Blood Cancer Treatment Experiences 🩸💪
Living with blood cancer? From chemo to experimental therapies, we want to know what you've tried and how it's worked out. Let's swap stories and support each other through the ups and downs.
I had been been on Acalabrutinib for 3 years, but my numbers were trending up for several months, so my Hematologist recently switched me to Venteclax. I wasn't eager to change because Acalabrutinib was working great for the first 2 years. As my numbers first started heading north of normal, I felt okay, but then one day while on vacation, I suffered seriously inflamed lymph nodes at the base of my skull giving me the worst headache ever. Then, I had to stop taking the Acalabrutinib for a few days prior to starting the new medication and that was really rough. Even though the Acalabrutinib wasn't as effective any longer, it was still better than nothing. Now, 3 weeks into the new medication, my numbers are moving down and I'm feeling better. I wonder why one med stops working and another works better for me.
Read something recently about that. If you relapse on a BTK, you will not generally be upped to another BTK because if one lets you relapse you will relapse sooner on another. If one doesn't work or you 'grow away' from it, you will generally be 'scripted' with a totally new type of something for next treatments. Sorry, I don't remember where I read it. I am almost 6 years on Ibrutinin and it still works for me. I have had no other as no relapse from naive//first treatment (rituxan and Ibrutinin). Glad the new treatments is working for you.
thanks for sharing your experience. So glad your treatment is working for you!
Angie (Team Member)
I have MDS/MPN with ET. My platelets shot up to 1.2 million last March. I started taking Hydroxyurea - first 1,000 mg per day, then down to 500 after a month or so.
Yesterday I had labs done and my Hemoglobin had dropped pretty drastically in 6 weeks, from 10 to 8.8. I had been at 10 for 3 years. So my Dr. told me to stop taking Hydroxyurea immediately and I will see her in 3 weeks. She's concerned, so I'm concerned.
I'm very interested to see what happens with my Hemoglobin and Platelets after stopping Hydroxyurea. If the Hemoglobin is still low there may be another (3rd) bone marrow biopsy in my future. I don't know what will happen if my Platelets shoot back up.
I felt very down yesterday, but I'm able to shake off bad news pretty quickly. I'm very grateful for this ability. Now the long 3 week wait begins.
- I can understand feeling down yesterday, for sure. I'm glad you're able to shake it off, and I'm sure you know this, but it's totally okay to feel all those feelings as well! Please keep us updated on how things are going. I'll be keeping you in my thoughts and sending positive vibes your way. Your comment reminded me of this article from our Health Leader, Susan Gonsalves, titled "Surviving Setbacks: How Do You Cope During Rough Times?" Sharing it here incase you and others want to give it a read! (https://blood-cancer.com/living/setbacks-rough-times).
Best,
Anthony (Team Member)just checking in to see how you're doing? How did your follow up appointment go? Thinking of you!
Angie (Team Member)
Thank you for your kind message Anthony! I really appreciate your understanding and thoughtful remarks. And thank you for the link. I'll check it out right now. I will let you know what happens in 3 weeks! Hi Angie Netterville,
Thank you for checking in!
My Hgb has not gone up, but my platelets have and quickly - reaching 780. I've been having my blood tested every week for the last 3 weeks - my next one is tomorrow. Then I go to 2 weeks (hopefully).
I get a little down as I feel like I'm just living from blood test to blood test holding my breath.
Luckily I have a week long vacation with 3 dear friends coming up next month. It will be great to forget about things for a while.
Hope you are doing well.thanks for the update and your well wishes. I can certainly understand how it can feel like living from blood test to blood test. I've noticed that you're always so positive here with everyone, and I am certain that mindset carries you far in your health journey. Thanks for sharing it so effortlessly in this space! Hoping that your vacation can give you a reset both mentally and physically.
