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Well the ESHAP didnt work so now all my treatment is to be done at UCLH. My cancer has also been recatagorised as Primary Mediastinal Large B-Cell. Its been guessed i have a 25% chance of survival.
Anyway for those of you who have had chemotherapy as an outpatient at UCLH and stayed in a hotel how did it work? Did you have to pay for all of your food? Did that mean having to eat out every night etc. How was the walk to the cancer center and was it easier and a nicer way to receive treatment?
Hi Kes I have seen others post with this type of lymphoma and it does appear to be stubborn and needs extra treatment, this link gives some info about a doctor at Bart,s you may want to speak too.
Read the posts from Buffboy he has a really hard time but has come out the other end and it is he that is recommending the doctor at Barts.
Always remember that stats are just that and who say's you will not be a good stat if I can find any posts fro people who have the same strain as you I will post you the links.
Take care john
we all know this is a roller coaster ride, where we ride blind, never knowing where the highs and lows are
Though my experience is not at UCLH I do know that heading that team is a really top class Lymphoma consultant, Professor Linch who is one of the advisors to the Lymphoma Association. We have met him and he was great.....I also have heard that there is now a new patient-stay facility and it's no longer an hotel, so there is no real reason for concern now!
My experience is actually at the Christie in Manchester, for our daughter who incidentally is now trying to raise funds to extend the transplant unit there! So much for recovering from a donor transplant, maybe it inspires one?!
Take care and do keep posting
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Hi Kes_a I hope I am doing this right and I have never replied before! I just wondered how you are getting along. I too have Primary Mediastinal Lymphoma and was diagnosed in August. I have currently had 4 R-CHOP and a CT scan last week has shown that my lump has decreased but is still 7cm x 5cm. They have said I should finish my last 2 R-CHOP and then have a PET scan to see how things are going. Clare
Kes, I hope by now you've been told about the new Mac unit at UCLH? apparently it is great with good care too.
Hope you are doing ok?
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