Lymphoma anyone?

[Naive]

I was wondering if anyone here has developed lymphoma.

Originally I was diagnosed with bone marrow failure of unknown cause, then MDS RAEB1, then back to bone marrow failure. Now I have CT changes of my chest that suggests Lymphoma. I’m currently having investigations to confirm the diagnosis.

I’m a bit confused.

[Hopeful]

Hi Naive,

I'm sorry to read of this turn in events! Although, I don't have lymphoma, it is a disease that I worry about. I hope the doctors can give you better, targeted treatment as a result of these tests.

How are you feeling otherwise?

[Naive]

Thanks Hopeful. I’ve seen the haematologist. As I have lung changes along with the enlarged lymph nodes, I am also going to see a respiratory physician. The haematologist has written to the respiratory doc and asked him to do lymph node biopsies when I’m having the bronchoscopy. I still have to wait on the PET scan to be done. I think there’s been some good news because they went back and reviewed a previous scan from 2 years ago and I had enlarged nodes back then too (makes you wonder why they missed it at the time) and the nodes have gotten larger but after two years you’d expect widespread involvement and besides a couple of spots in the spleen, two in the brain and two in my spine, it doesn’t seem to be a problem anywhere else.

As with most things medical, I’m powerless to change what is. I will wait patiently for all the investigations and deal with whatever they find when the time comes.

[Naive]

I’ve had the lymph node biopsy and I’m waiting for full results. It’s very confusing, the histology scientist who was in the OR when I was having the biopsies said he “thought” it looked like sarcoidosis on initial exam but have to wait for histology to confirm it. Then I saw my Doctor on Monday and I was telling him how grateful I was that it looked like it was “only” sarcoidosis and then the Doctor said that the interim report suggests that it could be sarcoidosis and lymphoma together but I still have to wait for the full report. Another week of waiting.

[Hopeful]

Hi Naive,

I just wanted you to know that I am thinking about you. I hope you get some direction with the full report. Hang in there!

[Naive]

I thought I’d let you know the biopsies were definitely sarcoidosis and not lymphoma. Now I have to have brain and spinal cord MRI. Neuro ophthalmologist review. Heart assessment (ECG,echo, holter monitor). EMG. I suspect when I see the haematologist I will have a repeat bone marrow biopsy to look for sarcoidosis as well. After these tests we may proceed to PET scan. I have tested positive for skin, spleen and lymph node sarcoidosis with suspicion that it is very widespread due to heart arrhythmia, abnormal liver function tests, high urinary albumin, central vision loss, and the spots on the spine and brain. On the one hand it’s good news..on the other hand...do I really need yet another disease...