Sep 08, 2013 - 11:06 pm
My son who is 18 now was dx PRIMARY MEDIASTINAL DIFFUSE LARGE B CELL NHL in jan 20013, stage 3 advanced
we were upset as shud be. he was intially given 4 R chops followed by petsacan. about 70 % of the desease had gone the lymphoma was only left in the 6th rib and primarry mediastinal region rest of the places it had vanished, like L%< S$ , coller area etc, majorly was left in mediastinal region. about 8 cms big as compared to the initial 17 cms. we all were thrilled and happy that R CHOP is working well on him. 2 more RCHOPs suggested followed by pet, now the horror came back to haunt us, the lymphoma progressed, from 8 cm to 10 cms in size, although no new lesions seen, little bit still left in the 6th rib also. now salavage treatment suggested by doc, R DHAP all of them above were done in an interval of 21 days as was RDHAP. petscan again done after this 2 RDHAP, again there is remission but partly not CR. nw the size goes down drastically low. say nw it is 6 cms, again happy not completly as were expecting complete remission. Dr said idally there shud be 2 more R DHAP but we convinced lets hve one more first and then do pet. again nw the desease shows progression not much as mediastinal is stable, but 6th rib progressed little bit and new lesions seen in kidney. this was too much terrifying, didnt knw where to go what to do. Although doc had earlier suggested will go in for Autologus stem cell transplant, but that has best results when there is complete remission. met many other docs in different hospitals showed my sons report got there advise . 2 senior docs suggested go for 1 more chemo HYPER C VAD and then followed by high dose chemo ( BEAM ) and then stem cell transplant. also we were suggested to do stem cell harvesting before going for any new chemo regimen. we did harvesting nw after lot of consultation our doc decided to try R ICE. at the moment on the 3rd day of R ICE sitting besides my son, who is confused if he will survive and i m as usual feeling pity and sad for him. Anybody cud suggest if whatever is happening is common or it happens. if the lymphoma shws progression again then waht to do or if the r]lyphoma shws remission but not complete then shud we do another RICE before the stem cell transplant or go for the transplant immidiately, our next pet is due on 30th sept. waiting eagerly for the replies.