New to the group! Was diagnosed in 2016 and have been in a WAW for 3.5 years with stage 3 until a couple of months ago.
Blood work showed that I needed a second PET which showed an increase in activity, spleen enlargement, spots on lung, back area and a few other small spots. Started a conservative approach and did Rituximab for 4 treatments and had horrible rib pain after no 4.
Doc had me do another PET just 3 days ago to find that Rituximab wasn't hitting some break thru spots (on rib, lumbar, mid back and clavicle bones, not brightly lite up I might add). Spleen is back to normal and many of the nodes are either completely gone or hard to see so that's great.
Now being more aggressive and just completed my first 2 days of Rituximab/Benza 1st day and 2nd day just Benza chemo. Have already had some relief from rib pain.
I'll have another PET after my 2nd treatment to make sure we are on the right path and 4 more subsequent 28 day cycles after that.
This is my 1st 'rodeo' so to speak and I know a lot of you have very valuable info and personal experience to share. Would love to hear from you but being that I'm extremely sensitive and scared with this new turn of events, I'd like to have some positive reinforcement :)
Thank you in advance!
Hi Carolyn and welcome to the Online Community, although I am sorry to see you finding us.
I am Mike Thehighlander and I help around our NHL groups. I was diagnosed way back in 1999 with a rare type of T-Cell NHL, back then was seen as incurable and indeed told that “it would get me some day, some year” zoom forward to 19 September 2016 I was told that I was on Remission and NED (No Evident Disease)....... so just one positive story coming your way...... you can see my story and many others by hitting my forum name Thehighlander.
Taking with people who are on the same journey can help a lot. With over 80 types of Lymphoma we don’t have a group fee every one but can I direct you to this links to our very supportive Diffuse large B-cell lymphoma and our general Non-Hodgkin lymphoma groups as this will open up your concerns to a wider audience who know exactly what you are going through at the moment.
Just follow the links above, hitting ‘Join the Group’ tab just under the main group name, then go to the 'Start a Discussion' tab and set up your own Discussion and introduce yourself to the group - you could just copy an paste what you have in this first post.
I will keep an eye open for you ((hugs))
Thank you so much for your reply Mike!
What a fantastic story you have, yeah!
I'll follow up a little later with your instructions and get myself started, I do think it's important to have support outside of the stress this puts on our family members 
Sincerly,
Carolyn
