Rare Lymphoma - active treatment

@beachlvr Hi Nicole, Something tells me you’d rather be at the beach right now! Wow, what a whirlwind you’ve been going through for the past month with your newly diagnosed Burkitt’s lymphoma (BL).

According to information on Mayo’s website Burkitt lymphoma is an aggressive type of cancer of the lymph system, but it may be cured when diagnosed and treated right away. Treatment for Burkitt lymphoma often includes a combination of chemotherapy medicines. Your doctors jumped in right away in getting your treatment started which is great news.

But I know from experience with an aggressive form of leukemia myself, the chemo regimen can really knock you for a loop! It’s common to feel worse by the 2nd and 3rd week, rebounding right before you’re ready to hit another round! I’m sorry you’re having to deal with the side effects. They are not pleasant! I’m assuming you’re having some nausea and the resulting loss of appetite along with the loss of taste buds. Other side effects of aggressive chemo are, of course, hair loss, fatigue, possible nail damage, gut issues, tingling in hands and feet, mouth sores…fun stuff. But it’s knocking out the cancer with each round. So hang in there, my friend. Our bodies are meant to heal and can move on from this!

There was a really encouraging blog article on the Mayo site of an employee of the Clinic’s who was diagnosied with BL. Here is his story!
https://connect.mayoclinic.org/blog/blood-donor-program/newsfeed-post/giving-for-garrett-blood-donation-challenge/
Do you know how many cycles of chemo you’ll be having? Have there been any progress checks?

Thanks so much Lori. Was nice to hear all of that. So far I’ll be doing 6 rounds total. I’m currently on cycle 3. 2 intrathecal methotrexate LP’s during the week of treatment as well. PET scan in after cycle 3. And then I think progress checks monthly. Weeks 2 and 3 are so hard emotionally too. I’m all over the place. Depressed, crying at the drop of a hat. Just overall scared. Thanks for sharing Garrett’s story. That’s amazing.

@beachlvr My heart goes out to you for all you’re having to deal with. And it looks like it all came at one time with diagnosis on 6/1 and hitting the chemo right away on 6/2. My story was similar in that we both got diagnosed quickly with our respective diseases and started treatment ASAP. Didn’t have time to think about it…just jumped in with both feet! I appreciated that aspect because I didn’t have time dwell on the ‘what ifs’.

By the 2nd and 3rd week after chemo, when your blood numbers have dropped significantly and your energy plummets, so does the mental energy which helps keep you positive. There’s not much fighting power when you’re almost literally running on empty! I remember it being one helluva an emotional rollercoaster ride that I just wanted to end…to have the car pull into the station and we’re done! “But wait, there’s more!” 🤪
It’s ok to give yourself grace and have some meltdowns in the process. This is quite literally a fight for your life and you’re not going to take it lying down (except when you’re exhausted LOL). But you know what I mean. Stay the course, let the meds do their thing. The side effects suck but, I have to say, when you come out the other side a victor over this Burkett Lymphoma, you’ll feel pretty darned proud of yourself.

I know it sounds trite, but take one day at a time. Some days I watched the big hand sweep around the clock. If I could make it one more minute, I could make it five more and so on. Distraction is a helpful tool right now by refocusing your thoughts. So if you have a hobby such as painting or sketching, or needle work, reading, crossword puzzles, meditation…take a few minutes every day to zone out. Binge watching series on Netflix. Walking is also good for circulation, helping the body to clear the toxins, along with drinking plenty of room temp water.
I’m here anytime you need an ear!

How do you feel after the methotrexate LPs? Do you get headaches from those?

Very true about not having time to dwell on certain things right at the beginning of this diagnosis. Do you have a blood cancer as well? I’m sorry you went through something similar.

Your advice is so helpful and I really love the sense of humor. I lean on humor a lot. You’re certainly right about the emotional melt downs and having no strength some days. Sometimes I feel like I’m just staring at the TV and zoning out. The side effects do most certainly suck. But absolutely worth the pain if it’s going to cure me!

Distraction is key. And so is NOT googling things and looking things up. Trying to lean into some hobbies. I love to be outside in the summer but haven’t been able to because of the heat and the sun. Better days are coming.

The first methotrexate was brutal.
I had two last week and just have a headache now. But haven’t been sleeping well and also had my neulasta today. Which is miserable. Thanks for the support. I really appreciate it

Good morning, @beachlvr Oy…first let’s address the Neulasta! It’s an important drug to help boost the production of neutrophils which will aid in getting your immune system back up and running faster. You’re vulnerable to infection right now, whether bacterial, fungal or viral. However, that rapid production of white blood cells can hurt like the dickens. With the mass production of cells, they are basically crammed inside the bone marrow, continuing to expand until they get released into the blood stream. Before that happens, the pressure in the bones can be almost unbearable. It was the worst pain I’ve ever dealt with…
So, to avoid that, if you haven’t been told about this yet, Claritin (the over the counter antihistamine (not Claritin D) can be taken for several days to help eliminate the pain! It works like magic!! So check with your oncology team to make sure you can take Claritin. But it’s pretty routine for oncology teams to recommend this drug.
I was instructed to take one capsule the day of the injection and the subsequent 7 days. The one time I didn’t have Claritin I was actually in the hospital as an in-patient. I had to be put on morphine until the Claritin was ordered through the hospital pharmacy…even though I had a full package on my counter at home. 🤪

I’m glad to read your sense of humor is still intact. It can be a huge coping mechanism to get through some of the worst times of our life…along with distraction. You have both skills in your goody bag and your positive mindset goes a long way in helping you to keep pushing forward. I sense a strong sprit of endurance in you! ☺️

The heat and smoke this summer are making it pretty rough to be outside. I’m a huge walker and love to putz in the garden, but have zero heat tolerance so I feel your pain of being stuck in the house. I actually walk inside my home with a circuit through the first floor (makes a loop) and run up and down the stairs every few laps…while reading! 😅 But I get in miles and the stairs give me an aerobic workout! I have an elliptical that I ride too. But prefer walking.

To answer your question, yes, I did have a blood cancer. Acute myeloid leukemia (AML). It was very aggressive, months of chemo requiring a subsequent bone marrow transplant. That was 7 years ago at the age of 65. It all worked as planned and I’m enjoying my 2nd life to the fullest! Haven’t brought this up in a while, but here’s a Mayo Blog piece about my story and how I got here as a mentor in the blood cancer and bone marrow support groups.
https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/mayo-clinic-connect-brings-together-2-women-with-leukemia-46-years-apart/
Hang in there, m’friend! I love your comment, “Better days are coming.” Do you have a bucket list goal for something you want to do when you’re finally past treatment?
What are your hobbies that keep you distracted?