Three and a half years with Mantle cell lymphoma

[GT97]

I got diagnosed with Mantle Cell Lymphoma in March 2018 when I was 61. As it had already spread from my lymph nodes to multiple organs I was immediately admitted to hospital and began six rounds of Nordic protocol chemotherapy, followed by a stem cell bone marrow transplant.

After my transplant I had two years of Rutiximab infusions ever quarter. Not long after the rutiximab finished I got a head cold that progressively got worse until I was on oxygen in hospital 5 months later. As I had tried several different types of antibiotics over this time and continued to deteriorate they finally gave me some super antibiotic as a last resort. Thankfully this was successful and after another month I was able to resume my life and work. I was on those antibiotics for the next 8 months until 2 weeks ago. The side effects were constant headaches, diarrhoea and increased fatigue.

I’m April this year my haematologist started me on immunoglobulin infusions every four weeks. Since I started receiving them I feel less fatigued and have not had any infections.

Two months ago I relapsed and the PET scans and CT scans showed the cancer had spread from my lymph nodes to my abdominal organs. Three weeks ago I started on 4 x 140mg daily doses of Imbruvica and after 8 days the extremely enlarged lymph nodes in my groin started to rapidly decrease and now after 3 weeks I can no longer feel them.

Two weeks ago my haematologist recommended stopping the antibiotics as my headaches had increased in intensity and frequency since beginning on Imbruvica. Since then the headaches have reduced although I still have diarrhoea. My fatigue has got worse since starting on Imbruvica. Shortly after I relapsed I was put in hospital with a blood clot in my lung. Since then I have been on big doses of a blood thinner called Xarelto.

One of the big side effects from Imbruvica and the Xarelto is any minor bump or scratch bleeds and requires a lot of pressure to stem the blood. My body is now covered in big dark ugly bruises.

The upside however is after 3 weeks my enlarged lymph nodes have now disappeared and my life and outlook have improved. After three and a half years on this journey I’m starting to feel more comfortable towards my future.

I would appreciate any feedback from anyone that has traveled this road, especially if they are further down this road further than I currently am.

[guzzifan]

Hi GT97, I don't have MCL, but it's interesting to read your story. Makes my CLL look like a walk in the park! I'd just like to send my best wishes for your MCL to stay controlled and for you to be able to enjoy a good quality of life (well, after Covid anyway). Cheers. -Jim.

[GT97 in reply to guzzifan]

Hi Jim, thanks for your reply and best wishes and my apologies for the delay in responding. I’ve been very unwell for the past week and a half with severe headaches, fatigue, bleeding and bruising. My haematologist switched me from Imbruvica to Calquence after successfully applying to the drug company on compassionate grounds. Calquence is not on the Australian Pharmaceutical Benefits Scheme. Thankfully they agreed to supply the drug for free as I couldn’t get on a trial as I’ve recently had blood clots in my lungs. I only started Calquence four days ago and already the bleeding and bruising has reduced and I’m advised the constant headache will subside over the coming week or two. The added upside is that it could increase my life expectancy by up to two years. So it’s onwards and upwards on my MCL journey.

I hope all is well with your CLL journey and you are as well as can be expected. I see NZ has recently had a Covid outbreak, hopefully they can get on top of it quickly.

All the best, regards John

[guzzifan in reply to GT97]

Yeah, I'm sure we will knock off the current covid-19, but of course we have a constant stream of covid-positive people coming into the country. So the slightest failing in our quarantine, and this delta variant is away again. Like in Aus, our vaccination has been slow.

I'm glad the acalabrutinib seems to be working for you so far. You probably already know that caffeine (coffee) helps many people with those headaches, until they disappear. I am on zanubrutinib for my CLL - off-label, as I think it has only been approved for MCL yet in the US, and not for anything in NZ. The only side-effect I had was easy bruising, but that is greatly reduced now. This is another possibility for you, if you have adverse effects from acalabrutinib. It's another one of the 2nd-gen BTK inhibitors. May be hard to get if it hasn't been approved in Aus. Best of luck!

Cheers, -Jim.