Ever since the PET scan on 6th September, we have been going through the various scenarios in our minds. When we visited the consultant at the Royal Marsden yesterday he confirmed that the mantle cell lymphoma had returned and it was not curable. We had known all along that the only cure was a transplant and we knew it was a gamble. Despite my having very high dose chemotherapy for nine days before the transplant, and the scan and bone marrow exhibiting no signs of the disease, minute remains of it must have been still lurking.
After a transplant the first few weeks are spent trying to accustom the host body to the new bone marrow and DNA so that anti-rejection drugs are used. Although this was only for about 8 weeks this was just long enough for the lymphoma to sneak in without fear of rejection so that by the time the drugs were reduced or stopped, it was there.
The only thing that can be done now is to have some treatment to reduce the effects of the lymphoma so initially radiotherapy will be used to ease my throat and ensure I can swallow and breathe. Then chemotherapy will be given to reduce the rest of the growths, hopefully. But there is no guarantee any of this will work. Although my new bone marrow means that we can use chemo treatments which have been used before (not usually possible) the disease has built up resistance. The most powerful chemo I had before was CHOP-R in that it really affected me physically and mentally. However, I don’t think it was much more effective than Bendmustine which I can tolerate more easily.
I have made it clear that I am prepared to fight the disease and to have further treatment, but I do not want to end up in intensive care with tubes sticking out of me. After the treatments to reduce the lymphoma have been exhausted we are then on to palliative care. I think it will be more convenient to have the radiotherapy in Southampton as it means visiting the hospital every day for 3 to 4 weeks. In addition, if I have the chemo in Southampton, after the first treatment the rest can be given at home if BUPA agrees.
This is the key. Whatever happens over the next few weeks/months I should like some input into my treatment and I want to be at home as much as possible and not go into hospital as an in-patient. Raymond and I don’t want this to be a miserable time for us. There will be times of sadness inevitably but we hope that we can build up some experiences together which will give us both pleasure, and provide him with some happy memories of this period, not just memories of time spent waiting in a queue for treatment at the hospital.