Any experience of Ibrutinib

Hi Tierella and warm welcome to the Macmillan Online Community although sorry that you had to find us and especially sorry to hear about your husbands relapse. I am Mike and I help out around our Lymphoma groups. 

I was diagnosed way back in 1999 at 43 with a very rare, incurable but treatable type of CTCL - NHL Low-grade non-Hodgkin lymphoma ……. eventually reaching Stage 4a in late 2013 when a second, also rare type of aggressive PTCL - NOS NHL was then presenting so although my Lymphoma ‘type’ is different I do appreciate the challenges of this journey rather well as I have relapsed many times over my first 16 years…….. although I have not had Ibrutinib.

There are over 60 types and sub-types of Lymphoma so we can’t have a group for every type but these are our main Lymphoma groups below.

General Non Hodgkin's Lymphoma

Follicular Lymphoma

Diffuse Large B-Cell Lymphoma

Mantel Cell Lymphoma

T-cell lymphomas

CLL, SLL and HCL

These groups are safe places to talk to others with a similar diagnosis, treatment experience, to ask questions and get support.

Have a look at the group list above…… then click on the link that best fits his type of Lymphoma……. and when the group page opens you will see a [ Black - Click to Join - Banner ] at the bottom of the page, click in this box and this will then confirm that you have joined the group.

When you are ready……. you can introduce yourself by putting up your very own post by clicking [ + Create new post] or [ + ] in the top right of the group page.

You can copy and paste the text from this post into your new post.

I will keep an eye open for you but if you are not sure what type you have pleased do get back to me on this post and I will help you out further.

Hello...I was diagnosed with MCL in 2020, and had six courses of chemo. Unfortunately I had a bad reaction to rituximab maintenance, and it was withdrawn.

Last August the cancer returned and I was put on Ibrutinib, atovaquone, apixaban and aciclovir, all of which apparently go hand in hand.

I had a scan after six months, and it turns out the treatment has been extremely successful so far, with all the white cells etc up in the normal range.

I do get very tired now, and struggle a bit with digestion and headaches - but then I am nearly 80, so it's hard to know what are symptoms of the drug regime and what is just old age.

All in all; being put on ibrutinib was a real blow, as it meant the MCL was back. But I'm still here, the drug is working and I'm happy (mostly!) for every day. My fingers are crossed for your husband and you - hope this reply gives you a bit of heart.

Best wishes, Peter