Where do I start. Well went to A&E in October 2024 because of back pain and abdomen like a swollen house brick. Doctor immediately ordered scan and then was called into side room to be given devastating news that I had MCL, no cure but treatable. Refused to read any literature related to it just wanted to hide away. I thought any reading would be negative. 6 rounds of chemo and scan showed most of the lymphoma had gone, apart from residual in lower abdomen. Consultant then put me on maintenance (rituximab) had one injection and given future dates one year in advance for further injections. I knew something wasn't right though pains in abdomen and feeling rough. Unfortunately at next scan the MCL had spread wildly and consultant stopped rituximab. Obviously it had not worked. I have now started Ibrutinib and hopefully might get a degree of control on the MCL. Early days. This is the first time I have been able to communicate with anyone outside family. For months I wouldn't talk to anyone about disease, I had two viral infections during chemo and had two hospital admissions for 17 days and didn't want any visitors. At moment I feel good and living life as normal but constantly aware of how evil MCL can be in terms of returning and relapse.
A lot of things happened since I was diagnosed with Mantle Cell Lymphoma stage 4 and with several TP53 mutations. It started end of January with a lung x-ray for another reason. They found a lesion on both sides of the lungs and decided to make a MRI-scan with showed a large amount of lymphnodes spread from top of the lungs to groin.
After that a PET-scan to make things a bit more clear.
Bone-marrow biopsy was done but showed luckily that the bone marrow was not severe affected.
Stem cell harvesting was done. First time was a failure. By far not enough cells to harvest. Extra doses of Filstagrim injections and a superboost injection resulted in a good harvesting. Because of the TP53 mutations it can’t be used at this time but they harvested ‘just in case’ it will ever be needed.
In the mean time I finished my immune/chemo sessions. 3x R-CHOP in Harrogate (1 day each) and 3x R-DHAP in Leeds (3,5 days each).
Mantle cell lymphoma will never get away so I will get a maintenance Rituximab every 2 months for a 2 years.
(I just read your answer: Cytarabine gave me not nice side effects)
My biggest problem was/is the up and down low white blood cell count. Especially when the stem cell harvesting was done on a Monday and on that Friday I had the ‘heavy’ R-DHAP. It took me 2 weeks to recover. Right after that chemo I got a sinusitis which is now nearly over. That’s also a worrying point: be aware of infections. The last blood count was much, much better so, hopefully it stays that way.
Tiredness: I work as a part-time gardener on the country estate where we live. In the last couple of months I could only do half of the hours (10 out of 20) because of feeling sick and being too tired. Sleeping a lot (at least 10 hours a day). Lost a bit of food taste. Taste varies per day: what I liked yesterday, I hate today. Makes my wife a bit crazy 
.
1,5 week ago I got a blood transfusion which helped me a lot. Much more energy. Although I am still a bit out of breath I can do more. Walking a bit further and try to be outside as much as I can.
In August I will have my third and final PET-scan as an end of the treatment cycles. The second one showed some progress so, curious what this third one will show. I am not expecting it all to be gone but hopefully improvement will show .
Support is so very important! I have great consultants, lead nurses In Macmillan Harrogate and very dedicated nurses from which by now, I know all their names. Not only there but my wife is very supporting and keep me grounded! I lost of a lot of weight as she is doing her best to gain and keep a steady weight
(second part as it did not giving enough space to put it it in 1 message)
I am trying to be as positive as can be and not get this cancer let me down! It is a bit odd that in a former job I worked on average 60 hours a week without a day off in 10 years time. When we retired in April 2024 (at 69) we had finally the time to have 2 holidays but had to cancel a third one at the beginning of this year. Life changes in a only a years time!
My partner and I never arranged things financially during the 17 years that we are living together. This decease makes you aware of organizing things, so last months we got married which makes things a lot easier!
Nevertheless, stay positive and do as much as you can and enjoy life as much as you can.
I hope that this little mail answers your question? Don’t hesitate if you would like to know more .
In the mean time: all the best!
♂️
