Last week I had a couple of appointments at Wgtn hospital, a Chest Xray, lung function test and then a meeting with Darren Bowles the registrar who has been treating me for COP.
Both Sarah and I developed a cold/chest infection about four weeks ago and this has set back my recovery and length of treatment by a couple of months.
I'd been reducing the steroid dose by a 5mg a month and was on 20mg a day when I developed the cold and it's associated cough. The resulting lung inflammation was unable to be controlled by the lowered dose of steroid and so both Darren and I agreed that we should go back up to 25mg for the next two months and then start reducing again after that. I may need to go even higher if I show any signs of worsening. Doubling the dose is the first line of attack if I relapse severely.
Then it would be several more months before the dose was back to 20mg again.
It's a little annoying as I really don't want to be on prednisone any longer than I have to.
Some days the side effects are really bad, others they are no problem at all. Monday night for instance I was in intense pain in my lower back and hips for four hours and nothing I took or did would reduce it. I've had no pain since.
Yesterday I had my three month follow-up with Dr D'Souza my haematologist. It's now been over a year since my bone marrow transplant (stem cell transplant) and we covered a lot of stuff.
It's a bit like attending a medical lecture, the amount of information he pours out is incredible and I'm not sure if it's because he knows I like to hear all details or what, but I'm sure it would be lost on most patients .
I asked him if he had any ideas on the possible cause of my muscle cramps and we went through a few possible causes. There is a treatment, quinine, but it can cause a drop in platelet numbers and I have a low enough platelet count as it is (compounded by the steroids as well) so we excluded that as treatment and I've decided to put up with the cramps. I was pleased though that I knew quinine was not an option as I'd read about it's side effects when researching my thrombocytopenia a few years back.
I've been trying to reduce my dependence on Fluconazole, an anti-fungal drug I have been taking daily for over a year now. My severely compromised immune system leaves me open to fungal infections as well as virus's and bacteria. My T cell and CD34 counts are pretty much the same as a person suffering from AIDS, however there is very little research done in this area and the doctor said that although I have a CD34 count of just 200 there is no definitive comparison between that of a post autologous STC patient and that of someone with HIV with the same counts so we really don't know what to expect with regards to infection etc.
Hence he wants me to continue with the anti-fungal, start on a weekly antibiotic and strongly suggested I be taking a daily anti-viral as well. I really don't want to be taking fists full of drugs for the rest of my life and I voiced that concern with him. We agreed to take a wait and see approach to the anti-viral and I'll take the weekly anti-biotic as it will help guard against a repeat of the pneumonia I suffered last November.
Dr D'Souza said that some of the top overseas lymphoma specialists are now moving away from regular CT scanning post treatment and are now using it only to confirm involvement rather than look for it. He asked what I thought about not having regular scans and I said I'd like to have one mid year just to see what does or hopefully doesn't show up. The steroids shrink any activity in the lymph nodes, so even then it could well be a waste of time. Doesn't hurt to look I guess.
We are still settling into the new house. I've yet to complete the painting of the workshop, but hope to have it all done in the next couple of days. Then the hoist can be installed and hopefully I can start on the back-log of jobs I have booked from various customers who have patiently waited for me to get set up again.
...Ron
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