Long talk with the Haematologist

I just got off the phone with Dr D'Souza my haematologist. It was a long conversation about the results of Monday's CT scan and what it all means.

Basically the scan did not show anything too scary. There are still the two enlarged nodes in my upper abdomen. Stlil not large enough to absolutely declare a relapse based on that alone.
There appeared to be some abnormality with the liver but this too was not clear.
The nodes in my neck were not big enough to be considered a sign of relapse.

Sounds good doesn't it. It's not really. The liver may be the cause of my constant fever.. it may not. Basically what a recent study has shown is that if the patient believes they have relasped there's a good chance they have. I believe I have relapsed based on the symptoms I have. They are identical to what I have had on all previous relapses (and I've had a few!).

We talked about having a biopsy on the nodes in abdomen, however they are still small and there's no guarantee that they can be located and biopsied successfully. I mentioned about my plans for Targa and he was aware of them. I said that as I have had no significant change in my health in the last six months other than the fever and cough, and weighing that with the CT scan showing no real disease progress, I'd like to leave things until early November after Targa before proceeding. He agreed that there wasn't much we could gain in the interim anyway.

We talked about my wish to take prednisone to reduce my fever and he agreed I could start the the prescription the week before Targa and continue them until the week after. This should at least offer me some degree of comfort while competing in the gruelling event. I couldn't imagine what it would be like to race for a week while running a high fever!

We discussed possible treatment options as well. In January this year I had a chemotherapy regime called IVE which wiped out all the cancer load I had at that time. I wished we had run to two cycles because it really worked well. Dr D'Souza said that IVE may be a possible palliative treatment given it's previous effectiveness. I agreed. It's still something I would not consider until maybe early in the new year based on how the disease is progressing (or not).

Then he mentioned a new drug that has just come onto the scene: Gemcitabine appears to show promise on previously heavily treated patients with refractory Lymphoma. This drug is currently not funded by Pharmac and would have to be funded privately at around $4500 a cycle, but that may not be too much of a problem and I have health insurance which may help.

So where does this leave me? Hmmm not sure. Probably back where I was five years ago, only with a slightly more treatment battered body. As the doctor and I both agreed on before we ended the conversation, I could be around for a few more years yet if the disease stays at a passive level and we keep on top of it. And that new drug looks promising!
There's always hope. No scratch that! There is only hope. Without it there is nothing. Positivity isn't an attitude, it's my reality. I have no room for the negative.

Sorry for the long boring medical post, it's my way of documenting my journey. Thanks for coming along with me :)

http://www.targalifechallenge.co.nz/