Lupus SLE/ Low grade Hodgkin lymphoma

[addai]

Hi all, I was diagnosed with SLE 30 + years ago, but more recently, I have been told that I have alow grade lymphoma , which has completely shook my world. I just wondered if there is anyone else, with both these disease and how.you cope?

[Lizard28]

Hi, I have skin lupus, mctd and a rare NHL.I was treated in 2018 with chemo for stage 4. It came back a month after treatment finished. ,I’m now on watch and wait as a lot of people are, it takes a while to get used to living with cancer. But I had “B” symptoms as well and I now know if I had all the symptoms my case would go to the Multi disciplinary team to decide when treatment would be started again. Seeing my haematologist for first time in October. Since covid,it’s only been phone appointments for a while. My bloods are also getting checked this time. If it’s only low grade without b symptoms, you could be on watch and wait for years and not need treatment. Mine isn’t curable but treatable. I know it’s hard but try and get on with your life, Check your neck, under arms and groin area regularly, I had it at side of my lungs and kidneys, under my arm and neck which were shown with a CT scan, I’ve not had one since my treatment but consultant usually checks these areas when I do see her. I would be a bit breathless if it was back at my lungs. I honestly thought I was just having a flare when I went to doctor at first then was referred urgently to an ENT consultant. My biggest symptom was losing weight with no explanation why, that would be a red flag for me. Take care xx

[addai in reply to Lizard28]

Thanks so much for your reply, I really did think I was alone. You've given me a lot to think about, specially checking myself. But you are also right ,in that I blamed lupus for aa lotof early signs/ symptoms. It was very last minute that I requested a blood check for cancer,and the result came back that I had MGUS. The paraprotein had increased with time, and now this is where I'm at.Still very early days, need to learn more about the whole disease, terms and treatments.

A big thanks and a warm hug,for your reassurance, stay blessed. xx

[Lizard28 in reply to addai]

My paraprotein was raised as well. I was just glad it wasn’t in the bone marrow biopsy. My ENT consultant told me it was more likely to be lymphoma even before all the scans and biopsies as I had auto immune problems which surprised me a bit. I wasn’t diagnosed with skin lupus at that time but when I asked my Rheumy about if it was connected, she just dismissed my question. Stickler for bloods only my Rheumy. I think she now takes me more seriously now I have finally been diagnosed formally.

[addai in reply to Lizard28]

Before the haematologist found the mass, I had bone and bone marrow biopsy, but the results was, insufficient samples. They had planned to redo this but haven't as yet ,but the mass biopsy was done twice because again, the.first was insufficient, but the second one confirmed what it was. So now I have been placed in the right department, and am on wait and watch!

[Lizard28 in reply to addai]

That’s good, at least you have been diagnosed and will be looked after on watch and wait. Take care xx

[addai in reply to Lizard28]

Thank you, you too. xx

[sparklesbw]

Hi addai,

I was diagnosed with non hodgkin’s lymphoma,in February of 1998. Over the last 27 years, I’ve developed, and still have a number of auto immune diseases, as a result of either medication, the disease, itself, or my defective immune system.

I just want to let you know the the lymphoma was the easiest of my challenges to deal with, once I got over the initial shock.

I am sure you have found out a lot more since you posted your message, and I wish you the best.

Barb W.

I found the following article, online, that may still be helpful:

“ It is believed that the elevated risk of lymphoma results from the disease process of lupus—specifically the overstimulation of B-cells coupled with defects in the immune system's surveillance system—and not just from medications or other associated risk factors.

hopkinslupus.org › lup...

Lupus and Cancer