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Old Sun Oct 28, 2018, 09:06 PM
Naive Naive is offline
Join Date: Jul 2016
Location: Gold Coast, Queensland, Australia
Posts: 74
Lymphoma anyone?

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. Iím currently having investigations to confirm the diagnosis.

Iím a bit confused.
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Old Sat Nov 3, 2018, 01:45 PM
Hopeful Hopeful is offline
Join Date: Jan 2009
Location: California, USA
Posts: 689
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?
52 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. Tried slow cyclosporine taper over 4+ years. Platelets fell, so back on cyclosporine. Trisomy 6 clone in 5% of cells.
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Old Mon Nov 5, 2018, 08:19 PM
Naive Naive is offline
Join Date: Jul 2016
Location: Gold Coast, Queensland, Australia
Posts: 74
Thanks Hopeful. Iíve 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 Iím having the bronchoscopy. I still have to wait on the PET scan to be done. I think thereís 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 youíd expect widespread involvement and besides a couple of spots in the spleen, two in the brain and two in my spine, it doesnít seem to be a problem anywhere else.

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