Newly diagnosed with Non Hodgkins Lymphoma (low grade B cell)- freaking out

Hi..am really struggling with just being diagnosed with Non Hodgkins Lymphoma - all scary stuff.. looks like they are going to watch and wait..monitor it for a few months...keep thinking thats just giving it time to grow more..

if anyone has any experience of the watch and wait scenario would be grateful for any insights..

Thanks

A

  • Welcome to Cancer Chat A although I'm sorry to hear you've just been diagnosed with Non Hodgkin's Lymphoma.

    I know this must be very scary but I'm glad you've reached out to us as so many of our members will know what you're going through right now, so you are not alone, and hopefully those who have experience of being monitored for this type of cancer will be along soon to offer their support and share their experiences and advice.

    I hope this information we have about Non Hodgkin's Lymphoma, including what the watch and wait approach entails, will be useful as well, but if you feel it may help to talk things through with someone then our cancer nurses will be available today until 5p.m on 0808 800 4040. They're very insightful and will do all they can to answer your questions and put your mind at ease. If you're unable to get in touch with them today, they will be available again from 9a.m on 27th December.

    Kind regards,

    Steph, Cancer Chat Moderator

  • Hi Steph

    I am going through exactly the same - all started in August last year, had absolutely loads of tests done because my red cells kept dropping and 17 blood transfusions later they diagnosed me with having non-hodgkin’s lymphoma.  Started 4 treatments of Rituximab in January and that seems to have slowed the white cells from killing off my red cells.  In August last year my haemoglobin was around 45 but thank God it has now gone up to 118 so no more transfusions.  I am quite a complex case so my consultant tells me because my body makes too much iron (haemochromatosis) plus I have started with diabetes.  The hospital are monitoring me since this time and I have to go for blood tests every 3 to 4 weeks checking to see how my progress is doing.  I have to go back and see the consultant in May so fingers crossed.  There are 60 types of non-hodgkin’s lymphoma, not sure what actually starts it off - last year in March I started with my red cells sticking together and they thought it was cold agglutinin, then thought I perhaps had the Epstein Barr virus which is extremely common seemingly, another friend asked if I had used Roundup Weedkiller - we will just have to see what happens.  I don’t drink much at all and although I smoke - only up to 5 a day and I eat healthily and drink water which has gone through a filter.  Hang on in there - we will be fine!