Marginal zone lymphoma

[ush1401]

Hi all, I wondered if anyone has hone through what I have been going through, sorry for long post. Last october I stopped using Methotreaxte injections as they were making me feel ill. I had veen using them for about 8 years which was great until the adverse reaction. December I had an xray due to ongoing cough then got called in for a scan. Just after Christmas I was told I had nodules literally every organ was showing them. I was with every team available, pet scan took place, guided lung biopsies etc, attempted kidney biopsy.

I refused steroids as I listen to my gut instinct, but was started on mycophenolate.

As teams carried on investigating what was going on further scans were showing nodules were disappearing themselves. Which was great.

Anyhow now the one that hasn't left is in the stomach which has been diagnosed as marginal zone lymphoma. I had a pet scan last night to see if it has spread, monday got to discuss radiotherapy.

Has anyone been through this? Been told this is due to sjorgrens or immusuppresants, .Do I refuse to take them and see what my body does?

[StriatedCaracara]

Newer biologic treatments may counter both. Chemo for lymphoma whilst also suppressing autoimmune condition. I think wiser choices can be made. Hoping best decisions are made and wishing you all the best. Take care

[ush1401 in reply to StriatedCaracara]

Thank you, since pet scan they confirmed lymphoma is localised. Radiotherapy is what they plan. Checked if mycophenolate will have any reaction they think not. Fingers crossee