results yesterday 10/22 and I'm ecstatic to report that everything is moving as planned, the Dr.'s are happy. More specifically ( for the Dr. folks out here 😀 ), from my bone marrow biopsy there is no bone marrow involvement and from my CT scan my spleen is back to normal size, no new areas of growth and many lymph nodes are back to normal size (some still a little larger than normal but that could just be scarring - won't know for sur...

I've been waiting to write this post to make sure I was in the clear (Knock on Wood - I hope/think I am) ! I had my 3rd round of treatment back on Aug 31st - Sep 2nd. Outside of a few days of very itchy, annoying skin and the usual fatigue I have had no issues from my chemo - NO HOSPITAL ! Even better my blood counts are now starting to rebound and hold where they should be. I have not had to have a blood transfusion in 4 weeks and I get to skip next week's blood draw/testing all together. All of this is gravy but the more important part is the Doc said they are seeing very encouraging signs that my body is responding well to the treatment (meaning that the chemo is working and/or cancer is dying) . I will have full body scans after my next treatment to see to what degree. I've had normal energy to keep up with and enjoy the kiddo's and have even gotten in a couple rounds of golf...life is good! That is all for now.  

  This update is a little late, but wanted to share some good news! Since we've discovered and are treating my pneumonia my blood counts have begun to return to normal and recover on their own...looks like the pneumonia WAS the culprit. I have not not had to have a blood transfusion for the past 2 weeks and my hemoglobin is higher than it has been since this all started. That is all, good day!

 Well....unfortunately I ended up back in the hospital again after my 2nd round of chemo was completed. It was a much quicker turn-around this time as I went to the ER and was admitted 2 days after my last chemo session (vs. a week 1/2 later the 1st go-around) . I spent another 7 days in the hospital 8/7 - 8/14 and am back home now. It was fevers again that landed me in the hospital, so very much like the 1st go-around. They did not find anything conclusive the 1st go-around as to why (chalked it up to being neutropenic) . This time however, they found that I had a form of pneumonia, that only people with compromised immune systems get. For the average person they would easily fight off the bacteria. Taking a lot of medicine to kill the pneumonia, but hopefully that will work and won't end up back in the hospital after Round 3! (Aug 31, Sept 1, Sept 2) One perk I had while laying in the hospital was plenty of Facetime and pics of these little cuties...they're what get me throug...

Today I started my 2nd round/month of treatment (reminder 6 mos. of treatments) . Since exiting the hospital a week back I have been feeling much better and my blood levels had been staying up. For the 1st time I did not have to have my weekly blood transfusion. I will be getting a transfusion tomorrow just as a precaution b/c the chemo could cause it to decrease. Additionally, after my 3rd day/final treatment I'll be getting a medicine (patch) so that hopefully my white blood cells won't dip down too low again (and end up back in the hospital) - fingers crossed! I'm also now focused on gaining back weight...throughout all of this I've lost between 30-40 lbs...need to gain 15-25 back so trying to eat constantly. As the treatment is working / the cancer is dying that should also help and I should stabilize. Hope everyone is doing well!!! 2nd Day of School! Thanks for the picture mom (Maneesha) :)

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)!