Hi a bit of background first! My fiancé was diagnosed with stage 2 3b follicular non Hodgkin lymphoma back in 2012. He has R CHOP and rituximab maintenance and has remained disease free for almost 10 years
A few months ago he started noticing he was getting less “fit” as he thought. He is 52 and has a manual job so he was thinking he’s just getting older. After going to the doctor for blood tests his doctor called him and told him to go straight to A&E as his red hb levels were 5.9. He was given 2 bags of blood and put on a course of B12 injections and sent home with “Pancytopenia” written on the discharge letter
He continued to feel weak despite the blood and B12 and then started getting excruciating lower back pain, this went on for a couple of weeks but when paracetamol, ibuprofen and codeine weren’t helping we went back to A&E as he was in agony. Another blood test showed severe anaemia again so he was admitted. 2 weeks into their investigations they could find nothing other than some “cellular matter” in his bone marrow that they had seen on a spine MRI so were doing a bone marrow biopsy
While all this was going on he had a really bad headache one day and I noticed his eye was really bloodshot. The next day it became really droopy and the doctor also noticed so he was sent for a head MRI. It came back there was a lesion on his brain
The BM biopsy was inconclusive so they have now done a lumbar puncture. The doctor says they are 99.99% certain it’s lymphoma again based on his symptoms but until they know the type they can’t start treatment
He has got worse since he’s been in hospital and he’s been in 4 weeks now with no confirmed diagnosis yet. The pain is mostly under control but he has literally no strength to walk or sit up or even feed himself. He is zonked out most of the time and when he’s awake he’s slurring his words and occasionally seeing things
Does anyone have any experience of this? It’s pretty scary how quickly he has deteriorated! We have been told he is likely to stay in hospital until past his first lot of chemo as he is so unwell and not fit enough to come home.
Hi Coco65 and a warm welcome to this corner of the Community although I am always sorry to see folks joining us. I am Mike and I help out around our various Lymphoma groups.
I don’t have CNS Lymphoma but I was diagnosed way back in 1999 with a rare, incurable but treatable type of Non Hodgkin’s Lymphoma Stage 4a so although my Lymphoma ‘type’ is different I do appreciate the challenges of this journey rather well.
This has been a scary time for you both but let’s look for his team to get a clear diagnosis and put a plan in place.
We have had a few members with CNS Lymphoma or supporting family so let’s see them pick up on your post.
Although the thought of this type of NHL is scary it is very treatable with good results. In these circumstance a hospital stay will be necessary but he is in the best place at the moment. I had a lot of time in hospital over my years of treatment but felt well supported and safe.
I always highlight the Lymphoma Action website. The Bold link above are taken for the site. Lymphoma Action is a small but very active UK Lymphoma Specific Charity who have lots of good reliable information, videos and run regular Lymphoma Online Support Groups with a few groups specifically for Family and Carers...... I highly recommend these groups as there is nothing better than talking with other who have walked the journey.
They also have a Lymphoma helpline on 0808 808 5555 where Sharon or Nic will be on hand to give you some support - open every week day from 10 till 3.
Always around to chat and support as best as I can ((hugs))
