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.
I suspect after a while we build up a kind of tolerance to certain drugs. A few men in one of my support groups mentioned the need to change drugs for that reason. You might want to ask your MD and get back to us here. Good to hear your numbers are now moving down. Dennis(Blood-Cancer.com TEAM)
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)
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!
