New diagnosis but experienced before

[Kaz1959]

Hi just been diagnosed not new to this as my late husband was diagnosed many years ago ..he died 9 years ago from.post transplant lymphona I have had many tests in past and its never shown up and now suddenly I have this ..I am in shock what can I now expect my GP has already referred me to a specialist..and I have an ultrasound next week I know treatment is better now..what am I likely to be offered in wat of that please

[navigatinglife]

Hi, sorry to hear your news, good that you have tests so fast. I was diagnosed and am still awaiting treatment. Some get it quickly, type of meds vary too dependant on what sub type etc you are. So many factors involved. I felt at first frustrated at having to wait so long and being pushed away. But I have used that time on research etc, basically treating myself as a whole person until I get nhs meds. Told I will be on MAVYRET but nothing as yet. It is very new drug from US so not much known. choice of meds & course duration varies. I hope you get yours soon, sure you will. Keep us posted. It keeps me going knowing others are being treated in the hope 1 day I can join them 😁😁😁

[Kaz1959 in reply to navigatinglife]

thank you for your reply I dont understand how I could have it or how it could have been missed for so long as I was tested many times so today I feel angry ...yesterday was sadness ..I just spoke to someone on a helpline which did help a lot ...he has advised I need to get a fibroscan so next stop is back to GP hope you get treatment soon xxx

[navigatinglife in reply to Kaz1959]

Same here, symptoms 10 yrs, they think maybe since 1989, caesarian, I was so shocked. Panicked, cried. The works. I knew nothing about this disease, maybe something kicked our hidden virus off. I had sinus surgery last yr, pretty gruesome so maybe that. I try not to think about it. I take each day as it comes. I had a fibroscan 2 wks ago. nothing since. Bloods take 6 wks here to come back so am in limbo. best wishes xx