Hi
Last year I was diagnosed with Follicular Non Hodgkin's Lymphoma
I had chemo antibody treatment from July to December
it was successful and I started the maintenance does of Obinutuzumab in January
In 5 of the 6 cycles I had an infection and ended up in hospital for 6 days with neutropinic sepsis
I started the maintenance dose in January and was ill with flu like symptoms for two weeks
I had the second dose in March and for the past two week I have been unwell - flu like - problems with eyesight - dizziness and having to sleep most of the day
Talking to the team at the treatment centre they say most people don't have issues with the maintenance dose
So is it me or have others similar experience ?
if so what was done to improve the situation?
I run a business and this is making it increasingly difficult and we are very keen to go on holiday but cannot book anything while I am frequently unwell
Hi Lemsford and warm welcome to the Macmillan Online Community although sorry that you had to find us and especially sorry to hear about your Lymphoma diagnosis. I am Mike and I help out around our Lymphoma groups.
I was diagnosed way back in 1999 at 43 with a rather rare, incurable but treatable type of Low Grade Non Hodgkin’s Lymphoma eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ may be different from yours I do appreciate the challenges of this journey rather well....... and yes, infections are unfortunately part of life..... my main infections all happed after I had completed treatment - See my story
The New to Community is like our reception desk where we try to direct you to the best part of the Community for you to get support. The Community is actually divided into dedicated Support Groups (Discussion Rooms) so can I recommend you join and post in our dedicated……
Follicular Lymphoma support group.
This group is a are safe place to talk to others with a similar diagnosis, treatment experience, to ask questions and get support.
To connect with a group click on the “Bold Italic Link” I have created above …… then once the group page opens click in the [Black - Click to Join - Banner] that appears at the bottom of the page and this will then confirm that you have joined the group.
When you are ready……. you can introduce yourself by putting up your very own post by clicking [ + Create new post] or [ + ] in the top right of the group page.
You can copy and paste the text from this post into your new post.
I will keep an eye open for you but if you are not sure what type you have pleased do get back to me on this post and I will help you out further.
