Acalabrutinib clinical trial

Hi Loulei and a very warm welcome to the online community

I'm sorry to read that your sister has recently been diagnosed with MCL and it's natural that you'd want to hear about other people's experiences with Acalabrutinib, the drug she's about to start. I don't have the experience you need but had a look in the group and can see that has posted about this drug before. I've 'tagged' them into my reply to you in the hope that they will pop on.

It would be great if you could pop something about your sister's diagnosis and treatment into your profile as it really helps others when answering or looking for someone with a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

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Thank you so much for your reply. I very much appreciate being able to post questions here - it’s a compassionate forum with amazing moderators. I will update my profile. 

Hi I'm second time around with MLC and taking Ibrutinib daily as a stand alone treatment. Fortunate that the sickness only lasted couple of weeks so have stopped taking Metaclopramide. Have to take doses of Co-trimoxazole twice a week. The main issues for me have been the sheer fatigue (and the 'waste disposal system' reacting to long term antibiotics).

Hi Loulei - I am 70 years old, diagnosed with MCL 2 years ago. I was on "Watch and Wait" until this past July - scans show very slow but steady progression and enlarged lymph nodes in my neck were painful. I joined a clinical trial that added Acalabrutinib to the standard treatment of Rituximab and Bendamustine. My first treatment was on October 26 & 27. On Day #12 I went to the ER with 102 fever and a fash on my torso. I stayed in the hospital for 4 days until the doctors were confident there was no infection. Their assumption is that I had a reaction (not uncommon) to the Acalabrutinib. I stopped taking it but the plan is to restart as soon as my liver enzymes are normal and doctors think there is a good chance I won't have another reaction - the body adjusts. I would love to chat with you or your sister and share my limited experience. Cathie

Hi Cathie cm16 and see it’s your first post so welcome to this corner of the Macmillan Community and welcome from across the pond. I am Mike Thehighlander and I help out around our blood cancer groups. It’s important to remember that the Macmillan Online Community is mainly dealing with people in the UK so there may be some differences in methods and more specifically how care is provided.

I don’t have MCL but was diagnosed way back in 1999 with a rare incurable but treatable type of skin Non Hodgkin’s Lymphoma Stage 4a and although my NHL ‘type’ is different I have experienced most types of treatments used but not necessarily the exact same drug mix but understand this journey rather well unfortunately.

Let’s look for some of the group members to connect in with you but as always I am around to chat.

Hi Cathie - I’m sorry you had such a bad experience! My sister reacted similarly to the first 2 chemo infusions, but not to the acalabrutinib, although it is giving her intermittent nausea and gave her headaches at the beginning. Before she was diagnosed, her only symptom was that her ear plugged up and she had some trapped fluid in it. This was misdiagnosed at first, but she was finally sent to an ear, nose and throat specialist. He found that her adenoid was enlarged and blocking her ear, so he did a biopsy. All this to say that after a year of her ear being plugged, it finally drained after 2 chemo infusions and the daily acalabrutinib. This was so encouraging! After that, she did get an infection which was treated and that’s fine now. She’s having her 4th round of chemo this week. I’m not sure if she would join this forum, but I will certainly ask her. She knows that I’ve joined it. Take good care Cathie and I sincerely hope your next attempt at taking acalabrutinib is successful! I think the trial is very well worth the extra side effects. 

Loulei - So nice to hear from you. I am back in the hospital after a big dip in my blood pressure. BP has stabilized but no answers as to why. Doctors think it could be the Lymphoma - acalabrutinib doesn't make sense this time as I stopped taking it 12 days ago. I am confident they will figure it out - treatment #2 is 11/23 & 11/24 and don't anticipate any change to the schedule. I totally agree with you about the trial - was so excited to be placed in the group receiving acalabrutinib. Good luck to your sister & hope #4 goes smoothly.

Hi Cathie - it did go very smoothly today. The ease of her treatments gets better each time. The first 2 were very rocky. She experienced a very high heart during the second treatment and terrible hives and inflammation during the first one. She’s not having those issues now. I’m sure you’ll get back on track and things will get easier! I’d like to hear updates if you want to send them. Take good care. 

This is great to hear - have been a little nervous about this next round. I have not seen my hematologist since Day #1 - only communication through trial coordinator. It is a little scary to start again without knowing what caused dips to blood pressure, fever and rash that sent me to the ER. I'll see him before reporting to the infusion center. Hope your sister continues to feel good and will definitely keep you updated.

Hi Loulei - Day #10 of Round #2 and doing well. I was able to control nausea with Zofran, taking it every 8 hours for the first 4 days. My appetite was good and slept well but not a lot of energy and a mild, itchy rash on my torso. My energy level picked up on Monday (Day #7) and has been good all week. I had blood work on Tuesday and there was nothing in the results that concerned the doctor. I am optimistic that my body has adjusted to the chemo and that Round #3 will be equally easy. Cytarabine (which I understand can be tough) will be added to the cocktail in January - a little anxious about that. How is your sister doing?