Fingers crossed that there are no ill-effects: Today I have come off the dexomethasone (steroids.) As a consequence of that I have also stopped taking the lansoprazole. The lansoprazole is meant to protect my stomach from the dexomethasone, but lanzoprazole itself has undesirable side effects when taken for a long period including liver damage and diarrhea so I will be glad if I can give it up. If all goes well then from now on, clomipramine will be the only drug I am taking specifically for the brain tumour.
I'm still suffering from excessive looseness of the bowels. It is not particularly bad, just annoying. If it doesn't clear up soon with this reduced medication I guess I'll have to see the doctor. Diarrhea seems to be a common after effect of chemotherapy so there may not be much the doctor can do about it.
I'm more concerned about the breathlessness and spinning head I experience after climbing the stairs. I'm even less steady on my feet than usual and have almost fallen over a couple of times.
My weight this morning was 97.8kg, the highest it's ever been and my legs feel like I'm wearing concrete shoes. It's hardly possible to eat less without going on a starvation diet, which isn't recommended as I need strength and energy for my recovery. Hopefully stopping the steroids will help with the weight gain. I really hope that with the end of treatment my fitness will start getting back to normal.
Julian, best of luck to you. I have not had the chance to read back but will do. The reason I found your blog was my brother Andrew (37) was diagnosed with a brain tumour 3 weeks ago. They are not sure if it is glioma or lymphoma - they cannot biopsy due to location. We are due results of latest scan tomorrow and i have been researching what can be done if it is glioma (docs told us only palliative care would be given) - found chlomipramine, and in turn found your blog. I have spoken to his doctor earlier in the week and will speak to neurologist tomorrow about treating him with chlomipramine. If you think of anything I should know/ask, please let me know if you can.
ReplyDeleteMany thanks and best wishes
Kev
Kev,
ReplyDeleteI think on the NHS you are entitled to ask for a second opinion. Have you contacted the Macmillan nurses in your area? They can be very useful.
Treating brain tumours is an off-label use for clomipramine and some oncologists aren't keen on it. I am getting it prescribed by a sympathetic GP. I printed off some of the papers linked from my blog and highlighted key points to explain why I wanted it.
Good luck!
Thanks Julian, We have contacted the Macmillan nurses.
ReplyDeleteI did the exact same you did, printed papers and gave them to the doctor. We should be meeting them later today.
We'll see what today brings
Kev