hey laura, my name's loren. i'm 18 and have been diagnosed with hodgkin lymphoma stage 2, having my second chemo monday, and ive just made a vid but its stupidly out of sync :(. still i think i get the point across and i think its rle cool you and others and doing this to help other ppl in our situation. its nice to see these, espesh since you're being really positive about everything :) ill continue to document and hope our vids help others yh ;) great to see you're doing so well xx
Glad to hear you're alright! Was concerned when I didn't see any updates. Currently in hospital with febrile neutropenia - my white count was 0.13 - undetectable neutrophils - platelets 5. This is what mini BEAM does. Had Gem-P, only got me to PR. Had Brentuximab which didn't work. They're hitting it with everything they've got. Needs to respond then on to Allo transplant with BEAM-Campath. Who are you seeing at the Marsden? I had a mean consultant there so I had to flee..
@lucho52 Ah hello :) sorry for the lack of updates, been waiting for a good time to make a new video because everything changes so frequently it's hard to keep up myself! I'm on retuximab which I'm guessing is a similar antibody therapy to the brent? Hope you're not feeling too rotten with the lack of counts, how are you finding the BEAM? I hope that you're able to get home before Christmas. My consultant is Dr Potter, I just think of him as the Lord of Lymphoma!
@laughingoutloudlaura Yeh feeling pretty good at the moment - how I'm feeling and the shoddy state of my marrow don't correlate! I'd tell them to hit me up with some more mini BEAM if it weren't for the fact I don't have an immune system. Brentuximab is targeted against Hodgkin's cells with a payload of poison - no side effects.. but barely an effect. I had Cunningham (the less said the better!) - saw Mark Ethell once (nice guy). Are they auto-ing or allo-ing you?
@lucho52 Hope you get out of hospital soon! I think retuximab must be the non-hodgkin's equivalent then, it seems to be working a treat on trimming down both cancers on me but we are all so different! I don't think Cunningham is there anymore (I'm guessing you were in Bud Outpatients?) but Dr Ethell, or 'tall doctor' as we liked to call him for the first 6 months of not knowing his name, is lovely :) I'm being auto-ed, been doing my injections ready for harvest this week, do you have a donor?
@laughingoutloudlaura Cunningham is head of the Lymphoma unit - an abrupt devil-like glaswegian (I was treated at Fulham Road private patients but Cunningham works at both branches). I'm now at UCLH under Prof Linch (haematology) & Karl Peggs (transplant) - so much happier here! Are they going to try to get you to CR before transplant? It's probably impossible for me as my disease is so damn resistant - that's why I'm going straight to allo. Have a donor lined up :)
@lucho52 Well, I'm glad to know that you are in a better place to be treated now, it's so important to have a consultant who is understanding and isn't just all about pumping enough drugs into us and sending us away to shrink our tumours as if it's the easiest thing! My tumours are responding really well to Gem-P so they are giving me a 5th cycle because they think I will be able to get into remission before transplant which would be reassuring I suppose :) when will you have your transplant?
@laughingoutloudlaura Finally got out of the hospital yesterday.. pesky blood poisoning! My hair also started falling out like a bastard yesterday so I buzzed it all off with the clippers we used to use for grooming our dog haha. Hopefully the transplant will be right after the next cycle of whatever Prof Linch mixes up for me. Will you be having a PET to confirm your remission before transplant? Yeh I know what you mean about that attitude - Cunningham was like - take it or leave it...
hey laura, my name's loren. i'm 18 and have been diagnosed with hodgkin lymphoma stage 2, having my second chemo monday, and ive just made a vid but its stupidly out of sync :(. still i think i get the point across and i think its rle cool you and others and doing this to help other ppl in our situation. its nice to see these, espesh since you're being really positive about everything :) ill continue to document and hope our vids help others yh ;) great to see you're doing so well xx
willowmoon50 1 month ago
thank you for the video. great to see that you are doing well...keep smiling, everything will be fine:)
grovestballer 1 month ago in playlist Uploaded videos
laura your hair is soo rad in this video... it's a similar colour to mine 2/3 years ago!
You are doing soo well... really miss you! We should have a day out to brighton when you are all better and tap our feet away!!! x
scarlettrj92 1 month ago in playlist Uploaded videos
You are a beautiful beautiful wonderful human being and i love you xxxxxxxxxxxxxxxxx
georgie1717 2 months ago
Glad to hear you're alright! Was concerned when I didn't see any updates. Currently in hospital with febrile neutropenia - my white count was 0.13 - undetectable neutrophils - platelets 5. This is what mini BEAM does. Had Gem-P, only got me to PR. Had Brentuximab which didn't work. They're hitting it with everything they've got. Needs to respond then on to Allo transplant with BEAM-Campath. Who are you seeing at the Marsden? I had a mean consultant there so I had to flee..
lucho52 2 months ago
@lucho52 Ah hello :) sorry for the lack of updates, been waiting for a good time to make a new video because everything changes so frequently it's hard to keep up myself! I'm on retuximab which I'm guessing is a similar antibody therapy to the brent? Hope you're not feeling too rotten with the lack of counts, how are you finding the BEAM? I hope that you're able to get home before Christmas. My consultant is Dr Potter, I just think of him as the Lord of Lymphoma!
laughingoutloudlaura 2 months ago in playlist Uploaded videos
@laughingoutloudlaura Yeh feeling pretty good at the moment - how I'm feeling and the shoddy state of my marrow don't correlate! I'd tell them to hit me up with some more mini BEAM if it weren't for the fact I don't have an immune system. Brentuximab is targeted against Hodgkin's cells with a payload of poison - no side effects.. but barely an effect. I had Cunningham (the less said the better!) - saw Mark Ethell once (nice guy). Are they auto-ing or allo-ing you?
lucho52 2 months ago
@lucho52 Hope you get out of hospital soon! I think retuximab must be the non-hodgkin's equivalent then, it seems to be working a treat on trimming down both cancers on me but we are all so different! I don't think Cunningham is there anymore (I'm guessing you were in Bud Outpatients?) but Dr Ethell, or 'tall doctor' as we liked to call him for the first 6 months of not knowing his name, is lovely :) I'm being auto-ed, been doing my injections ready for harvest this week, do you have a donor?
laughingoutloudlaura 2 months ago
@laughingoutloudlaura Cunningham is head of the Lymphoma unit - an abrupt devil-like glaswegian (I was treated at Fulham Road private patients but Cunningham works at both branches). I'm now at UCLH under Prof Linch (haematology) & Karl Peggs (transplant) - so much happier here! Are they going to try to get you to CR before transplant? It's probably impossible for me as my disease is so damn resistant - that's why I'm going straight to allo. Have a donor lined up :)
lucho52 2 months ago
@lucho52 Well, I'm glad to know that you are in a better place to be treated now, it's so important to have a consultant who is understanding and isn't just all about pumping enough drugs into us and sending us away to shrink our tumours as if it's the easiest thing! My tumours are responding really well to Gem-P so they are giving me a 5th cycle because they think I will be able to get into remission before transplant which would be reassuring I suppose :) when will you have your transplant?
laughingoutloudlaura 2 months ago
@laughingoutloudlaura Finally got out of the hospital yesterday.. pesky blood poisoning! My hair also started falling out like a bastard yesterday so I buzzed it all off with the clippers we used to use for grooming our dog haha. Hopefully the transplant will be right after the next cycle of whatever Prof Linch mixes up for me. Will you be having a PET to confirm your remission before transplant? Yeh I know what you mean about that attitude - Cunningham was like - take it or leave it...
lucho52 2 months ago
love you laura <3 dina x
bridget1234 2 months ago
:D you should do more of these, so gd to know what your up 2 :) xxxx
NessyScott 2 months ago
you are going to be fine..
arizaliit 2 months ago