Acalabrutinib clinical trial

I’m so glad things are a bit smoother for you! I hope it keeps going in that direction. My sister is doing okay. She is experiencing some nausea and a lot of fatigue. I think this is typical. She’s developed a new symptom which is achy bones in her shoulder and arm area. She’s managing all of this like a champ and I know there are better days ahead. Looking forward to that. Her 5th treatment is next week. I’ll let you know how that goes. 

How is your sister doing after Treatment #5?  I am sorry to hear about the achry bones & hope that has been resolved. I am getting ready for #3 next week - have been feeling good so dreading a new cycle and those first few days. I look forward to hearing from you.

Thank you for getting in touch! I do have some news and was going to message you. Her 5th treatment was routine. Earlier this week, she had a CT scan - the first one since she started treatment. Today, results show no detectable lymphoma cells anywhere! I know she needs the 6th treatment and then stem cell transplant in the new year, but it’s so encouraging to get some good news  Also, it turns out that the pain in her arm and shoulder is from the injectable drug she’s taking to avoid another infection. Not sure what it’s called. I hope treatment #3 is easier for you. Are you taking the acalabrutinib again? It won’t be long before you also get some good news - I’m sure of that. 

Great news about the CT scan and glad to hear that she got an explanation for the arm/shoulder pain. I have been back on the acalabrutinib since Day #1 of Cycle #2 and no problems. When is treatment #6 for your sister and how soon after that will she have the stem cell transplant? One more question - was cytarabine ever added to her infusion?

Hello - her last treatment is Dec. 30. I’m not familiar with cytarabine. I haven’t heard her mention it. I also don’t know the exact dates of the next phase of her treatment yet, but her doctor said she’d be done at the end of March. We’ll be looking at it all carefully as soon as the holidays are over. There are a few steps to the treatment. Hope all goes well for you this week!

Hi Cathie - how did your 3rd treatment go? My sister is gearing up for stem cell transplant and everything that goes with it. Really no updates right now. Can you remind me if stem cell transplant will be part of your treatment?

Hi Loulei - 3rd cycle has gone well (no complications) but took a little longer to bounce back after treatment. I have felt great for the past 2 weeks with a good appetite & lots of energy. Treatment #4 is Tuesday & Wednesday. I will get rituximab on Tuesday and then 2 doses of cytarabine on Wednesday which will require a night in the hospital. I have been told that the side effects of cytarabine can be tough & I may lose my hair so a little anxious. Treatments #5 & #6 will be the same. After chemo is finished I will be evaluated for a stem cell transplant and fingers crossed that it will be approved. At 70 years old I am borderline. I am very curious about an SCT and all the steps involved so would appreciate anything that you are willing to share with me. Best of luck to your sister in this next chapter of fighting MCL. Will you be her primary caretaker following the transplant?

Cathie - I’m so happy to hear your treatment went well! My sister lost her hair almost right away from taking Acalabrutinib. They told her this would happen and somehow it doesn’t bother her too much. She just wears a scarf on her head. I will be one of her primary caregivers and my other sister and my parents will also help, but COVID complicates this. We take COVID rapid tests before we see her.  I know she shouldn’t have multiple people around during that procedure, but she doesn’t have a partner who can help and we all have other responsibilities, so we’re working together on it - one at a time for a period of time and then we’ll switch. She’s definitely our priority right now. I’ll let you know how things progress. Hope your final treatments go as well as the last one!

Loulei - I received your recent update but haven't been able to reply directly to it. So glad to hear your sister is almost done with the stem cell transplant! Going through it as an outpatient sounds very tough so hoping she will start to recover very quickly. I had my last treatment last week and feel better each day. I will have tests & scans in mid-April and then meet with my doctor to discuss whether to move forward with a stem cell transplant. He is thinking that the benefits may not be as great since I have received the standard first-line treatment plus acalabrutinib. I have mixed feelings - on the one hand, it sounds very tough requiring 3 weeks in the hospital and a very strong chemo regimen before receiving the stem cells. At the same time, 3 weeks of misery doesn't seem so bad if I get the benefit of a longer remission. I am hopeful that the scans & tests will provide information to help with the decision. Good luck to your sister & please keep me updated. Cathie

Hi Cathie - so glad you’re feeling better and things are going well for you! My sister might disagree with me, but from an objective point of view, I don’t think the outpatient option was the best choice. We had 2 crises which would have been avoided had she been in hospital and just in general, she was always okay when she got home from the day hospital, but was very sick again by morning. I think she would have benefitted from having the 24 hour hospital care. Having said that, we did get through it and she’s done with all treatments at this point. She is feeling very rough, but there are absolutely no regrets about doing the procedure! They say it will take 3-6 months for full recovery. She was in remission prior to the stem cell transplant. I would love to be updated about what you decide.