I was diagnosed with HL 2E on 06/30/10. I received 12 rounds of ABVD. At the end there were some little spots that were left. A biopsy was performed and they were negative. I just went back for my 3 PET. Guess what...spots got bigger on the PET. A biopsy was done 5/9/11. Yep, that dirty sucker revealed the cancer is back. I am going to the BMT/SCT center on Tues. I am pretty terrified!!! I am more scared of the treatment than the cancer at this point. I have no choice, but to do it because I have 2 young children that I have to live for. Can someone please give me their first hand experiences with SCT/BMT??
I'm sorry to hear about your recurrence Monilv. Have your doctors discussed brentuximab vedotin with you? it's a novel drug awaiting approval by I think September by the FDA that is designed to treat relapsed or refractory HL, quite possibly just like yours. it's still circulating in clinical trials but the application is in at the FDA and considering the positive data and the enormous buzz about the drug, approval is a foregone conclusion.
At any rate, that may not be until the fall. if someone doesn't contact you about HSCT experiences, let me know and I can hook you up with someone.
Thank you for your response. He did mention that drug to, but mainly as a last resort if the HSCT didn't work. I am trying to be as optimistic as possible during this stressful time.
Hi monilv
Ive been cancer free for 16 years after have a stem cell transplant it wasnt an easy road.. Getting to the point of transplant is tough I personally has a lot of bone pain from them injecting me with neprogen to my make my stems cells come faster when it was time to harvest it took 4 hours to get the stem cells needed 3 types of cells adult cells, teenage cells, and baby cells well the machine that harvast the stem cells on picks the baby cells. After that they froze them until I was ready to enter the hopsital once i was there they gave me some harsh cemo pills that killed my bone merrow at that time they moved me from a regular hospital roon until the bone merrow trnsplant roons I thought of the movie Bubble boy. once I was in this room they gave me back my stem cells from that point there were steps I was suppose to be in the hospital for 30 days I was home in 15. From that day forward my life has changed. My young son at the time was 16 and today he is 32 and has his own children if I didnt take the road i would of missed out on alot. I had to put my life on hold but after its all over we go back to living our lifes again. Stand Strong I hope this was helpful.