T cell PLL
Diagnosed in July of this year with a very rare form of leukemia. I am in the inactive stage, called wait and watch. I am closely monitored with blood work and CT scans til it reaches a certain level for chemo. It's known to be aggressive once it goes active. I am currently being followed by MD Anderson as treatment options are limited. Scared is the understatement as where my future may lead.
Hi
I actually went to MDA too for my Non-Hodgkin's Lymphoma. I understand your fear, it's totally normal. My inbox is always open if you'd like to vent. Please keep us updated with how you're doing if you feel comfortable doing so. Warm wishes, Katelynn (Team Member) 🫂🫂🫂🫂I as well had some time at MD Anderson as well. I understand the fear and emotional roll coaster that comes with a diagnosis. Here we all do🫂❤️ Your definitely not alone and I hope this brings you comfort to know there are others here who can help and guide you through this journey. 🫂🫂🫂Blood-cancer tribe is here for you💞 Amanda🐼(Team member)
Hi
... Like Katelynn I was diagnosed with non-Hodgkins Lymphoma. Mine was detected at Stage ll beginning on July 5th 2020 in the middle of Covid and was scared to death.
Here is what I have learned. I needed to undergo 6 treatments of Chemo 3 weeks apart. The first treatment on August 4 was hard on my body and after that the oncologist adjusted my dose and I was able to get through it rather well. Not fun due to loss of taste, and hair and bowel issues. That said, over time my body adjusted and by the end of November I was in remission.
We all react differently to treatments I have met folks who had the same treatment protocol I had and we all had different experiences. The treatments today are not like what they use to be and my advice to anyone undergoing treatment is SPEAK UP. Tell your MD's what is going on and do not suffer in silence ... by all means speak with your oncology nurses as they can be a tremendous source of information when it comes to patient comfort suggestions.
This whole thing is an emotional and physical roller coaster ride. I found it most helpful to stay focused on today ... one day at a time ... and to live in the present. Worry does not help and only causes more stress for you and your loved ones.
In life there are good and bad days - dont let the bad ones ruin the good days that can be in your future. Here to chat any time - Dennis(Blood-Cancer.com TEAM)This week has been quite busy in "My Bladder Cancer(BC) Journey" as I have been to three different hospitals but I got the all clear so all worth it with just one more test result to come on Monday I live for another 3 months until the next round of testing, even plan on going on holiday. Well done on your own personnel "Ankr app" and long may it continue. Your emotional journey sounds much the same as mine as it's in the early hours when you lie in bed thinking about the whole stupid world that has been thrown at us and the question is always "Why Me" but you get up and get on with life as it is and thats what counts.
