About Me: Female, Auckland, New Zealand, member since Jun 2012
Diagnosed at the end of March 2012 with Marginal Zone Lymphoma Stage 4 with 28% Bone Marrow Involvement, in April diagnosed with HCV, in May with severe liver fibrosis. Also in May HCV was determined to be genotype 1b with C/T allele. Started Triple tx on 1 Nov 2012, it
[More] became double on 2 Nov due to severe nausea. I restarted Incivek at the end of week 4, UND after 4 weeks on Incivek but will still treat for 48 weeks. Finished tx on 2 Oct 2013 and was UND at EOT and at 4 weeks PEOT. Waiting for the 24 weeks now. Lots of post tx symptoms. Lung nodule and serious joints pain.
Hope this finds you well!! I lost almost 30 lb while on tx, but as soon as I stopped all medications, my weight came back even though I was walking more than I had ever done before as we were camping in the mountains. I still seem to be gaining and I have never had a weight problem. I had clothes adjusted at the seamstress as nothing fit. Now everything is tight. Not sure if others had this experience and does it stop. I am now going on 11 months post tx. Do you know when we get our 1 year. Is it a year from stopping tx or a year from starting tx?
Have a great Day and weight gain is really not so much after what we have been through. The devil himself I think created this virus. Thank God for SVR
Hang in there. Life gets better fast, At least it did for me. I had to do incivek for 12 weeks but could only do 9 because of severe side effects. As soon as I stopped it, it got much easier. Now I feel as it was all a nightmare. My nurse told on my first visit, the worse you feel, the better the meds are working. I think she might have been right but was probably not suppose to tell me that,Good Luck. Keep fighting and so sorry you have to go through this.
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