Just got my diagnosis today. Low Grade Non-Hodgkinson spleen Marginal Zone Lymphoma. Still not sure what it means but I understand it is treatable but not curable. I also have to have a MRI on my pancreas next week. I'm rather scared as my husband died from Bile Duct Cancer less than 2 years ago. I've been told I will be having rituximab infusions over 4 weeks in July. This will be in the same hospital room as my husbands failed chemo and I'm worried that I might have a panic attack when I go to the department. I will be going on my own. I've had MGUS for about 10 years and think this is a development of that. No symptoms apart from some sweating at night which has been getting worse over the past couple of months. weight loss but that could be down to grief or moungaro injections (I'm also diabetic) and tiredness - all of which could have been explained away. I've also been told that a Macmillian Nurse will ring me this week and I will meet them when I next see the specialist.
Hi Clancy1976 and a warm welcome to this corner of the Community although I am sorry to see you joining us and sorry to hear about your diagnosis and also a put your husband…….
I am Mike and I help out around our various Lymphoma groups.
First I would definitely raise your concerns with your team about being treated in the same treatment unit as your husband was……. I was the same with a very good friend that passed away.
I don’t have Splenic Marginal Zone Lymphoma but for some context I was diagnosed way back in 1999 at 44 with a rare (8 in a million) incurable but treatable type of Cutaneous T-Cell NHL (a type of slow growing Low-grade non-Hodgkin lymphoma) ……. eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell NHL (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so although my Lymphoma ‘type’ is different I most definitely appreciate the challenges of this journey rather well.
Living with and being treated for a slow growing Low-grade non-Hodgkin lymphoma is a mindset…… as you see I have been doing this for over 25 years…. I turn 70 at the end of the year and I am still living a great life….. you have to take a long term view.
Both my consultant and CNS described the journey with slow growing NHLs to be like living with a chronic health condition…… like in your diabetes…. but the big difference is…. in diabetes you are on treatment for life and if it goes wrong it can go wrong quickly…… but with low grade NHLs it is only treated as and when required…… and does not tend to get out of control.
I had a lot of treatment over the years due to having 2 types of NHL (See my story) but between late 2013 and May 2014 I had over 600hrs of Rituximab as part of my 6 cycles of aggressive R-EPOCH and had no real challenging issues with the treatment.
Any questions do put them up as someone will be able to help out ((hugs))
Regardless the staging in lymphomas….. these are very treatable and yes, let’s look for a long term remission.
