Lung Appointment

Last week I had a very useful consultation with the lung specialist at Hammersmith Hospital. I've had more chest x-rays and this morning had a CT scan on the lungs. The CT scan is like a 3-dimensional x-ray which shows the cross section of my lungs. It's like getting them out of my chest and slicing them into thin slices to see what they look like. The advice from the lung specialist was to start on a high dose of oral steroids as soon as possible. It's now pretty clear that using the steroid inhaler over the last month-and-a-bit hasn't stopped the deterioration of the lungs. The quick lung test I took prior to the lung appointment confirmed that the lungs were not as good as last month. The cold climate during winter time is also exacerbating the problem, so I'm feeling even more out of breath.

Dr Ind (lung specialist) has recommended that I start on a high dose of prednisolone suggesting 60mg per day for the first few weeks to try and kick off the GVHD effects from my lungs. The intention is to start with a swift knock to get immediate results, and to then slowly wean off the steroids so that the GVHD effect doesn't return.

Second Opinion

With the advice of Dr Ind in mind, I sought a second opinion today with another of the leukaemia haematology consultants, who looked after me during the transplant itself. From what I've been told about steroids over the last few months, I understood that it was seen as a last resort to treating GVHD since we don't want to lose the anti leukaemia effect. For that reason I've been somewhat sceptical of starting steroids as my goal is ensure the relapse is caught, as is currently the case, and to maintain that effect. The choice now is do I keep the leukaemia at bay with the GHVD and lose my lungs, or fight the lungs and come back to the leukaemia later.

After the last few years, I've got pretty used to battling with everything, so my initial reaction was to focus on the keeping the leukaemia at bay and to persevere with the loss of my lung function. After my appointment today, it seems that now I've achieved a pretty significant anti leukaemia effect with the DLI injections, and I should now totally focus on the lungs, otherwise the effects may become irreversible.

Hail the mighty steroid

Although the initial recommendation of steroids was 60mg per day, Eduardo, the consultant haematologist has put me on 100mg! I wonder what impact this is going to have on my body. That will certainly be reduced to around 50/60mg per day within a couple of weeks. He said that it shouldn't make too much difference in the short term if I was on 60/100/500mg per day, as it's just a high loading dose.

I should, so I am told, begin to notice the effects of the steroids such as increased appetite, water retention (hence moon face) agitation, short attention span...etc. I've also been put on another immunosuppressant called Mycophenolate Mofetil, which is similar to the cyclosporine I was on following the bone marrow transplant. Using the combination of the two should rein back my immune system to relieve my lungs and allow them to recover and regain as much of their previous function as is possible.

As if immunosuppressants aren't enough, I've got to start taking other supplementary medication to counter the side effects of immunosuppression. I'm on anti-fungals as there's now and increased risk of fungal infections. Also I'm taking Fosamax, and vitamin D supplements which is to prevent osteoporosis, or brittle bones caused by long term use of steroids.

I'm in again next week to have another lung function test and see the lung specialist again and then I'm back in again the following for the regular haematology appointment.