Hello, I am new to the forum, although I have been following it since I was first diagnosed in March. I found many of the posts useful and inspiring. I live in the US on the west coast, so it is the middle of the night here.
First, a little background. I was diagnosed with stage 2be bulky cHL back in March after over a year of undiagnosed itching, and eventually unexplained weight loss and night sweats. I had 2 cycles of ABVD however my interim PET scan was positive so I was upgraded (or downgraded depending on your point of view) to 4 cycles of escalated BEACOPP. I had a follow up PET/CT in September and it came back positive with metabolic activity in a new lymph node in my neck compared to my interim PET. The lymph node was surgically removed and the pathology came back positive for cHL. I was not terribly surprised by this result as my itching had come back and actually would have questioned the result if the pathology was negative and probably would have asked them to find something else to biopsy. Still, all of this was a hard pill to swallow and I'm still trying to come to terms with it.
The plan going forward is that I will get a port inserted tomorrow (I previously had a picc which was removed) and will start a 3 cycle combination of bendamustine + brentuximab vedotin on Monday (assuming the insurance agrees, otherwise I will get in-patient R-ICE). This is a relatively new treatment recommended by a specialist referred to me by my oncologist (both of whom are part of the same medical organization but at different sites in my city). There is a paper published in April this year showing success with this protocol as a salvage therapy for relapsed or refractory HL. If this treatment does get me to remission (or near enough), then the plan is for me to have an autologous stem cell transplant around the end of the year and after sufficient recovery I will get radiation and 16 cycles (11 months) of brentuximab vedotin.
I was wondering if anyone has any familiarity with bendamustine + brentuximab, or either of them for that matter. Did it get you to remission? I'm worried that since the ABVD and BEACOPP didn't get me to remission, that this might not work either. How hard was the treatment, what side effects did you have? I've heard from the doctors that it falls somewhere in between ABVD and BEACOPP, but I'd like to hear more from someone who has actually been through it.
Happy Birthday Mark! 
I hope that you have a great birthday today. Enjoy some cake and ice cream. Do you have a favorite dessert? You’ve earned it 
.
Have fun with your friends tonight and family tomorrow. I probably don’t need to tell you, but take it easy and don’t wear yourself out.
I hope that you are able to avoid GvHD. When will you know (or have confidence) that you got past it?
Take care and have fun celebrating another year.
Jason
Sorry to hear this Mark but this indeed can be part of post SCT life. Good that nothing concerning was found and enjoy being at home with the family.
I missed my 60th birthday completely so had to celebrate it the following year. 
Hi Mark,
I’m sorry to hear that you have had such a 
week, both figuratively and literally. I’m sure that the swollen lymph node in your groin gave you quite a panic. I’m glad that it was negative.
I hope that you enjoyed your birthday evening with your family.
Hi everyone
I keep meaning to come on the site and post but one thing (or a little person!) or other distracts me and - 'poof'! - chemo brain strikes and it's gone...!
Jason- so glad to see you continue to be all clear, hope you are managing to get back in to a more 'normal' life! It's amazing to see that B&B has managed to get you to CR and keep you there without a transplant! I bet it feels strange kind of stopping there after all the fuss of being prepped for transplant! I remember seeing you write on here that you didn't want to join the SCT group - perhaps you already knew somehow you wouldn't need it in a deja vu kind of way ;-)
Mark - great to see how well you are doing too, even with your horrible hospital stay recently. It must have been terrifying. I hope you are doing okay at the moment? And that the GVHD hasn't progressed too much? I've always hated people saying it to me, but I see how amazing you have been through all of this and think you are so strong. I really admire you for your courage, determination and for managing to keep a sense of humour through all the shite!
I am doing okay, lots more energy. Getting physio for a weak core - apparently lots of chemo and having 3 children can wreak havoc on your body, who knew?! - and am having a bit of tummy trouble which is being monitored. Re the tummy though, I think it is the Acyclovir twice daily that does it. Don't tell them, shhhh, but I haven't taken it for a month and I've had zero issues (I was having random sickness and diarrhea, comparable to a tummy bug, at least once per week..). I'm also waiting for an ultrasound on my neck as I have a slight swelling one side. They have felt it and aren't overly concerned, so I have been waiting 6 weeks so far and it hasn't grown in that time. I'm guessing (and hoping) it is scar tissue or fluid build up!
Also, Baby turned one just over a week ago... 1!!!?? Wow. It's been one hell of a year that's for sure!
Hope each of you are keeping well and I will try and drop in more! Think of you all often 
Xx
