Starting Treatment Again

In less than 2 weeks I have lost myself somewhere. In less than 2 weeks I suddenly have no energy, rapid heart beat, feeling of concrete in my arms and legs and everything is such an effort. Even small things leave me breathless. The AIHA is taking me over again.

On Monday I start treatment. It was to have been Campath, but it has now been decided to try FC again with Rituximab later. However, this morning my doctor phoned to say that my Creatinine test is low and although we are still going ahead with the treatment it will be a half dose. I am relieved as the last time FC was very toxic for me.

So the question is, how do I mobilise myself? Well meaning friends and family tell me I have done this before, and so I have. Three times. Three times with two remissions which have been good. But I have been warned to expect hospitalisation with infections and that this will be a very rough ride. My husband is very upset and we are both frightened. However, my hospital is excellent and the staff don't change much. I am part of the furniture there and sometimes I like to think I am a 'favourite patient'. The staff are so kind and caring.

Campath

I have been out of remission a year now and I have counted up how many times I have discussed my next treatment with various doctors. 14!!! Yes, 14!!!! Treatment ideas have swopped back and forth between FC, FCR, FCR + Luxillimab, Treanda + R, Chlorambucil + R, Campath with or without Rituxan. And so the choice has been made for me, for various reasons and it is Campath for the 2nd time. I don't know when but I know it will be soon. Where will I find the resources in me to mobilise myself for treatment 3 times a week? Three times a week doesn't sound much, but there is the travelling and then waiting to see the doctor, waiting for the Campath to arrive from the Pharmacy, waiting for a nurse to be free to administer the Campath and then waiting 2 hours after the Campath before I can go home. Since I have always felt the choice to be FCR or Campath, I was surprised my doctor chose Campath. He feels FCR is too toxic for me as FC gave me Sepsis the first time around. Campath was no picnic for me either, it gave me Pneumonia after 11 weeks of coughing, fevers and nausea.

I am still on the Prednisolone (5mg alt days) for AIHA and not feeling as well as I would like but the year coming out of remission has shown that my doctor was right, there was no need to rush into treatment. There has been more quality time than I expected.