Hello, I have been looking at the forum for a few months and wanted to introduce myself. I am 61, retired at 60 and just over a year later, at the end of September 2020, was diagnosed with FL. Like many of you, my symptoms were vague and I had no lumps or bumps. I had unusual chest wall pain then some abdominal discomfort. A raised CA125 test led to a CT scan which showed a mass in my left kidney, a pleural effusion and deposits in my liver and lymph glands everywhere. I was referred to urology and thought the worst, but a renal biopsy showed lymphoma and I was referred on to haematology. My treatment has been Obinutuzumab and CHOP, which I have tolerated pretty well. The worst thing has been terrible taste disturbance which means I can't taste my food.This eases off in the 3rd week of each cycle.
Now I'm at the stage of having my 6th cycle this week. Then there are 2 more treatments with Obinutuzumab alone, then a PET-CT to assess things. I was expecting to have 2-monthly Obinutuzumab for 2 years as maintenance, but my consultant has told me that they don't do that, there will be no further routine scans either, just wait and see what happens. I am concerned as I had no outward signs of lymphoma, it had probably been developing for the past few years, and just a vague sense of malaise made me go to get things investigated.
I read a post recently about no maintenance after Rituximab. Does anyone have experience of either having maintenance treatment, or not, after Obinutuzimab?
Hi Joy57
I did not have this particular type of cancer but I just wanted to take the opportunity of welcoming you to the online community.
I'm sorry that no one has responded to your post yet but I can see that you've joined in with the conversations in this post on a similar topic.
When you have a minute, it would be great if you could pop something about your journey so far into your profile as it really helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.
Wishing you all the best
"Never regret a day in your life, good days give you happiness, bad days give you experience"
