Hi all. I was diagnosed in2015 with follicular lymphoma after a very long and distressing time as I am sure lots of you can relate to. I had 6 rounds of rcvp and reached a good remission. During the last 5 and 1/2 years since treatment finished I have had periods of time when I have felt quite unwell with similar symptoms to my original ones. I had a ct scan just over a year ago after feeling unwell for several months to be told I was still in remission. Good but felt I had made a fuss over nothing. I was sent back to my gp who started me on thyroxine which helped with my fatigue my dose has since been increased. However I am now suffering from same symptoms as before, fatigued, feeling of distension in my abdomen and breathless especially after eating. I am also suffering from sweats day and night and some itching. I know follicular lymphoma can wax and wane but anyone got any idea how long this usually lasts? I have spoken to my specialist nurse and have an upcoming appointment with my consultant (why is it always a 3 week wait!!) I am really worried that there will be nothing to find if I eventually have another scan (no doubt after a further 3 week wait!!) and am left feeling like a hypochondriac once again. Have any of you lovelies had a similar experience?
Lynne
Hi Lynne and welcome to our corner of the Community.
First we do have a dedicated Follicular lymphoma group so it would be worth putting your post up on there as well.
When it comes to the ‘what if’s?’...... you never should feel guilty about pushing for answers. FL does wax and wane over the years and incurable blood cancers like this (I have a different type) need to be seen like a chronic illness that will require regular checks and where required treatments.
I have been on my crazy journey for over 21 years so got into rhythm of treatment then being clear-ish. I never felt I was being a hypochondriac or a burden on my medical professionals...... I was always told “this is what we are here for”...... so go with the flow and see what you are told.
Yes, the waiting, done a awful lot of this over the years, is hard but during these crazy COVID times getting an appointment within 3 weeks is short of a miracle.
Always around to listen ((hugs))
You should be able to copy and paste the text from your first post.
I will assume you are on a mobile/tablet.
Put your finger on the screen over the first word and two blue dots will appear on each side of the word, drag the right dot and this will expand the ‘copy’ box, once you have all the text press ‘copy’
Open up the FL group page and start a discussion as you did with this one. Touch the screen and hit ‘paste’ when it comes up and the text should show up.
I totally get how you feel. I have been talking with many people over the past months and folks are getting appointments candles out of the blue with no new dates 
I remember the first 14 years of my journey (hit my name to see my story) and it was a continuous round of treatment, scans, waiting, more waiting then repeat..... gradually getting more and more challenging as the years went on but you will get there.
