OBINUTUZUMAB MAINTENANCE - two years

Hi again Christina Glann and sorry for not getting back to you sooner but the Community gremlins have been having a party

Great to hear that you are now at the end of your 2 year maintenance……  now it’s time to set the sails and navigate into that new future.

I am so pleased to hear the you have found this community a great help…… but also the very large community on the various Support Platforms that the main UK Lymphoma charity Lymphoma Action provide.

Talking can indeed help….. when you receive a Lymphoma diagnosis it is easy to go into a mind frame that convinces you that you are the only person in the world navigating this journey…….. how far is that from the truth.

Wonderful that you want to stick around and help others as they embark on their Lymphoma journey.

Looking forward to you coming in and using your first hand experience to support others ((hugs))

Thehighlander 

Hi Mike,  Me again.  Hope all is well.  I am just updating (as I said I would) on both sites now!! my final PET scan results.  I was a bit deflated, as in March 2023 "I had excellent response to treatment" and in May told I had reached 100 per cent remission.  However, consultant called me today with results of my Scan that I had last Monday.  Although not too concerned, she went onto say that there were a couple of nodes a bit "up" but also there was something in my nasal passages, and she will get ENT to follow up if needs be.  She asked if I had a cold or anything when I had the scan, and I did not, but told her that I found myself sneezing a lot!!  I am being followed by a telephone call in May with the CNS and I presume I am now back on active monitoring- not sure what to make of that as I did mention if I was still in remission and she said "she was not sure right now " or words to that effect  but she was very sure in March 23!.. and went onto say the usual that treatment will only be done if and when needed, which was told to me when I was on active monitoring for 6 years!  So I will take it up with my CNS when they do my telephone appointment.  I also feel very well and just get on as normal now.  I know I do feel extremely lucky to get this far with treatment and good results!!

Hi Christina Glann …… I did see your post on the LA site and you are getting some supportive replies.

My consultants (Heamatology and SCT) and my CNSs (Heamatology and SCT) will never use the 100% clear words….. “as we can’t be 100% certain…” so use NED (No Evident Disease) as their default reply.

I had ‘something’ new appear on my lung a few months after my second Allo SCT….. it was checked out and put down to “one of these unexplained things” it was further checked out fir a few years and nothing had changed so it has been forgotten about.

The main thing is you are well and getting on with life so let’s look for this to be the way forward ((hugs))

Thank you.  I will do my best like you.  As I said I will pop up now and then!  Happy Easter to you all.