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[gardenFAIRY]

Diagnosed with Marginal Zone Lymphoma 10/18. Received 12 radiation treatments. Follow up Pet scan to be completed 2/23

[Andilynn]

gardenFAIRY, Best of luck with your treatment. I had splenic marginal zone lymphoma treated with 4 rounds of IV Rituxan followed by 2 years of maintenance. I’ve been in remission for two years. I hope you do well too.

~ Andilynn

[gardenFAIRY in reply to Andilynn]

Thanks for the good wishes. I've been fighting this since 2014. My first diagnosis was the more aggressive Diffuse large B cell lymphoma. Initial treatment was 6 rounds of RCHOP> I relapsed Just under a year later- and was treated with salvage chemo (RICE) followed by high-dose chemo and a stem cell transplant. October of 2018 is when the Marginal zone lymphoma showed up

[Lizard28]

Hi, I was diagnosed with NMZL stage 3 in June and finished chemo in November, I know it’s a rare one but I like to know all about it and ask questions. On my 2nd follow up apppointment my doc found another lump in my neck, on the merry go round again, X-rays, bloods and this is now 2 weeks since my biopsy to see if I’ve relapsed. Only six weeks after finishing chemo, I’m finding this situation difficult. I asked doc if it could change into a different lymphoma, she said no, which yours clearly did and I cudnt have maintenance for my type of lymphoma either. I’m guessing with you having radiotherapy , it was stage 1 this time. I would be interested to know your results. I really hope I’ve not relapsed so quickly as I thought I would at least get a year or so without going through it all again. It may be nothing fingers crossed. Can I asked how you coped with radiotherapy this time? Wish you all the best for your results.

[Onedayatatime2 in reply to Lizard28]

Lizard28, may I ask the results of the biopsy?

[gardenFAIRY]

Follow up pet showed no signs of lymphoma. There was some borderline uptake in my lung but the doctor feels very strongly that it is from the pneumonia I had in January. Another follow up CT scan in May

[Onedayatatime2 in reply to gardenFAIRY]

gardenFairy, congrats on your results! I’m assuming your doctor gave you breathing treatments or exercises to keep lungs clear and healthy. My husband isn’t fond of them but we’ve seen great results since his pneumonia and subsequent pneumonitis from this past June.

[gardenFAIRY in reply to Onedayatatime2]

They tried to give me an inhaler, but I wasn't able to use it. I nearly passed out after one puff

[Lizard28]

Hi, I so glad your results were good, what a relief. After three weeks of waiting I phoned my consultant only to be told she only works at hospital 3 days a week but she eventually called me back and said my biopsy came back suspicious and has ordered further tests from it. She said they don’t think it’s in the lymph node but it’s my submandibular gland. I did get an appointment letter to see her this Wednesday so I will know results hopefully then. What a wait, I’m a bit disappointed that she hasn’t called me, but I’m thinking it’s maybe good news but a call would have been nice. I will let you know.

[gardenFAIRY]

The original onologist that I had did not keep me up to date and that was very frustrating for me. I switched to a different doctor who seems to keep on top of things