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Rare Lymphoma - active treatment
Blood Cancers & Disorders | Last Active: 2 days ago | Replies (5)Comment receiving replies
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
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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?