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Your nephew had DLBCL stage 3
Your nephew had DLBCL stage 3 and only received Rituxan and radiation? Or did he receive Rituxan-based combination chemotherapy?
Sorry his dictation letter
Sorry his dictation letter from his doctor states he has recieved systemic chemotherapy with 8 cycles of CHOP with Rituxan since that letter he has had 5wks of radiation and 2 more cycles of second line chemo with Rituxan.
OK, so he had front-line
OK, so he had front-line therapy-- R-CHOP and radiation. And apparently his doc is not enthused about the results because he's now been started on second-line chemo. There are several possible regimens in second-line chemo for DLBCL, do you know what he's receiving? I might guess something like DA-EPOCH-R. Either way, it certainly is not the most encouraging thing, to have to begin second-line therapy, because after that, talk begins of a bone marrow transplant. So I would press this doctor for information-- such as, why do they think the R-CHOP failed? And what about his tumor- at the genetic level (meaning chromosomal rearrangements etc) makes them think that whatever he's receiving now will be any more successful?
He is receiveing second line
He is receiveing second line therapy not sure what it is they are referring him to UCLA for bone marrow transplant.The last time my nephew asked his Dr, what stage he was in the Dr.s response was let me go check your chart and he never came back!As for me I feel strongly that he is already in stage iv not only because of the spreading to his small intestine kidneys lungs and stomach but also his LDH levels stay in high range 407 to 288 I just wish I could get a clear answer which hopefully I will Monday now that I have permission to attend his appt. Thanks for the advice and I will definitly ask the questions you suggested!
No knock against UCLA- I got
No knock against UCLA- I got my bachelor's from UCLA- but if he has to have the transplant I would look into City of Hope in Duarte. They recently performed their 10,000th such transplant and they're one of 20 or so members of the National Cancer Institute's national comprehensive cancer network (nccn.org). UCLA is a designated comprehensive cancer center but City of Hope is, sorry alma mater, a step above.
Update not to good...Dr. says
Update not to good...Dr. says theres not much more they can do for my nephew his cancer is considered refractory. The R-CHOP NOR ESHAP has not worked and his last PET scan showed a mixed response meaning some areas improved some areas became worse. Went to USC they said there was nothing they could do for him but provide pallative chemo or try a "third line" chemo, said they had clinical trials but only if he had insurance. Its sad to see him in this perdicament. He is a graduate and was three days on his new job in the oil fields after working 4 yrs at a Smart and Final warehouse right after high school. so we all know how the no coverage for the first three months sucks but in his case it not only sucks he is dying because of it.
I'm sorry to read this. I
I'm sorry to read this. I would bet good money that the 'potential' third-line therapy they're talking about is an absolute piece of garbage known as pixantrone. It is currently under appeal by the manufacturer to the FDA, which absolutely slammed this crap last year. There are possibly other drug candidates in clinical trials right now, I would hope they would have the conscience not to discuss pixantrone (as it has been pitched as a potential third-line therapy). All pixantrone has shown is that it can make NHL patients really miserable in the last months of their lives. I am surprised hat he can't get into another trial though, insurance or not.
Do you know how or where to
Do you know how or where to inquire about other trials? and as far as his treatment yesterday they gave him Rituxin and today they gave him gemzar and oxaliplatin?